Many of you are most likely unaware that my oldest son was born with an extremely rare form of ectodermal dysplasia. At his birth it presented itself as a clef palate with under developed finger and toe nails.
My oldest at 15 months after 2 surgeries
As time and surgeries went on our genetic team came to us with new developments around his 2nd birthday as a rash of “allergies” and head sores began to rule our lives. My little R wasn’t just suffering from a clef palate birth defect he was instead showing the signs of Rapp- Hodgkins syndrome. As we sat and listened to doctors explain to us what that meant and how it would affect our lives we were also informed we had a 25% chance of our next child also being affected.
As the genetic tests came back they further proved that he did have Rapp-Hodgkins Syndrome. Most of the syndrome is cosmetic issues affecting the skin, abnormal finger and toe nails, hearing problems, tear ducts that run, inflammation of the head, and the clef palate. All of those were issues we had all learned to deal. At this point too we had been though several surgeries for various repairs. The new and most difficult news was his “allergy” outbreaks which had landed us in emergency rooms all summer long, were not allergies but his body’s inability to sweat. Yet another syndrome trait, his skin was not equipped with the normal amount of sweat glands. When he was breaking out in hives and swelling up it was his body’s way of trying to cool itself down in the summer heat.
My husband and I are both active adults, we love it outside. Running, hiking, street hockey, this was how we filled our days. To get the news that our son would probably not be able to participate in sports was heartbreaking for us both. It’s easy to say it doesn’t matter but sports are a great way for kids to meet new friends, foster a sense of community and be active. To know your child won’t be able to participate is difficult for any parent to hear.
Luckily for us, our heartbreak wasn’t long standing. Our second son was born a healthy happy baby with no signs of problems. And we found ice skating which quickly lead to hockey.
My Son and Husband at Hockey.
It was perfect and he loved it! The coolness of the rink helped his body regulate the heat of his body and sweat. Granted it hasn’t been all smooth sailing we had a few episodes but as he has gotten older he is now better at recognizing if there is a problem! Every moment that he steps out on the ice for us is a win!
This year was the first year he played with real hockey games. He skates with so much heart you can see it in the smile on his face. My nerves were in full force watching that game. The whole family was in attendance to cheer on our big little player! After a few shifts out with all his little buddies the entire crowd was entertained when he scored his first goal!! He went on to celebrate the same way he had seen his favorite hockey play Alex Ovechkin do on TV. The entire crowd was laughing and cheering right along with him! It was a kleenex moment for everyone at the rink that day! People were laughing and cheering so hard they were crying! In between my laughter and tears it was wonderful moment that we thought we might not ever see.
Our little guy months later still celebrates in the same fashion after each goal. It has become his own little sports calling card and makes identifying him much easier on the ice. Each time it brings a smile to my face and a tear to my eye. He’s proof that sports and life is all about overcoming your obstacles and never giving up.
Although this wasn’t the same game here is a video of his now famous goal celebrations!
Kleenex has a very cool opportunity for you to create your own custom boxes for your favorite little and big athletes! Talk about a great gift and coach idea! Visit their site to learn more about creating your very own box of Kleenex.
Get a Kleenex custom oval BOGO until 11/15/12, just use the code PLAYOFFS at checkout on the Kleenex site. I was selected for this opportunity as a member of Clever Girls Collective, and the content and opinions expressed here are all my own.