The beginning of this post was written a few weeks before Max passed away. I felt it necessary to share my thoughts and then update on our current status.
You don't realize how many kids and families go through extra challenges in life until you experience it first hand or have a friend or family member who does. I'm a part of many special and private Facebook groups that basically are there to support you through the process. Those who have feeding challenges...those with Krabbe...those with other medically complex issues... There are posts daily about kids making through open heart surgery, struggling for their life who need extra prayers, posts of the success of getting enough calories for the day and of course the posts that I dread each day that I open up social media....the loss of a child.
We haven't been down that road yet but have known a lot of families who we have met through social media who have. I know it is our future...but I can't fathom how we will get through it. Max has decided to give us continuous scares the past week and we have come to see that it is disease progression...he is having trouble catching his breath when he gets upset and dips into the 30s...20s or 10 and under with oxygen. Every time it happens I can't help but think...is this it? Am I ready for this? How will I get through this? What will I tell Emma? How will we get through our day without our sweet Max? Then in an instant he bounces back and we go on with the day. He smiles with his eyes...settles down and is fine!
I know I shouldn't even go there in my mind. It is a dark place. But with a terminally ill child...how can you avoid it? Everything is put into perspective again.
...June 24, 2016 we were woken up about 4 am that Max had stopped breathing and we lost him. He had been struggling for the past month and we were terrified he'd struggle in his last moments. We had a night nurse on her shift and suddenly the pulse ox couldn't find a pulse and she thought the equipment was faulty (which it had been before) but he wasn't breathing. All I remember is Josiah yelling "what!" over and over...we both ran downstairs and I picked him up, held him and started trying to resuscitate him...but he had left. I continued for 35 minutes until hospice got there and confirmed he had passed. We had decided that if Max had taken a breath we would have rushed him to the hospital. The crazy part of it all was he looked so Calm and so normal...like he was sleeping..he had been struggling the last few weeks and turning purple often. He just looked peaceful. Emma was still sleeping so the mortuary came and got Max and Josiah and I both woke up Emma and told her Max went to heaven. She smiled and said "I'm so happy because now Max can do everything I can do."
We tried to get to the mortuary quickly but I was physically sick. It us amazing how your body responds to deep sorrow and uncontrollable stress and grief. We were able to arrange for Max to donate some nerves and brain tissue to help find a cure. While controversial for some...our whole story we've tried to advocate and help others and I truly hope it helps in a cure.
We had a great celebration service for our little boy...something you should never have to plan...but the amount of support we received for all who came out was so appreciated. We ended the service with a balloon release. Emma picked out a Buzz Light year balloon, I picked lightning McQueen and Josiah superheroes. We each wrote messages and released them to the perfect song...I Lived by One Republic...because Max lived and he helped us live in the moment and do our best to look past this horrible disease.
Each day I miss him. I miss his touch and his noises and his smell. I miss everything but Krabbe... I don't miss his suffering or questioning if what we were doing each day was right. I've continued to do my research to try and get this in front of the right people in Arizona for newborn screening but I'm not getting far. I'm not giving up either.
The best daily reminder from Max are the butterflies. They are all around us and fly in front of us in completely obvious ways...when we are at events or doing things as a family...he lets us know he is around...I truly believe that. We continue to do our best to move forward but some days are better than others. We will always hold Max's memory close. He taught us so much and will be on our hearts forever. As we enter 2017, I am so sad that I'm entering a year without him. It is scary. We will continue our "firsts" without him here and continue navigating through life the best we know how.