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Big Sister Educates The Public On LM

Rylan, age 13

 For her 4H presentation, Rylan choose to speak about laryngomalacia on her brother Trace's behalf. She won the gold medal and gets to move up to the California Southern Sectionals. Way to go Rylan, we are so very proud of you!

Pint-Sized Powerhouse Trace collecting blankets for Coping With LM, Inc.

Rylan, Gold Medal winner!

Because Of You

Dear Laryngomalacia,

Our journey began five years ago. Five years ago, I was angry at you. Very...intensely... angry. Life as I knew it was a distant memory and I blamed you. I fought you, I only saw the negative side of you, I let you destroy me.

The days turned into weeks and before I knew it, the weeks were turning into years.

Every time we would get home from another long hospital stay- because of you- I would stand in front of my mirror, unable to recognize the woman staring back at me. You were destroying me...and I was letting you.

Then I remembered advice my mother used tell me. She would say, “you always have a choice in life, Steph. Always.”

She was right. I could let you destroy me or I could let you empower me, the choice was there. The choice was mine to make.

So I dug deep, deeper than I had ever before and found my inner Supermom strength. The kind of strength you need to cope with a life threatening airway defect. I had it all along.

Before I knew it, my inner strength began strengthening others.

I was not alone, I was not alone.

There were other families-around the world- that you were trying to destroy.

So do you know what I did, Laryngomalacia? I shared with them,  the advice my mother told me...and now they are letting you empower them, not destroy them.  We are all connected, a virtual connection that spans from New Jersey to Australia. From The Netherlands to South Africa. We remain strong-together- when you try and make us weak.

So thank you Laryngomalacia for making me the person I needed to me. Because of you I wouldn’t be the mother, the wife, the person I am today. And you know what? I like...no, love... who I am today. I am strong. I am passionate. I am confident. I am enough.

My voice has been heard around the world,  because of you.

Written by: Stephanie Hueston

CWL Founder & President.

Elijah's Journey

Laryngomalcia - A diagnose I found on my own while arguing with doctors that my sweet 7 day old son should not be breathing like he was .
Laryngomalcia - A diagnose my son was given at just 14 days old. We were told this was "harmless” “He would outgrow it “.
Laryngomalcia - A diagnose that caused my sweet 21 day old baby boy to have surgery that led to further complications.
Laryngomalcia - A diagnose that caused him to be put on two monitors because he stops breathing every single night and can't maintain his oxygen levels.
Laryngomalcia - A diagnose that caused our 6 year to watch her baby brother turn blue , stop breathing and spend countless days in the hospital.
Laryngomalcia - A diagnose that has led to us watching our son 24/7, being sleep deprived, stressed, angry.
Laryngomalcia - A diagnose that caused our son to go through more test , needles, sedation, pain and difficulty breathing more than any child should ever have to endure.
Laryngomalcia - A diagnose that led us to Tracheomalacia, Innominate artery compression syndrome, aortic stenosis, severe reflux, tachypnea, obstructive apnea, cyanosis and asthma.
Laryngomalcia- A diagnose that causes us to spend much of our sons first year in different specialist office while they tried to figure him out.
Laryngomalcia –A diagnose that cause my husband and I to join together and support each other through the toughest of times.
Laryngomalcia – A diagnose that made me realize I am a very good mom and the Mom God chose for Elijah.
Laryngomalcia – A diagnose that has caused us not to take anything for granted and every single breath that we breathe is a precious gift.
Laryngomalcia- A diagnose that does not define our son or hold him back, But has shown the world that age does not make a great fighter but the will and power of God inside him !
Laryngomalcia -A diagnose that we know we will be fighting for some time but WE ARE NOT AFRAID! We have a super hero on our hands!

Written by: Malacia Mom Samantha Secor

SAVE THE DATE!

CWL wins title of MOST LOVED NONPROFIT by Hulafrog.com

Coping With LM, Inc. was honored with the title of MOST LOVED NONPROFIT of 2015

by Hulafrog.com* on February 25, 2015.

Thank you to all who voted! 

*Hulafrog.com is an email newsletter and website with the inside scoop on the best local events, 

 destinations & deals for kids and moms.

Hospital gowns are needed!

Photo credit: Lazy Girl Designs

We are  in GREAT need of infant-toddler size 

(boy/girl colors & prints) hospital gowns 

for our Breathe Easy Care Package Program.

These gowns will be included in our care packages and 

given to Pint-Sized Powerhouses' who are scheduled to have airway surgery.

All donations are appreciated and can be mailed to:

Coping With LM, Inc.

PO Box 313

Port Monmouth, NJ 07758

USA

*please include your name and address so we can properly thank you!*

*all donations are tax deductible and receipts will be given*

Malacia Mom Leah says:

"My son is getting surgery this month and we just received his care package. The thought of my son going into surgery is dreadful but the little surgical gown, Lu The Lamb and the beautiful blanket makes the thought so much more positive!"

 (5 Star Review from GreatNonprofits.com)

Get a FREE gown pattern here and here .