Tuesday, October 24, 2017

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 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 (she) 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 disorder. 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 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 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 Malacia Mom (or Dad) for a reason... stay brave and breathe. 

Written by: CWL Founder & President Stephanie Hueston

Monday, October 23, 2017

How To Host A Malacia Meet-Up With Coping With LM

Thanks to modern technology, we are able to connect with each other from miles away. While online support can be poignant, little compares to meeting another parent who is walking the same journey as you! 

Illinois Malacia Meet-Up

The purpose of Coping With Laryngomalacia, Inc.'s Malacia Meet-Up Program is so parents (and caregivers) can connect directly with other local families. 

This program is made possible thanks to our amazing World Leaders Volunteers and their passion for the cause! 

Want to host your own Malacia Meet-Up? Follow these easy steps! 

Step 1.  Apply (here) to become a World Leader Volunteer at Coping With Laryngomalacia, Inc. 

Step 2. Once you become a World Leader, choose a location, date and time for your Malacia Meet-Up.

Step 3. Submit a Malacia Meet-Up application (here) to Coping With Laryngomalacia, Inc. 

Step 4. Once approved, Coping With Laryngomalacia, Inc. will create a Facebook Event and invite Parent Support members. 

Step 5. Receive coaching and support: 
Coping With Laryngomalacia, Inc. will provide one to one coaching on how to host a successful Malacia Meet-Up

New Jersey Malacia Meet-Up

Sunday, October 22, 2017

How To Support A Family Who Is Coping With Laryngomalacia

You are scrolling through your news feed and see a post from an old friend, her baby was just diagnosed with a life threatening airway disorder. Her eight week old is now having emergency airway surgery.

Your son just called you at work (something he never does), the doctor just prescribed your grandchild an apnea monitor. The medical supply company will be delivering it tonight. 

You're babysitting your niece for the first time. She is choking with every feed, her stridor is so loud despite position changes- how does your sister cope with this?

Since there is no prenatal test for laryngomalacia (Polyhydramnios may be a marker though), every family who receives the diagnosis of mild to life threatening laryngomalacia world is turned upside down. 

Feeding difficulties to blue spells to major airway surgery, 
these parents are in desperate need of love and support

So what can you do to help? 

Stephanie says, "Offer to bring food or help clean the house. Be a listening ear."

Tiffany says, "Not come around when you have or have been exposed to illness (yes, this is a problem), wash your hands before touching baby, don’t smoke before being around baby."

Erica says, " Just ask. My support needs are different each day."

Erin says, "Please get CPR/First Aid Certified."


Lisa says, "Ask about doctor appointments and offer to watch the siblings."

Trisha says, "A friend paid to have our carpets and air ducts professionally cleaned and changed all our air filters when we were at the hospital. So we came home to the cleanest air possible. It was something Id never had thought to do. I felt it was very thoughtful."

Sponsor a care package here.