After months and months of conference calls with doctors, meetings with therapists and the medical supply company, and repeated fights with insurance companies, JB finally has his wheelchair!
When I heard the word “wheelchair” first mentioned a year and a half ago by JB’s team of therapists, I burst into tears.
Carrying an infant or toddler around is normal. But a wheelchair? Isn’t that resigning ourselves to the fact that he may continue being delayed in the long term? Put bluntly: Does getting him a wheelchair mean he’ll never walk?
The answer is NO! JB just needs some assistance, as he’s gaining weight (hooray!) and growing taller. Soon I won’t be able to carry him everywhere, despite my bodybuilder-like physique and my intense arm workouts lifting Oreos from my plate to my milk glass to my mouth. A traditional stroller doesn’t have the head, neck and trunk support JB requires when sitting for long periods of time, such as when we go to a museum or park. (We still use an umbrella stroller for quick errands, however.) As he grows and gets stronger, we will be able to adjust the equipment, giving him the opportunity to rely less on the chair so he can eventually support himself.
The wheelchair may even help him grow stronger and develop more quickly. With less focus on trying to stay upright, JB can instead work on other therapies – vision, speech, feeding, etc. I noticed a big difference even the first time he used it at the library for a therapy session. The chair took care of his positioning, leaving him to focus on his books and toys on his tray!
Kids do not necessarily start out with a tricked-out power wheelchair with all the bells and whistles. Nor do they start with what many would even consider a wheelchair. In JB’s case, it’s more of a stroller – technically an “adaptive stroller”. You may not even realize it’s a wheelchair, since its brightly colored seat, black base and canopy look like any other stroller. (The above photo is a closeup of one of the front wheels of the base.) It even folds up and fits in the back of our SUV. This is good, because I can’t even parallel park a sedan; It would be a disaster if I tried driving a van.
Whether JB uses a wheelchair for only a few years or for the foreseeable future, we want JB to know lots of other kids out there also use special equipment to get around. In a future post, I’ll be sharing some of our family’s favorite fictional characters with physical disabilities. In the meantime, feel free to comment with any questions you may have about JB’s new wheelchair.
Megan, thank you for sharing vulnerably about this step. I’ve learned in my own grief that there are many kinds of losses and grieving our children’s loss is one of the hardest. Because we can’t fix it and isn’t that what parents are meant to do? We can only love them through it, advocate for them (as you’re marvelously doing!) and beg God to lead.