Almost six years ago I was forcefully introduced to the world of life threatening laryngomalacia. Since only 5% of babies who are diagnosed with laryngomalacia, will be diagnosed with life threatening laryngomalacia, I had a very hard time finding outside support and information. I was alone and lost in my journey. Unable to connect with other parents, unable to see that the good really does follow the bad.
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pictured: Seraphina, age 5, putting together care packages for
her fellow laryngomalacia friends.
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Somehow, life went on... in between all the hospital stays, airway surgery, oxygen tanks and those long, long nights I slept with my hand on her chest- feeling every breath. Those nights turned into days, then into weeks then months and before I knew it, I was singing Happy Birthday to my baby- on her 5th birthday. She survived. I survived. We survived.
I am now at a place in my journey where I can see the good. I witness the good, everyday. No longer is my baby hooked to an apnea monitor, no longer does she turn blue, no longer does she choke while feeding.
Our days are filled with cookie baking, reading Little House On The Prairie and pottery class.
If you are struggling to see the good, please know it WILL come. The sun will shine again.
Coping With Laryngomalacia, Inc. is here for you, every step of the way.
Stay strong and breathe easy,
Stephanie Hueston
CWL Founder & President
CopingWithLM.org
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