I Know You, Tracheomalacia
I know you, Tracheomalacia.
I know you, tracheomalacia, were supposed to cause nothing more than noisy breathing, and you know you’ve caused so much more.
I also know we’re bigger than you. We’re stronger than you. We’re more than you.
I know you’ve challenged us for the past two years.
I know what it’s like to watch my child struggle to breathe. Every. Single. Day.
I know what it’s like to listen to my child cough. Constantly.
I know what it’s like to watch my child choke with every feeding.
I know what it’s like to watch my child stop breathing. Every. Single. Night.
I know what it’s like to have to hook my child up to a machine at night to keep him breathing.
I know what it’s like to worry about the longterm effects of daily steroids and other medications.
I know what it’s like to spend my “free time” at doctor’s appointments or therapies.
I know what it’s like to try and let go of the “normal healthy” baby every mother wants.
I know what it’s like to secretly be jealous of every mother whose child can eat, breath and sleep normally.
I know what it’s like to have even more love for a child than I ever thought possible.
I know what it’s like to smile politely when strangers comment on the cuteness of his chubby cheeks when I know that chubby cheek look is a result of micrognathia.
I know what it’s like to feel the glares and hear the negative comments from others who think I’ve brought a sick child to a public place when I know nothing about him is contagious.
I know all this because of you.
I know I can educate others about you because I know you.
I know I can support others who are just meeting you.
I know you’re going to continue to challenge us.
I know you don’t get my son down.
I know he’s as spunky, cuddly, smart and crazy as any other 2-year-old.
I know our lives the past two years would be completely different if we didn’t know you.
I know you don’t define us. We’re stronger than you. We’re better because of you. My son is amazing.
(aka Super Joel’s Mom)
For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.
Want to end the stigma around disability? Like us on Facebook.
And sign up for what we hope will be your favorite thing to read at night.