Dear Jakey,
The other day, another little fighter went up to Heaven. It has been on my mind pretty much non-stop for the last few weeks that I have been following her story. It makes me think of you and of her family. Her mom and dad that are getting used to a new house now – a house free from equipment and machines and things that most families never have to deal with. They are getting used to a whole new set of inner family dynamics that is so hard to explain and so hard to get used to. Almost a year later and I am not sure that we are any closer. And they are getting used to the empty space that will never be filled up again. Little Miss Hannah died Sunday night. She was 3. She too had a rare disease that crippled her body, but not her spirit. She took it as long as she possible could and now she is at peace. And with you, I hope.
There is another fighter down here on Earth named Liam. Not even sure where he lives. I never met either of these kids or their families but have followed their fight. Sometimes I feel like the only people I can relate to are these strangers who have lived the life that I lived and know about the life I miss so much. Anyways, when I first saw Liam’s picture he looked just like you when you were little – before you were sick and those first few months in the hospital. He has a chubby face with perfect features and his hair is sometimes in a faux hawk. He has a feeding tube and just looks like you. I showed Daddy and he agreed. Anyways, he has seizures and possible mito issues. No one really knows – seems to be the same deal. He is in the hospital now for a g-tube and has given his parents a scare. He almost coded and was having trouble breathing on his own so was re-intubated. When I read about it, I could physically remember standing in the PICU at Children’s when you nearly coded. And standing in the corner with Daddy watching so many doctors save your life. It was so long ago and at the beginning of the journey when we knew so little. And it just made me so sad that other families know that feeling and that scary, awful pit that you get when you are afraid that you kid is going to die. And then that even worse feeling when your kid does die. It just sucks that so many people know what it feels like. Anyways, Liam reminded me of you again though. Last night, he pulled out his breathing tube. He got pissed off and took it in his own hands. It reminded me of when of one of the times you were extubated and you were almost slap happy and giggled. It was in those days of your post-pentobarb coma that was the last time we saw you smile or heard you giggle. I hope you are doing a lot of laughing in heaven – that big belly laugh you used to have way back when. I miss it but as I sit here and remember all about you I can almost hear it.
I miss you so much. So very much.
Love,
Mommy