This is Bob the wheelchair. You may remember Bob from the post, My Baby is Going to School.
Bob is a really nice wheelchair. He has all the bells and whistles as far as wheelchairs go. I got to pick his blue/grey color. His metal frame has a subtle sparkle to it. Bob has Nathan’s name printed on the seat so he won’t get lost at school. He has a nice large tray and a sun shade. He folds, fairly easily, into the back of the van. Most importantly, Bob supports Nathan’s body well and elevates him to a more appropriate level than a stroller in a social setting. But, I’m still having a hard time accepting Bob into my home and into Nathan’s life. Bob does not make my house look like the Pottery Barn catalog like I so desperately want. (But who am I kidding my house would not look like the Pottery Barn catalog even if it weren’t for Bob!)
One day in a fit of grief and anger I told my husband, while motioning at Bob in a shaming way, that he was a very antiquated mode of transportation! I think my malicious attack on Bob is because he unexpectedly triggers the image of that old rickety wheelchair in the horror movie, “The Changeling.” I sometimes walk past him in sitting in my dining room and think that he is going to come crashing down the stairs in a blaze of fire. We don’t even have stairs in our house. Obviously I have issues with Bob.
It’s not just Bob that’s a problem for me (although Bob is the only one that comes alive in my imagination). I have a hard time with all the medical equipment that crosses our threshold. It is helpful to Nathan in so many ways, but I hate everything that it represents. To me, it represents everything that he isn’t doing.
But like many things in life, Bob is a BOTH/AND. I have to remind myself of this daily. Nathan can have Bob for school and long distance shopping trips AND he can learn to walk. Nathan can use BOTH a walker and Bob to help him gain the strength and endurance to walk further distances in time. There are other BOTH/ANDs in my house: the urine hat in my bathroom for cathing (and saving Nathan’s kidney), the IV pole with a feeding pump and bag of formula, the syringes in the sink, and the suction machine constantly on call for a choking episode. All of these make-up the toolkit of supplies that are helping Nathan do things he wouldn’t otherwise be doing.
Most of my resistance to Nathan’s medical equipment is because I never imagined that I would have a child with disabilities. No one does. No one imagines what it looks like to house a wheelchair in their hallway. As I’m grieving my way through each new stage of medical equipment I’m seeing more of the BOTH/AND. The BOTH/AND helps me see through the fog that each of these tools are actually helping Nathan do more, not less. Bob is helping Nathan do more.
Welcome to our home, Bob. I promise to be nicer, but pretty soon you’re going have to move on over cause this boy is going to walk.
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!