Gwendolyn’s First Dance Recital

She runs. She dances. She’s Super Gwendolyn!!!

It has been an enormous week for Gwendolyn. Our little girl is accomplishing so much and we are so proud of her and so grateful. Of course, last week she ran her THIRD Half Marathon! She continues attending school full time and this week happened to include some reading comprehension and spelling word testing — and she nailed it! And on Thursday she danced in her very first dance recital — costume and all. These are achievements to be proud of in any child. But in the world of SMA, it almost feels super human.

When Gwendolyn was diagnosed with SMA Type 1, the idea of watching my baby girl in a dance recital seemed impossible. Running a half marathon? Out of the question. And while I am up on the stage helping to move her body so she can dance hip hop and Bill is pushing her wheelchair so she can run — she is getting to do these things, things she wants to do.

Gwendolyn is in such a great place right now. She has incredible stamina. She has a determined focus which seems to further fuel her grit. And she seems especially strong. All of which continues to astound us. Where Gwendolyn is in her life right now is such a different place than we were in last February while in the PICU. And it is so far beyond what we could have imagined when she was diagnosed with SMA as a baby and the doctor said, “Take her home and love her for what limited time you have left.”

SMA makes children so profoundly physically weak. I often forget to explain the actual physical weaknesses of SMA, forgetting that the average person cannot even wrap their head around the limitations SMA creates on the body. The ability to sit up in a chair, to hold one’s head up on their own, to lift one’s arm, to grasp a pencil, to wiggle one’s toes, to open the mouth and be able to form words… all taken. Children face multiple surgeries and therapies and machines and special diets and respiratory treatments several times daily and 24/7 care similar to what you’d find in the intensive care unit at a hospital… all just to help their bodies function in the same way the typical person’s body does.

But limitations are not even in our vocabulary. Pretty much anything Gwendolyn wants to try we have been able to find a way for her to have access to it. And we are not the only ones. We know so many families across the world who do nothing but create opportunities for their children to experience a life that is wild and free. Zip-lining with a breathing machine — no problem with modifications. Riding a horse when one can’t sit up — it can be done with help. Playing team sports in a wheelchair, yup. Surfing — absolutely, in a different way. Ice skating, PE, cheerleading, roller skating, sledding, swimming, sailing, skiing… despite mountains of physical challenges, they are all possible!

So while SMA makes a person profoundly physically weak, they are also incredibly strong. They are brave. They are creative and charming. They are inquisitive and curious. Artistic and musical. Intelligent and daring. Just like Gwendolyn, those with SMA are vibrant little souls who are not defined by their disease. They want the world — just like any person. They live and breathe a NEVER GIVE UP. philosophy.

Soooo… back to Gwendolyn’s hip hop dance recital. It was AWESOME! One thing we know for sure — our girl loves to dance. She was so excited about it and so proud during it. She knows every single move and darts me a “MOM!” glance if I miss a step. She has loved practicing every week with her teacher, Miss Rose, and schoolmates and she and I continued practicing the different moves at home. Our friend and fellow Washington parent, Cliff Hubbard, fixed the elevator behind the stage so Gwendolyn could have full access onto the stage. Miss G has a touch of the performance bug and so getting to have an official recital was the big crescendo to an already wonderful experience. And in costume — double wow! And on the stage — triple wow! And with an audience of adoring fans — oh yeah!!! Gwendolyn felt like she had hit Broadway!

And I loved every single second. Getting to experience this with her, dance with her, make this happen for her — fills me with such satisfaction that the building could be crumbling around me and I would still be laser focused on Gwendolyn’s big smiling eyes.

This has definitely been a big week for our super girl. And not a moment goes by that we are not grateful for the gift of stability, strength, endurance and the opportunity for Gwendolyn to live her life doing all the many things she wants to do.

Video of Miss G Thang being so Hip Hop ::