The complexities of the human body are astounding. The ability for adaptation and compensation is what helps keep Ella functioning in the world. The world, however, is a complex place. It is full of tasks and things to accomplish. The human psyche, with its need for independence and self-worth, interacts with the world's demands in order to fulfill itself. We grow. We mature. We become self-sufficient.
The challenges of SMA are wide spread. From nutrition issues to breathing ones. From muscle deterioration to psychological battles. From adapting to accepting the limits. Physically, mentally, socially and spiritually--one stricken with this terminal disease faces challenges in each arena.
Ella is no exception.
She's three now. She's more aware of her self as a person. She is more aware of the SMA that challenges her on a minute by minute basis. She realizes that she has to work harder than most to accomplish the simplest of tasks. She is learning how to use what she has in order to access the world. The learning will continue.
Ella has started therapies with Easter Seals this summer. She goes to PT (Physical Therapy), OT (Occupational Therapy), and Aqua Therapy once a week for each. Her Physical Therapist also works with her during Aqua Therapy.
The work done by the therapists through Early Intervention has set the stage for the continued therapies. Ella learned much from her former PT and OT and she grew attached to them. Her new therapists show a promise to continue and expand the good work already laid down.
I watched Ella in each of her therapies this week. Again, I gained a new appreciation for my three-year old daughter with SMA. I watched as she sat quietly taking in the new environments and new therapists. I watched as she warmed up to both. I watched as she focused on her tasks and put forth great efforts to accomplish the goals set forth for her.
I watched as she struggled.
I watched as she succeeded.
I watched my little girl fight against SMA.
I invite you to take a moment...and watch...
