I’m wearing purple today…Do you know why?

Seven years ago I was in a Mommy and Me class with my oldest. I got to meet other first time moms and was grateful to have found new playmates for my  new little guy! I was doing the ‘normal’ thing – making small talk with the mom’s and make silly faces at the kids to make them laugh ( because you all aaaaaaalready KNOW – how dang funny I THINK I am). I was trying to get one little girl to smile and no matter how crazy I acted she-just-looked-at-me. (now I can tell you – that sometimes, on occasion – I may or may not be as funny as I think I am and I thought that THIS was one of those very rare occasions.) Finally I just asked her “are you always this mellow?” Her mom replied “yeah, she’s a pretty mellow girl, and she also has Moebius Syndrome. I had never heard of that before and asked more about it. In a nut shell it is facial paralysis. Hayley, and others born with Moebius Syndrome are born without certain cranial nerves that effect; lateral eye movement, speech, and the ability to smile. SOMETHING about that rang a familiar bell. I knew I had heard of that before – but needed to think about where. After thinking about it a while I remembered reading an article, that was in ‘PEOPLE’ Magazine, when I was in high school about a little girl who somehow regained her smile, and I vividly remember pictures of her, but couldn’t remember why she couldn’t smile before – then everything clicked – that little girl that I had read about 20 years ago (wow – did I just age myself – dang it!) must have had Moebius Syndrome! That was the first time and the last time I had ever heard of it.

Sooooo today may have been the FIRST time YOU have ever heard of Moebius Syndrome – but PLEASE don’t make it your last.

TODAY IS: NATIONAL MOEBIUS SYNDROME AWARENESS DAY and I am wearing purple to support Hayley and to help bring awareness to this cause.

Heather, Hayley’s mom, is one of my best friends. I have had the privilege of watching this sweet little baby grow into a absolutely gorgeous (and still very sweet) young girl. Last year Hayley went through TWO major (we’re talking over 9 hours here) surgeries to help bring the smile to her face that was ALWAYS inside. The wonderful surgeons at Cedars Sinai, harvested a nerve and a muscle from the inner portion of Hayley’s thigh, and transplanted it into her cheek. The surgery was done in two steps,  first the left side of her face, then the right side was done about 4 months later. Since the Moebius Syndrome can effect one’s ability to speak – Hayley, her family and friends learned sign language to help communicate with her. Hayley, and her mom for that matter, are a couple of the strongest girls I know. Within hours of coming out of surgery Hayley was giving her mom the sign language symbol for “Hayley is OK”.  – heart-melting-

Below are some images of Hayley through the years – and REGARDLESS of her inability or ability to physically smile – you can see her smile in here behind those  beautiful blue eyes.

Hayley – I am honored to be your friend and proudly wear purple in your honor. LOVE YOU!!!!

Newborn Hayley – Photo credit: Heather

Hayley about 2 years old with her new little sister. She may not be able to smile with her mouth but you can sure see it coming through those eyes!
Photo credit: Heather

Pre-school graduation photo credit: Heather

Hayley and her kick ass mom – Heather – just before her first surgery. Photo credit: anonymous

Here is the super star herself shortly after surgery letting us all know that “Hayley is OK!”
I held it together all day sitting with Heather during the surgery, but when she texted this photo –
I lost it. Hayley is SUCH a brave beautiful girl!
Photo credit: Heather

After Hayley had her second surgery, healed, and exercised those two new muscles of hers – what was the obvious thing to do?
You got it!  A PHOTO SHOOT!

ROCK IT GIRLFRIEND! Go Hayley! Go Hayley!

nooooooow… the ‘catch’ of this session was that Hayley was not 100% comfortable with
her ‘new smile’ – so I promised not to ask her to do it. SHE could do it if SHE wanted – but I was
not to ask….. Soooo when she threw these beauties out there… – inside- I was jumping up and down
screaming in my head “HAYLEY IS SMILING!!!!”
But on the outside I was acting like ‘oh a smile? – yeah – I’ve seen it a million times – no biggie’ 🙂 !!!!

Fast forward a couple of months and not only is Hayley rockin’ her new smile but also a sassy new hair do!
And of course giving us the “all is good” sign!
Love you Hayley and I’m wearing purple for you!