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    Community Voices

    Hi, yes I have every hashtag. Yes, I do get extremely out of breath from bending over.. yes I do need a wheelchair for bigger places due to lack of air as well as other physical problems.
    However, I just got diagnosed with bronchomalacia, laryngomalacia, and aspiration today. I’m 21 years old, yet I’m getting diagnosed with things commonly found in children. Are there any other adults out there with these issues? If so, what’s your diet like and how did you help your lungs breath better if you were able to?

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    Community Voices

    need reassurance


    Last Thursday, my youngest, who is 8 months old, had a consultation with a genetics because he has feeding difficulties and airway difficulties. Quick back story:he was diagnosed with failure to thrive at about 3 weeks. fast forward, he has a floppy airway, aspirates on thin liquids so is primarily fed through a g tube. he does still breastfeed some and has been a champ with puree and honey-thick liquid.
    anyway, so genetics comes back after his physical exam and wants to test him for . ok, great... what is that? well the geneticist said that she thought it could be this because: he has a lazy L eye, is small for his age, had a PDA in his heart and apparently has "undescended testicles"?? well I didnt think babies had testicles that had descended yet so that's news to me. she also thought he had slight low muscle tone .
    I'm freaking out and am in a terrible way today because I cant let go of the thought of him being developmentally disabled. this literally scares the crap out of me. he has hit all his baby milestones but has a little trunk weakness- so is a bit sslouch-y. but he is really close to crawling and lives to be on all 4s rocking back and forth.
    I need some perspective- I need some hindsight from others who have been in the thick of chronic illness with their babies, to know that they CAN turn out smart and funny and "normal". while normal may look a little different are we going to be ok? am I going to be ok? is he going to be ok? suddenly I am so crippled by fear of bad things happening that I think it might help to hear stories of happiness, of recovery and of kiddos leading a darn near regular life.

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    Community Voices
    Community Voices
    Megan Horwath

    I Know You, Tracheomalacia

    I know you, Tracheomalacia. 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. Sincerely, Megan (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 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 .