SMA is unpredictable. It leaves us guessing almost everyday. Each night as we put Ella to bed we wonder what kind of night she'll have. We have the guidance of machines to help us monitor her slumber and as she is getting older she can, and frequently does, call for us when she needs us.
Upon waking we wonder what the day will hold for her. How will her strength be? What will her level of frustrations be? What successes will she have?
As she plays we wonder if she'll be able to enjoy the toy(s) or simply throw her head back in utter frustration over what SMA is doing to her...slowly and methodically.
Or is it as methodical as we thought?
Ella was classified as a severe Type 2 in terms of her SMA. The reason for this particular diagnosis is because of her rapid degeneration and loss of motor function early on in her life. She is one of the roughly 20% of kids with SMA whom experience a rapid decline in their function early on...with the expectation of a plateau occurring later.
She used to be able to play, "How big is Ella?"....""Sooo Big!" as she raised her hands over her head.
She lost that.
She used to be able to stand while supporting herself.
She lost that.
She used to be able to do a lot of things.
She has lost much.
Lately, however, we have witnessed no only a plateau but some actual improvement in some areas thought to have been lost forever.
Her arms for instance. She can raise them over her head again.
Her standing, too, has been an area that seems to be improving, albeit she is tailored chest to toes in braces, she supports her self on the parallel bars and bears some weight.
Even the motions of walking have made themselves apparent.
It's encouraging and frightening at the same time. It brings hope to the forefront and harbors the possibility of disappointment. It fills us with meaning yet feels so distant.
The human body is an amazing piece of work...it's intricate, compensatory, and adaptable. The human spirit, however, is the strength behind the body. The human spirit, as it yearns to experience the world, brings with it a desire to persevere.
We watch as Ella's body and spirit are challenged in ways that few can understand. We watch as she fights for the opportunity to take a step, raise her hand, and move the body that God has graced upon her. We watch as she stares SMA in the face and takes on the challenge it presents.
