Extubation Day 2021

 Just look at this tired Momma. With her ragdoll little baby.

Max and Mom 12/2004

She thought that was the most tired she could ever feel. She thought it was the most traumatic thing she could imagine watching her baby struggle to breathe. She thought he was heavy then! She was so tired when this picture was taken, but had so much optimism because after a month of failed attempts, he coughed the breathing tube out and changed the direction of his life.

I sometimes look back on old photos and think, "What would I tell her if I could?"

I wouldn't tell her about all the hard days and hard nights they'll still have. I wouldn't tell her how many more days and nights she would spend in one of those hospital chairs. I wouldn't tell her that she has no idea what tired is yet. I wouldn't tell her that the traumatic experiences were just beginning (although, I might tell her to find a therapist sooner). I wouldn't tell her there would be days she feels hopeless from lack of help, or lack of services, or from constantly fighting for his right to survive and thrive. I sure wouldn't tell her he would outgrow her - because the idea of moving a man baby around might have crushed her spirits altogether.

I would tell her, "Love him every day for the rest of his life like it's December 1, 2004. Cheer on every thing he accomplishes, no matter how small it seems. Teach him new things. Teach the whole world about him. Show him new places. Let him hear the roar of the ocean and feel the grass from another country under his feet. Teach him to read, and talk, and sing. And let him teach you, he will be your greatest teacher. Give him everything you can, so he has the best life he can have. Because you may not know it now, but on December 1, 2004 he is showing you that's what he wants."

Happy Extubation Day 2021. The day in our family we celebrate the day the lion roared.

Max and Mom 11/2021