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  • Writer's pictureStephanie Hueston, CWL Founder

To The Parent Whose Baby Has Just Been Diagnosed With Laryngomalacia

Dear Friend,

So your baby was just diagnosed with laryngomalacia. 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 airway disorder than you ever thought possible. You will become someone we like to call a Malacia Mom (or Dad!). You will wear this title will honor. It will be a source of strength in the darkest of moments...a reminder that you CAN and WILL get through this.

Having a baby with an airway disorder may be one of the hardest journeys you will ever have to walk. And that’s okay. Do not be angry at this journey, it is here to teach you. Let it teach you. If you allow, the journey will provide you with a whole new view on life. A more simple, wholehearted, grateful for every breath kind of view.

Journeys have no not spend your journey full of anger...instead, spend your time focusing on the walk. Soak in the sunlight wherever possible, remain graceful when your heart is full of worry and always be kind... your journey is hard, that we know but someone’s journey may be even harder.

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

You will grieve. Grief comes in all shapes and sizes and it always seems to hit you when your standing in line at the food store. Allow yourself to grieve for the healthy baby you were not given. This is a normal process ... do not let anyone tell you differently.

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, 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 your Pint-Sized Powerhouse will follow. Show your child there is always a reason to have hope...anger doesn’t make life-changing decisions and the good always follows the bad.

You are a Malacia Mom/Dad for a reason... stay brave and breathe.

Written by Coping With LM's Founder Stephanie Hueston in 2017.

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