There's a transition between our family room and the kitchen that separates the wood floor of the family room from the ceramic tile of the kitchen. It can't be more than 2mm high. It rests on a ridge between the two floors as they transition creating a slight angle. The angle can't be more than 5 degrees.
When we put in the new wood floors, for Ella and her manual wheelchair, she was unable to get over the original transition (it was maybe 4mm high). A friend of ours modified the transition to its current state and we re-installed it. Ella had a bit of an easier time with it but still could not navigate over it on a consistent basis. We resigned ourselves to the fact that one of us would have to give her that little teeny push she needed to clear the transition. So it goes.
I have noticed in the past few days that she has suddenly appeared in the kitchen! There she is, doing her little "Ella Dance" in her chair--in the kitchen! Of course she knows what she did and the smile that she tries to hide is unmistakable. So proud she is of herself. We are too.
She's a fighter. She's a worker. She's a determined little girl. A 2mm transition may not seem like much to you and me but to a 19-month old who has SMA it is a big hurdle.
I cannot imagine not having the strength to move myself from one room to another simply because of a small piece of wood.
I couldn't fathom not being able to raise my arms high enough to touch my hair.
I am perplexed at the prospect of a person having to lie in the same position during sleep; not able to re-position themselves.
I can't hold in my mind not being able to grasp a crayon with a grip strong enough to allow me to actually color a single line.
How would I survive not being able to lift a cup of water to my mouth to quench my thirst?
I don't know how I would handle losing the skills and physical abilities I once possessed...one after another...in such a short period of time.
I watch my baby girl, our Ella, as she has gone through her short life regressing in her abilities; and yet she brings a smile to each morning.
She faces each challenge with more vigor and spunk than the last. She finds a way to overcome whatever obstacle has been placed in front of her.
I can only look at her in awe and wonder. I can only see her as a person who will fight for her survival.
To know Ella is to be humbled into a place that reminds one how precious each aspect of our life really is. To be grateful for what we do have and to always look forward.
She is a remarkable 19-month old.
