Back in March, we gave a talk on Namine’s accessibility needs outside the hospital to a biomechanical engineering class at Marquette. That was organized through a Children’s Hospital employee who works in the Complex Care department. She asked us if we’d be willing to give the same talk again; we said we’d absolutely be willing to.
Although we’d be giving what was essentially the same talk, we had a completely different audience. At Marquette, we spoke to engineering students. When all was said and done, they’d be building accessibility devices meant to better the lives of disabled individuals. This class at CHW, however, was comprised of medical and pharmaceutical students. They didn’t need to keep accessibility in mind, so much as how a patient’s life goes on outside the hospital.
With that in mind, we revisited the slides we’d put together. We added a few things we’d left out the first time: the slide my aunt made so Namine could climb onto the couch; Namine’s participation in baseball, basketball, and dance; converting Namine’s closet into an accessible one; and our considerations for getting a car that Namine could get into by herself.
The Complex Care program at Children’s Hospital of Wisconsin is fairly new; it’s only 12 or so years old. (Namine herself is 9.) The doctor who started it, Dr. Gordon, retired a short time ago, leaving it in the capable hands of Dr. Cordon. The program currently follows over 600 children, and not passively — they routinely check up on children, even those who have not been in the hospital for years, like Namine, whose last non-ER hospital stay was back in 2013 for the Fontan (the third in a three-stage heart defect repair).
Jessica and I have always been open and forthcoming about our life as the parents of a child with special needs. We’re willing to discuss the difficult things in the interest of improving the lives of parents and children. Things won’t get better for special needs families unless we, all of us, are willing to talk about it.