Haley Is My Hero

One of the co-morbid conditions that come along with Dravet syndrome seems to be flat feet with ankle pronation (ankles turning inward).   Up until last year Haley did not have too much trouble with her walking, but in the spring of 2008 we noticed that her ankles were getting worse and causing her knees to bend and come together.  The beginning of a "crouching" walk was appearing.  We went to one orthopedist and he basically dismissed us and rolled his eyes at me.  He did not know he was speaking with another M.D., "Mommy Doctor" that is...  So after the IDEA League conference in August we made another appointment at Children's Hospital in Norfolk.  Dr. St. Remy was wonderful!  He actually was interested in hearing what I had to say about Dravet syndrome and Haley's prognosis.  Soon after our appointment Haley was fitted for SMO orthotics.  We thought everything would be great! 

We picked up the orthotics in early November.  They were beautiful light blue with pink and purple hearts, what could be better???  Since we had waited to buy any new shoes until we got the orthotics, Haley and I immediately went shopping after picking up her new devices.  That is when it hit me.  These braces were going to make it apparent to the world that my child had a disability.  How humbling all of this has been to both Bobby (Haley's dad) and me!

When we went to the shoe store, we sized her foot with the orthotics on.  She immediately went from a 13 to a size 2 WIDE.  It took us several tries to find a shoe wide enough for the orthotics.   Fortunately we found a pair of K-Swiss shoes that fit nicely over the orthotics and went on with just a little bit of a struggle.  As I stood back to watch Haley walk in her new shoes, all I could think of was she looks like the little girl from Frosty the Snowman.  There she was with her toothpick-thin legs with these huge shoes.   As for Haley, she could care less what she looked like.  All she wanted to do was ride the dinosaur ride in the kids section. 

When I walked in the door at home I waited for Bobby's reaction.  I had told him on the phone that he probably would not like them because they protruded from the shoe.   I also let him know that she had to go up two sizes in shoes.  He echoed my sentiments that a disability was now apparent, but with pants on it was not too bad.

Being who I am, once I put the kids to bed that night, I immediately went to the computer to find the shoes that were "made for orthotics".  In my naiveté I thought somehow these shoes would be smaller and fit more like a "glove" over Haley's braces.  I ordered two pairs of "Hatchback" shoes, one shiny black patent leather for church and a new pair of tennis shoes.  They arrived and to my dismay they were larger than the K-Swiss!   Of course Haley loved the new black shoes, calling them her "tap shoes". 

Thanksgiving arrived and it was time to visit the family and show them the "new feet".  Haley decided to wear her black and white leopard print skirt and black tights and black shoes.  Bobby immediately did not like the idea.  But what could we do? We just shrugged our shoulders and went on our way.  Once at my parents? house you could see the relative?s glances from Haley's face, down to her huge, disproportionate feet and back up to Haley?s smiling face!  Nothing different than both Bobby and I did the first time we saw the orthotics.  Bobby removed the shoes at the first opportunity.

We did find that Crocs worked well with the orthotics.  Since they are already so big and bulky, they make the orthotic less apparent.  Not to mention how much easier it is to get them on over the devices.  It certainly helps out Mommy when she is dressing Haley.

When it was time to visit Santa, Haley again chose her most favorite clothing item to wear?the leopard print skirt.  I quickly talked her into pants; after all it was too cold for a skirt!  Bobby hollered from the next room (privy to our conversation due to the baby monitor that is always on in Haley?s room) that he did not want Haley wearing the black shoes.  His reason?they were too uncomfortable.  When I was alone with him I asked, ?too uncomfortable for who?...you or Haley?? 

We both agreed that we needed to learn another lesson in life from Haley.  It is not how you look, it is who you are, it is not how you are dressed, it is whether or not you enjoy the place where you are, and Haley does that better than most.  Thank you Haley for another life lesson!