As you may have read, the insurance company approved her power wheelchair. They approved it without blinking. That's really incredible considering that many people have to fight the insurance companies to get what their kids need. The feelings that filled our house when we knew she would have the wheelchair settled in for the night. Many of you celebrated with us through your words and thoughts.
As time slowly rolled by today I found myself thinking more and more about the Permobil K-450 that would soon arrive at our doorstep. The practical side of me is still excited. I'm excited for Ella to have a way to interact with her environment; excited to teach her how to use the 300+ lb piece of modern technological equipment that is a far cry from the kinds of wheelchairs available to kids who needed them when I was little.
Then my mind takes a detour as it so often has these past few months. A detour that I travel blindly. Travel it I must though, for it is part of what a parent of a child with a terminal disease must endure. A highway with no road signs, no speed limit, and no warning of the detour just ahead.
Someone spoke to me today...I literally did not hear them. They were speaking directly to me. My mind and senses were on a detour; this one was traveled on automatic pilot~I had no control of the thoughts that entered into the crevices of my mind. The reality of where I was became lost in the depths of the detour. It whisked me downward, almost as if I were spinning, and left me alone in a cold, damp, dwindling state of mind. The voice that beckoned for my attention was now silent and I felt several pairs of eyes upon me. The patient looks of those surrounding me gently lifted me from the detour and brought me back; quickly, smoothly and without judgement.
For the rest of the day and to the moment of writing this blog, the remnants of that detour remains.
I spent time with each of my kids this evening. Henry sat on my lap as we watched the Sesame Street character, Ernie, singing in the tub to his rubber ducky. I lay next to Ava before she fell asleep reassuring her that tomorrow is another day and she can start all over (she had a rough night!). I sat with Ella just before dinner watching her play with Play-Doh; organizing it, manipulating it, and generally focusing all of her attention on the task as hand.
I sat down to write this blog and while doing so received an email notification for a comment that was submitted on our last blog.
I read it. I stopped writing. I put the kids to bed.
Apparently, the person who makes the wheelchairs went in to work today (his day off, mind you) to make Ella's chair...just for her.
Another detour.
But this detour does not have the same markings as the other one I experienced today. This one quickly took me down a road of compassion and goodwill. The crevices that were previously filled with the darkness of SMA were now filling with the brightness of compassion. Ella is a fortunate girl.
I still hold fast to the fact that this wheelchair is good. I also am realistic with myself and know that I will struggle with the implications that go with it.
I know that the detours that SMA carries me through in my mind will continue; yet I also know that these detours hold the sum of all the experiences I will feel...the good, the bad, and everything in between.
