Monday, April 18, 2016

One Day

Everybody always wants updates on Kreed. I've avoided it for days. We have been in the hospital for 19 days, 40 days overall since February. Kreed is a medical mystery. They don't know why systems are failing on him. He now has decreased urine output and wicked different colors of pee but his kidneys are normal. He still has periods of low oxygen. When he stands or walks he's still in extreme pain. Nothing has changed. Tests have been done. Nothing is found. There is no treatment. 
We have a care conference on Thursday to try and figure all this out. 

Meanwhile our hearts break. Our sweet boy who loved to hike is replaced with a boy in pain who doesn't want to get out of bed. He has deteriorated so much. I cry at night when no one is around because I can't even believe this is our life. Every day I sit and wait and help hold him during rages or advocate for his care. At night I research everything I can possibly think of and more. 

I'm exhausted. My muscles ache. I'm sad. I'm angry. I'm everything. Kreed is in pain. He's sad. He cries. He rages. It's never ending for him. 
I miss the sunshine. I miss him playing sports, coloring, swinging, hiking and loving his life. I never wanted this life for him. I wanted a life full of love and light and happiness and joy. Not pain and suffering. We have worked so hard on so many things to make sure he will have a good life. But now this year I have only been able to watch him be in pain and suffer. 
Idon't know how a normal life will ever come. I don't know what will make him better. I don't know what will come of our life. 

I am so broken for him. I am so sad for him. I am so angry for him. But I will never stop fighting for him. One day he will feel the sunshine again. One day he will want to hike for hours again. One day he will not be in pain. One day he will smile and have fun all day. One day