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To the Mother Whose Baby Has Just Been Diagnosed With Laryngomalacia

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So your baby was just diagnosed with laryngomalacia (LM). Can you pronounce it? Don’t worry, I couldn’t either. In fact, it took me three months to learn the correct pronunciation and spelling.

In time you will be able to spell it backwards. You will know more about this defect than you ever thought possible. You will become someone we like to call a LM Supermom. You will wear this title with honor. It will be a source of strength in the darkest of moments — a reminder that you can and will get through this.

Stephanie Hueston.3-001

Having a baby with LM, tracheomalacia (TM) or bronchomalacia (BM) may be one of the hardest journeys you will ever have to walk. And that’s OK. Don’t be angry at this journey; it’s here to teach you. Let it teach you. Allow it to provide you with a whole new view on life — a more simple, wholehearted and grateful for every breath kind of view.

Don’t spend your journey full of anger. Instead, spend your time focusing on the walk. Soak in the sunlight wherever possible and remain graceful when your heart is full of worry and always be kind. Your journey is hard, but we know that someone else’s journey may be even harder.

Friends will leave and friends will come. Friends will leave because it’s their time to leave, not because it’s their intent to hurt you. Take a deep breath and let them go as beautifully as you let them in. New friends will arrive with hearts wide open. They will know how important a hug and a hot, home-cooked meal is. Hug them back — tightly. Be thankful for the future with them.

Your partner is scared. In fact, he is very scared. That anger he is showing? That’s him letting you know he’s feeling all the same emotions you’re feeling. It kills him to see you hurt like this, and there are no words to describe the pain he feels seeing his baby struggle like this. Let him know how you feel and what you need. He doesn’t know what to do. He never thought he would have a baby with an airway defect. You both can survive this, but if he chooses to disconnect and walk away, let him. Holding onto a relationship when it’s time for it to end will only fill you of anger, bitterness and resentment. Your baby needs all of you right now. You will be OK. You will recover.

You will grieve. Grief comes in all shapes and sizes, and it always seems to hit you when you standing in line at the grocery store. Allow yourself to grieve for the healthy baby you weren’t given. This is a normal process. Don’t let anyone tell you any different.

Listen to your instinct. You know your baby better than any monitor or medical test. Let your voice be heard, and if a doctor speaks over you, find a new doctor. Get to the best hospital. Bills can be paid later; your child needs to breathe now.

Walk this journey with grace. There are going to be some high mountains to climb, and the rain will pour. Choose to let the good strengthen you while letting the bad empower you. Every step you take on this journey will leave footprints that your pint-sized powerhouse will follow. Show your child there is always a reason to have a hope. Anger doesn’t make life-changing decisions, and the good always follows the bad.

You are an LM Supermom for a reason. Stay strong and breathe easy.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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. Check out our Share Your Story page for more about our submission guidelines.

Originally published: November 26, 2015
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