About four years ago, a wheelchair entered our home and all our lives changed dramatically. It was rather ironic, really, because for my husband and I and three of our children, the wheelchair was simply another adaptive tool added to an already full toolbox used to meet the needs of our unique family. For my oldest daughter, Anna, it represented a restraint. She hates wheelchairs, having spent nearly two months confined to one while wearing a body cast during surgery recovery. Like her younger sister, Anna has a disability, but she is an ambulator, not a chair user, and her prosthetic leg helps her achieve complete independence and nearly all the athletic goals she sets. She hates the stares, the pity and all that comes with wheelchairs. I hate the back-breaking lifting of it into and out of our van, up over bumps and the inevitable step or staircase that always seems to be in the way.
But for our youngest, Alyona, that little pink wheelchair represented liberation. Having just recently been adopted out of an orphanage in southern Ukraine, it was Aly’s first wheelchair. She was a scooter and crawler at the orphanage, as she did at our home at first. Within days she found a Rubbermaid container that she could sit in and slide easily about our hardwood floors. In her box, she glided around the first floor of our house as the rest of us went about getting adjusted to this new little, loud, brilliant and physically dependent child. After going through all the mandatory testing, purging of parasites and tuberculosis, adjusting to new sleeping patterns, culture shock, beginning attachment and learning to speak English, it was time to address her physical disabilities. And, so to the list of health care providers, we added a rehab doctor.
From that point on, things changed and it was all because of the wheelchair. Our first run in with a rehab doctor and her team did not go well, and yielded a year long struggle proving to her and her staff that I was right and they were wrong: Aly didn’t need a $35,000 power wheelchair that weighed over 350 lbs and posed a risk to all the other children she was around. She was able to do much more than they anticipated, and without ever giving her a chance to try a manual chair, they submitted paperwork to our insurance stating her “medical need” for the expensive and high tech chair. I argued that they didn’t know it was necessary because she hadn’t been given a chance to try the simpler road. Yet, rather than admitting they might be wrong and that they should at least let the child try a manual chair, they accused me of denial. Insults ensued, and climaxed with accusations as to my callousness as a mother who wouldn’t get the absolute best wheelchair (one that would have cost our family $65,000 in co pays, ramps and the custom built van large enough to cart it and our seven member family around) for her poor daughter, who was most certainly, in their words, destined for a life of ongoing therapy and intervention.
Didn’t care? If only those accusing me had understood the depth of the pain that I felt over Aly’s losses, how I would gladly amputate my own legs and give them to her, if only that would solve anything. If only they could see what she could do – a four-year-old so brilliant she was teaching herself to read English within a year of first speaking the language – rather than simply see her weakness. But they didn’t and for the first time as a parent, I was looking like I not only didn’t know how to parent, but that I was actually medically negligent.
Being subversive by nature, my reaction was to purchase her a little hot pink manual chair off of Ebay for $150. She was wheeling around our house from the first night my husband pieced the chair together, obviously not needing the behemoth that they had told our insurance was “medically necessary”. We requested the addition of a new rehab doctor onto her team, and I gladly let Aly wheel into her next rehab appointment. She acquiesced with not only some spins, but also by popping wheelies. I must admit, I enjoyed watching her “team” of specialists eat crow while I suddenly went from medically-neglectful-mom to mom-of-the year, who had championed against the odds in defense of her daughter’s abilities.