We attended an SMA Fundraiser for a young girl in Naperville. Her best friend has, for the past five years, put together an event for her friend with SMA.
When we signed up to attend, we e-mailed back and forth with the parents of the best friend, sharing thoughts and words of anticipation for the upcoming event. We were excited while at the same time, apprehensive. The reality of SMA would surely be surrounding us at the event. For the first time...we are leaving the privacy of our own home and venturing out into the world of SMA.
Early in the morning we received an e-mail from the mother of the girl with SMA asking if they could show the "Ella SMA Awareness" video we created earlier this week. We, of course, agreed...humbly.
Walking into a roomful of people, not knowing anyone personally, yet being recognized by many, was an experience we had never had before...for the first time we were welcomed into a world that, 3 months ago, we never even knew existed. People had seen the video on YouTube...they knew Ella. They knew the Castens.
We spent several hours among people who have and still are living with SMA in their lives. We talked about life with SMA; about equipment, research, hope, tears, laughter, and the kids that touch our hearts so deeply. We connected on a level that is brand new to us and ever so refreshing and comforting.
The day before the fundraiser we received Ella's demo "micro-wheelchair" (a 7 lb manual wheelchair designed for very tiny people!) For the past day she would push the wheels back and forth, making the chair "rock"...sort of like a rocking horse. Ava & Henry have been great in their attempts to show her how to move the wheelchair yet she still kept doing the "rocking horse" motion.
Right before we were to get ready for the fundraiser, we put Ella in her "demo" micro-wheelchair...in another attempt to teach her how to move it. She continued to do the "rocking horse" motion. Then...she pushed the wheels forward and let go. For the first time she let go!! She repositioned her hands and did it again...
We stopped. The world stopped. The SMA stopped.
She beamed in delight for she knew what she had done. We gathered around her and encouraged her to do it again. She obliged happily. We took a video...for the first time in months Ella had moved under her own power.
We cried. We hugged. We embraced the moment. We felt victory over the SMA--over the disease that threatens our youngest child.
For the first time our family rejoiced in the moment as the world around us melted away...we rejoiced in the love, hope, and faith that we cling to every moment of every day.
A video showing, "For the First Time".
~Ella in her wheelchair...moving it under her own power~
~Ella in her wheelchair...moving it under her own power~
