tag:blogger.com,1999:blog-55641027735560169392024-02-18T18:48:37.026-08:00The Boston KnightsJenn Knighthttp://www.blogger.com/profile/17068200258878833318noreply@blogger.comBlogger126125tag:blogger.com,1999:blog-5564102773556016939.post-56390791861078259872020-09-20T14:47:00.002-07:002020-09-20T14:53:02.556-07:00Marathon Musings<div class="separator" style="text-align: justify;">Kurt says because I only post when I'm sad now, it sounds like I'm always sad. :) I mean, that's not <i>wrong</i>, really. But it's also not entirely right. I feel so many things and sadness- unfortunately- plays a soft bass accompaniment to all of them. Sure, it can mute the quiet tones, but it also accentuates the loud ones. Funny how that is. Since I often speak more in the abstract than the concrete, let me try to use a (probably overused) comparison to explain. </div><div class="separator" style="clear: both; text-align: justify;"><span style="text-align: left;"><br /></span></div><div class="separator" style="clear: both; text-align: justify;"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY3U6lnyHwLGKFgi5L_2j5Rs0yjeTpGBPNg6_nESjuQKt4lxbz7onyvBSk9mKsUusjEQyO45DR-ZIpKaHAdd1UhmNNjKmDwqf2hVw0Igz_O7iH1MpJyi1hIxVYsKUiFw3N9SEAiKJS0Ynp/s2048/IMG_0001.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1536" data-original-width="2048" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY3U6lnyHwLGKFgi5L_2j5Rs0yjeTpGBPNg6_nESjuQKt4lxbz7onyvBSk9mKsUusjEQyO45DR-ZIpKaHAdd1UhmNNjKmDwqf2hVw0Igz_O7iH1MpJyi1hIxVYsKUiFw3N9SEAiKJS0Ynp/s320/IMG_0001.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">The local news did a story with us in it. See it <a href="https://youtu.be/IZV2aDRc8No">here</a>. <br /></td></tr></tbody></table><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: justify;"><span style="text-align: left;">On Monday (9/7), I finished running my second Boston marathon (for charity). I raised money for the MGH pediatric cancer center where Madi was treated. I am not a natural athlete. I do not run because I'm particularly good at it; I run because it is hard for me. I run because the physicality of the difficulty mirrors what is happening to me emotionally. There are times when every step hurts and all I can do is moan and ask (sometimes loudly), "Will this ever end?" </span></div></div><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7xQqREXhpYR7VefdqezzImwI9DIfagVO4LzGqq5Mz9NBIuCzXdjkC9ARhAyOKIq9MzwSjbTCsrmKsP0KrtixRA6jQTli6Y6DFZP-_XzI8H8lCfjAm6_FId9g-DV1c8h2QncGWzvecckeN/s2048/Charles+River+running.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7xQqREXhpYR7VefdqezzImwI9DIfagVO4LzGqq5Mz9NBIuCzXdjkC9ARhAyOKIq9MzwSjbTCsrmKsP0KrtixRA6jQTli6Y6DFZP-_XzI8H8lCfjAm6_FId9g-DV1c8h2QncGWzvecckeN/s320/Charles+River+running.jpg" width="320" /></a></div><div style="text-align: justify;">Because I feel that so frequently emotionally, it gives me great satisfaction to feel it physically. Why? Because when I feel it physically, it is so real and tangible and visible. And every time I'm in physical discomfort - because it has happened so much - I can see that it is short and it will only be for a few minutes. Afterward, I may not be able to feel my strength immediately, but I will. The next time the discomfort rests on me and I feel like I want to die, I will feel my muscles and their increased capacity. </div><p></p><p style="text-align: justify;">Sometimes sadness feels oppressively hard because we can't feel it the way we feel sore muscles. The stabbing pains in our hearts, the swift force of memories in our minds, the tightness in our chests or stomachs... they all feel so real, but there's no way to measure them, to track them, to follow the curve of their progression. </p><p style="text-align: justify;">But when I run, all I have to do is keep moving. It may not be pretty, but I just have to keep moving. They say that sometimes the ugly runs are the ones that help us the most because that's where the growth happens. We stay consistent when we really just want to give up. I measure my emotional progress in the increase in satisfaction I feel in all good feelings. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoCk3LWVn6bPLVG8pzFt-wiYscInje16LIo9_qeSoETxVLB7JXB5B6Lp7IewMvkpZ0VlolbrPI03q_Gt8DxEukzINVDnjO5XU8Ht2u1AFDzlzvElNDfduNA832BZyaX9QHTv9OU0QELx54/s2048/sunrise+running.JPG" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoCk3LWVn6bPLVG8pzFt-wiYscInje16LIo9_qeSoETxVLB7JXB5B6Lp7IewMvkpZ0VlolbrPI03q_Gt8DxEukzINVDnjO5XU8Ht2u1AFDzlzvElNDfduNA832BZyaX9QHTv9OU0QELx54/s320/sunrise+running.JPG" width="320" /></a></div><p>When I see a gorgeous sunset, I now want to sip it in, a millisecond at a time and braid it into me, along with the feeling of the wind and the sound of the crickets. I feel the rise and the fall of Anna's chest when I hug her, a twinge of joy with every breath she effortlessly takes. I love watching my tween and teen trip all over themselves because their bodies are awkwardly figuring out what they are eventually going to be. They are growing! YES! And William's screechy protests because he is so tired from waiting for me to lay with him too late at night. I even soak those in along with his soft relaxing cuddle into me, so relieved that I am next to him. These moments jump out now when they hid behind the mascarade of busyness before. I am so intensely happy moment to moment, even when I'm also very, very sad. </p><p><br /></p><div class="separator" style="clear: both; text-align: justify;"><span style="text-align: left;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijcE4HyrIJ1ekvhbeAxMqMQpJ_Iy1Hz6wjkql6mbqp-hMlUBnSo1CL0pwxAtYmr68JT9TB9bPcm8AFkgYXHDzY9D5saK8bwZtwXfUh407ZKkEulGAyDZ559ZkkxaQhMdMA06QQN0ceub_t/s1080/finish+line.JPG" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="924" data-original-width="1080" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijcE4HyrIJ1ekvhbeAxMqMQpJ_Iy1Hz6wjkql6mbqp-hMlUBnSo1CL0pwxAtYmr68JT9TB9bPcm8AFkgYXHDzY9D5saK8bwZtwXfUh407ZKkEulGAyDZ559ZkkxaQhMdMA06QQN0ceub_t/s320/finish+line.JPG" width="320" /></a></div>This is the closest way I can think to describe how I felt as I crossed the finish line on Monday surrounded by my friends and family. I hurt. Every part of me hurt. But I cannot imagine how I could have felt more fulfilled and happy. I could hardly stop the tears from coming. Without all the grief and the madness of pandemics and racial struggles and murder hornets and wildfires and floods and the discomfort of uncertainty... without all of that, the amplitude of our capacity to feel joy and love and appreciation would be lower. Without the tears of pain I shed at mile 18, I would not have truly appreciated the tears of joy I shed at mile 26.2. </span></div><div class="separator" style="clear: both; text-align: justify;"><span style="text-align: left;"><br /></span></div><div class="separator" style="clear: both; text-align: justify;"><span style="text-align: left;">I feel like all my posts come back to this point: the necessity of opposition. The yin and the yang, the good and the evil, the sun and the moon. One cannot exist without the other. Joy and pain have to co-exist. We cannot remove one without destroying all of it. </span></div><div class="separator" style="clear: both; text-align: justify;"><span style="text-align: left;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhq031kXMLmhowU4J7xRMOsusYhAZRTVGqSWrLYrTfmh8RGQ5YEOlb9VAGlE4fIcuoLRp-fKII1I3soUHCyOEkR1gl-bDlCYBKJqDy3ihjJTvFFUzLKoH5bI8JAYg0GKStwdrpStE0tydCb/s474/OIP.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="333" data-original-width="474" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhq031kXMLmhowU4J7xRMOsusYhAZRTVGqSWrLYrTfmh8RGQ5YEOlb9VAGlE4fIcuoLRp-fKII1I3soUHCyOEkR1gl-bDlCYBKJqDy3ihjJTvFFUzLKoH5bI8JAYg0GKStwdrpStE0tydCb/s320/OIP.jpg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: left;"><span style="text-align: justify;">So I am cradling it all inside me and recognizing it. Maybe 2020's woes are not God cursing us. Maybe the pain and sadness that all these afflictions have left in their wake are not sending the message that there is no God. Maybe God is hoping they will clarify our perspective. Maybe hardships and adversity are tools that will help increase our ability to feel peace and joy. Maybe we are growing stronger by living through the difficulties. </span><span style="text-align: justify;">I do know I never fully appreciated how good it felt to walk until I had run so many miles. Relief always comes. Hope is hidden- and discovered -in the pain. </span></div><div class="separator" style="clear: both; text-align: justify;"><br /></div><div class="separator" style="clear: both; text-align: justify;"><br /></div><div class="separator" style="clear: both; text-align: justify;"><br /></div>Jenn Knighthttp://www.blogger.com/profile/17068200258878833318noreply@blogger.com3Boston, MA, USA42.3600825 -71.05888019.7325473028695413 -106.21513278220901 74.987617697130446 -35.902627417790981tag:blogger.com,1999:blog-5564102773556016939.post-34185872590616644202020-07-16T13:19:00.000-07:002020-07-16T13:45:12.251-07:00Whatifitis<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<div style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; margin-top: 0in;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzzeJKv_hZJDhwb6aNkQdt1FEwXA19rfhOKXH-9XCSNoxjUW7k7UxkD17KRMpdhpheJ1dvFkiAVA5If4g-F7VTP_ZJrqYL9nqt7SwE200hquFB3mPzJgai8zm8CYvcVMG3yRzhOG2eVj19/s1600/018.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="843" data-original-width="843" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzzeJKv_hZJDhwb6aNkQdt1FEwXA19rfhOKXH-9XCSNoxjUW7k7UxkD17KRMpdhpheJ1dvFkiAVA5If4g-F7VTP_ZJrqYL9nqt7SwE200hquFB3mPzJgai8zm8CYvcVMG3yRzhOG2eVj19/s640/018.JPG" width="640" /></a></div>
<div style="-webkit-text-stroke-width: 0px; clear: right; float: right; font-variant-caps: normal; font-variant-ligatures: normal; margin-bottom: 1em; margin-left: 1em; margin-top: 0in; orphans: 2; text-align: start; text-decoration-color: initial; text-decoration-style: initial; widows: 2; word-spacing: 0px;">
<br />
<br />
<br />
<br />
<br />
<br />
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: black; font-family: "" "arial" "" , serif; font-size: 11.0pt;"><br /></span>
<span style="color: black; font-family: "" "arial" "" , serif; font-size: 11.0pt;">This morning- Madi’s 15th birthday- I
woke with the familiar weight of grief pressing down on me. I laid in
bed, immobilized by it, alternating between looking at pictures and videos of
Madi and just staring at the wall, crying. Kurt, my kids, my mom, my
sister, my nieces and nephews all tried to get me out of bed. I couldn’t
move. It hurt so much. I couldn’t do anything except cry and wonder
all the what ifs all over again. </span><span style="color: black; font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; margin-bottom: .0001pt; margin: 0in; orphans: 2; text-align: start; text-decoration-color: initial; text-decoration-style: initial; widows: 2; word-spacing: 0px;">
<span style="font-size: 11pt;">Somewhere in between the raw pain of
watching a loved one pass from this life and the oppressive sadness of trying
to heal from the trauma is an empty space. The perpetual motion of life
continually fills the space whether we want it filled or not. My space
has been host to many things in the 2 ½ years since we lost our kids. But
perhaps the most debilitating of all them is what I now call,
“whatifitis.” After having met and gotten to know many people who are
mourning a lost loved one, I am convinced now that this is part of the grieving
process. We seem to go through a period of asking, “what if?” Specific or
general, it doesn’t matter. The end result is always the same, “What if things
had been different?” I call it whatifitis because if left untreated, this
little sickness can destroy a person with a finality that rivals death itself. </span><br />
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwIqhIlq3ROkWhLpErhUfR7ijrezW8eQVJNvxx56iZCdA2mqaXWQPGTJCjUSmXmLX92aH7tVJVRN9jtG7rylUBw-aBFMPOL0jtXoXXngKw93M7lNoFJDBDCmr20S5VujCfrboEVd1eCi-R/s1600/IMG_6292.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwIqhIlq3ROkWhLpErhUfR7ijrezW8eQVJNvxx56iZCdA2mqaXWQPGTJCjUSmXmLX92aH7tVJVRN9jtG7rylUBw-aBFMPOL0jtXoXXngKw93M7lNoFJDBDCmr20S5VujCfrboEVd1eCi-R/s320/IMG_6292.JPG" width="320" /></a><span style="color: black; font-family: "" "arial" "" , serif; font-size: 11.0pt;">My own whatifitis induced doubts about
how we had handled the situation with Madi. What if we had found the
tumor sooner? Would it have bought us more time with her? What if
we had recognized her little headaches as more than something benign and gotten
an MRI after the cancer had just taken root? Going back even farther,
what if something environmental caused the cancer? What if that house we
lived in when she was little made her sick? What if we had moved sooner?
What if everything she experienced really had been in our control and we could
have managed our way out through detox or supplements or diet changes or
juicing or strict lifestyle regimens or jumping on the trampoline or increasing
water intake? With Frederick, what if something I ate or put on my body
affected his development? What if I had changed A,B, or C? Would he
be a healthy normal 2 ½ year old right now? What if I had just gotten a
C-section when we saw his heart-rate was dropping? Would that have bought
me more time with him or just sped up the process of losing him? And then
there are the emotional what ifs. What if I had not spent enough time
with Madi? What if I had not gotten my Master’s while she was a baby- would I
feel better now having all those hours of study and class time with her
instead? Would I feel less sad that she was gone? What if I had
spent more time imparting truths and knowledge to her that I had hoped she
would accumulate over a very long life? What if I didn’t hug her enough?
Tell her enough I loved her? What if, what if, what if…. Now push fast
forward and add about a million more questions and you’ll get a good idea of
how my whatifitis felt. </span><span style="color: black; font-size: 13.5pt;"><o:p></o:p></span><br />
<span style="color: black; font-family: "" "arial" "" , serif; font-size: 11.0pt;"><br /></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: black; font-family: "" "arial" "" , serif; font-size: 11.0pt;">I found myself engulfed in what ifs
every day for a very long time. Sometimes I could distract myself, but
whenever that quiet emptiness opened up, the endless questions would come and
beat me down into agony. Perhaps you have gone through this or had
similar questions about someone who has experienced a tragedy. Every question
seems to trail off at the end with the unspoken...<i>everything would be better
now if only I could fix the what ifs….</i></span><span style="color: black; font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqc18K-99BLYLT-hMorF9fsdcHHtUzlrJApuP8ayj_TWSKw1M2FkC7DGqZrCJd6IN7SeddhnCLcxcbGvax4jv7DwQYKseU1DOvFH0cJScnkyKfUkrfcH-RjTTgFm0gWpx49M-8usu8eelb/s1600/IMG_3216.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqc18K-99BLYLT-hMorF9fsdcHHtUzlrJApuP8ayj_TWSKw1M2FkC7DGqZrCJd6IN7SeddhnCLcxcbGvax4jv7DwQYKseU1DOvFH0cJScnkyKfUkrfcH-RjTTgFm0gWpx49M-8usu8eelb/s320/IMG_3216.jpg" width="240" /></a><span style="color: black; font-family: "" "arial" "" , serif; font-size: 11.0pt;">I think it was several months after
Madi and Frederick died before I realized how sick whatifitis was making
me. I felt tortured, desperate for relief. My therapist pointed out
one day that the what-ifs are endless. There is no way to get past
them. Even if I could go back and fix everything I felt had gone wrong, I
would find - like every go-back-in-time movie shows- that there would be a
whole new crop of what ifs to take their place. I realized that the heart
of whatifitis was my unwillingness to recognize how little control I had over
life. No matter how much I try to hamster-wheel my way through avoiding
any kind of possible calamity, ultimately I am at the mercy of mortality. I
will eventually succumb to its bitter end. Knowing this and accepting this are
two very different things. </span><span style="color: black; font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; margin-bottom: .0001pt; margin: 0in; orphans: 2; text-align: start; text-decoration-color: initial; text-decoration-style: initial; widows: 2; word-spacing: 0px;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: black; font-family: "" "arial" "" , serif; font-size: 11.0pt;">One of my friends who had also lost a
baby not long after I had told me that she used the what ifs as a reminder that
she needed to remember all the “I’m so glads.” Whenever she had the
thoughts, she would take a few minutes to slow down and remember her son and
everything she loved about him. Just like a fever is an indicator that
something is wrong in our physical body, she took the fever of whatifitis to be
an indicator that she needed to slow down and let her body grieve and be still
for a few minutes. And heal. This helped me immensely. </span><span style="color: black; font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: black; font-family: "" "arial" "" , serif; font-size: 11.0pt;"><br /></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 11pt;">I also started imagining death as a
person (who in my apparently gender-biased mind was a man). I always saw myself
in a rocking chair on the front porch of a house in Indiana (where I grew
up). When I saw Death walking around, instead of running to hide, I
pulled my tired body off my front-porch chair and started walking with him.
He seemed happy to have company, and I felt relief as we walked with my hands
tucked into my front pockets. On my walks with Death, I find I am growing in
respect for him and what he allows me to feel. He is so very wise with a
wickedly dry and honest humor, though he doesn’t speak much. I think
that’s less because he has nothing to say and more because he only speaks when
asked questions. I find myself enjoying the familiarity our walks provide
me. </span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjK4kFmBq69iWZm66dqOmPdVJEo7JIETI4YNTOPuw7zhLLvMFg0RvhbF25a6AtH7YiKuu_tphdRtZntsUDSsvOu5WHegpJ5nUMCJM-qXDoAWdBCIOejJ6xKqBeQhECFD_kgkIe2cr2MXudx/s1600/Mort.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="385" data-original-width="520" height="236" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjK4kFmBq69iWZm66dqOmPdVJEo7JIETI4YNTOPuw7zhLLvMFg0RvhbF25a6AtH7YiKuu_tphdRtZntsUDSsvOu5WHegpJ5nUMCJM-qXDoAWdBCIOejJ6xKqBeQhECFD_kgkIe2cr2MXudx/s320/Mort.jpg" width="320" /></a></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: black; font-family: "" "arial" "" , serif; font-size: 11.0pt;">So this morning as my mind started
spiraling down toward whatifitis again, I decided to stop and take a stroll
with my good friend, Death. I asked him questions like, “What would Madi be
like at age 15?” And he gave me some shrewd and hilarious
observations. I asked him how life after death shapes a person, and how
often those who have passed on can see those they love on earth. I asked him if
they think about their deaths the way we do, if they remember what it felt like
to die, if it sticks with them the way it sticks with us. We walked and talked
and I cried and laughed and then it was time to say good-bye to him. I
imagine I will still see him in the distance for the rest of the day, walking
around. It’s ok. While our time together staves off the whatifitis,
too many walks with Death can make me forget about the life I have left to
live. </span><span style="color: black; font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; margin-bottom: .0001pt; margin: 0in; orphans: 2; text-align: start; text-decoration-color: initial; text-decoration-style: initial; widows: 2; word-spacing: 0px;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: black; font-family: "" "arial" "" , serif; font-size: 11.0pt;">Happy Birthday to my sweet and beloved
Madi! She would have rocked this world had she stayed, but has likely
rocked the next world already. Always a step ahead, she was… And while
I’m still starving for the feeling of her cheek on mine or her arms hugging me
the way she used to do, I am feeling awfully grateful for the beauty she’s left
in her wake. I’m grateful she introduced me to Death, even though it took
me a long time to appreciate him. I hope in some capacity, she is
celebrating with us today. </span><span style="color: black; font-size: 13.5pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<br /></div>
Jenn Knighthttp://www.blogger.com/profile/17068200258878833318noreply@blogger.com4tag:blogger.com,1999:blog-5564102773556016939.post-91517802809303836272019-12-20T14:59:00.001-08:002019-12-20T15:07:51.446-08:00Receiving Gifts <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnfUEPetLraOGQ9A3Yob2Ktvvv1qhpUCFAfaq9Bqts2uL1_KG6a-AvN39cdmf0NKYit-IIg281d4q-Y0HePo3mgcKxGoWrltqt7rfkUDmGiZJyG-hd4n7d4CR43HxYdGJsYHiQzJU0Fxcb/s1600/thumbnail_GoodHarbor46edit-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="853" data-original-width="1280" height="425" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnfUEPetLraOGQ9A3Yob2Ktvvv1qhpUCFAfaq9Bqts2uL1_KG6a-AvN39cdmf0NKYit-IIg281d4q-Y0HePo3mgcKxGoWrltqt7rfkUDmGiZJyG-hd4n7d4CR43HxYdGJsYHiQzJU0Fxcb/s640/thumbnail_GoodHarbor46edit-1.jpg" width="640" /></a></div>
<br />
<div class="MsoNormal">
Well, it looks like I am in the bad habit of only posting on
here for special events. And that last post- while accurate- was a bit
depressing to leave hanging in the air for 10 months. I try to put our blog
address on our Christmas card every year as a way of forcing me to write
something at a very challenging season. <span style="mso-spacerun: yes;"> </span>Madi
absolutely loved Christmas.<span style="mso-spacerun: yes;"> </span>She lived
for it, she loved the decorating, the cooking, the parties- she loved it
all.<span style="mso-spacerun: yes;"> </span>She started getting excited about
it right after Halloween and would always go through a slight depression when
it was over.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
She loved everything about it, but giving presents was
likely her favorite part.<span style="mso-spacerun: yes;"> </span>Gift-giving
was definitely her love language and it came out especially during the
Christmas season.<span style="mso-spacerun: yes;"> </span>She would plan out her
presents for others in great detail, making sure she had enough money to buy
what she wanted for them, taking care to wrap them carefully.<span style="mso-spacerun: yes;"> </span>One year, when she was only 9, she knew how
much I loved Hamilton (the musical).<span style="mso-spacerun: yes;"> </span>I’d
never seen it.<span style="mso-spacerun: yes;"> </span>She knew her robust savings
of $10 would not allow her to buy tickets, but she knew I also loved books and
would likely really enjoy the book about the musical (which she’d seen at her
friend’s house).<span style="mso-spacerun: yes;"> </span>She didn’t have enough money
to buy it on her own, so she convinced (coerced?) her siblings to pool their money
and buy the book for me. <span style="mso-spacerun: yes;"> </span>I was floored! <span style="mso-spacerun: yes;"> </span>A group gift from a 9 year old, a 7 year old, a
6 year old, and 2 year old! <span style="mso-spacerun: yes;"> </span>She was
elated to see my surprise when I opened the book.<span style="mso-spacerun: yes;"> </span>Giving gifts brought her so much joy!<span style="mso-spacerun: yes;"> </span>I often felt guilty watching how deliberate
and thoughtful she was about the gifts she gave because I am not really like
that by nature.<span style="mso-spacerun: yes;"> </span>She certainly taught me
how much joy you can bring to others by giving good gifts.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
Since Madi has been gone, her gift-giving has continued (at
least that’s what it feels like).<span style="mso-spacerun: yes;"> </span>Before
I lost my babies, I had a healthy skepticism about “messages from beyond.”<span style="mso-spacerun: yes;"> </span>I thought it was really nice that people
found comfort in little “signs” they saw around them, but the stories all
sounded so… hokey and frankly not real. NOW, I have much different
feelings.<span style="mso-spacerun: yes;"> </span>If there really is a somewhere
beyond and people who move there are still as close as they feel, how would
they communicate with those they love?<span style="mso-spacerun: yes;"> </span>What
if the other side has some kind of spiritual “Alexa” that can send birds, rainbows,
songs, or even people to those they love at critical moments?<span style="mso-spacerun: yes;"> </span>Since Madi and Frederick died, there have
been too many coincidental moments for me to ignore or pretend away.<span style="mso-spacerun: yes;"> </span>I really believe that Madi (especially) knows
what will get our attention and uses those things to help us know she’s still
around. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I have so many stories of these occurrences - from little
things<span style="mso-spacerun: yes;"> </span>like hearing songs she loved to bigger
things like the magnificent rainbow that stretched across my mom’s backyard on
her birthday, right as we were there blowing out candles on her favorite ice
cream cake. <span style="mso-spacerun: yes;"> </span>I still think these stories
sound a bit hokey, which is why I don’t often share them.<span style="mso-spacerun: yes;"> </span>I used to talk about them all the time, but
when I started to see the same slightly skeptical look in people’s eyes that I
often had before, I realized how it sounded and I stopped talking. It really
does sound strange, but the connection I feel is the real zinger.<span style="mso-spacerun: yes;"> </span>It’s that same feeling I’ve felt in the past-
like someone is standing behind my shoulder.<span style="mso-spacerun: yes;">
</span>She just feels so close.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
One of the songs I have heard repeatedly at very interesting
moments is the song, “Thousand Years” by Christina Parry.<span style="mso-spacerun: yes;"> </span>Madi loved this song and used to listen to it
a lot.<span style="mso-spacerun: yes;"> </span>After she died, I started hearing
the song a lot more.<span style="mso-spacerun: yes;"> </span>I noticed it
because they were in really odd ways (i.e. someone humming it, a violin street
performer playing as I passed, one of my kids’ friends requesting to listen to
it as we drove in the car, etc…).<span style="mso-spacerun: yes;"> </span>I
think the reason these instances stood out to me is because they came at
moments when I was full of longing for Madi. <o:p></o:p></div>
<div class="MsoNormal">
One night, I was laying with Anna as she was trying to fall
asleep.<span style="mso-spacerun: yes;"> </span>Anna looks remarkably like Madi
did when she was four.<span style="mso-spacerun: yes;"> </span>I will sometimes pretend
as I’m holding Anna that I am holding Madi again.<span style="mso-spacerun: yes;"> </span>I was doing that on this particular night and
I thought in my head, “Oh Madi, I miss you so much.<span style="mso-spacerun: yes;"> </span>What would I give to hold you again!”<span style="mso-spacerun: yes;"> </span>Right as I thought this, the song, “Thousand
Years” began to play on our Alexa. Tears streamed down my face as I listened closely
to the lyrics, “I’ve loved you for a thousand years, I’ll love you for a
thousand more.” <span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Choosing to believe that my girl is still going the extra
mile to send me gifts can be hard sometimes.<span style="mso-spacerun: yes;">
</span>I mean, of course a woman who lost two children would look for ways to
feel close to them still.<span style="mso-spacerun: yes;"> </span>The first
thought that comes to my mind after every one of these gifts is that same ‘ole
skeptical, “yeah, right. Like every song I hear is coordinated by a dead child
who is hanging around.<span style="mso-spacerun: yes;"> </span>This is exactly
what a grieving mother would want to happen.<span style="mso-spacerun: yes;">
</span>It can’t be real.”<span style="mso-spacerun: yes;"> </span>But every time
I choose to believe, I feel fuller and lighter and a little bit closer to
her.<span style="mso-spacerun: yes;"> </span>I will never know if these gifts
are real or not, at least not until I’m in the same place she is.<span style="mso-spacerun: yes;"> </span>But how would I feel if when I see her again,
she says, “I tried so hard to reach you, but you just wouldn’t listen!!!” <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
On our Christmas card, we have a picture (of course taken by
the talented Dawn Wessman) that we took on the beach this summer.<span style="mso-spacerun: yes;"> </span>That beautiful sunset (lasting for almost an
hour) felt like a gift from Madi and Frederick, sent to comfort me during that
really hard day.<span style="mso-spacerun: yes;"> </span>It was our first
planned family picture without our babies and I cried for the whole day leading
up to them. We brought stuffed animal stand-ins for Madi and Frederick, but the
sunset made me feel like they were actually there, surrounded us with light and
love. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Receiving these gifts have made me more cognizant of how a
loving Father in Heaven might also be trying to communicate with me.<span style="mso-spacerun: yes;"> </span>I try to focus more, listen more, and pay
more attention to things going on around me.<span style="mso-spacerun: yes;">
</span>And I see things I never saw before.<span style="mso-spacerun: yes;">
</span>I feel so much more connected to the love that my father in heaven must
feel toward me because I truly choose to believe He sends me gifts to show me
he is there and available.<span style="mso-spacerun: yes;"> </span>This is
especially the case this holiday season.<span style="mso-spacerun: yes;">
</span>It has been really hard, but we have also received so many other-worldly
gifts that we have felt comfort and peace in large measures.<span style="mso-spacerun: yes;"> </span>That doesn’t erase the hurt, but it certainly
makes it easier to breathe through it.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
Happy Holidays to all of you!<span style="mso-spacerun: yes;"> </span>We hope you receive gifts this holiday
season, too, and feel enveloped in joy and love.<span style="mso-spacerun: yes;"> </span></div>
<br />Jenn Knighthttp://www.blogger.com/profile/17068200258878833318noreply@blogger.com3tag:blogger.com,1999:blog-5564102773556016939.post-54387570378508599952019-02-15T08:19:00.000-08:002019-02-15T08:19:08.672-08:00The Day<div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgL2m5EPQDxg_PkC9twnG-t-d8_0wT2a-Lq5fkGNBDBTBvrYUnOBXrql6_ULiCRoS52CCCr3SB9PC-gVvysO1JUsupNMsFKW5rSLNrCjVsRtARQ-iZ-_76OBO15wBnrtWPQvaxuEMPEIYnH/s1600/Memorial-11.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1281" data-original-width="1600" height="256" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgL2m5EPQDxg_PkC9twnG-t-d8_0wT2a-Lq5fkGNBDBTBvrYUnOBXrql6_ULiCRoS52CCCr3SB9PC-gVvysO1JUsupNMsFKW5rSLNrCjVsRtARQ-iZ-_76OBO15wBnrtWPQvaxuEMPEIYnH/s320/Memorial-11.jpg" width="320" /></a>Well, here we are. Madi has been gone for one year. 52 weeks. 365 days. 525,600 minutes. And trust me when I say we have felt her absence in every. single. one. The weight of this day has been pressing down on me for months, each day increasing the pressure a little bit more. Flashes of conversations, snippets of memories, smiles and hugs and tears and pain have showered over my brain in an immaculate torment. Sometimes, the pace is so quick and the gravity so strong that it immobilizes me completely. I sit and must succumb to it all. </div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdGhp-K4IWDQoQ_45qoo9dz6tJws_7uH2AbdKOAeeABxb7MkQFXCX3fKWsozdYn9PoFEAEsm8eLc8ipgZwiTYiu8NmNnsIVnlTj1YCyHrg-HUpNofSNCx7celC59AvLvzSOdNOMcVrbC3V/s1600/Memorial-37.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1280" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdGhp-K4IWDQoQ_45qoo9dz6tJws_7uH2AbdKOAeeABxb7MkQFXCX3fKWsozdYn9PoFEAEsm8eLc8ipgZwiTYiu8NmNnsIVnlTj1YCyHrg-HUpNofSNCx7celC59AvLvzSOdNOMcVrbC3V/s320/Memorial-37.jpg" width="256" /></a><br />
The last week stole any hope of normalcy, with my demons stealing my breath in great gulpy sobs, squeezing my lungs and gouging my eyes for long stretches of time until I sit empty, but somehow still full of sadness and grief.<br />
<div>
<br /></div>
<div>
That's the reality, folks. Loss really takes the wind out of your sails. </div>
<div>
<br /></div>
<div>
I was up this morning at 3am, waiting for that last whispy memory to come crashing into my mind again. I saw her again slipping from her broken body and going... Truthfully, I am really not sure where. Where did she go? I again saw myself lying beside her hugging her, Kurt hugging us both until they had to take her away. </div>
<div>
</div>
<div>
And then that's where the memories kind of stop a little bit. I call this "The cloud time." This is when the cloud that has been around my head for the last 12 months descended and set up camp, making it hard to do or remember even basic things. There are days - and they have increased in the last month - when I wanted to cheer because I remembered to put my shirt on right-side-out or run a brush through my hair. I hear cloud time doesn't last forever and I really, really hope it's true. </div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAdXhPu1VPSmzgra6uCaUPN-ELtlTSiRbCT_Ite1S1w6Q-eU2EnZOX2_dWVYf99LdnUkRBZJQ-DnL6ZFTBV6AHz_7TIkxZpipQr6zGuFNtk2ssc4gYPNzK84idpEnNnD_kwN6J0KyK3N1q/s1600/Memorial-27.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1281" data-original-width="1600" height="256" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAdXhPu1VPSmzgra6uCaUPN-ELtlTSiRbCT_Ite1S1w6Q-eU2EnZOX2_dWVYf99LdnUkRBZJQ-DnL6ZFTBV6AHz_7TIkxZpipQr6zGuFNtk2ssc4gYPNzK84idpEnNnD_kwN6J0KyK3N1q/s320/Memorial-27.jpg" width="320" /></a></div>
<div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzskfjblHjkwjpXgyuZjvGiWtLal4U01CU8vaL40dO68s5fJuMLfzXZ7Q_dSQNO69DVUpdeC0B9YEbOyxFNqZ6g0lYSLLXie0Mp9ciQb7Sb8fR2fNmUS0RnhKhUHlqYn6pu75nUnmzSl8c/s1600/MJKEdits-1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1280" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzskfjblHjkwjpXgyuZjvGiWtLal4U01CU8vaL40dO68s5fJuMLfzXZ7Q_dSQNO69DVUpdeC0B9YEbOyxFNqZ6g0lYSLLXie0Mp9ciQb7Sb8fR2fNmUS0RnhKhUHlqYn6pu75nUnmzSl8c/s320/MJKEdits-1.jpg" width="256" /></a></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br />
I have had many setbacks as my world has been turning upside down and right side up this year. I have had many, many epiphanies. My perspective on life and the universe has opened and closed in rotating spins, which has left me feeling extremely disoriented and often confused. My relationship with God has changed because I have changed fundamentally. It’s insecure knowing and feeling divine love, but also knowing and feeling that it cannot be the way I thought-no, knew- it was before. I long for the solid ground I felt before my world crumbled, but I also marvel at the strength of my footing in a world that changes as much as mine has. I love my new muscles and I hate how I got them.<br />
<br /></div>
<div>
We miss her. I did not know a person could feel such longing. We miss her so much. </div>
<div>
<br /></div>
<div>
Forgive me that I can't end on an upbeat note today. I know there is so much to be grateful for, there is so much hope in the world, and so much love and happiness. Today, I want to feel the full force of my sadness and loss. Just today. I'm not even sure why, I just need to. </div>
<div>
<br /></div>
<div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaxBZuC2HgeTodS4Pt7fxY_WU3osV05EwzomA_5vvnYHKWdiClf5iSIrL8jMCmfYVH2scZRAOVcQA47lDNZmScetT2QEo8pRO6DJ5n4x5NCae7lZGY_Hjs3XQtDGHPPThI1_LG5Xr_6DAR/s1600/IMG_1109.heic" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaxBZuC2HgeTodS4Pt7fxY_WU3osV05EwzomA_5vvnYHKWdiClf5iSIrL8jMCmfYVH2scZRAOVcQA47lDNZmScetT2QEo8pRO6DJ5n4x5NCae7lZGY_Hjs3XQtDGHPPThI1_LG5Xr_6DAR/s320/IMG_1109.heic" width="320" /></a>I love all of you so very much, those who watch out for us every day, who miss Madi, too. I love all of you for taking my kids and giving us time to be sad, for leaving and sending notes and food and treats and gifts and pictures. You have collected comfort and warm memories and wrapped us up in tight swaddles of love, like a cast protecting our broken hearts. Thank you - deeply. One day, I hope you know how much it has meant to us.<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br /></div>
<div>
<br /></div>
Jenn Knighthttp://www.blogger.com/profile/17068200258878833318noreply@blogger.com4tag:blogger.com,1999:blog-5564102773556016939.post-7961624762979867582018-12-27T22:05:00.002-08:002018-12-27T22:05:35.853-08:00Sad-Happy Holidays from the KnightsI have tried and tried again to update this blog over the last ten months. But I am left with a bunch of half-written posts that don't seem to capture what life has been like. <br />
<br />
In some ways, it has been normal. Our kids are busy with activities like piano and sports and dance. They have good friends and great teachers and fun activities. Kurt and I continue with work, church, and volunteer stuff. We appreciate the continued love and support of dear friends around us. We have traveled a lot this year, studied a lot, exercised a lot, and spent a lot of time together (though not nearly as much as we would have liked). In so many ways, life feels a lot like it used to feel.<br />
<br />
But there is a huge portion of life that I just don't know how to put in words. Well, for example, tonight as we were driving home from a fun afternoon with our kids and extended family, I looked at Kurt and asked, "How are you?" He nodded, as he does frequently does when I ask that question. "Really?" I asked again. He nodded again. Then he looked at me and said, "you?" I said, "I'm happy. I mean, sad-happy, you know. I remember happy-happy, and I'm not that. I'm not sure I will ever be able to be happy-happy again." He nodded again in understanding (my husband of few words :)) and we sat in silence for a few minutes. <br />
<br />
See, it sounds so depressing when I say it like that. It's the kind of thing that makes people want to coo in pity and give us hugs and console us. Don't get me wrong- most days a response like that is very appreciated! But life is not so depressing as it sounds. <br />
<br />
Yes, everyday is hard. Some days, it's so hard that I just want to give up and lay down and watch Netflix and eat... well, anything. There really are no easy days, just less-hard days. And yes, I still cry pretty much every day at least once. That's why my eyes always look puffy and/or red (anyone have a remedy for red puffy eyes???). <br />
<br />
BUT, life is also so much more meaningful and full than it was before. Sad-happy often feels like a bummer compared to happy-happy, sure; but it's also an acknowledgement that our life here on earth is incomplete and always will be. Happy-happy can fool us into thinking that what we have now is enough, that we don't need more happiness or joy or peace. It's like making you think that the shiny new penny in your hand right now is just fine when you actually have a million dollars sitting in your bank account. <br />
<br />
Sad-happy is a motivator. It moves us to look for ways to find more meaning in the mundane, to be better in our relationships and find joy in moments we completely missed when we were happy-happy. Sad-happy slows everything down and hands us a magnifying glass so we can examine ourselves and see if we are creating the legacy we want to leave behind. Happy-happy - I realize now- is a teaser of what can be in the future. It was never intended to be the end. <br />
<br />
And so, we trek on through many firsts this year without our dear little ones, often imagining what it would be like if they were still with us. We make new beautiful memories without Madi and Frederick, only realizing how glorious those moments are because we have experienced how fleeting they are. We snuggle our kiddos here with a love that didn't exist before we lost our other children. We wake up with an emptiness that pushes us to want more out of life than job security and good health. Life as it was before is no longer enough and we are beginning to see how good that will be for us as the years roll on.<br />
<br />
That is about as close as I can get to describing how life is now. <br />
<br />
My New Year's resolution is to write more since it helps me process. I hope to put more on the blog. I have always been more of a private person, perhaps because of an innate insecurity that comes from knowing people can and will judge everything I say out loud. But I'm kind of done being insecure. Well, I want to be done with it. It's such a waste of time.<br />
<br />
<div style="text-align: center;">
Happy holidays to all of you! </div>
<div style="text-align: center;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL3tSGWD4Rzh4DxzRd8qizXI6sokMsLodY1sIeOK5PFRyK7gzBMrC_vvW35N0nox50dr_Z6twFdfDrYQ66aA73RzHyoBbYqedWK_HWroA_V-rvIPSGOzjLH_4lif1ThqymJoSs-7Mzi4g5/s1600/IMG_0281.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL3tSGWD4Rzh4DxzRd8qizXI6sokMsLodY1sIeOK5PFRyK7gzBMrC_vvW35N0nox50dr_Z6twFdfDrYQ66aA73RzHyoBbYqedWK_HWroA_V-rvIPSGOzjLH_4lif1ThqymJoSs-7Mzi4g5/s320/IMG_0281.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"These carrots are for the reindeer. 2 for each 9 reindeer, right? If there is extra then you can eat them." <br />Christmas Eve note to Santa from our kids. <br /></td></tr>
</tbody></table>
Jenn Knighthttp://www.blogger.com/profile/17068200258878833318noreply@blogger.com5tag:blogger.com,1999:blog-5564102773556016939.post-92004928822596359542018-04-15T15:06:00.000-07:002018-04-15T15:06:30.878-07:00Madi's Tribute VideoI'm not sure why it has taken me so long to post all of this funeral stuff, but I'm pretty sure it has to do with how hard it makes me cry when I read or watch these things.<br />
<br />
This video is definitely no exception. One of my best friends' husbands makes documentaries and offered to do this tribute for us. I think it is one of the most brilliant things I've ever seen. I love how he used bits of Madi singing as part of the music. Thank you, Orvon!! It is a priceless gift. <br />
<br />
<br />
<div style="text-align: center;">
<iframe allowfullscreen="" frameborder="0" height="270" src="https://www.youtube.com/embed/9NCO8t74xiY" width="480"></iframe><br /></div>
<div style="text-align: center;">
<br /></div>
Jenn Knighthttp://www.blogger.com/profile/17068200258878833318noreply@blogger.com11tag:blogger.com,1999:blog-5564102773556016939.post-67771783669513809152018-04-15T14:59:00.002-07:002018-04-15T14:59:41.968-07:00Kurt's funeral remarks - Four lessons I learned from Madi through this trial<span lang="EN-US" style="font-family: "arial" , sans-serif; line-height: 150%;"><span style="font-family: inherit;"><span style="font-size: large;"><o:p><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;">Before I begin, I’d also like to share some context
for our closing hymn, How Firm a Foundation. Madison loved music more than she
hated needle pokes, which is saying a lot. So on our frequent car rides to the
hospital where she had to get needles inserted, she’d play music to get “pumped
up” and ready for the needle. Initially she listened to “Fight Song” by Rachel
Platten, but before long, we started the tradition of listening to daddy’s fight
song, and then we’d listen Madi’s fight song. And the thing is, daddy loves the
Mormon Tabernacle Choir. So in my feeble effort to instill my values in her,
we’d crank up the volume and sing the Mack Wilberg version of this song on
every trip to the hospital. This tradition really helped calm Madi’s needle
fears. So I hope in honor of Madi, you will “crank up the volume” and sing
Madi’s closing “Fight Song” with all your might.<o:p></o:p></span><br />
<span style="font-size: small;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"></span></span><br />
<span style="font-size: small;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;">I’d like to discuss four of Madi’s character attributes
that have helped me learn how to handle really hard things. Each of us is
struggling with trials in our own way, often in private, and I hope these
lessons from Madi can be helpful to you in some way.<o:p></o:p></span></span><br />
<span style="font-size: small;">
</span><br />
</o:p></span></span></span><br />
<div class="MsoNormal" style="background: white; line-height: 150%; margin: 0in 0in 8pt; vertical-align: baseline;">
<span lang="EN-US" style="font-family: "arial" , sans-serif; line-height: 150%;"><span style="font-family: inherit;"><span style="font-size: large;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgd64-rmD7LTOz6X8xFyX8wYWQTZpo9yyK4VcW7nbAvxBOAt4OgYPiRu2_2kVsYelcxRlmPH_UW_yo0zplBoONok4dg_TYO6BGikMcgqJzET6ncxiN3ghLDbNXHNuekt9xW3BVldbVy8-XH/w1044-h783-no/" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img aria-label="Photo - Landscape - Nov 23, 2010, 5:17:02 PM" border="0" class="SzDcob " height="300" jsname="uLHQEd" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgd64-rmD7LTOz6X8xFyX8wYWQTZpo9yyK4VcW7nbAvxBOAt4OgYPiRu2_2kVsYelcxRlmPH_UW_yo0zplBoONok4dg_TYO6BGikMcgqJzET6ncxiN3ghLDbNXHNuekt9xW3BVldbVy8-XH/w1044-h783-no/" style="transform: translate3d(0px, 0px, 0px) rotate(0deg);" width="400" /></a><b style="mso-bidi-font-weight: normal;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;">First, humor.</span></b><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"> Madi was a very funny girl! As a young child, she
lived in two different worlds – Madi world, and the real world. And the fun
thing was that she developed a large vocabulary at a very young age, and she
narrated what was happening in Madi world, in real time. When she was 3 years
old, I was trying to get her to do something, I don’t remember what. She didn’t
want to do it, so she ran upstairs, and I slowly followed after her. When I got
upstairs, Madi was nowhere to be found. I went to check the bedrooms, but as I passed
the bathroom, I heard a little voice saying, “Madi laid very still in the bottom
of the bathtub so that her dad couldn’t find her.” </span></span></span></span></div>
<span lang="EN-US" style="font-family: "arial" , sans-serif; line-height: 150%;"><span style="font-family: inherit;"><span style="font-size: large;">
</span></span></span>
<div class="MsoNormal" style="background: white; line-height: 150%; margin: 0in 0in 8pt; vertical-align: baseline;">
<span lang="EN-US" style="font-family: "arial" , sans-serif; line-height: 150%;"><span style="font-family: inherit;"><span style="font-size: large;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;">When she got older, she
loved to write her own jokes. A few of my favorites, “Why did the cow jump over
the moon? Because he needed more space.” “Why should you never agree to babysit
a candle? Because they always melt down.” And my personal favorite because it
is so cerebral and so Madi, “Whose music do UPS drivers listen to? Bach’s [box] music.” Another example of Madi’s humor is a story told by her aunt Melissa.
She says, “One of my favorite memories of Madi was when she was about 6 or 7.
We were at Grandma Rockwood’s house for our annual and beloved Cousin’s Camp.
As I was sitting in the kitchen, I looked over and saw Madi start to come down
the stairs. She stumbled and almost fell, but then caught herself. Not
knowing that I was watching her, she exhaled with relief and said, 'It’s a good
thing I ate Lucky Charms for breakfast this morning!’ The most endearing part
about this story is that Madi probably did believe the Lucky Charms helped her."</span></span></span></span></span></div>
<span lang="EN-US" style="font-family: "arial" , sans-serif; line-height: 150%;"><span style="font-family: inherit;"><span style="font-size: large;">
</span></span></span><div class="MsoNormal" style="background: white; line-height: 150%; margin: 0in 0in 8pt; vertical-align: baseline;">
<span lang="EN-US" style="font-family: "arial" , sans-serif; line-height: 150%;"></span><span lang="EN-US" style="font-family: "arial" , sans-serif; line-height: 150%;"><span style="font-family: inherit;"><span style="font-size: large;"></span></span><span style="font-family: inherit;"><span style="font-size: large;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;">She used this humor to make the cancer trial more
bearable. After her 2nd surgery, she initially couldn’t use her left arm very
well. The connections in her brain needed to rewire. So she joked that it was
her “robot arm” and would often say, “go, go, gadget arm!” when she was trying to
get it to do something. More recently, she landed back in the hospital due to a
series of seizures. Because of a combination of the seizures and the
medications used to stop them, she slept for almost 24 hours. At that point, the
nurses had to change her bed linens and her clothes, so she was lying on the
bed with just a towel draped over her. She started to rouse a bit from sleep,
and having not talked with her in 24 hours, we were anxious to see how she was
doing. We hovered over her and said, “Madi, how are you feeling?” Her feeble
response, “I’m feeling…slightly under-dressed.” She couldn’t change her circumstance,
so she changed her attitude.</span></span></span></span></span></span></span></div>
<br />
<div class="MsoNormal" style="background: white; line-height: 150%; margin: 0in 0in 8pt; vertical-align: baseline;">
<span lang="EN-US" style="font-family: "arial" , sans-serif; line-height: 150%;"><span style="font-family: inherit;"></span></span><span lang="EN-US" style="font-family: "arial" , sans-serif; line-height: 150%;"><span style="font-family: inherit;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"><span style="font-size: small;"><b style="mso-bidi-font-weight: normal;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;">Second,
Kindness. </span></b><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;">Madi’s friends and
peers have often remarked that Madi was the nicest person they ever met. She
was a friend to all, and a supreme gift-giver. When she was old enough to
babysit our kids, over several months she earned something like $100, which was
a lot of money for her age. I assumed she’d use it to buy something big for
herself, but instead she spent almost all of it on Christmas gifts for her
siblings and parents.<b style="mso-bidi-font-weight: normal;"><o:p></o:p></b></span></span></span></span></span></span></span></span></div>
<span style="clear: left; float: left; font-size: small; margin-bottom: 1em; margin-right: 1em;">
<img aria-label="Photo - Portrait - Dec 15, 2017, 4:02:45 PM" class="SzDcob " height="400" jsname="uLHQEd" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAchDrn-1evFkOafXRmwrBwUniP_qsf5OxmuJd8IxJbijxKlKWddLzcrdWIZi8ePi_Qbh2WSOHS2kWlaWDe-CIKxwJkARLPTiDtuO7LZsQBEwgjPfJmTTfxiM2aX-yWnxFgokwxdzP_j8X/w588-h783-no/" style="transform: translate3d(0px, 0px, 0px) rotate(0deg);" width="300" /></span><br />
<div class="MsoNormal" style="line-height: 150%; margin: 6pt 0in 8pt;">
<span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;">After the cancer diagnosis, the hospital would often
let her pick out gifts at certain milestones of her treatment. She found more
joy in picking out gifts for her siblings than for herself. Last month she
worked with the Make-a-Wish foundation to plan a dream trip to Orlando. From
the very beginning, she asked to keep it a secret from her siblings so she
could surprise them on the morning of the trip. By focusing on others and the
joy of giving, she was able to find joy in the midst of her trial.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 150%; margin: 6pt 0in 8pt;">
<span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;">She and our family have also been on the receiving end
of tremendous kindness from friends and strangers alike. I could speak for an
hour on this subject alone, but given time constraints, for now I will just say
that we have learned from all of you what it truly means to care for the sick
and needy, and we are forever in your debt.</span></div>
<div class="MsoNormal" style="line-height: 150%; margin: 6pt 0in 8pt;">
<span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"><span style="font-size: small;"><b style="mso-bidi-font-weight: normal;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;">Third,
Gratitude.<span style="mso-spacerun: yes;"> </span></span></b><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;">Madi always went out of her way to say thank you for
what she’d been given. After her first surgery, she shared a room with a little
girl who had epilepsy. After hearing her story, Madi commented to Jenn, “Mom,
we are so lucky. It could be so much worse.” She didn’t understand the gravity
of her diagnosis at the time, but she had just been through an unexpected
emergency brain surgery to remove a very large tumor, and she still found a way
to be grateful. On December 22<sup>nd</sup>, Madi found herself in the ER in
Indiana for the second time in 3 days. The nurse had a hard time inserting an
IV needle into her port, which meant she stuck a 1 inch needle directly into
Madi’s chest multiple times. It was an incredibly hard day for this poor girl,
but as we pushed her out of the ER in a wheelchair, she chirped “Thank you!” and
“Merry Christmas!” to each of the staff in the ER.<o:p></o:p></span></span></span></div>
<span style="font-size: small;">
<img aria-label="Photo - Landscape - Dec 25, 2017, 5:45:53 PM" class="SzDcob " height="360" jsname="uLHQEd" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2lo74EBQOXayProfx6J493vl7grBDLnn-BM1JQBTqu_fvbQb1bo6JTKWGC6i4Or2OLHkSLnaKbtsZcqonS7EEIvwK1m2sAqWLNcn8JCwHvm4_YxwEXyACxnrgNlFsrCkf-F5cBRR1akYq/w1391-h783-no/" style="transform: translate3d(0px, 0px, 0px) rotate(0deg);" width="640" /></span><br />
<div class="MsoNormal" style="line-height: 150%; margin: 6pt 0in 8pt;">
<span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;">Jenn and I have used gratitude as a coping mechanism during
the past year as well. The doctors said that Madi was just hours or days from death
last April when her brain cancer was discovered. We have cherished each day
with Madi since then as a gift we’ve been given from God. As hard as it has
been to lose 2 children in 3 months, Jenn has found stories of her ancestors
who lived not too long ago who lost even more children than that. Today, in
2018, there are millions of refugees throughout the world who have lost their
children in addition to their homes and homelands. To quote Madi, “We are so
lucky. It could be so much worse.” We had 12 wonderful years with Madi, and we
still have 4 beautiful healthy children, for which we are profoundly grateful.<o:p></o:p></span></div>
<span style="font-size: small;"><span style="mso-bidi-font-weight: normal;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"><b>Fourth,
Eternal perspective. </b> </span></span><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;">From
a young age we’ve taught Madi our beliefs about where we come from, why we’re
here, and where we go when we die. We call this the Plan of Salvation or the
Plan of Happiness. Placing this current experience in that broader context has
provided immense peace and comfort to our family. As background, I’d like to
read from a talk that Madi gave at our church last August. Quote,<span style="mso-spacerun: yes;"> </span>“<span style="color: black;">I was asked to
speak today on the plan of salvation. When I think of the plan of salvation, I
think of a number line. It goes back for infinity, then there’s a really short
line where we are on earth, and then it goes on forever after our time here is
done. Elder Packer compared the plan of salvation to a </span></span><span style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"><a href="http://emp.byui.edu/huffr/The%20Play%20and%20the%20Plan%20--%20Boyd%20K.%20Packer.htm" target="_blank"><span lang="EN-US" style="color: black; text-decoration: none;">three-act play</span></a></span><span lang="EN-US" style="color: black; font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;">, where our life before earth was Act 1.
Our time in mortality is Act 2, and our time after death is Act 3. He said: </span></span><br />
<span style="font-size: small;"><span lang="EN-US" style="color: black; font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"><br /></span></span>
<span style="font-size: small;"><span lang="EN-US" style="color: black; font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;">"In mortality, we are like one who enters a theater just as the curtain
goes up on the second act. We have missed Act I. The production has many plots
and sub-plots that interweave, making it difficult to figure out who relates to
whom and what relates to what, who are the heroes and who are the villains. It
is further complicated because you are not just a spectator; you are a member
of the cast, on stage, in the middle of it all! ... Remember this! The line
‘And they all lived happily ever after’ is never written into the second act.
That line belongs in the third act when the mysteries are solved and everything
is put right.” To bring some eternal perspective, I’d like to discuss each Act
as they relate to Madi.</span></span><br />
<span style="font-size: small;"><span lang="EN-US" style="color: black; font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"></span></span><br />
<span style="font-size: small;"><span lang="EN-US" style="color: black; font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"><b style="mso-bidi-font-weight: normal;"><span lang="EN-US" style="color: black; font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;">So Act 1.</span></b><span lang="EN-US" style="color: black; font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"> We
believe that </span><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;">Madi, like all of
us, existed as a spirit before she was born. We are spirit children of a loving
Father in Heaven who created us and gave us opportunities to mature and develop
in His presence. But there was a limit to our progression there, so we are given
the opportunity to receive a body in this world, to experience love and joy but
also pain and hardship, to develop and grow further. Shortly after Jenn and I were
married, we each, separately, had a very clear impression that our first child would
be a girl, that we knew her, and that she was very excited to come and join us.
I know that Madi as a spirit existed before this life, and that she – her
Spirit – was a part of our family even before she had a body. That was Act 1.<o:p></o:p></span></span></span><br />
<span style="font-size: small;"><span lang="EN-US" style="color: black; font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"><br /></span></span></span>
<span style="font-size: small;">
<b style="mso-bidi-font-weight: normal;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"></span></b></span><br />
<span style="font-size: small;"><b style="mso-bidi-font-weight: normal;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;">Act
2.</span></b><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"> We had 12
wonderful years with Madi, which you’ve heard much about already today.
Sometimes people say “What a tragedy that Madi’s life was cut so short.” While
the separation from Madi is heartbreakingly difficult, I do not believe her
life was cut short. She lived exactly as long as she was supposed to live on
this earth, and not a day less. Each of us has a mission in life - certain
things we are expected to accomplish. I think Madi’s mission was to struggle and
fight through this cancer, and together with her mom, share her experience in a
way that would be an inspiration to thousands of people all over the world,
which will have a ripple effect for years to come. Madi spread so much goodness
in the world in 12 years through her struggle with cancer, perhaps as much as she
could have done if she had lived 80 years without cancer. She fulfilled her personal
mission with flying colors, and it is now time for her to move on.<o:p></o:p></span></span><br />
<span style="font-size: small;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"><br /></span></span>
<span style="font-size: small;">
<b style="mso-bidi-font-weight: normal;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"></span></b></span><br />
<span style="font-size: small;"><b style="mso-bidi-font-weight: normal;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;">Act
3. </span></b><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;">Now Madi has
graduated to the next phase of her growth and development. Just as surely as I
know that she existed before she was born, I know she continues to be part of
our family now that she has died. I like the imagery in this quote from Parley
P Pratt, an early Apostle in our church. <span style="background: white; color: black;">"Their kindred spirits, their guardian angels then hover about them
with the fondest affection…With what tenderness of love…they watch over our
slumbers, hang about our pillow, and seek…to communicate with our spirits, to
warn us of dangers or temptations, to comfort and soothe our sorrow, or to ward
off the ills which might befall us, or perchance to give us some kind token of
remembrance or undying love!" </span></span></span><br />
<span style="font-size: small;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"><span style="background: white; color: black;"></span></span></span><br />
<span style="font-size: small;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"><span style="background: white; color: black;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;">We have lost Madi’s physical presence, but Madi’s spirit
will still be here with us. She’ll continue to be a great big sister, providing
support to her younger siblings, when and where and how they need it, and often
in ways she couldn’t have if she were still physically here. <span style="mso-spacerun: yes;"> </span>I’m quite sure Madi is very happy now. She was
in her element whenever she had a book in her hand. <span style="mso-spacerun: yes;"> </span>Now she has access to a “celestial library” so
to speak and I’m sure is soaking in so much knowledge and insight. And I know
if we live our lives in the right way, in the quiet moments we’ll be able to
feel her near and know of her love for us, and she’ll know of our love for her.
One day, before we know it, we will be reunited with Madi again, cancer-free
and full of joy. Because of the resurrection provided through the sacrifice of
our Savior Jesus Christ, “The soul shall be restored to the body, and the
body to the soul; yea, and every limb and joint shall be restored to its body;
yea, even a hair of the head shall not be lost; but all things shall be
restored to their proper and perfect frame” (<a href="https://www.lds.org/scriptures/bofm/alma/40.23?lang=eng&clang=eng#p22" target="_blank">Alma 40:23</a>). <o:p></o:p></span></span></span></span><br />
<span style="font-size: small;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"><span style="background: white; color: black;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"><br /></span></span></span></span>
<span style="font-size: small;">
<span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"></span></span><br />
<span style="font-size: small;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;">I cannot wait to hear from Madi what great things she
has accomplished during Act 3. I know she will be close by us always, and we
will be reunited with her again, never to part, and this time without her will
seem like a small blip in the grand scheme. <span style="mso-spacerun: yes;"> </span>I am so grateful for the peace this knowledge
brings to our family, and so grateful for the example that Madi was to all of
us throughout her life. In the name of Jesus Christ, Amen.</span></span><br />
<span style="font-size: small;"><span lang="EN-US" style="font-family: "open sans" , sans-serif; font-size: 12pt; line-height: 150%;"><o:p></o:p></span></span><br />
<span style="font-size: small;">
</span><br />
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhe3a9HG1O_rjL_h_0e871It-UaMq689UzaPdS8PfD7n34SeROcTOZBZlDoerDgS_aixLfVLF30H5hYca1JbOlqUiFssvApMXZ8ItRR84YmFJWUWRMY2uyfBuObwXe57oZ3T7EO43dpqRhb/s1600/Knight2017-74.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1143" data-original-width="1600" height="456" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhe3a9HG1O_rjL_h_0e871It-UaMq689UzaPdS8PfD7n34SeROcTOZBZlDoerDgS_aixLfVLF30H5hYca1JbOlqUiFssvApMXZ8ItRR84YmFJWUWRMY2uyfBuObwXe57oZ3T7EO43dpqRhb/s640/Knight2017-74.jpg" width="640" /></a></span></div>
<br />
Jenn Knighthttp://www.blogger.com/profile/17068200258878833318noreply@blogger.com4tag:blogger.com,1999:blog-5564102773556016939.post-85218886037093103992018-03-30T10:26:00.004-07:002018-03-30T10:26:32.532-07:00Our New Good Friday and Jenn's Funeral Talk Today, I woke up with a deep reverence that I have not felt before on Good Friday. I mean, I have always felt feelings of gratitude and humility thinking about what Christ must have felt on this day, the day he was crucified. But this morning, having the feelings of the last few months so fresh in my heart, I felt... different, changed. As I read with my son this morning as he was brushing sleep from his eyes, this passage stood out to me. <br />
<div>
<br /></div>
<div>
Christ had just finished the excruciating pain in Gethsemane and his opponents came to take him, including Judas Iscariot. In one swift kiss, Judas turned him over to his enemies. Peter angry about this turn of events, reached out his sword and cut off the servant's ear. Christ took the ear and restored the servant's ear - made him whole - then turned to Peter and said - maybe a little disappointingly- "Thinkest thou that I cannot now pray to my Father, and he shall presently give me more than twelve legions of angels?" </div>
<div>
<br /></div>
<div>
Christ could have stopped what was happening to him, but he didn't because there was so much more that would come from His death that what would come from his life, were He to stay. As I have watched beautiful things come over the last six weeks from Madi's passing, I have wept as I have realized that God could have sent twelve legions of angels to save Madi, but instead he sent them to welcome her home. Both Kurt and I feel strongly that this was her plan. Perhaps she did not need 80 years to accomplish what she accomplished in her short 12 years. And while I do not presume to equate our sweet daughter's mission to Christ's mission, I do find great joy in thinking that she spent her time on earth helping lead others toward God. </div>
<div>
<br /></div>
<div>
After my rambling, here is the talk I gave here in Boston (similar to the one I gave in Utah). </div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<div style="text-align: center;">
<b>Madi’s Legacy: Jenn's Funeral talk </b></div>
You may have guessed from Madi’s obituary, written by a very proud Grandma Rockwood, that trying to find a manageable focus for Madi’s life proved quite difficult for Kurt and I. Having come from families where family history was a regular and established part of our daily lives, Kurt and I recognize the importance of legacy. Much of our identities have formed around and because of the legacies of ancestors from which we came.<br />
<br />
Last week, before we closed the casket, we slipped a golden snitch necklace around Madi’s neck. Other Harry Potter-philes will know that inscribed on the outside of the snitch are the words, “I open at the close.” I’ll let you read the books to understand the meaning it had for Harry. For Madi, we believe there is much that has opened to her since the close of her life on earth, much of which we will not know or understand until we also pass on to join her. What we do know is that her legacy here has also opened at the close of her mortality. Madi has joined the strong ranks of our ancestors by leaving a legacy for all of us to reflect on and learn from.<br />
<br />
We decided that Madi’s legacy involves eight main points. I will talk on four, and Kurt will talk on the other four.<br />
<br />
<b>First legacy: Read more.</b><br />
The legacy of books runs deep in our family. We discovered list of possessions at death from one of our ancestors who had lived in the sixteenth century when books were scarce and expensive. It included two apples, a cow, a metal pan, and six books. After their marriage, my<br />
own parents returned all their wedding gifts and used the money to buy books instead. They chastised my older siblings who decided to give some of our books a bath when they were little by saying, “Be nice to the books. Books are our friends!”<br />
<br />
Indeed to Madi, books were just as real and loveable as her human friends. When Kurt and I were poor and newly married, we did not spend any of our discretionary income on toys. Instead, Madi had a large library of hand-me-down children’s books from our older siblings and parents. I would often allow her to gum on her board books in her infant seat as we drove (not the safest decision in retrospect). We threw away many of those books because the pages would dissolve off of the binding with her literally feasting on good literature. When she began to crawl, she used to crawl to the bookshelf in her room and pull off all the books she had, spread them around her in one giant arc, then sit and open them and look at the pictures for long stretches of time. We had a few casualties, some of them getting pages ripped out, torn, or eaten, but when she eventually developed the fine motor skills to handle them appropriately she would sit with a book on her lap for twenty or thirty minutes at a time. For a tired mom of a six month old, this was a (much-needed) miracle. In order to get more sleep, after Madi drifted to sleep at night, Kurt or I would sneak into her room and pile books at the foot of her crib. When she woke up with the sun in the morning, we would hear her babble or cry for us, then stop as she discovered the books. We relished the additional sleep in the morning until the last of the books had been tossed over the edge and she was done and ready for breakfast.<br />
<br />
As she grew, her hunger for knowledge grew with her. My favorite part of the day was (and still is) coming in to read to the kids at bedtime. Because of Madi’s example, the younger kids learned early how to listen and appreciate read-aloud stories. I remember camping out with Madi and Max in our old house and telling Kurt I would just read until they fell asleep. Unfortunately, Madi became so enraptured by the story that she often wouldn’t fall asleep, even after hours of me reading. Because of this, we made it through most of the CS Lewis and Little House books before she was even five. Even as a twelve year old, she loved to sit and listen to me read picture books to the little ones. At Christmas at Grandma’s house this year, she pulled me to the couch the first day we got there and asked me to read Shel Silverstein’s, “Where the Sidewalk Ends.” We sat there for two hours reading the entire book and she still wanted more. Most of what was on her Christmas list this year was books. She saved her money every year so that she could buy books from the used book sale at the library. She came home this year with two large canvas bags full of books.<br />
<br />
I began reading the Harry Potter series to her in kindergarten, but we were reading too slowly for her liking. So she snuck the book out during the day and read ahead. She tore her way through the series until I made her stop at book 5 and wait a little to finish it. I naively assumed that it was too scary for a six year old. She was so mad and thought it was unfair. I finally relented in first grade and she devoured the last books in just a few weeks. She was not at all scared and of course thought I had been completely unreasonable. Witches, wizards, ghosts, goblins, werewolves, all those scary things that most children her age found frightening, were all just part of a great story in her world. They did not scare her in the least. This year, Harry Potter became an important tool in her healing kit. After her surgeries when it was harder for her eyes to focus and move as quickly as they had before, she would turn on the Harry Potter audiobook by Jim Dale and listen to it for hours and hours as she colored or did something else. She listened to dozens of audio books, though she always went back to Harry Potter during times of stress and uncertainty. I suspect that the stories full of fear and anxiety, where bad things happen to good people, but where good ultimately triumphs in the end, were a safe and hopeful place to process what was coming at her in the real world. She listened to the series almost thirteen times since last April. One day during this really hard year we’ve had, she said to me, “don’t you ever just wish that you could actually go inside the story and just stay there for a while?” I did! I still do! But Madi didn’t stay there. She came out and faced her trials with strength. She drew lessons from what she was reading and applied it to her situation. I will forever think of Madi when I read this scripture from a passage in our scriptural canon, the Doctrine and Covenants. “…seek ye diligently and teach one another words of wisdom; yea, seek ye out of the best books words of wisdom, seek learning even by study and also by faith;”<br />
<br />
<b>Second legacy: create daily.</b><br />
Madi made art out of the ordinary of everyday life: dirt, grass, paper, tissues, smoothies, food… Of course, she thought it was art. Sometimes I had different opinions about it. I had to make the rule when she was four that we only made potions on Halloween, not every day at lunch. As a young girl, she especially loved to play with flour. When she was three, I remember her chanting “FLOULER! I like to play in it. FLOULER! I like to pour it. FLOULER! I like to drink it. Etc…” I had very ambivalent feelings about all her messy creations, loving the process, hating the clean-up - not just because it was a pain to clean up, but also because I was destroying good art! Like when I had to clear away her picture of the temple made out of peas, tortillas, and refried beans.<br />
<br />
Her artwork as a child, like great works of art, made me feel things and see life in a different way. I think it’s because she lived much of her life in what Kurt and I termed “Madi World.” From the glimpses we had of it, we found it a beautifully colorful, warm, happy and luxuriously comfortable place. Rules there were different, but fair. The weather: always warm and sunny. The people were lovely and interesting. We had the pleasure of meeting her hoards of imaginary friends. Most beloved by us were her imaginary husband, Pruno, and her darling imaginary children, “Stylish,” “Madagascar,” and “Mads.” As she introduced her imaginary family to friends on the playground when she was four, I felt like the proudest imaginary grandma in the whole world. I recorded in my journal in July of 2008, shortly after she turned three, “Madi was playing Cinderella and using one of the sponge balls Grandma Knight gave her as a sponge to wash her picnic table. I had to play the wicked stepmother and basically just say no to anything she asked me to do. I think sometimes she really wanted me to say yes, but then realized that I had to say no to stay true to the part. She cleaned the whole bench really well by the time she got tired of the game.”<br />
<br />
Her imagination spilled into her performing, as well. She loved performing to anyone and everyone who would watch. She would organize “shows” whenever she could, which usually included a semi- riveting plot line, sometimes special effects or music, and almost always a vocal performance or two. While to some she may have come across as more introverted, when she got on the stage, she was bigger than life. Her singing frequently moved me to tears, and still will, I’m sure, until the day I can hear her again in person. I have found in my own study of the plan God has shown us that creation plays a prominent role in it. I have watched Madi find happiness and joy through the act of creating on a daily basis, and I intend to follow her example as I wend my way through the rest of mortality.<br />
<br />
<b>Third legacy: See yourself as you really are, not as you think you should be.</b><br />
One of my favorite parts about Madi was that she cared little about others’ opinions of her. After her first surgery, she had a big stripe of hair shaved off of the left side of her head with a Frankenstein-esque surgical incision stitched in a wide C around her ear. She bounced back pretty quickly from the surgery, considering how invasive the procedure had been. She wanted to come with me to the store about a week after we got home from the hospital. When we went out, it was clear that people were staring, some out of fear, some out of curiosity, some out of disgust. Madi looked at me and said, “I know I should care that people are staring at my head wound, but then I think, “Hey, I just had brain surgery, I think I get a pass.” Madi knew that she was precious to Heavenly Father. And she respected the commandments he had given her. She followed them, not out of fear or because the people around her were obeying, but because she genuinely knew that they would make her happy in the end. Her integrity was admirable. We started listening to an audio book once that had gotten rave reviews. We were both really excited to hear it. Once we got about a chapter in, there were quite a few swear words. Madi interrupted the book and said, “Mom, I don’t want to listen to this anymore. There’s too much bad language in it.” Admittedly, I was disappointed. I probably would have continued to listen because it was a really good story (clearly she didn’t get this from me)! She felt like that about all media and would choose not to consume if it made her feel bad. She chose well not out of guilt, but because once she realized it would not uplift her, she sincerely lost the desire to do it. She had an innate understanding of who she was, that she was daughter of royalty, and she did not need to sink to the world’s level in order to find enjoyment. She respected who she was and always stayed true to it. When I asked her after her first surgery what it meant to be a child of God, she said she felt like it meant protection. That He would always watch out for her and take care of her. She had seen this physically with the surgery and cancer, but she also felt it spiritually, too. She knew how to access that power and stuck to those principles like glue.<br />
<br />
<b>Fourth legacy: Be tough, but pliable</b><br />
When Madi was little, a friend of ours put together a little soccer clinic for our kids. On the first day of the clinic, one of the children made a mistake and started crying. One of Madi’s 5 year old friends, after giving a massive eye roll, looked at the kid and said, “What? There’s no crying in soccer!”<br />
Madi embodied this sentiment. After going through two brain surgeries without a tear, I sat by her hospital bed half expecting her to look over at me and say, “What? Mom! There’s no crying in brain cancer!”<br />
<br />
As a little girl on the playground, Madi would frequently trip or fall down. I think over the years, she ran in front of swings and got kicked over at least half a dozen times. Every time, the other mothers would gasp and look at me, then at her waiting for the maelstrom to ensue. But every time, little Madi would pop right back up and keep on running hardly even noticing that she’d suffered any kind of setback. She rarely cried from pain. She saved tears for the more important things like not being able to have ice cream or having to go to the bathroom. I remember marveling as a young mother at her strength. This year, if I have learned anything from Madi, it is that strength is a choice. I have gained incredible admiration and respect for her as I watched the patience, faith, and grace with which she dealt with these struggles. She has always been good at self-soothing, but this year was just breath-taking. She dealt with challenges that most people will never have to face and she did it with humor and courage. She trusted us – her parents and medical team - implicitly that we would choose the best options for her health. She accepted the hard things she had to do with faith, knowing that they would ultimately help her in the long-run. Recently, I was telling Madi a story of my grandfather whose feet had gotten frostbit and gangrene from being submerged in freezing rain in a foxhole during WWII. The doctors told him they would have to amputate his feet in the morning. It ended well, they didn’t have to amputate; but as we were telling her this story, Madi was apparently fading in and out of sleep, but snapped to attention when she heard us say that the doctors would have to amputate. She loudly said, “I can hear you, you know… I don’t want to hear about what the doctors are going to do to me.” She laughed in relief when she found out we were talking about my grandpa, not her. The sweetest thing to me was that she did not question why or what they were going to do. She did not even say, ‘why are they going to amputate my legs for brain cancer?” She just accepted that what Kurt and I were talking about was in her best interest. That faith is exactly how she trusted in Heavenly Father, too. She always knew that He was there, helping her, even though he didn’t take this trial away. We would often say in our prayers, “thank you for our trials, even though<br />
we hate them.” And she truly exemplified the ability to submit peacefully to the will of God. That legacy – I hope- will live on through our other kids and our grandkids and rest heavily on the following generations long after we all are gone.<br />
<br />
I would be willing to bet that Madi is here right now, basking in the warmth of people expressing love and admiration of her life and mission on earth. I recently posted on social media a picture of her before our lives turned upside down… before we knew I was pregnant with a baby who wouldn’t live. Before we knew about the ugly cancer that would ultimately take her life. I long to have that day back. I would hug her and cry and read with her and talk about life and friends and school. But then I think about the person I am now today after all that has transpired, the way our family has changed because of her, and I feel truly humbled at what she accomplished in her short life. I told my friends recently that I felt like Madi handed me a pair of glasses that suddenly brought the world into crisp focus… and then left. I am so sad that she is gone. I miss her more than I can possibly express. I am sad that she will miss all the milestones her friends will get to have here on earth. But I also think of her legacy of learning, creation, integrity, and strength, and I can’t imagine anyone having a better skill set to deal with what she had to endure. I feel inside that somehow there’s a purpose to this… that maybe she even chose this path before she came. I think maybe she knew what she would have to give up and was willing to do it, knowing it would have a happy ending. There is an Albus Dumbledore quote that we had displayed in her room- that she memorized at the end. It says, “Happiness can be found in the darkest of times if one only remembers to turn on the light.” Madi always just knew how to turn on the light. She deliberately chose to live in the light. We may not feel the happiness now, but I have seen from her example that it’s there if we choose deliberately to find it. And we will. I know we will. I say these things in the name of Jesus Christ, Amen.</div>
Jenn Knighthttp://www.blogger.com/profile/17068200258878833318noreply@blogger.com2tag:blogger.com,1999:blog-5564102773556016939.post-6421952582747531462018-03-23T03:29:00.001-07:002018-03-23T07:41:19.347-07:00Good Grief<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: inherit;">If there has ever been a
misnomer in the English language, this would be it. Good grief, indeed!
There is nothing good about it. At all. Last week was a big week for
us. We celebrated Anna's third birthday with a noticeably smaller family,
and the next day, we hit the one-month mark since Madi left us. I guess it's our new normal now... happy and sad entertwined together. </span><span style="font-family: "times new roman" , serif;"><o:p></o:p></span></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhycfRw3poBmtcPPC1lV9ymS4dRXcjWv6-BiYW8ac6H9dKkcoWaQNZJ-f2LZa8eh9xnSBL4YKKUD6n9aLQMHxkthJLUKl14tRNsRXDJHhl20madqxHke0BaEJtPFbDCg-AnMMCo9PVIG6eK/s1600/IMG_7559.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhycfRw3poBmtcPPC1lV9ymS4dRXcjWv6-BiYW8ac6H9dKkcoWaQNZJ-f2LZa8eh9xnSBL4YKKUD6n9aLQMHxkthJLUKl14tRNsRXDJHhl20madqxHke0BaEJtPFbDCg-AnMMCo9PVIG6eK/s640/IMG_7559.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Madi and Anna shortly after Anna's first birthday</td></tr>
</tbody></table>
<br />
<span style="background-color: white; color: #212121; font-family: "segoe ui web (west european)" , "segoe ui" , , "blinkmacsystemfont" , "roboto" , "helvetica neue" , sans-serif; font-size: 15px;">P</span><span style="font-family: inherit;"><span style="background-color: white; color: #212121;">eople ask how I'm doing a lot. I usually just shrug my shoulders because I'm not quite sure what to say. How can I explain what this feels like without bursting into tears or throwing something? :) I usually spend most of my days in anticipation of the blissful few seconds after waking when I haven't remembered yet what is going on and everything feels fuzzy and warm and right. It's as close as I've been able to get to taking a break from the grief. It doesn't last long, though. As soon as I'm coherent, the reality comes rushing down like a sandbag falling backstage at the opening of the curtain. She's gone. And so is my baby Frederick. And the future feels bleak and uncomfortable and impossibly hard.</span><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #212121;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #212121;" /><span style="background-color: white; color: #212121;">This month since Madi's death feels simultaneously like four minutes and four years. Planning the funeral and burial was emotionally taxing, but so many friends came to our aid to help take over details that the burden felt light. </span><span style="background-color: white; color: #212121;">They say if you are ever having a bad day, just go to a Mormon funeral and it will perk you up.:) I felt like this about both services.</span><span style="background-color: white; color: #212121;"> Focusing on how sadness will become happiness eventually is refreshing and renewing, even if it's still... well, sad. Services in Utah brought lots of friends and family to our side, many of whom we had not seen in years. We had dear ones fly from all over the country to see us and attend. It was so wonderful to be surrounded by love like that. The music - assisted by Madi's old piano teacher as well as singers, organist, and conductor from the Mormon Tabernacle Choir - brought us solace in a way that nothing else could have. We buried Madi next to her grandpa and baby Frederick. We still find great comfort knowing they are all together. After a whirlwind five days in Utah, we flew back to Boston and had a beautiful memorial here. We were completely overcome at the outpouring of love and support we received. Friends set up 500 chairs at the chapel and every seat was filled with family, school teachers, staff and administrators, friends from school and the community, work colleagues, doctors and nurses from the hospital, and our church family; they all came to memorialize our dear Madi. I could hardly look out when I was speaking because I felt so much gratitude and love. The music, though similar in many respects to the Utah service, took on a very personal element with Madi's friends- those who knew her well- singing on her behalf. It was so incredibly touching to hear. We are lucky to have so many good things to say about Madi. We are so proud of what she accomplished in her short life. It was good to focus on the joy she brought to us, the good things we learned from her, and the hope we feel for the future. I love this part of our faith. I love knowing that death is not the end.</span></span><br />
<span style="font-family: inherit;"><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #212121;" /><span style="background-color: white; color: #212121;">Even though we are using good tools to help sort through this mess doesn't mean mourning isn't very hard work! I often compare my grief to a 500 pound gorilla that crawls on my back every morning. The gorilla pulls my hair and makes me cry. It pinches my brain and makes me wince in pain at both good and bad memories. I get so tired of carrying the gorilla around that sometimes I get irritated at nothing or get unexplainably tired. I find myself walking in a haze a lot, trying to remember everything I did not have to even think about before. I sometimes space out when my kids are talking to me because my gorilla puts his hands over my ears and blocks out anything except Madi memories replaying over and over in my head. When the gorilla gets too heavy, I may snap at people I love who are also carrying their own gorillas and are equally annoyed. Sometimes I ask my gorilla to get off and sit away from me for a while. That usually doesn't work, but I still ask. Regardless, it's often a zoo around our house with some or all of us crying and wishing the stupid gorillas would just leave us alone. Luckily there has been no literal poo-flinging, as I hear monkeys are wont to do. But we are definitely wading through a lot of metaphorical crap on a daily basis.</span><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #212121;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #212121;" /><span style="background-color: white; color: #212121;">The social scientist in me likes to distill complex emotional issues into statistical estimates because then they feel more comprehensible and orderly. So if I had to estimate my grief percentages, I would say that I spend about 60% of my time carrying this heavy gorilla around with all the bad feelings that accompany it. My activities include crying, watching old videos, crying some more, looking at pictures, smelling Madi's clothes, cuddling her stuffed animals, or reading her books. I also spend a good deal of this time staring off into space trying to figure out what just happened to us. Then maybe 35% of the time is spent trying to pretend the gorilla is not there. Usually this percentage involves me laughing and playing with my other kids, cuddling them on the couch, reading stories with them, and making plans for all the fun things we will do soon. Kurt and I spend some of this time alone together at the temple, talking about logistics of life now, reminiscing, or watching </span><i style="-webkit-font-smoothing: antialiased; background-color: white; color: #212121;">Monk </i><span style="background-color: white; color: #212121;">(</span><span style="background-color: white; color: #212121;">typically falling asleep before the end)</span><span style="background-color: white; color: #212121;">. The other 5% is spent thinking about others: all the wonderful people who are still cradling us in love and support or others who are also carrying heavy loads right now. Unfortunately, my tender heart can't take more than 5% because it may explode from over-usage. I hypothesize that over time, these percentages will shift. Maybe the gorilla will lose some weight or maybe I will just get stronger muscles and deadened sensitivities to his poking and prodding. Either way, I am tenaciously holding to my hope that the future will be brighter and lighter.</span><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #212121;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #212121;" /><span style="background-color: white; color: #212121;">In our faith, we have a tradition of 18 and 19 year olds leaving their families and donating a year and a half or two years of their lives to God. We call it serving a mission because they pay out of their own pockets and agree to do nothing but focus on others and teach about Christ. In order to be allowed to serve, these young people must agree to abide by stringent rules about grooming, dress, behavior, and speech. They are assigned to live and work with another missionary of the same gender (termed "companion"). Companions are forbidden to separate from each other, not even for a quick trip to the store. In addition, they do not get to choose where to go, they are "called" to a specific area; anywhere from Nebraska to Ghana, Salt Lake City to Mexico City, Amazonian rain forests to Mediterranean beach fronts. Mormon missionaries are literally EVERYWHERE :). Because these missions are voluntary, not everyone chooses to serve. There are many Mormons who choose to sew seeds of goodness in their own spheres of influence at home. I chose to go, hoping to experience a rite of passage from adolescence to adulthood. And it did not disappoint. I grew up a lot in my 19 months in Taiwan. I learned (finally) how to converse in the Chinese language I'd studied for two years in college, I learned how to live without my parents (we did not return home for holidays and only called home on Mother's Day and Christmas), and I learned self-mastery in things I never thought I would master.</span><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #212121;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #212121;" /><span style="background-color: white; color: #212121;">Over this last year of my life, I have reflected again and again on my mission. I agreed to go knowing it was going to be hard and that I would miss home like crazy. I often felt stifled and uncomfortable. At times I disagreed with (and occasionally fumed at) arbitrary decisions made by </span><i style="-webkit-font-smoothing: antialiased; background-color: white; color: #212121;">boy leaders </i><span style="background-color: white; color: #212121;">who were </span><i style="-webkit-font-smoothing: antialiased; background-color: white; color: #212121;">younger </i><span style="background-color: white; color: #212121;">than me. I sometimes longed to have 20 minutes without a companion right next to me. In the process of all these hard things, though, I fell in love with the Taiwanese people, their history, culture, and language. I found joy in focusing on others so completely, and I saw God in the faces of people around me. I began to feel more Chinese than American by the time I left. And I definitely cried more leaving my mission than I had when I left home. </span><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #212121;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #212121;" /><span style="background-color: white; color: #212121;">When I think of Madi's time here on earth, I keep thinking over and over that it was like a mission was for me. Adjusting to earth life took a while, but once she got the hang of things, she really enjoyed it. Life may have sometimes felt stifling and uncomfortable, and I know she sometimes fumed at us for unreasonable rules. She savored her alone time. She found joy in helping other people and fell in love with our family and friends. I think she</span><span style="background-color: white; color: #212121;"> cried more about leaving earth than she cried when she got here. </span><span style="background-color: white; color: #212121;">Now, she is home and if it's anything like it was when I returned home from my mission, it's fantastic. She must have a sense of completion, a knowledge that she finished what she had been sent to do. I imagine she misses us like I missed the people on my mission after I left. I ached for them for a long time. But at the same time, I never really wanted to go back. I had finished what I agreed to do and I was excited for the next milestones in my progression.</span></span><br />
<span style="font-family: inherit;"><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #212121;" /><span style="background-color: white; color: #212121;">We find comfort in knowing she is home and likely very happy, learning new things, and helping our family on earth in ways she couldn't while she was here with us. But it also is still so, so hard to live without her. Everything is a reminder of how she is gone and life </span><i style="-webkit-font-smoothing: antialiased; background-color: white; color: #212121;">has</i><span style="background-color: white; color: #212121;"> to be different now. </span></span><br />
<span style="background-color: white; color: #212121;"><span style="font-family: inherit;"><br /></span></span>
<span style="font-family: inherit;"><span style="background-color: white; color: #212121;">My kids are all processing things as best as they can. They cry when they realize Madi isn't here to help them with things she used to help them with before. They laugh when they think of something funny she used to do. They do their best to honor Madi's memory and won't let us do anything they think Madi wouldn't want to do. They are also feeling lonely with the loss of two playmates this winter. They are begging us to adopt more kids, so I guess we are in the market now. :) </span><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #212121;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #212121;" /><span style="background-color: white; color: #212121;">Sigh. It's all just so hard right now. But we are moving forward, like it or not. We are one month closer to holding our babies again and that is a sublime thing to think about.</span><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #212121;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #212121;" /><span style="background-color: white; color: #212121;">We will post some of the funeral highlights soon for those who did not get to come.</span></span>Jenn Knighthttp://www.blogger.com/profile/17068200258878833318noreply@blogger.com5tag:blogger.com,1999:blog-5564102773556016939.post-64321223657632601632018-02-16T12:42:00.000-08:002018-02-26T06:05:05.723-08:00Madison Jolene Knight, 2005 - 2018<br />
<div class="MsoNormal" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;">
<span style="font-size: 12.0pt;">Madison Jolene Knight, 12, of
Belmont, Massachusetts, passed away peacefully at her family home on February
15, 2018 from brain cancer. She was born in Cincinnati, Ohio on July 16, 2005
to Kurtis Lee and Jennifer Jolene Rockwood Knight. <o:p></o:p></span></div>
<br />
<br />
<div class="MsoNormal">
<span style="font-size: 12.0pt;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSLKcdwtZZMKS2RiSDAQQkRjHuIUsF2D0WNo9jtpBDXJS6iiF9gD_-UTtG4jD1yVxixPnil6p_eiik0p6BkH5XK9jCbA6JQiwmymRxPp4VrnBe7s39Mzf55FCJQAZvqeJ5h7Rz2v4F9xOS/s1600/Nov+2016+Cropped.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1548" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSLKcdwtZZMKS2RiSDAQQkRjHuIUsF2D0WNo9jtpBDXJS6iiF9gD_-UTtG4jD1yVxixPnil6p_eiik0p6BkH5XK9jCbA6JQiwmymRxPp4VrnBe7s39Mzf55FCJQAZvqeJ5h7Rz2v4F9xOS/s320/Nov+2016+Cropped.png" width="308" /></a></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt;">Madi loved being with her
family. She was a leader in the family, a devoted and kind sister to her siblings,
and will be deeply missed by them. The highlight of her life was going on
family trips with her aunts, uncles and cousins, visiting family in Utah, and
attending “Cousin’s Camp” at her grandma’s home in Indiana every summer. She
developed very strong eternal bonds with her cousins and other family members
during these family vacations and spent hundreds of hours looking at scrapbooks
about the family events.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt;">Madison loved the Arts. She
played piano, cello, and ukulele and had a beautiful singing voice. She played
Princess Aurora in the town’s production of <i style="mso-bidi-font-style: normal;">Sleeping
Beauty</i> and then Gabriella in their production of <i style="mso-bidi-font-style: normal;">High School Musical.<span style="mso-spacerun: yes;"> </span></i>She<i style="mso-bidi-font-style: normal;"> </i>loved to sing at church and family
events and talent shows. <span style="mso-spacerun: yes;"> </span>Madi received
her own sewing machine at an early age and loved to sew doll clothing, pillows
and other creations as gifts for her friends and family. <span style="mso-spacerun: yes;"> </span>She taught herself to knit and crochet and
loved making scarves and other items for her dolls and beloved stuffed animals.
She was also a talented artist, budding photographer, and a gifted writer and started writing and
illustrating creative picture books at the age of 3.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt;">Madi attended elementary
school at the Mary Lee Burbank School, and was in the middle of her 7<sup>th</sup>
grade year at Chenery Middle School. She had a sharp intellect and received top
grades in school. She had an inquiring and logical mind and loved to explore
new things. Her favorite subject in school was Latin, and in her spare time,
she was learning French and German online.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt;">Madi was an avid reader. She
would often devour one or two books a day.<span style="mso-spacerun: yes;">
</span>She loved fantasy, especially the Land of Stories Series, anything by
Gail Carson Levine, and of course, the H<i style="mso-bidi-font-style: normal;">arry
Potter</i> Series (she read all 7 books before she completed second grade). <span style="mso-spacerun: yes;"> </span>Harry Potter was by far her favorite series
and she was completing the 13<sup>th</sup> iteration of the audio books when
she passed away.<span style="mso-spacerun: yes;"> </span>She was an expert in
Harry Potter trivia. Her dream was to visit Ollivander’s Wand Shop and have a
wand choose her at the Wizarding World of Harry Potter in Universal Studios.<span style="mso-spacerun: yes;"> </span>This dream came true when she was awarded a
special trip by the Make-A-Wish foundation just a month before her death. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt;">She was a devout member of
the Church of Jesus Christ of Latter-day Saints and active in the youth (Young
Women) program. She loved to perform family history work for her ancestors in
the Boston Massachusetts Temple, attend weekly church youth activities, summer
girl’s camp and was actively working on her Young Woman Personal Progress award,
working toward achieving her Young Womanhood Medallion. She had very close
friendships with the other young women in her ward as well as her close group
of friends at school.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt;">Her loss is felt deeply by all
who knew her. Madi will be remembered lovingly for her many kindnesses, her
loyalty to family and friends, her wonderful sense of humor and quick wit, her
extraordinary intelligence, her beautiful singing voice, her deep spirituality,
her constant desire to make correct choices, serve others and live her life as
a true daughter of God, and especially her faith and devout love for her Lord
and Savior Jesus Christ. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt;">In addition to her parents, Madison
is survived by four siblings, Maxwell, Rebecca, William, and Annabeth,
grandparents, Kenneth and Shari Knight (Spanish Fork, Utah), grandmother Jolene
Rockwood (Batesville, Indiana), step-grandfather D. Page Busken, (Cincinnati,
Ohio); 21 aunts and uncles, and 35 cousins. <span style="mso-spacerun: yes;"> </span>Her maternal grandfather, Frederick Rockwood
and her brother Frederick Kenneth Knight preceded her in death. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt;">A visitation will be held at
the Larkin Mortuary, 260 East South Temple, Salt Lake City, Utah from 6:00 p.m.
to 8:00 p.m. on Tuesday, February 20, 2018. Funeral services will be held at 1pm
on Wednesday, February 21, 2018 at the Church of Jesus Christ of Latter-day
Saints, at 125 N Sandrun Rd in Salt Lake City. Burial will be in the Rockwood
family plot in the Salt Lake City Cemetery after the service on Wednesday. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt;">A memorial service will also
be held in the Boston area on Monday, February 26 at 7:00 p.m. at the Church of
Jesus Christ of Latter-day Saints at 65 Binney St, Cambridge, MA. <span style="mso-spacerun: yes;"> </span>There will be a visitation before the service from
5- 6:45 p.m. in the same location. PLEASE NOTE: Limited parking is available at 65 Binney St. Addititonal parking available at 50 Binney St.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt;">The family requests that in
lieu of flowers, memorial donations be made, in honor of Madison Knight, to the
Massachusetts General Hospital Division of Pediatric Oncology at <a href="https://giving.massgeneral.org/children/donate/">https://giving.massgeneral.org/children/donate/</a>,
or to the Humanitarian Services Division of LDS Philanthropies, at <a href="https://www.ldsphilanthropies.org/humanitarian-services">https://www.ldsphilanthropies.org/humanitarian-services<o:p></o:p></a></span></div>
<div class="MsoNormal">
<br /></div>
Jenn Knighthttp://www.blogger.com/profile/17068200258878833318noreply@blogger.com12tag:blogger.com,1999:blog-5564102773556016939.post-6712244971769369112018-02-15T12:09:00.002-08:002018-02-15T12:09:39.161-08:00Madi's peaceful transition home<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_H3Ay2NR_1vaZa2rSz858sPoRRnC84syBQiFAwiQGY4l2AwpcNJNVvQmMjeIPDFgRQl-OcTVAWd6vcHtDmPaS0RGhtJwecsZbObV9AWKSbJArcSQ_ru40yyhSQmhvDeQTOUGJmFRJ0KyP/s1600/Knight2017-40.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1067" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_H3Ay2NR_1vaZa2rSz858sPoRRnC84syBQiFAwiQGY4l2AwpcNJNVvQmMjeIPDFgRQl-OcTVAWd6vcHtDmPaS0RGhtJwecsZbObV9AWKSbJArcSQ_ru40yyhSQmhvDeQTOUGJmFRJ0KyP/s320/Knight2017-40.jpg" width="213" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
Our dear Madi passed away peacefully early this morning. At the end, the pain and nausea and discomfort were so acute, we are sure she is relieved to be free from all of it. We are feeling really grateful for every second that we had her with us, especially since we nearly lost her last April. Max said she was lucky because she was the first one of us who would get to meet and play with Frederick. We miss her so much already, and she's only been gone for twelve hours. It all feels a bit overwhelming and sad; but it also feels oddly tranquil and holy. I guess since we can't have happiness every second, peace is a good place-holder until it returns. </div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
We knew a couple days ago when Madi's oxygen levels starting falling and her heart rate started speeding up that she was beginning her transition to the next life. I have spent so much time wondering exactly what was awaiting her after she left us. I've been taught my whole life that we all return home to the place we left before birth, but what exactly would that be like for her? I ran across this quote by Brigham Young (a former prophet in our church) a few days ago, and I have found myself reading it several times a day since then. I firmly believe that this is true, especially after having gone through this experience. </div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
"We have more friends behind the veil than on this side, and they will hail us more joyfully than you were ever welcomed by your parents and friends in this world; and you will rejoice more when you meet them than you ever rejoiced to see a friend in this life; and then we shall go on from step to step, from rejoicing to rejoicing, and from one intelligence and power to another, our happiness becoming more and more exquisite and sensible as we proceed in the words and power of life." (Crowley, Duane. <i>Life Everlasting, </i>98). </div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
We will hold a funeral for her in Salt Lake City, and then bury her next to her baby brother and grandfather. We will also hold a memorial service in Boston. We are still working out details for both services and will post more once we know more. Thank you all for your continued prayers. We feel them and need them more deeply than before. </div>
<br />Jenn Knighthttp://www.blogger.com/profile/17068200258878833318noreply@blogger.com25tag:blogger.com,1999:blog-5564102773556016939.post-27623324519550854402018-02-08T20:08:00.000-08:002018-02-10T12:11:38.091-08:00Madi update: Hanging in there<div class="separator" style="clear: both; text-align: justify;">
<span style="text-align: left;">Life here continues to move forward much too quickly as we watch our dear Madi slowing down. Every day brings new changes that we have to quickly adapt to. Our medical team was sure a few times this past week that we were facing our last few hours with her, and then each time, she seemed to beat the odds and pull through. Each time, though, she loses a little more function and slows down a little bit more. A couple weeks ago, she was so frustrated that she was losing basic abilities, that she said, "I'm starting to wonder if I'm ever going to get better!" This opened the door for the hardest conversation I've ever had in my life. Kurt and I talked to her about what was happening to her body. We said that just like a body prepares itself when a spirit enters this world (by getting in position for birth, kicking its legs to help exit the womb, etc...) so does a body prepare itself when the spirit leaves this world. Her body was not going to get better. She was dying. </span></div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="text-align: left;"><br /></span></div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="text-align: left;">She cried and said she didn't want to go, and we cried and told her we didn't want her to go either. But then we talked a lot about how good it would feel to be free of her sick body and how much more wonderful life on the other side is than life here on earth. She asked, "does this mean I won't have cancer anymore?" We told her that she had served her time and would never ever have to worry about cancer again. She smiled and softened as we talked more about how people she knew, probably Frederick and Grandpa Rockwood, would come to get her. Mormon theology teaches that before we were born, we all lived as spirits with God, our Heavenly Father. We knew each other there, before we were born, and are all spiritual brothers and sisters. We talked about what a huge, happy reunion it would be with all the people she could not currently remember, but who she would recognize when she saw them. Kurt said maybe she knew some people who ended up living in other countries or in another time period, and were probably excited to share their experiences with her. We shared stories we'd read from people who had near-death experiences, who died and passed over to the other side but then were revived, to help her understand what the process might be like. We shared quotes from prophets about what life might be like there. The longer we talked, the more peaceful she became. From that point on, she stopped getting so mad at herself when she couldn't do something she used to be able to do. She seemed much more at peace with what was happening. She said she wasn't afraid to die, but she was sad that she has to go so early, because there is so much more she wanted to do in life.</span></div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="text-align: left;"><br /></span></div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="text-align: left;">The best part about that conversation was that we actually believed what we were telling her! We were not making stuff up to help her feel better. What a great feeling to have a sense of purpose and direction that extends beyond all this mortal crud we have to wade through! That being said, just because we know what is happening doesn't make it easier to watch. And even though I know what is happening, I still fight the fear of actually saying good-bye on a daily basis. On those days we thought we were in our final hours, I sat and cried and held her close. Kurt and I took turns watching her through the night. After she pulled through, I became even more scared. For days, I was afraid to sleep, afraid that I would miss her - that she would have to make the transition alone and she would be afraid. I sat in the dark for hours watching her chest rise and fall and timing her breaths. She would often wake up and ask for me, then try to ask for help or mutter things that were hard to understand. One time, she unmistakeably said with tears in her eyes, "I just want to go home." I said, "You <i>are</i> home, Madi. We're right here." And she replied, "No, I'm not." I dismissed it, thinking she was just confused and still dreaming since some of her other requests and comments made at 3 in the morning were not so coherent. The combination of fear and worry that I would not be there when she needed me or that I would not wake up for her passing started to take its toll. After many sleepless nights, some of my friends offered to take a shift for a few hours between Kurt and I's shifts. That allowed my brain to turn off for a bit and rest knowing someone else was there to continue my neurotic checking (even though I'm quite sure no one else was neurotically checking). Hospice also approved an occasional night time nurse to come all night. Because of these helpers, I was able to sleep for 3-4 hours a night. Still, I was depleted and dragging every day. </span></div>
<div class="separator" style="clear: both; text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: justify;">
A couple nights ago, the night nurse had a chat with me. She told me that over the years she's been a hospice nurse, she has seen patients hold on for days until a family member arrived from across the country. She's also seen family sit vigil at the patient's side, refusing to leave, then in the five minutes they get up to go to the bathroom, their beloved passes away. She told me she really believes the person dying has a choice in when she or he will leave, and that the departed will choose what is easiest or the best for him/herself (as well as for the people s/he is leaving behind). She also told me that those who are surrounded by love here often take longer to leave than those who have no one. She mentioned (though I had not told her my previous experience) that people will often say in their last days that they want to go home. She said some people in the last few moments of life will reach out or call to someone they love who had previously died. The idea that Madi could choose when to go - choose if she needed or wanted me there liberated me from my anxiety prison. It made me remember our conversation with Madi... that she really was going home (not leaving it), and that our family will most assuredly come to accompany her there. Peace renewed, I slept soundly. Just tonight, Madi had a few minutes of lucidity and I asked her if she remembered saying she just wanted to go home. She squeezed for yes. I asked if she was talking about coming home here to our house (no squeeze- that's a no answer). Then I asked if she was saying she wanted to go home to Heavenly Father and there was a hearty squeeze again for yes. As hard as it will be to let her go, at least we know that she's ready and will be happier there. </div>
<div class="separator" style="clear: both; text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: justify;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDAPYE9b0n-EGFPOkGdLzDo7VWY1ZPp0WG1INz_9dvsZx6KTITCmapT2n0gXLjb7aAotYq7BEMp5qZkU4JqXA1NCrBY_WseoLyzgdUSAE-g5BZIZpPWleOTvH5vDnlx4QzH87fZJYAr2t0/s1600/IMG_6484.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDAPYE9b0n-EGFPOkGdLzDo7VWY1ZPp0WG1INz_9dvsZx6KTITCmapT2n0gXLjb7aAotYq7BEMp5qZkU4JqXA1NCrBY_WseoLyzgdUSAE-g5BZIZpPWleOTvH5vDnlx4QzH87fZJYAr2t0/s640/IMG_6484.JPG" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: justify;">
Kurt and I have holed up with Madi in this new bedroom we've made downstairs off the kitchen. It seems strange to me that we have only been in here for 2 1/2 weeks. When we first moved her in here, she was still getting out of bed, eating, laughing, playing her ipad, etc... We had movie night that first Friday in here with everyone cuddled up together with things feeling almost normal. It feels like months since then, especially looking at her now. She sleeps for most of the day and when she wakes up, she is groggy and in pain. She only interacts with us a little bit by giving us a hand squeeze or a thumbs up in answer to questions, a garbled "yes" or "no," and on occassion a throaty laugh. Anna got a weak smile today when she came in to greet Madi. </div>
<div class="separator" style="clear: both; text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZmD1awVSqpQ_8KNKs_xeE8h6heRfS3TVKPuTiW6JitaFEyEdq_KF6vdvRVIlKRb4iso3T5P2th_DCDBKIWVe62Mb79SHEChz7pj522iS57oPWAe_Mv5NAxJHr48ITx4EWprK2YOeFeiMr/s1600/IMG_9563.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZmD1awVSqpQ_8KNKs_xeE8h6heRfS3TVKPuTiW6JitaFEyEdq_KF6vdvRVIlKRb4iso3T5P2th_DCDBKIWVe62Mb79SHEChz7pj522iS57oPWAe_Mv5NAxJHr48ITx4EWprK2YOeFeiMr/s640/IMG_9563.JPG" width="480" /></a></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I read out loud to her when she's awake, and Kurt is ever the doting father, doing anything he can to make life better and more comfortable for her. We have both become psuedo-nurses, administering drugs three times a day to help control seizures, nausea, and headaches. We have enough medications here to run a pharmacy, I think. We took so many heavy drugs with us to Florida (as a precaution at that point), that the TSA flagged Madi's bag. Since she could not get patted down (nor would I have let them- don't get me started), Kurt stepped up and said he'd take one for the team and get the pat down. Kurt came back looking slightly traumatized after a lengthy and very thorough pat down, as the kids looked on with a mix of curiosity and fear. Max asked why they did that to him, and Kurt replied, "because they thought I had a bomb in my pants." Kurt edited out my very witty response to this comment. :)</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
We are trying our best to muddle through this mess and remain focused on WHY this is all so hard. It is hard because we love each other so much, and that is probably the best thing we could ever ask for in life and ESPECIALLY in death. Our love will never be taken away or destroyed and will even get stronger with time. It protects us from the lonliness, ugliness, and smut the world would try to douse on us. It assures us that we will always have support, help, and protection when we need it. Now THAT'S a useful super power! And it is one that has been passed down through our family for generations. So when my mom and I found these shirts in the clearance section at Target, we bought them and I made all the kids put them on for a picture. They say, "Super Powers Run In the Family." We may sometimes pine after the other more glamourous super powers like flying or having a retractable tail (my personal wish), but love is the most powerful one to have. It was the downfall of Voldemort, after all, the reason Harry was spared from the grave. It is definitely the reason we are going to make it through this after all is said and done. </div>
<div style="text-align: justify;">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIwFwiZn0wVvOdc6laqcLRLlQ_WSrBCTSYy1Jd16uN7tWW0086lZQf-UkS-IKcyHdDr47RzpPeYLSNKBbYtozg4YmT3PbbBwF7n-5UVv57vOQdlXpAekbEeDevgusZm5o4gdvP4-FwaX6k/s1600/super+powers+shirts.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIwFwiZn0wVvOdc6laqcLRLlQ_WSrBCTSYy1Jd16uN7tWW0086lZQf-UkS-IKcyHdDr47RzpPeYLSNKBbYtozg4YmT3PbbBwF7n-5UVv57vOQdlXpAekbEeDevgusZm5o4gdvP4-FwaX6k/s640/super+powers+shirts.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We are in our hotel room in Florida. This picture took approximately 10 minutes and about 100 shots to get. </td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: justify;">
<br /></div>
Jenn Knighthttp://www.blogger.com/profile/17068200258878833318noreply@blogger.com16tag:blogger.com,1999:blog-5564102773556016939.post-43140614583855701592018-02-04T02:01:00.000-08:002018-02-19T09:46:07.078-08:00Angels Around Us<br />
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;">There is a passage in the Book of Mormon where Jesus Christ appears to the people of the American Continent. It takes place after He has been crucified, resurrected and returned to His Father in Heaven. The record says that this was just one of His visits to God's children around the world. I have always found the account very touching, reading how Christ interacts with His people. They have just endured extensive natural disasters, losing many of their loved ones; they gather together for comfort at the temple. As they speak of Christ, they suddenly see Him descending from heaven. He radiates love to each of them, calls them to Him one by one, then asks them to bring their sick and afflicted to him and heals all of them. His followers bathe His feet with their tears in gratitude and love. Then He calls the children to him- these same children who have lived through horrible things and had likely lost many of their own family members- and He prays for them. The scripture says</span></span>, "<span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;">And no </span><span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;">tongue</span><span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;"> can speak, neither can there be written by any man, neither can the hearts of men conceive so great and marvelous things as we both saw and heard Jesus speak." (<a href="https://www.lds.org/scriptures/bofm/3-ne/17.17?lang=eng#16" target="_blank">3 Nephi 17:17</a>) </span><span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;">He then blessed the little children, one by one. After He was done, Christ says, "behold, your little ones." As the people look toward their children, they see the skies open and angels come down and encircle the children, "ministering" to them. </span><br />
<br />
<br />
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;">I have wondered many times what it would have felt like to be there for this event. I have imagined bringing my pregnant belly and sick daughter to the Savior and watching Him heal Frederick and Madi with a touch of His hand. I let that feeling of relief and gratitude wash over me and can think of no more appropriate response than pushing forward to bathe His feet with my tears. To be so close... to feel His presence...to witness healing like that would be so marvelous. </span></span><br />
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;"><br /></span></span>
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;">But I was not there, nor is He here now. And it stinks. </span></span><br />
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;"><br /></span></span>
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;">There is one aspect of this story that pops up consistently throughout the scriptures: the appearance of angels. Angels are always close to wherever Jesus happens to be. Sometimes they come before Him, sometimes they come after Him, sometimes they come instead of Him. But wherever they are, Christ is not far distant.</span></span><br />
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;"><br /></span></span>
<span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;">I believe in angels. I do not think they are an ancient remnant of biblical imgining. I think angels still come to us, and they come for two primary purposes: #1 to bring messages from God, and #2 to communicate love. They can be mortal or immortal, ethereal or fleshy. Sometimes we see and hold and feel them physically, and sometimes we don't. But just because we cannot see the wind as it cools us on a warm day doesn't mean it's not there cooling us. We can still see the effects and feel it around us and know that wind is a real thing. Angels help us know of God's existence the way rustling leaves signal that it's windy. </span><br />
<span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;"><br /></span>
<span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;">It is no secret that my relationship with God has gotten more complex and challenging this year. I have struggled to trust guidance and direction that I have never doubted in the past. I have wondered if my ability to communicate with Him is broken or if maybe what I said or felt in prayer could not get through for some reason. Especially after Frederick's death, I felt like suddenly what I'd always considered a two-way communication had shut down. My heart thoughts whisped away to some unknown place, and all I heard was silence. When I think about Christ saying on the cross, "My God, my God, why hast thou forsaken me?" my heart just aches. It aches because I heard my own tiny echo of his pain the day I sat sobbing in my bathroom after a particularly trying day watching my daughter vomit repeatedly, lose the ability to use the left side of her body, and try not to move because of the excruciating pain in her head. And I whispered, "Why do you hate me?" I did not say "us" because even in my darkest place, I could not bear to question His love for Madi. I always seemed to know she was precious to Him. </span><br />
<span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;"><br /></span>
<span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;">What I have realized as the relationship has started to change is that I am the one changing, not God. And what is most touching to me about it is that my Father in Heaven in His patience switched modes of communication so that I would know- be sure- that He is listening and that He IS aware of our hardships and He doesn't hate me. :) As soon as I started struggling to feel Him close, He began sending His angels to me. It felt like He wanted me to know that we did not have to endure all of this alone. </span><br />
<span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;"><br /></span>
<span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;">At moments when my I did not even have time to pray, but instead just think of what we needed, people began appearing to answer our needs and wants. Here are just a few stories, in no particular order: <span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;"><br /></span></span><br />
<span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiopL8yx65t4MCQ_a6CVgakCHJOR3pwmnuwWIpJQ8k7pso-f9DHvuSSH8YlOmw61VQaNhiCNipW-jmCE6rj3PfpYhGQVEca6YYIa2NsR97C3EV86CXNEIVhSHvnuYaed9BbXhKv0zsDsBZW/s1600/Copy+of+11-11-17-12.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1086" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiopL8yx65t4MCQ_a6CVgakCHJOR3pwmnuwWIpJQ8k7pso-f9DHvuSSH8YlOmw61VQaNhiCNipW-jmCE6rj3PfpYhGQVEca6YYIa2NsR97C3EV86CXNEIVhSHvnuYaed9BbXhKv0zsDsBZW/s320/Copy+of+11-11-17-12.jpg" width="217" /></a></div>
<ul><span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;">One morning when I woke up this summer, the burden of Frederick's pending loss weighing heavily on my heart, I thought, "I think I need pictures of his birth, even if he doesn't survive." Within the hour and without my saying anything to anyone out loud, my dear photographer friend who has captured so many beautiful moments in our family's life texted me asking if I wanted her to be at the birth. I did and she was. She spent hours waiting with me in the delivery room for Frederick to arrive, knowing he was already gone, and documented the most difficult moment of our lives up to that point. She also took pictures of our family- the only real pictures we have of our complete family- several weeks before. She did all this as a friend, free of charge. These pictures have been a lifeline for me as I have looked at them over and over again. </span></ul>
<div>
<div style="text-align: center;">
<span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;">***</span></div>
<span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;">I knew I really wanted to make impressions of Frederick's hands and feet since I would not have them for very long. I got online and started looking at plaster kits, quickly feeling overwhelmed by all the kits with mediocre reviews and reports of cracking, etc. I felt too tired to continue, vowing to revisit it when I had more time and energy to find a kit that would adequately preserve the only physical memory I would have of Frederick. That same day in the afternoon, a friend brought me a plaster kit saying she wasn't sure if I would want it, but had "spent a lot of time reading all the reviews" and she felt like she got the best one, one that "wouldn't crack or split." Then she and another close friend came the night of his birth to help prepare the kit. They were there immediately after Baby Frederick was born and I did not realize until later how much I would need witnesses to that night. I needed to know that others had seen and felt him. </span><br />
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
***</div>
<span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;"><br /></span>
<a href="https://cdn.shopify.com/s/files/1/0277/9205/products/KERSHISNIK_SHEWILLFIND_b8180f4b-28d9-4e29-a22d-829481f05ebf.jpg?v=1455730172" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://cdn.shopify.com/s/files/1/0277/9205/products/KERSHISNIK_SHEWILLFIND_b8180f4b-28d9-4e29-a22d-829481f05ebf.jpg?v=1455730172" width="320" /></a><span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;">I am a huge fan of the artist Brian Kershisnik. He is an incredible artist and an impressive person. One of his paintings shows a host of angels blessing a woman praying. One day I saw this painting again and thought, "I really love that piece. I really want to buy a print of it to display in our home." The thought quickly got buried under all the pressing things we had going on. Just a few days later, a friend brought a framed print of the exact picture to me. She said she had purchased it months ago with the intent of giving it to me, but was "waiting for the right moment." <span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;"><br /></span></span><br />
<div style="text-align: center;">
<span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;">***</span></div>
<span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;"></span><br />
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;">Two days after we found out that Madi's tumor was not responding to the immunotherapy, and the day before we left for Indiana, we hustled to the car to go to church only to find that our car battery had died. Neither of us had any idea where our jumper cables were or if they had even survived the move from our old house. We had barely turned the van key discovering the battery was dead when a dear friend (who incidentally lives 30 minutes away) came marching down the driveway with a Christmas present. And of course she had brand new jumper cables in her car. I was astounded. Clearly she had left long before we even knew our car would be in need of a jump; but I think our Father in Heaven knew and sent her to be there right when we needed her. Within five minutes, our car was up and running and we were off to church. I said, "this is just getting weird now." </span></span><br />
<br />
<div style="text-align: center;">
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;">***</span></span></div>
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;"><br /></span></span><span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;">Another friend rescued the envelope containing JK Rowling's signed photo from our porch after we'd left for Indiana, then overnighted it to us. It got lost in the mail and her twelve year old son spent two hours on the phone with USPS explaining to them that Madi NEEDED this package to brighten her life a little. They put a special search on it, located it, and it was delivered the next day, a day when Madi was having a very difficult time. <span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;"><br /></span></span></span></span><br />
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;"><br /></span></span>
<br />
<div style="text-align: center;">
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;">***<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;"><br /></span></span></span></span></div>
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;">After a particularly hard night of vomiting and painful headaches, we could not get the IV medicine fast enough that we needed to help Madi find relief (since she could not keep any of the oral medications down). She was not well enough to make another trip to the hospital. Early that morning, our neuro oncologist drove 30 minutes from his home to the hospital, picked up the medicine, drove 30 minutes to our house to deliver it, returned to the hospital, then later that day came back with Madi's favorite nurse so she could re-insert the IV (always an anxiety-provoking experience since her port is in a difficult position and hard to get on the first try). Madi breathed a sigh of relief and remarked at how comforting their presence was. This, by the way, was not a singular experience with this team of doctors. I could devote a whole blog post to their loving ministrations on Madi's behalf. </span></span><br />
<br />
<div style="text-align: center;">
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;">***</span></span></div>
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;"><br /></span></span><span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;">After coming home from the hospital this last time, Madi was really low emotionally. She was frustrated with how her body was degrading and felt like she had nothing to look forward to. The next day, her small group of friends showed up to comfort and laugh with her (we did not ask them to come, they just came because they wanted to see her). One of Madi's favorite doctors, (who also has made several house calls to visit with Madi), remarked that it was unusual for peers Madi's age to be so proactive and engaged with a friend who was at Madi's stage of struggling with cancer. Madi absolutely loves these girls and looks forward to their visits every time, which is nearly every week. They seem to show up right when Madi needs them most. They even came to visit in the hospital after her first surgery. </span><br />
<br />
<div style="text-align: center;">
<span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;">***</span></div>
<br />
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;">The same day, about an hour after her friends left, about half of the teachers and staff from Burbank Elementary came over and performed a flash mob for Madi outside of our house. I was so overcome at the work and planning and preparation that went into this act of love, and Madi thought it was the coolest thing ever and it really brightened her day. If you want to see for yourselves: </span></span><br />
<a href="https://youtu.be/ITeF5HMs4MQ" style="background: rgb(255, 255, 255); border: 0px currentColor; color: #167ac6; font-family: "youtube noto" , "roboto" , "arial" , sans-serif; margin: 0px; padding: 0px;" target="_blank">https://youtu.be/ITeF5HMs4MQ</a><br />
<br />
<div style="text-align: center;">
***</div>
<br />
<span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;">On the day in December when the doctors told us the medicine wasn't working and Madi had just a few months left to live, Kurt and Madi went to Trader Joe's late that evening. As they were checking out, one of the clerks came up to them with a bouquet of flowers in her hand and said to Madi, "It looks like you might be having a hard day, so I wanted to give these to you." She could not have chosen a better moment to give them to her. <span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;"><br /></span></span><br />
<span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;"><br /></span>
<br />
<div style="text-align: center;">
<span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;">***</span></div>
<span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;">Kurt's mom felt, before we even knew about Madi's diagnosis, that they should come visit for a while in May. She and Kurt's dad arrived two days before Madi's second surgery and stayed the entire duration of Madi's radiation treatments. His brothers and sisters also have uncanny timing for offering help, sending gifts, or making visits. My siblings, too, have been my lifeline emotionally throughout this whole ordeal. They make me laugh daily, which is one of the ways I have dealt with grief this year. My older brother has given me support and advice, many times saying things I know my dad would have been saying, had he been here. My younger brother gave me and Madi incredible blessings over Christmas that have been a great source of comfort to me. My sisters have all swooped in to help me in very individual ways that only each one of them could offer, and all at critical moments for us. </span><br />
<br />
<div style="text-align: center;">
<span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;">***</span></div>
<div style="text-align: left;">
<span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;"><br /><span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;">My mother has dropped everything six times this year and flown on her own dime to help our family. Kurt and I both spend all our time taking care of Madi right now, who needs constant, two-person help at this point. My mom runs the household. She will be 70 this year and she has more energy than I do. She is funny and kind, often the only thing that lifts Madi's spirits. Madi just adores her. </span></span></div>
<br />
<div style="text-align: center;">
<span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;">***</span></div>
<div style="text-align: left;">
<span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;"><br /><span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;">Twice now, I have wondered how I would handle life after all of this is over and still function. And twice now, my dear friend and babysitter from grad school has within a couple days of my prayers for guidance emailed and offered to come live with us for a while to help with my kids. This last time, she flew "home" to us from South Korea where she went to watch the Olympics. She offered it as a gift saying that her heart was already in Boston with us and so she was just bringing her body back to be with it. She is here at a critical time, helping us. She was also here for Frederick's passing and has strength that I have rarely seen in others her age. </span></span><br />
<span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;"><span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;"><br /></span></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcr1xQ6-cKd_1ERah8goOo2TAECi2kok1ueeZlCW0wlK7XfFkLYC4BGZ_GtRU7ujT7IX5WlQ9RslCTk49sWg0dLBgPw1vs-WylaPd8ms2hHA0hwYqxxqH80EvjsP6lZdWFPyiR5sbRNmM2/s1600/IMG_20170315_173830920.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="900" data-original-width="1600" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcr1xQ6-cKd_1ERah8goOo2TAECi2kok1ueeZlCW0wlK7XfFkLYC4BGZ_GtRU7ujT7IX5WlQ9RslCTk49sWg0dLBgPw1vs-WylaPd8ms2hHA0hwYqxxqH80EvjsP6lZdWFPyiR5sbRNmM2/s320/IMG_20170315_173830920.jpg" width="320" /></a></div>
<span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;"><span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;"><br /></span></span></div>
</div>
<div>
</div>
<div style="text-align: center;">
<span style="color: #333333; font-family: "palatino linotype"; font-size: medium;">***</span></div>
<span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;"><br /></span>
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;">Honestly, I could keep listing example after example of people who have come, letters or packages that have arrived, texts that show up right at a moment when one of us is struggling or losing hope. They often come</span></span><span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;"> after I pray for help, or pray for strength, or pray because I felt pushed past my limit. </span><span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;">Then there are the friends who show up to take my kids or laundry with equal gusto (some even making me feel like I am doing them a favor! ha!), and return them with food and gifts. Or the friends who come and sit with Madi during the middle of the night so that Kurt and I can get some sleep. Or Kurt's colleagues who have sent packages, flowers, meals, notes, emails, connections, and all kinds of help without any request on our behalf. </span><span style="background-color: rgba(255 , 255 , 255 , 0.01); color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif; font-size: 18px;">Sometimes I am able to tell people how timely their help is and other times, I am not. Almost always, these angelic ministrations address specific concerns we have or something specific we had prayed for. This continues to happen on nearly a daily basis. This happens with friends who are members of our faith and friends who are not. There are strangers who also respond to the call.</span><br />
<br />
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;">In a moment where I needed to feel God's love, but felt incapable, God sent his angels to give us comfort and love and messages from Him. </span></span><br />
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;"><br /></span></span>
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;">But I am certain our angelic visitations have not just been earthly. As our dear Madi gets closer and closer to the end, our connection to those beyond this world grows stronger and stronger. Humans have a sense, all of us, that isn't one of our five senses, but every bit as real. It's our "sensing sense," for lack of a better term. If you are in doubt, close your eyes and tell someone to approach you silently. You know where that person is. Your sensing sense can feel someone close. It's like the wind. </span></span><br />
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;"><br /></span></span>
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;">My sensing sense has been feeling others in close proximity for months. The room sometimes feels crowded with others. Yes, this could be my imagination, but given the concrete way God has shown his love to us through his earthly angels these last few months, I firmly believe that these spiritual wind gusts are ethereal angels God has sent to comfort and help us from the other side. </span></span><br />
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;"><br /></span></span>
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;">I have no doubt that my family who has gone before, especially my sweet Frederick and my ancestors who also lost children during their time in mortality, have been surrounding us and lifting us in ways that we cannot see right now. I sometimes just close my eyes and feel and let the warmness of support sink into me. I often wonder (and hope) if I will feel Madi like this when the time comes for her to pass over. </span></span><br />
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;"><br /></span></span>
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;">These angels- both mortal and immortal- are what keep us going. If that reality does exist- if life really does continue beyond death, then saying good-bye will be painful, but hopeful. I think often of that prayer Christ prays with the children on the American continent and wonder what he said. Did he bless them with strength? Did he tell them what powerful things they would do in this life? Did he pray that their knowledge of life beyond would be sure and steadfast? I also think often of those angels who swooped down after Christ's prayer and ministered to the children. Maybe they were those recently departed family members who came back to console their beloved children. Maybe they smiled and laughed and comforted those kids, reminding them that the separation was temporary. </span></span><br />
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;"><br /></span></span>
<span style="color: #333333; font-family: "palatino" , "palatino linotype" , "pahoran" , "georgia" , "times new roman" , serif;"><span style="background-color: rgba(255, 255, 255, 0.01); font-size: 18px;">All I know for sure is that we are surrounded by angels, seen and unseen. Thank you to those of you who have been angels in supporting and sustaining our family.</span></span>Jenn Knighthttp://www.blogger.com/profile/17068200258878833318noreply@blogger.com12tag:blogger.com,1999:blog-5564102773556016939.post-13434351794301473182018-01-22T04:39:00.002-08:002018-01-22T04:39:59.640-08:00Final StretchWhat a roller coaster we have been on over the last month. We found out on December 15th that Madi's brain cancer had spread like wildfire since the Halloween MRI. There are about four new tumors growing in and around the area where the original tumor was removed, a new one on the other side of the brain, and another one deep in her brain next to her brain stem. The experimental options for treatment we considered were moonshots at best. But given how aggressive this cancer is, unless they panned out within a few weeks, we knew we would run out of time to try them. We gave her an older chemo drug just before Christmas to try to slow the tumor down a bit and buy us some time to get into a clinical trial. We knew more than likely we were headed into the final stretch with Madi. And that final stretch was likely months, not years like we'd hoped. We had to start facing the hard reality that she was dying.<br />
<br />
I think many people around us expected this - had basically already said good-bye to Madi (based on the steady stream of stories and comments we received about dealing with the death of a child). But parents (even very informed parents) of a child with a terminal illness never give up hope that we- our child - will be the exception. Sometimes that hope is the only thing that gets us out of bed in the morning. We live hoping someone or something will swoop in to save her at the last minute, but also try to live as if every day is the last one we will have. It's such a strange and exhausting place to be.<br />
<br />
We made the decision months ago that our goal with Madi was to fill her life with as much joy and happiness as possible. This child has lived forty lifetimes over the last nine months. She has endured surgeries, medications (and their side effects), daily radiation for six weeks, hair loss, weight gain (from the medications), stress of not knowing what was coming next, missing out on fun things she could no longer do, physical pain and nausea that I cannot begin to understand, and the death of a sibling,. We have tried to counter some of this by trying to increase fun and laughter, special trips and outings. Our friends have spoiled us with gifts and fun things to do. Last summer we helped Madi develop a bucket list which we've been steadily working to accomplish. Kurt has been posting videos of the "bucket list moments" on Facebook. If you haven't seen them, you can watch them <a href="https://www.facebook.com/kurt.knight.77" rel="nofollow" target="_blank">here</a>. The first video was posted on December 9th even though we started the activities in August.<br />
<br />
When we found out the bad prognosis, we pulled the kids out of school a week early to go to Grandma's house for Christmas. We spent two wonderful weeks with family celebrating. My sister said she had a nagging feeling a few months ago that they should fly out to Indiana (from Utah) for the holiday, even though they rarely spend it there. We were so touched and so grateful because her daughter, Claire, is one of Madi's very best friends. Five out of the six Rockwood siblings and their families came to Indiana. The sixth was spending Christmas with another very sick relative otherwise he likely would have come as well. We have been overwhelmed with the love our siblings have shown to our family and cannot imagine how we would have made it through all of this without them.<br />
<br />
There have been many other things that have brought Madi so much joy, including a relatively-rare Christmas Eve snowstorm, a month-long slumber party with Mom (she's needed someone with her 24-7 since December 18th given her unsteadiness walking and loss of function on the left side of her body), lots of late-night giggling fits (because what else do you do in a month-long slumber party?), personalized video messages from each of the cast members of her favorite show, Studio C, wishing her a Merry Christmas, an autographed picture and letter from her writing hero, J.K. Rowling, and an iPad Pro she uses several hours each day to do color-by-number and listen to audio books (usually Harry Potter- she is finishing up her 13th iteration of the recorded series). I often see her laughing at emails and text conversations with her friends and cousins. Grandma put in a good word with Santa about the iPad after Kurt was hesitant to invest in a laptop for her. Thank goodness for Grandmas :). <br />
<br />
One of the miracles of the last two months (and there have been many) was a wonderful trip to Orlando over the past week, courtesy of the Make-a-Wish Foundation. If her doctors were a little nervous about her going to Indiana for Christmas, they were even less excited about the prospect of a trip to Orlando. Kurt said he kept feeling like we should consider it, but I was absolutely against it. I kept replaying all the worst-case scenarios over and over in my head. So we fasted about it. As we were praying for an answer, I felt the super-peace come back and the answer of yes, we should go. Yes, yes. As soon as the prayer ended, I told Kurt what I'd felt and we decided to go forward with plans; but as the day wore on, I started panicking again. What if, what if? I'm so risk-averse when it comes to health, this was probably the hardest answer for me to follow. <br />
<br />
So I prayed again and again felt peace. I could almost hear a voice inside me telling me that Madi's health would be preserved for as long as we wanted to stay in Orlando. Kurt joked that we would be moving down there for good. :) The doctors tentatively agreed to it, pending Madi's continued health. Make-a-Wish was absolutely amazing and arranged an entire trip in less than 24 hours. The morning of the trip, Madi surprised her siblings (we had told them they were staying home from school to go to dentist appointments :)), and we headed to the airport. Madi got increasingly worse as we headed to the airport- headache and nausea, which progressed to a migraine and vomiting by the time we arrived. While the volunteers from make-a-wish helped us check in for our flight, she was in such pain, we pulled the plug and took Madi to the hospital instead. We spent 6 hours in the hospital, getting an MRI and additional medications, and then went home for the night. Madi was still not feeling well. I won't lie. This was not my best day. I was so mad! Why? Why would God tell us - even <i>encourage us</i>- to take this trip if it was going to end up like that? I did not even want to go in the first place, so why would He support us if it was going to end up with Madi sinking to the depths of despair and Becca sobbing in bed saying, "why do such bad things keep happening to our family???" I think that night was one of the lowest nights I have had. I felt abandoned and questioned my relationship to God and my ability to receive answers to prayer. I had a yelling prayer with God in the car that night as I drove alone. I sobbed "why" over and over. I am not proud of this or of my momentary lapse in faith, but it happened. The next morning, Madi started feeling better and better. The medications they gave her at the hospital the prior day were kicking in. By mid-morning she seemed even better than before. The doctors sent a nurse to our house around 11am to assess her, and they cleared her to go. We decided to go forward with plans and catch the 2 pm flight. I was on pins and needles the entire flight down there, but Madi kept feeling really great. We put her in a wheelchair (a very comfortable one), and she had a blast that week! We made some really incredible memories. NOW, I see the wisdom in the direction we received. This trip was an indescribable blessing for our family. It was an escape from cancer, which is what Madi had desperately wanted for months. And I see the wisdom in waiting a day. That day in the hospital allowed the doctors to adjust her medications so that she wouldn't have problems in Orlando, and it allowed them to do a quick MRI to see what was going on, giving Kurt and I peace and clarity of mind that there were no really acute problems that would cause issues while we were away.<br />
<br />
She had no health problems in Orlando, but 8 hours after we landed back in Boston (Thursday evening), she had the first of a series of tonic clonic seizures that happened over a 12 hour period (the violent shaking kind also known as Grand Mal seizures - very scary to witness). While the doctors have been able to get the seizures under control quickly, the headaches and nausea persisted until Saturday morning. So we stayed the night in the hospital so they could try to address these symptoms and help her feel well enough to hopefully travel home and be comfortable there. She's had a couple other problems pop up since Saturday so we are still in the hospital, but we are hoping that today (Monday) we will be able to go home. <br />
<br />
A week ago, before we left for Orlando, the doctors estimated that Madi probably had weeks left to live. It's impossible to say at this point if that means one more week or several weeks, but it's not much longer. We haven't told Madi that she's dying, and currently we aren't planning to tell her, unless she asks. It feels like an unbearable burden to put on a twelve year old. If hope is what has kept us going, I think hope is what helps Madi find joy. In October, an apostle from our Church visited Boston and offered to give Madi a special blessing. For those who are unfamiliar with our faith, we believe that God has restored the original organizational structure of Christ's church to the earth: He calls a prophet and twelve apostles to lead his church during this time, just as He did during Biblical times. Apostles travel around the world teaching people about Christ. We often don't get to meet them in person, but this Apostle heard about Madi and asked to meet with us. Before the blessing, he told her that if the time came when she would have to leave earth before her parents, it would not be scary. She would not be alone at any time during the process. He said people from the other side that she knew and loved would come to get her. He also blessed her that she would not be taken even a minute before it was her time to go. While a rather traumatic experience for all of us at the time, it gave us an opportunity to talk about the reality of Glioblastoma and the real possibility of death. After several hours of heart-wrenching discussions, Madi said "I don't want to talk about death any more." Then later she said, "Mom, I've been thinking about it and I really don't think it's my time to go yet." After that, she's been very happy and upbeat and has managed to enjoy life. Since then, anytime we've talked with the doctors about her cancer, she's asked to leave the room, because she says she doesn't want to know what is happening. She's a very smart girl and we've told her that the medicines aren't working, that the cancer is growing, and that she almost died from it 9 months ago because it had grown too large. Last week when we arrived in Orlando, she said "You know if I could have any superpower, it would be the power of healing, so that I could heal myself." She understands what she's up against, and is choosing to remain hopeful. So currently our plan is to not force this heavy weight on her, but rather allow her to be hopeful as long as possible, even until the end if that's what she wants.<br />
<div>
<br />
This is such a heavy and intense time for us, but we're trying to help make Madi as comfortable as possible and savor every moment with her. We are so appreciative of the countless ways many of you have brightened her day and lightened our load so that we could focus all of our time and attention on her and the other kids. We have been overwhelmed with the outpouring of support, from my mom and siblings who have basically watched all of our other kids over the past month so we could stay at Madi's side, to friends who have sacrificed countless hours helping us with meals, laundry, cleaning, childcare, and countless other ways, to the thoughtful notes and gifts for Madi and our family, to Kurt's work colleagues who have taken on the majority of his work, to doctors and nurses who go above-and-beyond in caring for Madi, including house calls and late night phone calls and texts (even at 7pm on Christmas Eve!) to help get Madi in a good spot to enjoy her last days, to all the random strangers who have done so many things to help us. If there was ever any doubt that God was aware of us and our hard situation, it is undeniable as we see His attention and love for us through those around us. One day, I will write a blog post about this because the stories are incredibly touching. So thank you to all of you for being literal angels to our family right now. </div>
Jenn Knighthttp://www.blogger.com/profile/17068200258878833318noreply@blogger.com21tag:blogger.com,1999:blog-5564102773556016939.post-76722542895869672602017-12-15T22:00:00.001-08:002017-12-16T18:26:07.042-08:00Madi update: MRI report and invitation to prayFrom Kurt:<br />
<br />
Madi had her routine 6-week MRI today, and while we don't have all the information yet, I did want to share a very brief update. I so wish I had better news to share. Unfortunately her cancer has started growing aggressively in multiple places throughout her brain. The last 3 MRIs gave us some hope that maybe the small tumors that appeared had already been treated by radiation, or were responding positively to the immunotherapy. We do think we got some short-term benefit from the immunotherapy, but unfortunately it appears the cancer has now outsmarted it. Glioblastoma has been called "The emperor of all cancers" for a reason. It is incredibly sophisticated and if you block it using one mechanism, it will find 10 other mechanisms to continue its growth. <br />
<br />
Her neuro oncologist is reaching out to some of the other top cancer centers over the next few days to see if there are any clinical trials anywhere that Madi would be eligible for. We'll find out next week if there are any other options we can explore.<br />
<br />
In the meantime, Madi feels pretty good physically, and she's ecstatic to be leaving on Monday morning for her Grandma's house in Indiana, where we'll spend two weeks celebrating Christmas with Jenn's side of the family.<br />
<br />
We could really use prayers right now. Given how quickly the cancer is spreading, the doctors tell us it could start to impact her daily functioning. We are praying for Madi's health to be upheld through the holidays so she can just enjoy the time she has with family.<br />
<br />
Thank you again for all of your love and support.<br />
<br />
<br />
<br />Jenn Knighthttp://www.blogger.com/profile/17068200258878833318noreply@blogger.com7tag:blogger.com,1999:blog-5564102773556016939.post-65474344970329823542017-12-01T04:49:00.001-08:002017-12-01T04:49:31.092-08:00The AftermathUgh. Is anyone still reading this blog? If so, why? It's so DEPRESSING! I wish I didn't have to read this blog.<br />
<br />
I feel a litle like we are coming out of a shelter and looking around at the wreckage left from a tornado or hurricane. We prepared as best we could, but nothing can prepare you for the reality of tragedy.<br />
<br />
We feel immensely grateful for all of you- you who are praying and fasting and thinking and worrying about us. This network is what keeps me sane... knowing if I have to tap out for some crazy hard grieving moments, my friends and family will step in and help me and my family. Sometimes I make it to the end of the day and wonder how I got there... from where did this food magically appear? How did my kids all have fun playdates? How did my children get dressed?? Where did all this clean laundry come from anyway? Where did I read those healing words that are playing on repeat in my brain? My babysitter Nicole especially has been a literal godsend to us during an extraordinarily difficult time. I will miss her immensely when she leaves in a week. She has stepped in and kept our routine normal which has been a lifeline, especially to my children. My mother and Kurt took care of so many little details related to travel and funeral arrangements that I did not have the capacity to think through. My in-laws sent the children little gifts from Frederick to give them a connection to him and also help them feel comfort. There are so many people who have done things for our family, I cannot even start to name them. We are so deeply grateful. Thanks to all of you who do such wonderful things for us without asking for any recognition or thanks. We especially appreciate everyone for giving us the private space we desperately needed to process things. The ban is lifted now- you don't have to feel bad talking to us or dropping by or letting your kids come to our house to play. I can't promise we will be normal, but at least we are <i>trying </i>to be :).<br />
<br />
Today is the three week mark after Frederick's birth and death. These weeks have been the hardest of my entire life. I feel like I keep saying that and yet I keep having harder days, so maybe I should stop saying that! I left the hospital five hours after delivering my baby boy. We finalized funeral arrangements two days after that. Six days after his delivery, we flew to Utah, and just one week after I met my youngest child, I had to bury him. We had a small funeral with family members from both sides and then dedicated his grave (next to my dad who died three years ago). We spent the Thanksgiving holiday surrounded by family in Utah. Even though Kurt and I grew up in Indiana, we have always felt tethered to Utah in one way or another. <br />
<br />
I don't know what I expected to feel after losing a child; I cannot describe the depth of pain I have felt. I did not realize I <i>could </i> feel pain and sadness so deeply. My grief sucker punches me in the gut, causing me to double- over in pain on a daily basis. It is horrible. I wish it would end, but I know well enough that we have to go through this. I have been through injury before and know that healing is painful and inescapable. The only way around it is through it and it is HARD.<br />
<br />
The difficulty with pain associated with death is that the pain is so invisible to everyone else except the person struggling with it. There are no x-rays or MRIs that can tell you the state of your emotions or your faith. You cannot see how bad the damage is and you cannot track your healing. You just have to submit to these horrible waves of sadness that engulf your heart relentlessly, not knowing how long they will last. And let me tell you- they feel like they will never ever go away.<br />
<br />
But at the same time, something hidden inside me tells me that it won't always feel like this. I know this in my brain, but cannot feel it yet. When people ask how I am, I cannot say "good" yet. But we are on the path that leads to good eventually and that will just have to suffice.<br />
<br />
Because we wish we could have had the capacity to share the funeral with everyone, I am posting some of my comments from that morning. This captures a bit of how we have been feeling lately. See below:<br />
<br />
<h2 style="text-align: center;">
<b>Funeral talk for Frederick Kenneth Knight</b></h2>
<h4 style="text-align: center;">
By Jennifer Knight</h4>
<div style="text-align: center;">
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-size: 11.0pt;">"Months ago, as Kurt
and I wound our way through a cemetery a few blocks from our home, I thought
about burying my little one there, surrounded by strangers. I tried to imagine
visiting him, then leaving him on a cold and snowy Boston evening when the sun
sets at 4:30 and we shiver through our sweaters and wool mittens. And my
heart broke. I couldn't do it. Then I imagined burying him next to
my dear dad, Fred, here in Utah. I imagined big Fred next to little Fred
welcoming him, protecting him, and watching over him and I knew that's where he
needed to be. Luckily, Kurt felt exactly the same. </span><span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-size: 13.5pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-size: 11.0pt;"><br /></span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlKThr_s4kdBDKMCxIBzIbDjpu6QZqa7IvezPF8niq-WRxhO4c9MuA8iXBDVm-UbfaU6s7jdPiV3d0nISmbMwyT-QrX8Q-acqh7sto5J3JQdfIo0hFf90SrAV5-tnql5tx30D-4HXbyex1/s1600/IMG_7569+%25282%2529.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1201" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlKThr_s4kdBDKMCxIBzIbDjpu6QZqa7IvezPF8niq-WRxhO4c9MuA8iXBDVm-UbfaU6s7jdPiV3d0nISmbMwyT-QrX8Q-acqh7sto5J3JQdfIo0hFf90SrAV5-tnql5tx30D-4HXbyex1/s320/IMG_7569+%25282%2529.jpg" width="320" /></a></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-size: 11.0pt;">So we are here at the
same funeral home where we held my dad's services a few years ago.
Frederick will be buried in a casket that was hand-crafted by people active in
the arts' program my mother started in our community nearly 40 years ago.
It was stained by a dear family friend; the lining was hand-stitched by people
who knew and loved my father professionally at Hillenbrand and the Batesville
Casket Company, and Frederick's initials were carved in the top of the casket
by Batesville's premier wood-carver who added two cherubs on either side like
guardians watching over him. I feel like he is being buried in a hug, and
that is extraordinarily comforting to me. </span><span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-size: 13.5pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-size: 11.0pt;">We struggled a bit
knowing exactly how to memorialize this child’s life, since I was the only
person who really knew him alive. All we know of his life and personality
are the wisps of spiritual inclinations we felt while he was in my womb. </span><span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-size: 13.5pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-size: 13.5pt;"><br /></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-size: 11.0pt;">We found out early about
little Frederick’s Trisomy-18 diagnosis. We received word from the doctor
just a week or so after Madi’s initial diagnosis and first brain surgery.
Still reeling from Madi’s cancer diagnosis, we were again leveled emotionally,
as we have been many times over the last seven months. To clear my head,
I went for a walk around a pond close to my home. As I walked, I had a
conversation unfold in my brain. “How long do you want him to stay with
you?” the unidentified voice spoke. I replied in my head, “well, I
guess it would be easier if I were to miscarry. It would be easier to say
good-bye to a child I never knew.” I paused then asked, “how long does he
want to stay?” and the reply came quickly and surely, “as long as he
possibly can.” “Why?” I asked, incredulous that this spirit may want to
come to such a sick and surely uncomfortable little body. The response I
received was, “to be close to you, to feel your embrace and your love, to soak
in every second of mortality and know what it’s like to be part of your
family.” I said, “do we have days? Weeks?” and the voice responded,
“months.” </span><span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-size: 13.5pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-size: 11.0pt;">I don't know whose voice it was or if it was my own, but I believed it. Though I admit, I thought these
months it spoke of would be outside of my womb. I thought I would hug him on the
outside and that Kurt and the children would come to know him as I did.
Regardless, we all knew that our time with him was limited. Many times
over the last months, I have identified with Hannah in the Bible who promised
if she were to get pregnant, she would turn her child over to the Lord for the
balance of his life. As I read her story, I can almost feel her longing
as she prays to have a child, her relief as she gets pregnant, and her
desperation as she tells her husband after Samuel is born, “I will not go up
until the child be weaned, and then I will bring him, that he may appear before
the Lord, and there abide for ever” (1 Samuel 1:22). Oh how she must have
cherished every minute with him! Then when he was weaned, “she took him
up with her…and she brought the child to Eli [the priest]. And she said, … for
this child I prayed; and the Lord hath given me my petition which I asked of
him; Therefore also I have lent him to the Lord; as long as he liveth he shall
be lent to the Lord.” (1 Sam 1: 24-28). The child grew up in the
temple and every year, Hannah would go to visit this child with a new
jacket. I have thought a lot over the months about how intensely
difficult it would have been to hand over this child into the care of the
temple staff J. I also think of how light and happy she must
have felt every year at coat-delivery time. If it were me, I would have
wanted to sneak away to the temple every chance I got to see him and feel him
and know that he was doing ok. </span><span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-size: 13.5pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-size: 11.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-size: 11.0pt;">I really feel that Kurt
and I– like Hannah and Elkenah- have lent this child to the Lord. He is
in the Lord’s service now and will continue to be for the rest of his spiritual
life. I’m sure it was difficult for them to walk away from the temple
that day without little Samuel by their side. I would guess that
Hannah nursed that child for as long as she possibly could! For all we
know, he was seven! But I would be willing to bet that it was still
not enough time to make saying good-bye easier.</span><span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-size: 13.5pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-size: 11.0pt;">Shortly before Frederick
was born and it looked like he may not make it, I felt a desperation deep
inside me. I begged the Lord for more time with him… hours, minutes, even
seconds… so I could feel him warm in my arms and know he was ours. When
we discovered at the hospital that he was no longer with us, I sobbed.
And after all these months of avoiding the question, I finally felt it with
full force, “Why?? Why after all the miracles and blessings and hope we have
received over the last year, why now? Why would you not let me have him
for just a few minutes?” I admit, I was – and still am – a little mad. </span><span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-size: 13.5pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-size: 11.0pt;">But in quiet moments when
I really want to know the truth- when my emotions are so exhausted and empty
that they don’t interfere with my connection to God, Isaiah's words comes to
mind, “For can a woman forget her sucking child, that she should not have
compassion on the son of her womb? Yea, they may forget, yet will I not forget
thee… Behold, I have graven thee upon the palms of my hands…” (Isaiah
49:15-16, 2 Nephi 21: 15-16). This imagery makes it so clear to me that the
Lord has not forgotten us. Besides the physical markers I bear of
Frederick’s time on earth- the new vericose veins I have or the milk I have for
him that he will never drink -I have a connection with this child that I can
never ever forget. If the Lord loves us like that, then I know he will
not forget us now. If he loves us like a woman loves “her sucking child,”
then I feel great peace knowing He is cradling us in the arms of his love and
consoling us, even though we may not realize it. </span><span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-size: 13.5pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-size: 11.0pt;">When I held this small
baby in my arms and saw how delicate his body was, I realized two things.
First, I realized how painful and hard it would have been to live in that
body. I do not know if I could have watched my sweet little boy struggle
and cry in pain for moments before he passed on. Would that have been
better than having him pass peacefully in the womb? Secondly, I realized
what a miracle it was that he lived as long as he had. We had those
months I had been promised. I think he felt my embrace as I rubbed and
cradled my belly. I’m sure he loved every minute of the kids hugging my
belly and talking to him inside. He must have loved hearing story time
and listening to us pray for him every day. We love him as much as we
would have if we had had him for those few precious moments outside my
body. He is a part of me- of us- and we will never forget him. I
think he’s serving the Lord now… that like Hannah, we have turned him over to
God. When I think about our family home evenings, I think the other side
must be a much quieter place for him to learn eternal truths. I’m happy
that we have a guy on the inside who will help our family and strengthen
us. And I’m quite sure Frederick will come to us often to teach us what
we don’t know of the Lord. Like Hannah, I’m excited for our regular
visits to the temple when I may be able to catch glimpses of him and his growth
in the years to come. We are grateful for every moment we had him with
us. We wait hopefully, gratefully, desperately, for more time to hold him
and we feel with surety that it will come. </span><span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-size: 13.5pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-size: 11.0pt;">In the name of
Jesus Christ, Amen.”</span><span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-size: 13.5pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
</div>
<div style="text-align: center;">
<span style="font-family: "Times New Roman", serif; font-size: 12pt;"> </span><span style="font-family: "times new roman", serif; font-size: 14pt;"> </span></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
Jenn Knighthttp://www.blogger.com/profile/17068200258878833318noreply@blogger.com11tag:blogger.com,1999:blog-5564102773556016939.post-88385205538310765692017-11-10T13:50:00.000-08:002017-11-10T13:50:33.285-08:00Sad news I truly do not know what to say right now. We lost our sweet little boy. He passed away softly in the womb, which I think was probably very peaceful for him. We are very, very sad and have been through the whole gamut of emotions since we found out a few hours ago. I have not yet delivered, but am here at the hospital, trying to get things moving. Thank you so much for all your prayers. I think they were and will be answered in ways we have yet to see in the days and weeks to come. Right now, we are looking forward to time together as a family and request no visits for a little while. Thank you all so much for your love and support. We will post more details as they come. Jenn Knighthttp://www.blogger.com/profile/17068200258878833318noreply@blogger.com4tag:blogger.com,1999:blog-5564102773556016939.post-83351197102964392632017-11-09T23:13:00.001-08:002017-11-09T23:13:14.985-08:00Still waitingThis labor is unlike any of my other babies. I have clusters of intense contractions, maybe 5 or so minutes apart, then they taper off and disappear for a few hours. I'm tired. <div>
<br /></div>
<div>
I felt him hiccup a few hours ago and I think I felt some movement about an hour ago. I think he's hanging on. I will post more as I can.</div>
<div>
<br /></div>
<div>
Deepest thanks for your prayers. We all feel them! </div>
Jenn Knighthttp://www.blogger.com/profile/17068200258878833318noreply@blogger.com2tag:blogger.com,1999:blog-5564102773556016939.post-87377206440143147892017-11-09T04:18:00.001-08:002017-11-09T04:18:30.554-08:00Great Expectations<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPfSYVwfDiL4PX4_pNdTIASYkuOxF3Jibpfs7Gokea11CyvFPsONWn8ttD01S949MLxGYRRip6Y-mRbouibHTUJHsg0tQSjFjo_D_6L5BFyZg6Dpr5xvJuDOGKZI4wWa0ZIu3uHk2IcPbi/s1600/Knight2017-62.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1067" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPfSYVwfDiL4PX4_pNdTIASYkuOxF3Jibpfs7Gokea11CyvFPsONWn8ttD01S949MLxGYRRip6Y-mRbouibHTUJHsg0tQSjFjo_D_6L5BFyZg6Dpr5xvJuDOGKZI4wWa0ZIu3uHk2IcPbi/s320/Knight2017-62.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">photo cred: Dawn Wessman Photography</td></tr>
</tbody></table>
<br />
Feeling like I've been starting labor for a couple of days, I have been hyper-aware of the baby's movements. I know there is a high chance of Trisomy- 18 babies dying in the process of being born. Yesterday, the movements seemed to weaken and slow. Wanting peace of mind, I headed to my OB to "just check" the heartbeat. We found it, but it was low. Normal range for a baby is between 110-160. During all my other check-ups, baby has been clocking in between 120-140. Last night, his heart rate was 90, then it dropped to 70. <br />
<br />
Normally at that point, if the baby were healthy with a reasonable chance of survival, my OB would have taken me immediately to labor and delivery where I would have been hooked up to a constant monitor or maybe even directly to the operating room to prep for a c-section. Of course, for this baby, everything is different. There is no guarantee that a c-section would save the baby's life, and induction makes the process harder for struggling babies because everything gets more intense. She reminded us of the line in our birth plan that said we wanted to "respect the baby's natural life span" and encouraged us to go home and say our good-byes and prepare for a stillbirth.<br />
<br />
I cannot accept this. Not yet. I have tried and it just doesn't feel right. I asked her one more time before we left the office if she could check the heart rate. It leaped up to 135. I have no idea what is going on, nor do I have the strength right now to accept that I will not hold him alive. <br />
<br />
If God can restore sight to the blind or heal lame men, he can help this baby hang on for a few more minutes. I'm not asking for years, or even days or weeks. I'm asking for minutes... seconds. Just a moment to see him and feel him warm in my arms. I know there are so many women who pray for this and do not get it. So maybe this is not God's plan for us. In which case, I pray for the strength to accept whatever happens. I'm praying that he and I will be strong enough to make it through this, whatever this ends up being.<br />
<br />
I'm having strong contractions and have been all night, but they are irregular. Something is happening, but I'm not sure how far away I am from all of this being over. I will post more as soon as I can.Jenn Knighthttp://www.blogger.com/profile/17068200258878833318noreply@blogger.com24tag:blogger.com,1999:blog-5564102773556016939.post-20617856323380260242017-11-07T15:05:00.000-08:002017-11-07T15:05:59.474-08:00Madi update: Seize the dayLast week, after an exhausting evening of trick-or-treating, Madi returned home to sort her candy. As she sat down, flushed and tired, she faded out for a few minutes. Kurt and I asked her if she was ok, to which she responded yes, she was just tired. However, over the next few minutes, she started speaking more slowly, then had a hard time stringing words together, then couldn't say how old she was and struggled to walk. By the time she was in the car on the way to the hospital, she couldn't say her name, was fading in and out, and started vomiting all over herself. Kurt rushed her to Mt. Auburn (the closest hospital to us). We knew seizures were a possibility, but since this episode seemed so... un-seizure-esque (no shaking / seizing), we were very concerned it was something more sinister. One of the few published case reports on using immunotherapy for pediatric glioblastoma described how the drug caused brain hemorrhaging in a 10 year old girl, who then died from the bleeding. <br />
<br />
As I was flitting about gathering clothes and comforts to take to Madi at the hospital, I heard Nicole (our most wonderful short-term live-in babysitter) trying to calm William upstairs who was screaming, "I want my mommy!" I suddenly realized the other kids were probably terrified since they don't often see Kurt and I so visibly shaken without any explanation. I called them all together, gave them hugs, and told them something was going on with Madi's brain. We weren't sure how serious it was or what it was, but we needed to get her to the hospital right away. I admitted that Dad and I were a little scared, but that I felt like things were going to be ok. We knelt and prayed. I was so terrified, I could hardly keep from crying, but as I started to pray, I felt the most empowering peace come over me. It was not like peace I'd felt in the past, it was like... Super-peace :); like a peace that could <i>do </i>stuff. I suddenly <i>could not</i> cry and felt filled with warmth. I spoke with an authority that belied how afraid I felt. I prayed that the windows of heaven would be opened for us, that Madi would be healed completely from what was troubling her, and that angels would be present for each of my children that night to comfort them and help them sleep. It was by far the most quiet prayer we have ever had in this house! :) I could feel the children settle and Nicole texted me about 10 minutes later saying all the kids were asleep. Bedtime NEVER happens so quickly and effortlessly, so I felt that alone was miraculous. I keep asking myself why I don't ask for angels to put my kids to bed every night???<br />
<br />
The super-peace stayed with me as I drove to the hospital in time to see Madi loaded into an ambulance on their way to MGH. Kurt followed behind in the car. I hopped in next to her and once again found myself in an ambulance, wondering if this was the last day I would spend with my sweet Madison. She was beginning to get some of her speech facility back, so I kept her chatting and tried to encourage her to say her siblings' names and ages. We laughed and joked and talked about Harry Potter. I felt again like I wanted to cry, but couldn't. The amazing peace was stopping me.<br />
<br />
When we arrived at MGH, they knew they needed to get a clear sense of what was happening. They couldn't get her into an MRI fast enough, so they did a CT scan just to see if there was bleeding in the brain. She needed an IV first, so that meant the dreaded NEEDLE. This is the first time since her surgeries that she has had to do it without any kind of numbing or prep. We knew it was going to be a struggle. She was also still vomiting intermittently (also a first since before her first surgery), so I did not know how everything was going to play out. They couldn't find anyone certified to put a needle in a child's port. They also could not seem to locate any veins in her arm. So they used an ultrasound machine to "go fishing" for a vein, trying to find the vein while watching the needle on the ultrasound machine. While they were setting up the machine, she leaned in and in a small voice said to me, "I'm scared, Mommy."<br />
<br />
Every Tuesday, Madi has been taking voice lessons from a dear friend who volunteers her time and her decades of experience teaching children to sing to help Madi develop her talents. What an incredible blessing this has been! It is the one thing in Madi's life right now that is unadulterated joy. Earlier that day, Madi's teacher had taught Madi the song "Hallelujah" (<a href="https://youtu.be/ePbeNJ7po-I" target="_blank">the child- appropriate version from </a><i><a href="https://youtu.be/ePbeNJ7po-I" target="_blank">Sing</a>). </i>Madi had been singing it all day. That night, as the nurse fished for veins, she locked eyes with me and sang the chorus with all her might, "Hallelujah, Hallelujah!"(even though it was feeble at times and broken up by intermittent cries of pain). I suddenly felt very moved by the profundity of this 12 year old belting "hallelujah" in the midst of her darkest fear and deepest suffering. So much of what we celebrate of Christ and his mission on earth is joyful; but sacred are moments that allow us to capture a glimpse of Gethsemane and what that joy cost our Savior. It felt holy in that room as she sang. And for the first time that night, I cried. Not out of fear, but out of gratitude. The original song says that love is "a cold and... broken Hallelujah," and after feeling this moment, I think that is just the most beautiful and poetic way of describing a love for Christ.<br />
<br />
Over the next hours, we received layers of relief: CT showed no bleeding in the brain. MRI showed no signs of stroke. Around 4am they admitted Madi to the hospital and hooked her up to an EEG machine to try and detect seizure activity in her brain. It was so uncomfortable, she did not get a bit of sleep. The next morning, she had what they call a sub-clinical seizure. There were six neurologists in the room, one parent (Kurt), and - of course- Madi, and nobody knew she was having one! They discovered it later as they reviewed the EEG print-out. So they suspect these sub-clinical seizures were likely happening for a few weeks, and they culminated in a series of really large seizures on Halloween Night. This is in spite of the anti-seizure medication she's been on since the tumor was discovered in April. Apparently the dose just wasn't quite enough.<br />
<div>
<br />
Once we determined that it was seizures and not complications from the immunotherapy, the doctors felt ok about continuing treatment. All things considered, seizures were the best-case scenario for Madi, particularly since the MRI she had the week before showed that the new tumors we had been worried about (in August) appear to be shrinking. Our oncologist kept saying that the results were "fascinating," and they were "hesitantly optimistic" about the immunotherapy. While we are somewhat encouraged by this finding, we are wary of celebrating just yet. In the same MRI, they also detected two more suspicious spots, which they think are also likely malignant. All four of these tumors are on the margin of the original tumor they removed.<br />
<br />
What we don't know:<br />
- whether the August tumors are really shrinking or if it is a pseudo-response to one of the drugs she is taking to control inflammation caused by the immunotherapy drug<br />
- whether the seizures are being caused by new tumors irritating part of the brain or if they are being caused by inflammation, which happens in response to the immunotherapy effectively stimulating the immune system<br />
- whether the two "new" tumors (found in last week's MRI) were there all along and they are showing up because the immunotherapy is working OR if they are genuinely new tumors that have developed in spite of the immunotherapy<br />
<div>
<br /></div>
What we do know:<br />
- the original August tumors genuinely look like they are shrinking, both from the size and shape of the tumors in the most recent MRI, and also from the MRI spectroscopy (which measures chemical ratios often found in cancer)<br />
- this cancer is very aggressive!<br />
- Madi's mid-December MRI will give us additional information to guide her ongoing treatment<br />
<br />
For now, Madi is on massive doses of seizure medication, which is obviously problematic since we can't tell when she is having seizures. We have no idea whether it is working or not. (Is anyone seeing a pattern in our lives right now?) She seems to be stable and still happy, though emotional. There is not a day that goes by that I realize what an immense miracle it is that she is still with us.<br />
<br />
p.s. As long as we are counting miracles, I am still pregnant. I'm 39 weeks and the baby is still kicking!</div>
Jenn Knighthttp://www.blogger.com/profile/17068200258878833318noreply@blogger.com4tag:blogger.com,1999:blog-5564102773556016939.post-47532720659664876862017-10-24T11:57:00.004-07:002017-10-24T16:29:59.050-07:00Updates<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPAXyCCzMP0w8NlkUzI7bB5zctd9TiTjMzUo-QdV03srhDGKKMETUiPmwH6dO-qCL04FJTSegeNXVTTHTSFEyscpb-XGWFTjADPcLF8NrTeqZVFld2_q_gV_Of6aON2JXWeDW9n5gSLoX3/s1600/IMG_0277.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPAXyCCzMP0w8NlkUzI7bB5zctd9TiTjMzUo-QdV03srhDGKKMETUiPmwH6dO-qCL04FJTSegeNXVTTHTSFEyscpb-XGWFTjADPcLF8NrTeqZVFld2_q_gV_Of6aON2JXWeDW9n5gSLoX3/s320/IMG_0277.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.8px;">One of the photos Madi took for a photography class she is taking with other cancer patients.<br />
<div>
<br /></div>
</td></tr>
</tbody></table>
I know it has been quite a while since I posted any updates on here. I can always tell when I need to update because I get a steady stream of emails and texts asking me how we are doing. :) Oh how grateful I am to have so many so aware of our situation and poised at the ready to help if needed. What an incredible and indescribable blessing! Thank you to all of you who regularly think and pray on our behalf. We feel the power that comes from that more than you can possibly know or understand.<br />
<br />
A lot has transpired in the last two months, but then not a lot has changed either. I'm not totally sure how to report everything except to say we still hang in the web of uncertainty on all fronts.<br />
<br />
Madi has had three rounds of immunotherapy. She goes in once every three weeks for an infusion. Though the actual treatment does not last too long, we still end up at the hospital for a good 5-6 hours each time. It's become a wonderful bonding time for us. While her needle phobia is REAL, after the needle is in to her port, she relaxes and we just enjoy hanging out. We eat snacks and watch movies or Studio C. I sometimes read aloud to her or we play games. I love that I have been able to accompany her and spend so much quality time alone with her. I will treasure these times with her in my mind forever- they emotionally feed us both, even though being at the hospital is a drag.<br />
<br />
As far as how she is handling the treatments, we cannot complain. The side effects have been minimal. She gets bouts of mild nausea that usually disappear once she eats something. She still tires easily, but she's not as exhausted as she has been since radiation. And while she still gets the occasional passing headache, she usually does not need to take any kind of medicine to treat it. By and large, she feels really good and acts quite normal. She is going to school, but only for half the day since the full days she atttempted in the beginning of the year just wore her out emotionally, physically, mentally, and socially.<br />
<br />
This may have been obvious to everyone else, but I did not realize until about a month ago how much brain tissue was lost during the tumor resection. Glioblastoma does not grow with nice, well defined boundaries. It infiltrates the brain through tenacle-like growth and mixes in with healthy brain tissue. I knew this, but I guess I assumed the bulk of the mass was just tumor and that only the periphery branched out into blood vessels; but this was completely wrong. The tumor was so intertwined with the brain tissue that they had no choice but to take out brain and tumor about the size of a mandarin orange. Since the brain does not grow back or regenerate, it is a little unsettling to see a gaping hole in her MRIs. The tissue they removed controlled cognitive function (emotional expression, problem solving, memory, etc.) and also partially infiltrated the area controlling movement.<br />
<br />
I admit that my heart sank even more when I found this out, but almost immediately the realization of what a miraculous recovery she has had crept into my thoughts. No wonder the doctors worried that the second surgery would land her in a rehab hospital for 6+ weeks relearning how to walk and talk! That was a lot of brain to lose! I still feel like her recovery directly resulted from the outpouring of fasting and prayers offered on our behalf. She has had no motor delays and while it takes her a little longer to string sentences together now, the fact that she still communicates so effortlessly and with such an extensive vocabulary is truly awe-inspiring! Her brain is rewiring really quickly. One of the doctors mentioned how amazing children's brains are at recovering from trauma like this and rerouting and I have really seen this.<br />
<br />
We will have the next MRI in about a week. That will tell us more about what the tumor is doing. WELL, more accurately, the MRI will give us more information... more data points. Unfortunately, immunotherapy can cause swelling in the brain and it is often difficult to distinguish cancer-induced inflammation from therapy-induced inflammation in a brain scan. In the early stages of testing for this drug, they thought the swelling was tumor re-growth, but when they went in to surgically remove it, found out it was just a response to the immune system kicking into high gear to boot the cancer. They have some sophisticated ways of trying to differentiate, so now we are praying not only that this therapy will work, but that we will know if it is working.<br />
<br />
Another realization I had in my two month blog hiatus is that the immunotherapy- while really effective in some organs of the body- hasn't been very successful in brain cancer. Some surmise that this may be due to a lack of sufficient immune system T "soldier" cells in the brain to attack the cancer. I knew that the success rate was low, but I did not realize it was only a 5% rate of response. Ugh. My heart sank even lower when I discovered that. The one thing Madi has going for her is the rarity of her genetic mutation and her age. In other people with her specific genetic makeup, the medicine she is taking results in a 40% response rate in other cancers in the body (colon, lung, skin) though they are usually adults. We have not read about any children who have her same mutation. If we are going to use statistics to give a chance of success, I guess it would rest somewhere in the 5-40% region: a minority chance all around. However, since we seem to specialize in being part of the rare subset of the population these days, we are hoping this is the one time it will work in our favor.<br />
<br />
Kurt and I have also begun our plan B (and plan C and D) arrangements if this therapy does not seem to be having much effect. We want to make sure we are losing the least amount of time we can between treatments if a newer technology might be the thing that can help her the most. Kurt is so good at staying on top of the research, and we have gotten connected to so many good resources and people who have helped us look into new possibilities for her should we need to take a different course of action. These other options are considerably riskier and we have very little evidence (especially in children) that they will work, so any of these alternate paths will bring a whole new set of worries. We are just really hoping that the current therapy works.<br />
<br />
Meanwhile, the baby is still kicking, and I'm almost 37 weeks along (that's nearly full-term). His due date is November 16th. My OB seemed slightly surprised that the baby has made it this far. The last ultrasound showed very little amniotic fluid because there seems to be a partial blockage somewhere that is preventing the fluid from leaving his body after he swallows. BUT, I feel him hiccup a lot, which means he is swallowing and practicing breathing. So there must be some fluid circulating. The last ultrasound also showed a normal doppler (which measures oxygen to the fetus), which is great. What we do not know is how extensive the blockage is (or if it can be easily fixed), nor do we know how developed his lungs are, since amniotic fluid circulating through the baby's lungs and stomach is what allows his lungs and digestive system to develop. We will discover all these things once he is born. For the time being, he is safe, relatively healthy as far as Trisomy 18 goes, and continues to grow. I frequently remember that if I count this time he has been growing in my belly, I have had him with me for nearly a year already and that is just glorious. I hope everyone else gets to meet him, too.<br />
<br />
As for the rest of the family, because things feel so normal right now, it is sometimes hard to remember that we are in the eye of the storm. That hard things are yet to come. I convince myself that I am back in my old life dealing with little problems that don't matter much in the long-run. This only works in short bursts, since we are constantly reminded that things AREN'T normal and probably won't ever be the same. And so life continues to ebb and flow with happiness and grief.<br />
<br />
One of the things I have struggled with most is the feeling of helplessness I feel on a continual basis. The realization that I'm really not in control of anything has been at once frustrating and liberating. Mostly frustrating, I admit. How I can be frustrated by not having any control, but I also simultaneously feel exhausted by decisions, I do not understand. One minute, I find myself feeling agitated that the doctors scheduled out all these appointments for us without consulting us AGAIN and then the next minute I find myself agitated when Kurt asks me which shirt he should wear. A couple weeks ago, the bagger at the store asked me if I wanted one or two bags for my groceries, I helplessly responded in an exasperated voice, "Will you please decide for me?" I am trying to learn the art of delegating out the inconsequential decisions that seem to deplete my energy, but still hang onto the bigger decisions. I have so much respect for my husband who does this regularly with grace and aplomb.<br />
<br />
Of course, the underlying issue in all of this is the naked realization that we actually have very little control over our lives at all. I feel like the little kid on the amusement park ride who has suddenly discovered the pedals I'm pushing really DON'T have any affect at all on the movements of my vehicle. Regardless of all these decisions we're making, it feels that fate will march its course steadily and we will have to accept that course even if we pedal as fast and as hard as we can.<br />
<br />
I am slowly experiencing the peace and solace that comes when I just let go. I have stopped trying to tell myself not to worry. I have stopped trying to avoid the thoughts that come when I think of what could happen without the miracles I so desperately hope will happen. Sometimes I have to go there... to that scary place where I have four children instead of six. Sometimes I have to cry hard and admit that we have no control in the end. Oddly, just visiting that place is extremely empowering. I come back to our current reality where I have all six babies with me, and I can see now that our homeostasis is peace and happiness. We may temporarily depart from it for a while, but we will come back because it is home. We will be ok, whatever happens. Once someone has tasted the fruit of joy and love and belonging, I think she never could be settled with anything less than that heaven. I feel more certain now than I ever have that we will make it through all of this mess and be stronger and better afterwards. And when we are all together again, it will be beyond happy. It will be a word that I don't even know yet :). And it will look a lot like the picture above that Madi took for her photography class a few weeks ago.<br />
<br />
Life is sweet right now. We are reveling in the time we have and the time we will have. For now, that is enough.<br />
<br />
Love to all of you!<br />
<br />
<br />Jenn Knighthttp://www.blogger.com/profile/17068200258878833318noreply@blogger.com4tag:blogger.com,1999:blog-5564102773556016939.post-32010710276111785612017-09-05T02:21:00.001-07:002017-09-05T06:20:45.388-07:00To "Bob"Dear Baby Brother-<br />
We don't have a name for you yet, but your siblings call you "Bob," for some reason. <br />
I thought maybe it would be therapeutic for me to write to you, since our only interaction is me waiting for you to move and wiggle. Maybe this letter will help you know how much we love you already. <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgrTgr1UxqPlijcOqwDhl8LHQLZ5ZzA6QNhGcWXLTe-udvOGDNsQdnYTwykafuOg9N8mx3hMK1yJLNa0C8WLxIK0US1hqETnuS83H-rqUp7-BKGXsYXuxTHnLSmFSkBWwCgTDf4ji5Ym9N/s1600/IMG_6263.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgrTgr1UxqPlijcOqwDhl8LHQLZ5ZzA6QNhGcWXLTe-udvOGDNsQdnYTwykafuOg9N8mx3hMK1yJLNa0C8WLxIK0US1hqETnuS83H-rqUp7-BKGXsYXuxTHnLSmFSkBWwCgTDf4ji5Ym9N/s320/IMG_6263.JPG" width="320" /></a></div>
<br />
Today was a restorative day for all of us. We went to our favorite beach here for the whole day. Your siblings spent it almost entirely in the chilly Atlantic water, body-boarding in the waves, floating down the sea river that feeds into the ocean, building habitats for hermit crabs and shrimp, and meeting new and old friends in the surf. William dug a big pit and oh! Anna desperately wanted to help! Of course, a two year old helping to dig sand usually ends up as a two year old filling in a sand hole. Anna got her feelings hurt. <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLEn-F8ZeyMHcm_yyVJXtLKv-PZZMqL26I0Ahj5Be_gfdZFzmCYx-OqGsi6aJafyfMClfcujnnfeVVxarTOgC_9vOe5yI-x7ekIGJem5k7LNgcxAC8GmwQZr1na5KCJ5ae5Di2JmVHTPwY/s1600/IMG_6274.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLEn-F8ZeyMHcm_yyVJXtLKv-PZZMqL26I0Ahj5Be_gfdZFzmCYx-OqGsi6aJafyfMClfcujnnfeVVxarTOgC_9vOe5yI-x7ekIGJem5k7LNgcxAC8GmwQZr1na5KCJ5ae5Di2JmVHTPwY/s320/IMG_6274.JPG" width="240" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
But it all ended up ok. Max took the reigns and helped William literally dig himself into a hole. Then, Max and Becca and Anna filled it back in with sand. They put a bucket over William's head and it really looked like William had disappeared!<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYARqfapGYtXu7FsKAtGHWJYakkqgc2FGvnj8pWMsvtVbRlV63ofJUyaZU3FvJdMXJmjajoJUtnhhpnEwJiDOvBucULhFeIIQiDBtKSHET2sEuFZeK3gktNyl1eaL1A8mj0lL2BII3UC-5/s1600/IMG_6296.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYARqfapGYtXu7FsKAtGHWJYakkqgc2FGvnj8pWMsvtVbRlV63ofJUyaZU3FvJdMXJmjajoJUtnhhpnEwJiDOvBucULhFeIIQiDBtKSHET2sEuFZeK3gktNyl1eaL1A8mj0lL2BII3UC-5/s320/IMG_6296.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">William is under there! </td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHVXiNPTgK4xqfFYIMZEEOlilRhQWyte0l8_5I3HS6HAe783gWSyU1moDOuXDS9xqrEScKel0e20KhVE-6_cCCFGOAS_xQNAEac8WcUtOQI-wi8S9srjEjDR4WocyGEPQ3voEg7xtHoxZs/s1600/IMG_6303.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHVXiNPTgK4xqfFYIMZEEOlilRhQWyte0l8_5I3HS6HAe783gWSyU1moDOuXDS9xqrEScKel0e20KhVE-6_cCCFGOAS_xQNAEac8WcUtOQI-wi8S9srjEjDR4WocyGEPQ3voEg7xtHoxZs/s320/IMG_6303.JPG" width="240" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div style="text-align: left;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
Your dad played in the waves with all of your siblings for hours. He is such a good dad. Sometimes I cry because I worry you will never know him. But then that's silly. You will probably know him better than I do, seeing him from the other side. I don't need to tell you what a lucky little boy you are to have him as your dad. You probably already know. <br />
<br />
Madi and I spent a good part of the day sitting in chairs together. I read out loud to her. I like to think that you could hear me, too. I find it so comforting when I am with both of you together reading- my two children who need me most right now. My doctor says you are literally surrounded by me, and that brings me immense peace. <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiW1gTT5t9E8gJ-BHcElfotwGdJUAEvYV80BhypK0sBI0rjL9LS7_W9F7F-f7B1eNGZUrsuaoz8yJ6Nt-AoNp8e44zBxEJxT03T6hsQxxJsIHvLxaZxldY0Du-4HL41AduAsOB_HRQbyIxx/s1600/IMG_6268.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiW1gTT5t9E8gJ-BHcElfotwGdJUAEvYV80BhypK0sBI0rjL9LS7_W9F7F-f7B1eNGZUrsuaoz8yJ6Nt-AoNp8e44zBxEJxT03T6hsQxxJsIHvLxaZxldY0Du-4HL41AduAsOB_HRQbyIxx/s320/IMG_6268.JPG" width="320" /></a></div>
<br />
Madi's having a hard time right now. The immunotherapy for her brain cancer makes her really tired and sometimes kind of sick. She just feels generally yucky even if she is getting 15 hours of sleep. Will you watch out for her? Can you help her through this, I wonder? Something inside me tells me you two are connected in a special way. I hope that's true. She really needs a "guy on the inside" right now, helping her in ways that we cannot.<br />
<br />
We ended the day with a good-bye to summer trip to Dairy Queen where we talked about our favorite summer memories and ate ice cream. We had a good summer, full of wonderful trips and ordinary days, playdates and projects, reading and cuddling, lots of singing "Let it Go" and "Fight Song." <br />
<br />
I can still feel the sun on my face (probably because I got a sunburn :)), and feel almost like I can still hear the gentle cadence of the ocean in my ears. Days like this one are gifts. Do you remember the story of Frederick the mouse I read to Anna a lot, where he collects memories while all the other mice are collecting food for the winter? When everyone is cold and lonely, Frederick pulls out his colorful memories and tells stories to the other mice. You can't see the pages, but the memories are like colorful rocks, which all the mice see as Frederick tells his stories. This is a colorful memory rock that I will pull out again and again when the winter is cold and hard. <br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLudObV0RMbf8m8Dw3IX_OKPsW5sMVYs7T8DW_lwUsrbmztzb1P9MIzU4MOIL5VoLWgDzjuNiiQUVcGtqJAHym2pwKWDskUFv8ZFqySfv9DUmgf5iU7l9VjprvHx-L2V8B3iLQz8T__3sc/s1600/Frederick_large.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="305" data-original-width="480" height="203" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLudObV0RMbf8m8Dw3IX_OKPsW5sMVYs7T8DW_lwUsrbmztzb1P9MIzU4MOIL5VoLWgDzjuNiiQUVcGtqJAHym2pwKWDskUFv8ZFqySfv9DUmgf5iU7l9VjprvHx-L2V8B3iLQz8T__3sc/s320/Frederick_large.jpg" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDH5nRmtXpPIS44Zoxl-tNfueIqwH-PNwXAWgzsUxdxhsVywZDBRTBOvHdbF-mJrgKZzwEBi1P8qJE4ZbxGhcs8m29X2BDOKJQflG_e7zuK3n71FBdqWXzKuXJzTFHKx2XKwoQd40fiUPA/s1600/IMG_6251.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDH5nRmtXpPIS44Zoxl-tNfueIqwH-PNwXAWgzsUxdxhsVywZDBRTBOvHdbF-mJrgKZzwEBi1P8qJE4ZbxGhcs8m29X2BDOKJQflG_e7zuK3n71FBdqWXzKuXJzTFHKx2XKwoQd40fiUPA/s320/IMG_6251.JPG" width="240" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
I wish this gentle ocean cadence would ease me back to sleep. I woke up in the middle of the night again. I guess you know this happens a lot these days. I flipped sides and didn't feel your little kicks like I usually do when I change position. I guess I got worried, given the high risk of stillbirth with Trisomy 18. I sat wide-eyed in the darkness for what felt like an hour (but really it was minutes) until I felt your soft hiccup and I breathed deep and imagined hugging you. <br />
<br />
How it is possible for me to love you so much when I have never met you, I will never understand. Just know that I do. We all do. William cried this week when he realized you may not ever be able to wear the shirt he just grew out of. He comforted himself by talking about how you would be a ghost- like Zane in Ninjago. Then he realized what a fantastic advantage that would be for our Knight ninja force, so he's dealing with it as well as any four year old can be expected to deal.<br />
<br />
We have made it 30 weeks, little one. My heart longs to hold you alive. I hope you can make it another few weeks. Stay with us as long as you can. Oh how we long to show you the beach in person. Just hang in there. I like having you around. <br />
<br />
All my love,<br />
Mommy<br />
<br /></div>
Jenn Knighthttp://www.blogger.com/profile/17068200258878833318noreply@blogger.com11tag:blogger.com,1999:blog-5564102773556016939.post-39556014275331595602017-09-03T17:19:00.000-07:002017-09-03T19:43:39.219-07:00Madi's perspectiveFor those who don't know, our church is a lay ministry, or volunteer-based. This means that there are no hired clergy to run or administer programs. We all take turns leading meetings, teaching classes, organizing events and parties, and even cleaning the building based on what role (or "calling" in Mormon-speak) one has been asked to perform at the time. As you can imagine, this organizational model provides ample opportunities for growth and lots of quirkiness. One of the huge benefits is that children who grow up in this atmosphere are trained at an early age to speak in front of other people. Instead of the bishop (who is also a volunteer) giving a sermon every week, we all take turns giving mini sermons during our main sacramental meeting, and youth ages 12-18 are not excluded. In our ward here in Belmont, the leadership tries to get every 12 year old up to speak as soon as possible after his/her birthday. (NOTE: this is not a psychiatric ward, but rather our quirky Mormon name for a congregation. Admittedly, some of the wards I have lived in have felt more like the former than the latter, but that's another post for another day.) Madi had her first official speaking gig last Sunday. I loved her talk. She was crazy nervous, but once she got up there, she said all the nervousness went away. She did a great job. I have had a lot of people either ask for the talk or request for me to post it on the blog, so I'm going to oblige. :) I will cut and paste it below.<br />
<div>
<br /></div>
<div>
Again, to explain more of our lingo, "plan of salvation" is the Mormon phrase for the plan we believe God has laid out for everyone who comes to the earth. We lived in heaven with God before the earth life. We chose to come to earth with no memory of where or who we were before in order to have our faith tried and strengthened. After death, we return to God and live eternally with all of our family (both immediate and extended). We call this whole span the plan of salvation, or the plan of happiness. </div>
<div>
<br /></div>
<div>
Well, without further ado...</div>
<div>
<div>
<br /></div>
<div align="center" class="MsoNormal" style="line-height: 200%; text-align: center;">
<b><span style="font-family: "baskerville old face" , serif; font-size: 16.0pt; line-height: 200%;">Madi's Talk on the Plan of Salvation –
August 27, 2017</span></b></div>
<div class="MsoNormal">
I was asked to speak today on the plan of salvation. When I
think of the plan of salvation, I think of a number line. It goes back for
infinity, then there’s a really short line where we are on earth, and then it
goes on forever after our time here is done.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Elder Packer compared the plan of salvation to a <a href="http://emp.byui.edu/huffr/The%20Play%20and%20the%20Plan%20--%20Boyd%20K.%20Packer.htm" target="_blank">three-act play</a>, where our life before earth was Act 1. Our time in mortality is Act 2,
and our time after death is Act 3. He said:</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
"In mortality, we are like one who enters a theater just as
the curtain goes up on the second act. We have missed Act I. The production has
many plots and sub-plots that interweave, making it difficult to figure out who
relates to whom and what relates to what, who are the heroes and who are the
villains. It is further complicated because you are not just a spectator; you
are a member of the cast, on stage, in the middle of it all!"<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Some of my recent experiences make me think of Elder
Packer’s analogy. In April, I was diagnosed with brain cancer after an MRI
showed a mass in my brain. They rushed me in an ambulance to Children’s Hospital,
where I received a surgery to try and remove it. My mom asked me if I was
scared in the ambulance or while we were waiting in the operating room and I
told her that I wasn’t, although I do wish they had used the helicopter to fly
me there instead (which they considered doing). After my surgery, I stayed in
the intensive care unit for several days so they could monitor the swelling in
my head. I had a hard time sleeping because there was so much going on and they
woke me every hour to make sure I was ok. There was even a baby crying next
door. My aunt came to the ICU and brought some things to help us relax and be
able to sleep better. It was so nice to have some relief.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My mom said that my story has all the makings of a really
good book. I love the Harry Potter books. One of the reasons they are so good
is because there’s a lot of action. He gets into situations that seem dangerous
and impossible to get out of. But every time, he manages to escape Voldemort
and the book has a happy ending. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I think this is what Elder Packer is talking about when he
says that this life is like a three act play. Right now, I am in act 2. Elder
Packer goes on to say, <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
"Remember this! The line ‘And they all lived happily ever
after’ is never written into the second act. That line belongs in the third act
when the mysteries are solved and everything is put right."<o:p></o:p></div>
<div class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="MsoNormal">
That means that this life – Act 2 – is likely to be full of
action: lots of plots and situations that seem impossible to get out of. It is
a place where bad things happen to the Harry Potters of the world and sometimes
it can feel unfair because we don’t know the ending yet.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am grateful for the knowledge of the plan of salvation
because I know that everything will be happy in the end. I know this because I
catch glimpses of it here. Our Heavenly Father doesn’t intend for us to go
through hard things alone.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After my first surgery, the doctors realized that if they attempted another (longer) brain surgery, they would likely be able to remove the remainder of
the tumor. We did not realize this would be a possibility for me. The night
before the second surgery, I was really, really nervous about the needle poke for the
IV.<o:p></o:p></div>
<div class="MsoNormal">
My dad, my grandpa, the bishop, our home teachers, and
Brother Taylor came to give me a blessing. I felt really peaceful after
they finished. I know this was Heavenly Father helping me to know He was
watching out for me. The next day as we were preparing for surgery, I saw
Brother Taylor again, since he was going to be my anesthesiologist and would be
inserting the IV, and I thought to myself, “Ok. I know everything is going to
be ok.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Heavenly Father helps us get through Act 2 by giving us
glimpses of what Act 3 feels like. I know that Heavenly Father is watching out
for me during all the hard trials I am facing right now because he wants me to
be comforted and come home to Him. I am grateful for a knowledge of the plan of
salvation. In the name of Jesus Christ, Amen.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="line-height: 200%;">
</div>
<div class="MsoNormal">
<br /></div>
</div>
Jenn Knighthttp://www.blogger.com/profile/17068200258878833318noreply@blogger.com6tag:blogger.com,1999:blog-5564102773556016939.post-31033258429620188702017-08-31T03:41:00.001-07:002017-09-03T20:19:01.608-07:00Brief update on MadiNOTE: You can now click on "Subscribe" above to have new posts automatically emailed to you.<br />
<br />
This is Kurt posting today, as we wanted to share a quick update on Madi. <span style="background-color: white;"><span style="font-family: "calibri" , "helvetica" , sans-serif , serif , "emojifont";"><span style="font-size: 12pt;">After 6 weeks of doctor-free summertime bliss, Madi went back to MGH yesterday for a series of imaging tests, to see if any of the cancer has come back since the second surgery and radiation. By way of background, one author called Glioblastoma "The </span>Emperor<span style="font-size: 12pt;"> of all Cancers" because it is so sophisticated, tough to beat, and almost always recurs, so the doctors have to continually monitor it. But of course we've been holding out hope that Madi would be an exception.</span></span></span><br />
<div style="background-color: white; border: 0px; font-family: Calibri, Helvetica, sans-serif, serif, EmojiFont; font-size: 12pt; font-stretch: inherit; font-variant-numeric: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">
<br /></div>
<div style="background-color: white; border: 0px; font-family: Calibri, Helvetica, sans-serif, serif, EmojiFont; font-size: 12pt; font-stretch: inherit; font-variant-numeric: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">
She had three different tests yesterday- A brain MRI, a spinal MRI, and an MR Spectroscopy, a test that can be used to determine how malignant a tumor is. They did one of these after her last surgery.</div>
<div style="background-color: white; border: 0px; font-family: Calibri, Helvetica, sans-serif, serif, EmojiFont; font-size: 12pt; font-stretch: inherit; font-variant-numeric: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">
<br /></div>
<div style="background-color: white; border: 0px; font-family: Calibri, Helvetica, sans-serif, serif, EmojiFont; font-size: 12pt; font-stretch: inherit; font-variant-numeric: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">
Unfortunately the tests yesterday did find two new tumor nodules that weren't there three months ago (but adjacent to where the tumor was removed surgically). These could have happened in one of two ways, but it's impossible to say which of these is the case for Madi. First, they could have started growing after the surgery, but before radiation started. If that's the case, they would have been hit by lots of radiation and therefore may be dying. So that's the positive scenario. Second, they could have started growing / progressing during radiation, or since the end of radiation six weeks ago, which would be more troubling.</div>
<div style="background-color: white; border: 0px; font-family: Calibri, Helvetica, sans-serif, serif, EmojiFont; font-size: 12pt; font-stretch: inherit; font-variant-numeric: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">
<br /></div>
<div style="background-color: white; border: 0px; font-family: Calibri, Helvetica, sans-serif, serif, EmojiFont; font-size: 12pt; font-stretch: inherit; font-variant-numeric: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">
Since there is no way to know which of these is the case, it doesn't make any sense to attempt another surgery right now. This newer tumor may already be on the way out, knocked out by the radiation. So we're going to proceed today with immunotherapy (combined with Avastin) as the third leg of her treatment. The doctors will monitor her symptoms and then do another series of MRIs in a few months to see if it is growing or shrinking. In the meantime she'll head to MGH once every 3 weeks for medication, but will also head back to school next week. Hopefully the side effects from the immunotherapy will be relatively mild so that she can keep a pretty normal routine for the next little while. Thanks as always for your interest, support, and prayers.</div>
<div style="background-color: white; border: 0px; font-family: Calibri, Helvetica, sans-serif, serif, EmojiFont; font-size: 12pt; font-stretch: inherit; font-variant-numeric: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">
<br /></div>
Jenn Knighthttp://www.blogger.com/profile/17068200258878833318noreply@blogger.com1tag:blogger.com,1999:blog-5564102773556016939.post-87079112856679865132017-08-26T23:36:00.000-07:002017-08-26T23:36:21.940-07:00Madi update: Done with radiation and looking to immunotherapy<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzmDLrRZOgnUBZWiKWzSGzlGUopOkncZJZiDKOYYfMaaisBgHr_OJN_vRiZYeEx6A8HYuaCsqRKE-G1qiVR' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
NOTE: You can now click on "Subscribe" above to have new posts automatically emailed to you.<br />
<br />
Madi finished her 6 weeks of radiation treatment on July 20th, and it was such a surreal experience for both of us. Kurt had already taken the rest of the kids to the annual Rockwood family cousins' camp at Grandma's house while Madi and I stayed behind for a few days to finish up her treatment. Those last few treatment days were kind of lonely. On her last day, we had the 7am radiation slot before our flight out that morning. One of the nurses took this video and it makes me cry every time I watch it. Why am I the only one crying here??? This is a pretty accurate reflection of the last three months. Madi is cool as a cucumber and I'm a hot mess. :) She brought her "completion of treatment" certificate to cousins' camp with her and you would have thought she ran a marathon. She hung it on the wall and was very proud. In my book, what she did was a lot harder than running a marathon and I think she deserves every bit of pride she feels about completing this hard thing! I love being done with our daily trek to MGH, but I miss our dedicated one-on-one time together. Finishing radiation takes us one step closer to the waiting and the unknown and that has always been a hard place for me to live. I guess I'm going to have to get better at living in that space because it could literally last for the rest of our lives.<br />
<br />
Madi also ended the keto diet after finishing radiation. She had agreed to six weeks of it, but was very ready to stop. While she did lose almost half her hair, she managed to avoid most side effects (no nausea, headaches, or fatigue) while she was going through radiation. She attributed this to the keto diet since after she ended it, some of the side effects have surfaced. We are not really sure if that's just because the effects are starting to kick in or if it's because she's not eating keto anymore. She has mentioned a couple times that she may want to go back on the diet to see if she feels better, but it is a very difficult diet and we are not sure how it can be sustainable long-term (at least not at the level the research suggests may be helpful for tumor shrinkage). So, the jury's out. I finally managed to score a meeting with the epilepsy dietician at MGH. Since medication-resistent epileptic children have been using the keto diet for over sixty years to control seizures, I'm desperately hoping they can give me some good tips and resources. Regardless, Madi is still doing remarkably well and the bad side effects are very fleeting- nothing like they were before she was diagnosed. <br />
<br />
The exciting and terrifying next part of her treatment journey is immunotherapy. A few days after Madi's second surgery, when we were reeling from the news that her tumor would be resistent to traditional chemo treatment, the FDA issued a historic approval for an immunotherapy drug called Keytruda. This is the first time the FDA has ever approved a cancer drug based on a specific genetic profile, rather than on the location of the tumor in the body (colon, lungs, brain, etc). And luckily for Madi, she has the exact genetic profile for which the drug was approved. The drug is already frequently used for Stage 4 Melanoma and Colon Cancer, but without this recent approval, our insurance likely would not have covered it for brain cancer (it costs $150,000 per year). They have agreed to cover it now.<br />
<br />
From what I understand, some cancers are able to "hide" from the immune system so they can grow uninhibited. The immunotherapy drugs essentially expose the true face of the cancer to the immune system and then the immune system attacks the cancer directly. It's amazing, really, and there is a lot of excitement right now about the potential of immunotherapy for many different cancers.<br />
<br />
The one caveat to this panacea is the brain. The brain's immune system is different than in the rest of the body. Because the blood-brain barrier offers a first layer of defense, there tend to be fewer immune system "soldier" cells in the brain, versus other parts of the body, with which to mount an attack against invaders. Therefore the success with immunotherapy for brain cancer has been muted compared to other organs. We have only read about four other pediatric glioblastoma patients who have used this medicine. Two of them had really great results and the other two died. So Madi is a pioneer with this.<br />
<br />
Our oncologist has reached out to top doctors in the US and Canada who have had experience with the drug in glioblastoma (either pediatric or adult) and is collecting best practices. One of the major side effects of using the medication is brain swelling in response to the inflammation caused when the immune system is revved up to attack the cancer. Brain swelling can be problematic for many reasons, not the least of which is that it causes nausea/vomiting, and intense headaches (the very things that alerted us to the cancer to begin with). These types of drugs can also sometimes cause brain hemorrhaging. But if it works, it could <i>really </i>work. <br />
<br />
Another challenge is that the medications typically used to treat swelling in the brain also suppress the immune system so the whole process is like a tug of war. You basically have to let the swelling go as long as the patient can possibly stand it before you intervene, to maximize the effectiveness of the drug. Our oncologist, though, is consider adding another drug called Avastin to counteract the swelling. It may end up suppressing the immune cells too much, but he thinks it will be better overall for Madi (and have fewer side effects) than using steroids which typically are used to treat swelling in the brain.<br />
<br />
This week, she will have her first MRI since the last surgery, to check for any cancer recurrence, and probably start this new therapy that same day. For the next 6-9 months (and possibly longer), she'll need to go to MGH once every three weeks, for 4-5 hours each time, to get an infusion of immunotherapy +/- Avastin. She is not looking forward to it and neither are we; however, we feel pretty strongly that it is important to take this route. We are praying for miracles to happen here.<br />
<br />
We continue to feel the strength of your prayers and fasting. Thank you again for all the uplifting notes, comments, letters, packages, and gifts! I am (*very slowly) trying to get caught up on thank yous. If you haven't heard from me and are wondering if we got whatever you sent, we likely did get it! I'm just really struggling to respond to everything in real-time. We are so grateful for all of the love and support we have received over the last four months. Jenn Knighthttp://www.blogger.com/profile/17068200258878833318noreply@blogger.com4