She could hardly contain herself.
She had a glow about her unlike any other time in her day.
She was supporting herself and did so for some time...longer than she ever had before.
The Ramirez family traveled from Iowa to Naperville, IL to build Ella her own set of parallel bars.
From Iowa.
They too, have three children. They too, have a life that includes SMA. Their youngest daughter was diagnosed with SMA when she was two years old. The doctors, of course, said that she (Madi) would never walk.
They were wrong. Madi does walk. By herself. She worked hard, fell often, and persevered. She walks. Not 100% of the time...but she walks.
When the Ramirez's arrived at our house they quickly got to work measuring Ella and figuring out the best configuration for her parallel bars. In the meantime, Ella and Madi befriended one another on a closer basis than they had earlier in their lives when they saw each other at fundraisers. They played together, ate popcorn together, and shared. Ava and Henry joined in the fun!
Within 45 minutes the new parallel bars were finished. We outfitted Ella with all of her braces and placed her between the bars--it was a perfect fit. With help from Lindsay she walked along the length of the bars. We could instantly tell that she loved the bars. She was comfortable and more importantly, she was confident.
Lindsay placed Ella's feet into the standing position and Ella grabbed the bars with her two hands. Lindsay let go of her waist without Ella really knowing it. With a little shift in her weight Ella realized that she was not being held. She naturally pushed down on the bars to straighten herself up and was standing. Lindsay wrapped her arms around Ella without touching her to show her that she wasn't holding her. Ella's eyes lit up and her smile filled the room. She looked around at everyone who was watching. For those few moments her world was transformed.
Transformed from being in the sitting position most of her waking hours to feeling the weight of her own body on her feet.
Transformed from depending on someone to make sure she doesn't fall to using her arms in concert with her mind to hold herself upright.
Transformed from hearing, "Would you like to stand in your stander?" to "Look at you, you're standing all by yourself!!"
Transformed from wanting to stand to experiencing it.
I also noticed the expressions on the Ramirez's faces. I could see in their eyes the memories of their own daughter when she first took to the parallel bars they had made for her a few years back. The pride they showed for Ella was surely reminiscent of the pride they must have felt for their Madi. As they stood in our family room watching Ella take herself from dependence to independence I could only imagine the experiences they must have had as Madi learned to walk. I felt that they want those experiences for us, for Ella, and for all families with SMA.
We've known that the SMA Community is extremely supportive of one another. We have experienced e-mails, texts, phone calls, and person-to-person help. When one family with SMA reaches out a rush of several families respond...it's quite amazing actually.
From Iowa they traveled to Naperville, IL to build a set of parallel bars for Ella...so she might have the chance to learn how to walk.
Incredible.
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| Madi & Ella (& Sasa!) |
