"There is a weird thing that happens when you fall outside.
When you find out your child is deaf you mourn, you mourn hard if you know nothing. Then you find out it is ok you meet other people and over time you learn it is ok to joke. You laugh about how he leaves the water on with others who know. You are in the club. The club is comfort and power to be strong and enjoy life. You love your community.
Maybe later your other child dies so fast you can't catch your breath but guess what…. there is a club for that where other people feel just like you do and over time you share and feel better and you find yourself laughing maybe with guilt at laughter but laughing again and moving on.
Then maybe you find yourself again scared and confused because something is so wrong. Maybe it is so random or wrong you don't want to find a common thread. Body failure….rare disease????? You want to think the thread others find comfort with is a reason to run.
This thread weaves the other threads together in a cruel tapestry that challenges your ability to breathe.
I don't want to join your club."
Patti I wrote this last year. Since then my son for some reason willed himself better. His disease is controlled right now. He beat the odds so much that he is cast as a principal in a play. I honestly believe it is because he has had to fight all of his life, his life was "Deaf normal". When the hospital told him he was a "Make A Wish" candidate he got grumpy (well pissed off) and said there are kids who are really sick. Haddy is a fighter.
So now we are busy and living large but different. He has a cruel disease but as far as we are concerned it can kiss our asses. (sorry a bit harsh for a preschool teacher)
Thank you for checking in. You are a kindred soul,