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I Know You, Tracheomalacia

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I know you, Tracheomalacia.

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I keep waiting for your name to come up in the “14 letter words” category on “Jeopardy” because I know I’d get the answer right.

I know you. I know your friends: laryngomalacia, laryngopharyngeal reflux, eosinophilic esophagitis, dysphagia, aspiration, sublottic stenosis, micrognathia… I know you all.

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)

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Originally published: March 27, 2015
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