Looking at Q-tips (some non-Madi news)

I have been dreading this post for months.  I have spent so many nights lying in bed wondering how to tell everyone all that is transpiring in our lives.  I am sure I am not the only person who has a hard time sharing details of her personal life for friends and strangers to examine and judge. Nevertheless, I cannot hide this forever and it will be easier (and less awkward) for us if people can process all this information on their own time and not in our presence when it inevitably comes up.

Some of you may have noticed that my already noticeable belly is expanding a bit more than normal. It's because I am pregnant.  I am 21 weeks along with baby #6, a boy. Yes, I was pregnant before Madi was diagnosed with cancer, even before she started having symptoms, and yes, it was planned. It was very earnestly, extensively, thoughtfully, prayerfully, hopefully planned.  No, I haven't felt too physically sick, thank goodness.  

Unfortunately, that is where the good news ends.  A week after Madi was first diagnosed, I got a call saying that my pregnancy was testing positive for Trisomy-18, a rare chromosomal disorder similar to Down's Syndrome.  Only the defects caused by Trisomy-18 are usually fatal. Boys fare worse than girls.  According to the Trisomy-18 Foundation, "A Trisomy 18 error occurs in about 1 out of every 2500 pregnancies in the United States." About 50% of baby boys are stillborn. Of those who are born alive, 50% die within the first 24 hours, and 95% die before their first birthday. They often have heart valve issues, problems with their spine, bladder, kidneys, or lungs on the serious end, and low-set ears, clenched fists, and clubbed feet on the mild end.  They may not be able to feed well. If they survive, they are severely mentally and physically impaired for the rest of their short lives. Even when some of these problems are surgically repaired, usually the impact of having an extra chromosome in every cell of their body is too much to handle and the brain just shuts down, not able to continue processing basic functions required for life, such as breathing.

When my OB called to tell me, my first reaction was laughter, truthfully.  I mean, how often does lightning strike twice in the same place?  But as she started describing how low the survival rate was and how likely stillbirth was, I melted into sobs and couldn't stop crying for a long time.

I remember years ago sitting in a Sunday School class listening to a teacher discuss trials.  One woman who was visiting raised her hand and asked, "Why are we expected to give God all the credit when good things happen, but we are not supposed to blame him for the bad things?"  The teacher, flummoxed by this question, floundered around a bit, while different members of the class tried to explain why we needed to always have an attitude of gratitude.  I found her question extremely incisive and have pondered it many times over the years, pulling it out of my unanswered questions drawer and then putting it back when I still didn't have a satisfactory response for it.  Now, after all these years, I think I know my answer.

The assumption underlying her question is that good and bad are diametric.  If something is good, it cannot be bad.  If it's bad, it cannot be good.  Anyone who has... well, lived... can question the accuracy of this assumption. Good and bad are not mutually exclusive.  Blaming God for the bad would involve also denying the good that came inherently with it.  Consider the example of having a baby. Having a child is pure joy!  For the first hour, until you can't figure out how to make the baby stop crying.  When it's quiet, you peer on the sleeping angel and wonder how your life ever felt happy before this little creature arrived.  And then when said baby awakens you every hour all night long, you try to remember how blissful life was before this little devil showed up.

For every good thing that has happened in my life, I can easily find bad things that accompanied it. BUT, the same is true for bad things, as well.  I remember feeling like my life was over when I got waitlisted at the university I longed to attend, but then found my soulmate when I attended BYU instead. Existence is a huge messy spectrum of good and bad, partnering together to make life feel whole.  We call this "The Q-tip effect" in my family.  If your spouse is driving you crazy because of (fill in the blank), look for the other end of that q-tip and you will likely find the reason you fell in love with him/her in the first place.  You can't have one side of the q-tip without the other coming along with it.

So when the option for terminating this pregnancy arose, we started thinking about both ends of the q-tip.  I remember Kurt looking at me and saying, "I think all these early tests are for people who are trying to decide whether or not to abort.  Are we definitely keeping the pregnancy?" and  I suddenly realized I couldn't answer. At the time, the data we were given said there was a greater than 95% chance of miscarriage, still birth, or death within the first 24 hours (in hindsight those statistics included fetuses who were electively aborted). Even Mormon church policy sympathizes with termination when "A competent physician determines that the fetus has severe defects that will not allow the baby to survive beyond birth." In additiona, 80% of women who get this diagnosis end up terminating their pregnancies. For the first time in my life, this academic debate between pro-choice or pro-life, became acutely real in a very personal way. Maybe this little boy deserved a chance at a normal body? Maybe we should scrap it and try again?  These pregnancies are so rare, even for older women, the likelihood of having a normal pregnancy if we tried again was greater than 99%. If we kept the pregnancy, how would we care for such a sick baby while Madi would be going through the worst of her treatment? How could we emotionally handle more uncertainty about the life/death of another one of our children?  How would our living children respond to the death of a baby sibling? These questions felt excruciating difficult to answer, especially since it really seemed like we got the q-tip that only had one end: the bad one!

So I guess this is where we start to talk about faith again.  If everyone could see both sides of every "q-tip" in her or his life, choices would be so easy!  I guess I don't blame God for these "horrible things" happening in our lives right now because I think He can see the other side of the q-tips that we can't see. As Kurt and I fasted and prayed in the temple about this decision, we both felt great peace that the positive end of the q-tip in this situation far outweighed the negative end, even if we couldn't see it right now. I truthfully cannot even fathom how this could possibly be true; but I know that I cannot think of a single time in my life when my Father in Heaven has not poured out blessings, help, and sustenance upon me when I have needed it.  I trust that this situation will be the same.

On a more concrete level, we felt that loss is loss, however it happens and we would grieve regardless of how we lose our baby.  For me, not making the choice about his departure from earth felt easier to handle. So we decided to not "interrupt" the pregnancy (so many euphemisms for abortions these days).  Now when I think about other women having to make this same decision, I cannot even think about the political debate, all I can feel is sadness and pain for them.  We should pass a law stating that each woman in this position must have someone there to hug her and tell her everything is going to be ok.

We had the results of the blood test confirmed during our 18 week ultrasound.  This little one has a greatly enlarged bladder, a horseshoe kidney (the two kidneys connected), a possible hole in his heart, clubbed feet, clenched fingers, and single umbilical artery. The Fetal Medicine doctor told us that he was so sure it was an accurate diagnosis that he would not even recommend doing an amniocentesis to confirm.

So we are here, with a host of decisions to make about where to deliver, which doctor to choose, whether or not to do a c-section if the fetus is in distress, whether to do surgical intervention to try to extend his life a bit longer (which doesn't typically work) or just provide supportive care to make him as comfortable as possible while he is with us.  And then we need to make decisions about how to celebrate this little one's life (and death) when the time comes for that.

Our children all know and are handling it well, though I'm not sure they really understand what will happen.  Except Madi.  She cried and cried. She said she couldn't believe that something so tragic and sad could happen to our family.  In my head, I thought, really? what do you think your story is? But outwardly, I agreed.  Perhaps some of those tears she was shedding were subconsciously for her own story, too.  Kurt told the kids they were lucky because now they would have a guardian angel brother following them around and giving them direction like, "William, don't jump off the roof. That's stupid" or "Becca, don't date that guy.  He's a total jerk" or "Max, wear short sleeves today" (he has a chronic problem deciding what to wear everyday) or "Madi, don't eat that.  It's brown, but it's not chocolate."  We all had a good laugh and are trying to get comfortable with the uncertainty that we cannot seem to escape.

Walking through the valley of the shadow of death really sucks; but like David, we are trying our best not to fear and to allow our doting and nurturing Father in Heaven to restore our souls as we make the journey.


Mandy said…
Sending love and prayers. I appreciate your thoughts and conclusions and full-heartedly agree. Keep doing what you're doing. ❤️
Jolynne said…
❤❤❤ Hugs and prayers!
Becca Pizzi said…
You are the strongest family I know. We will get through this, we love you, we are with you every step. Love -Becca
This is so beautiful!!!! Your perspectives are so true and inspiring. Thank you once again for opening up to lift others. I sure love you guys and appreciate this post so much.
ellen said…
Wow. You continue to inspire me. Prayers for the Knights. heart ep
Andrea J said…
I love you all for your generous heart and your strong will. I also love you when your will might falter. You're a wonderful mother and there is only one Kurt; I'm so glad you have each other.
J.C. Brownlow's said…
I love you and your family so much! Our prayers are with you. You are one of the finest examples to me!
Rebecca Deane said…
You are one of the strongest families I know. Thank you for being so open with what is happening in your lives right now. My thoughts and prayers are with you all always!
Ernie Lopez said…
Thanks for sharing. We'll keep your family in our prayers. -Ernie
Cheryl said…
One of my friends from my ward growing up has a boy with Trisomy 18, He is 7. Here is a link to her blog http://compatiblewithjoy-trisomy18.blogspot.com/?m=1. Sending prayers for your family.
ty and megs said…
You always have been and continue to be a shining example to me. Your faith is inspiring my dear friend. My heart and thoughts are with you and your sweet family Jenn. Love you forever.
You are amazing, Jenn. Words cannot begin to express my love for you and your family--or my awe for your tremendous faith.
Clare said…
We're thinking of you and your family, Jenn. Thank you for sharing what's going on.
Anonymous said…
Jenn, it's Noël. I'm not sure I ever adequately thanked you and Kurt, and your then four beauties, for the rescue and respite you provided me during a very dark time. Thank you. It really meant the world. It's funny. I've become very meditative in the last few years, and one of my happy "places" is your kitchen. The sun coming through the back window, the crock pot, the kids out back. Such a brief but perfect moment. Your family enveloped me at exactly the most vulnerable moment. I know they do the same for you and give you daily sustenance...
I am thinking of you a lot. And praying, which I do a lot more of than I used to. Be well. Prayers for Madi and #6. Love, Noël.
Anonymous said…
Your prayer train is still going with us. Your words and perspectives on life are humbling and empowering. The trust you have in Him is amazing and I am so glad that you have found comfort and strength in this. Your family is teaching me so much about true faith and trust. Please know that we are still here, waiting at the opportunity to help beyond prayer. Anything you need, just give a shout out.

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