Madi update: Hanging in there

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.  

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.

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 are 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. 

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. 

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.  

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. :)

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. 

We are in our hotel room in Florida.  This picture took approximately 10 minutes and about 100 shots to get.