She knows how it feels. To put weight on her feet. She knows how it feels. To be vertical. She knows how it feels. To let her trunk muscles stretch. If only for a few seconds.
If only for a few seconds she can experience what you and I feel everyday without us even thinking about it.
If only for a few seconds she can look at the world from a different perspective; a standing perspective.
If only for a few seconds she can gather pride in herself doing what everyone else does.
If only for a few seconds.
The beautiful thing about photographs is that they capture a few seconds and keep them forever. They allow us to relish in a moment that hardly existed. Photographs bring the time needed to look deeply at what is before us, soaking in each aspect of the event; finding fresh nuances not previously noticed.
When I saw the picture above I thought she had been standing for longer than she really was. I looked twice and searched for the ankle weights and found none. I wasn't quite believing what I was seeing. I learned later that she was holding her own--for a few seconds.
Such a glorious few seconds. A few seconds that open the gates for more seconds just like it. A few seconds that defy SMA at its core. A few seconds that have been captured and will be held onto as inspiration.
Many people in the SMA community speak of "battling" this disease. They call it "fighting SMA"; affected kids are often referred to as "warriors". The connotation behind these phrases brings to the mind a very active and intense scene; and rightfully so. SMA and the challenges it brings can be extremely intense; it is very much like fighting a battle. There are, however, moments of victory that are quiet and unassuming. These few brief seconds pictured above, as small as they are in relation to her lifetime thus far, hold equal, if not more, promise and courage that any battle our warrior has fought thus far.
Her warrior status in this moment is one of quiet determination. Her battle lies two-fold...always against SMA and gravity. Her fight breaks open the future.
Every child, every person, every warrior, that has and is fighting the battle against SMA knows that if for only a few seconds they can do something previously denied them by this disease then they have moved mountains.
Well done Ella. Mommy & Daddy are proud of you. And you did it for those beautiful few seconds.
