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 defect than you ever thought possible. You will become someone we like to call a LM Supermom. 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 LM, TM , BM 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, it will provide you with a whole new view on life. A more simple, wholehearted , grateful for every breath kind of view.
Journeys have no end...do 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 someones 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 is scared. In fact, he is very scared. That anger he is showing? That is him letting you know all those emotions you are feeling, he is feeling them too. 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 its 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 okay. 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 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 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, 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 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.
Written by: CWL Founder & President Stephanie Hueston.
To learn more about Stephanie go here.