Tuesday, October 13, 2015

Faces of Spina Bifida: Meet Kate and Ciarlo!

Meet Kate
17 years old

"Kate is 17 years old. L5/S1. A walker and a wheeler. A lover of sleep-away-camp. A girl who loves to try new things. A girl who struggles in school at times, but who never seems to let that get her down. A girl who loves Jesus—a girl who will dance for Him one day. (She uses her wheelchair mainly at school and if we go to the mall/other long-distance outings. Otherwise she walks.)"

How does Kate describe herself: Caring

What does Kate like about herself?

"I am kind and I have a lot of good friends."

What do you know now that you wish you had known when you first heard the SB diagnoses?

"As a parent fearing the worst, I wish that someone had told me that the current situation (learning SO MUCH after she was born) wouldn’t be the norm of our lives. Those first few weeks were intense, but if I had known and understood that in between those relatively short periods of intensity would be relative normalcy, I don’t think that I would have felt so inadequate.

(We learned that Kate had SB when I was 17 weeks along. I read a—excuse me—crappy book that nearly sent me into a major depression. To be quite honest, I put the worst of it behind me and just kept plugging along … well, I did so after about a month of non-stop tears. Once she was born, I realized that I had A LOT to learn, and that fact was overwhelming!)

Also, I would like to strongly encourage new parents of an SB child to listen to and absorb what the parents who have walked this path before you have to say. Of course your child’s path will be unique—that is to be expected given the nature of SB. But do not discount the idea that you could very well be walking/wheeling a parallel path. I wish that I had listened a little more intently to those who knew more than I did. To quote the Indigo Girls: “I missed 10 million miles of road I should have {or could have} seen”—if I had been willing to listen and learn."

What makes your daughter awesome?

"One thing that has really made Kate shine is her special needs cheer team. She has been on one since 2011 and she loves it. She is the oldest team member of the team she is currently with, and being the oldest has only brought out the best in her. Her confidence and leadership skills have sky-rocketed since becoming a part of The Cheer Connection Spirit Team. And in the process of being an integral part of a special needs team, she has developed a huge heart for kids with other special needs. The other parents praise Kate all of the time for her patience and for her heart in looking out for her younger teammates."

Kate's mom, Kristi on Facebook

Meet Ciarlo
5 years old

How does Ciarlo describe himself: Awesome!

What makes Ciarlo awesome?

"Ciarlo says he's awesome because he runs really fast with his crutches. Ciarlo is called the mayor by most who meet him, he's so friendly and engaging with EVERYONE! He's fun, funny, so smart, extremely verbal, sweet, loving and has endless amounts of energy!"

What do you know now that you wish you had known when you first heard the SB diagnoses?

"How amazing Ciarlo is! That he was just going to be a baby, yes he came with extras, but he was just going to be a cute little baby. I don't know what I expected, after all the horrors of hearing about the lemon head and shunts, etc. When I first saw him and heard him screaming, he was just a sweet baby and all the fears sort of washed away."

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