Monday, July 30, 2012

And the winners are...

The winner of the photography session from Amy Hall Photography is....

Michelle Attardi !

Congrats to the Attardi family! 

-Krista Lee P, Stormye Wimmack, Leah Abbadin and Stephanie Bodine 

please contact with your mailing address for 

your I <3 someone with a floppy larynx! bumper stickers! 

Thank you to everyone who has supported CWL these past 2 years!

Wednesday, July 11, 2012

CWL Turns 2! Happy Bday Giveaway!

 CWL celebrate it's 2nd Birthday by

 giving away a photo shoot to one lucky LM family!

Rules & how to enter:
1.Please read all travel information prior to entering. Click here.

2.Leave a birthday wish to CWL on this blog post. 
(please include parents & LM baby's name with location)

3. Family must have a baby with LM.
 (upon winning the family must submit medical documentation to CWL)

4. The family must live in New Jersey.

5. Don't live in NJ?
10 lucky winners will receive a I <3 someone with a floppy larynx bumper sticker! 

The winner will be selected via and announced on the CWL Facebook page. 

Giveaway is open from 7/11-7/18

Saturday, July 7, 2012

Social Media, LM & Doing Better

I have always had a mixed response when I shared Seraphina's journey with LM in the social media world. People only want to hear  read posts about the good.Family vacations-OK, Weddings-OK, Cute pictures of your new puppy-OK, picture of your infant in ICU- NOT OK. 

As I walked through the darkness of having a baby with LM... I could not help but become hurt, offend and angry towards this response....
Despite what some believe, motherhood isn't always a walk in the park. Sometimes you are given very high mountains to climb, by sharing a snapshot into my life at that moment...I was not looking for sympathy but strength so I could climb to the top.

Then I realized something... you can not find strength within someone who does not know.

And here we are. The battle between the LM Supermama and social media. Ideally, it would be a supportive, educational platform between a mother and her family and friends...but instead it has become a "doesn't she know it could be worse?!?" target hung directly on the mothers heart. Many mothers are dealing with rude comments and defriending while they should be receiving support and encouragement from their circle. 

 In my opinion, this falls into the category of bullying. No mother should be attacked for sharing her life ...good or bad... let alone from her uneducated family and friends.

It saddens me when I receive Emails from a LM Supermama saying she is so grateful for CWL because it is her only support system. Her husband is in denial, her family doesn't understand why they need to know CPR in order to babysit and her friends simply can not comprehend the overwhelming stress she feels on a daily basis. 

It has to stop.  It NEEDS to stop.
And education is the key. 

Ignorant people say ignorant things because they simply do not know any better... but when you know better, you do better. It is  your responsibly as a LM Supermama to educate your peers on this defect. Nothing will change unless you change it. Do not expect words of encouragement unless you first give words of knowledge. Tell your family what LM is. The symptoms. How serious it can be. Teach them how to respond to the apnea monitor, work the oxygen tank and change the feeding tube. Let them know how hard, overwhelming and stressful this is for you. And then, maybe instead of a rude comment... you will receive a home cooked dinner.

Need help educating? 
Request Educational Postcards from CWL to pass out to family & friends.
Send a request to: 
subject title: PC Request

Wednesday, July 4, 2012

Waiting to outgrow it, again.

As soon as I saw the pink plus sign on the pregnancy test last late August... my first thought was: please do not have LM. As my bump grew, the overwhelming fear of having another child with laryngomalacia grew.I would randomly stop and ask my friends and family... do you think this baby will have LM? I was constantly looking for reassurance that this new life would not have the defect that nearly killed Seraphina. I would lay in bed at night, thinking.. what if this happens again. How would I possibly do it... again? How would I survive...again? 
I forced myself to remain positive. For it was out of my hands. I put faith into the idea that if I was given another floppy larynx baby... it was not because I did something wrong, I failed at making a healthy baby... but because Someone knew I was capable of taking care, loving and enjoying such a precious, special life. 

On April 21, 2012 Maximus Daniel came into this world. Born at a healthy (and heavy) 8lbs 14oz, 21 inches long. A beautiful miracle and the perfect addition our family. Big sisters Lilli and Seraphina are totally head over heels in love.
Seraphina calls him, "Maxy and Baby Brother" haha

Soon after his birth, Max developed a stridor. I was again told, it was "normal newborn congestion." He showed no signs of distress or trouble nursing so I trusted that... this time... it was simply congestion. 

As weeks pasted that overwhelming ache in my heart came back. The same ache I had when Seraphina was born. I knew. 

 I knew he had LM

After he nursed I would lay him on my chest to burp.. and I could hear it. The floppiness. 
I made an appointment with our ENT.... I used Lilli needing her ear tubes check as an excuse to go down to the office. I needed the doctor to tell me, he DIDN'T have LM.
I needed him to tell me... my motherly instinct was...wrong

 On June 28th Max was diagnosed with laryngomalacia.  

In every situation there is good despite how dark it may be.You have a choice to let something destroy you... or to let it empower you.

The good is that Max's LM is not that severe. He does have a stridor, some gasping and reflux... but as of now, will not need surgery.

So here we are... waiting to outgrow it...again. 

There is a difference this time around though... and that is... I have Hope. I have Hope everything will be okay... I will survive, Max will be just fine and although I sometimes think differently... I do have strength to do it, again. 

And you know what?

I love him. All of him. Floppy larynx and all. 
Photo credit: Rambling Photography, LLC
(C) Copyright. All rights reserved.

-Stephanie Hueston
CWL Founder & President