When my daughter was very, very small, we used what we called a “stroller” to get her around. Provided by the local wheelchair vendor, the chair gave her table-height seating, appropriate positioning, and reclined fully, in the event she fractured. It was a great chair for her needs at the time, because she was so tiny, so delicate that there was no way she could push a wheelchair herself. Her arms and hands were so fragile and weak she couldn’t hold a pencil for very long.
Then, when she was three years old, she got her first power wheelchair, a Permobil, which was, at the time, the Cadillac of wheelchairs for OI kids. The vendor brought the chair to our house for a trial, and once she got used to the joystick, she maneuvered that chair every possible direction, including elevating it to table height and back down to the ground, where she could eventually climb into and out of it by herself. And at the time, just the thought of her climbing that high–four inches off the ground–was enough to keep me awake at night. The elevator mechanism, however, was perfect for a girl going into preschool, where the kids often gather on the carpet for “circle time”. This way, she could safely be down near the floor with the rest of her peers.
To this point in her life, she was a very timid, shy child, who buried her face in my neck when strangers would look at her. So different from her brother, who was bold and outgoing from the moment he could stand up on his own, she was more like me as a child; withdrawn, content to be on her own. Some of her timidity was, I was sure, a result of being so fragile, so breakable when handled by people who didn’t know to be gentle. She self-protected by staying away from everyone.
But oh, her first day at preschool with her new red Permobil showed me how very wrong I was. She drove up the ramp and into the classroom, and with barely a nod in my direction, she was off across the room. I watched her interacting with the other three- and four-year-olds, her eyes enormous and bright and alive, for the first time being truly part of the group.
And she was never the same.
My shy little girl became the center of laughter and noise and talk in every classroom she was in from that point forward. Her power chair gave her the courage to approach new people without fear of being injured by a carelessly flung hand or an over-enthusiastic playful kick. The chair provided a physical buffer between her and the other preschoolers, and she became this PERSONALITY, a brash, goofy, intelligent, playful child who drew people to her by dint of her incredible energy.
Far from being just like me, she’s just like my mother, who she never knew.
That girl will go to her freshman orientation at university next Monday. And as difficult as it’s going to be for me, I am going to have to drop her off at the main entrance and wave goodbye, and remind myself of that first moment in preschool, when she stepped out from behind her mother’s protective grasp and became her own person. With the right tools at her disposal–a safe chair, a few physical accommodations on campus, and a powerful personality–she will become someone completely different once again. Lurking behind her melted milk-chocolate eyes I think I see a charismatic leader, one who needs only the chance to speak for herself, without the filter of her mother’s thoughts or the inhibitions of the provincial suburban mentality.
I just wish–how I wish–I could invisibly watch her on her first day on campus, taking the first steps into this big world, the first steps into whatever big person she is going to be. I want to watch. I know I can’t. I won’t try. That would be damaging to her.
But my girl, my fragile girl who almost couldn’t hold a pencil, is about to become.
Meg Currell is pretending to be very brave.