When Asher was a baby and had his catastrophic bleeds, a wheelchair seemed like the worst fate possible. Ok let me rephrase that - the second worst fate possible. After he lived through those bleeds and we realized he could have died, but was actually going to survive with a great quality of life, it only then became the worst case scenario.
And it remained that way for a long time. When he was officially diagnosed with CP, all I could think of was my (in hindsight - selfish) dreams vanishing, care of a wheelchair. How would our family backpack through Europe? How would our house work? In fact how would we do anything at all with a child in a wheelchair?
Some days it still feels that overwhelming, I must admit. But as we inch closer to the real possibility* of a wheelchair joining our lives, it is actually becoming less frightening.
Take Rio for instance, who at the start of the school year refused to talk to me about the little girl in her school in a wheelchair. When I brought up the subject she wanted nothing to do with it. A wheelchair was so outside of her norm that I think it made her uncomfortable - although sensitive thing that she is, knew that she should pretend it didn't.
But recently we borrowed a new chair for Asher - similar to the one he will soon be receiving. Rio loves it because its base is on wheels so she can push him around the house, "dance" with him, and spin him in circles while he screams in delight.
I walked into the living room where they were playing the other night and she said excitedly, "Mom, it's almost like a wheelchair because it's got little knobs at the back that I can pretend are handles". The breath was sucked out of me momentarily, but I didn't want her to see my reaction.
"Ya Rio, it's almost like a wheelchair". Gulp.
"Mom, if he has a wheelchair, he can go to school in it! And he will be able to move around his classroom all by himself!" she said with glee at the sheer possibility, then turned away because more pushing and spinning was required of her.
There it was. That hypothetical conversation I had been dreading having with her maybe-someday-possibly in the future, was done. No big deal. According to Rio, a wheelchair isn't the end of the world. In fact, better than that, it's a way to give Asher independence. A way to let him him move around all by himself.
As usual, my kids are wiser than me. Nothing like a little reality check from a 6 year old to straighten out your priorities.
*By no means are we saying Asher is 100% wheelchair bound. BUT, we need to think realistically that he is going to need some sort of help walking so we are keeping or minds open to any and all possibilities.