My son, August, has a number of quirks that distinguish him from the typically developing 10-year-old. He lives with cerebral palsy, is a spastic quadriplegic, has cortical visual impairment (meaning he is legally blind), is completely nonverbal and cognitively disabled, has a microcephalic head, and must wear a diaper. Moreover, he is immobile—he can’t crawl or scoot around or hold himself up or even sit in a chair without being strapped in it. If someone were to put him on the floor and leave him there, he would be in the same location hours later, give or take a foot.
At home, in the eyes of my wife, Ilene; our 7-year-old daughter, Clio; and me, he seems merely a little eccentric, possessor of a few odd quirks, as I said. We don’t think of him as being different; he is August, just another member of an already quirky family. Although he cannot play with his sister, she loves him. Without being prompted, she recently made pipe-cleaner wheelchairs for her dolls and rendered her wooden doll house ADA-compliant by retrofitting it with ramps. Now the dolls wheel freely in and out. For family bike rides, we have a specially built bicycle with a Tumble Forms chair attached to the front for him to ride in. I feed August his meals (he cannot feed himself), change his diapers, place him in the supersize jogger when I go running, and put him to bed. He and I have a good relationship: He laughs at my attempts at humor, which consist of making odd sounds or putting him face-up on the rug, holding his feet and legs up high, and rocking him swiftly back and forth. He seems to enjoy my company, and I most certainly enjoy his.
Update: A friend writes:
I just read the essay written by the father of the severely disabled child you posted. It was remarkable, but not because the parents are unusual heroes or anything. We both know lots of people like them that have raised such children and done so cheerfully. I thought it was remarkable because it was sort of an intellectual lefty’s Paulist experience – scales falling from his eyes. Yet it seems as if the guy is still mocking God in a sense. It is nice to see that such a semi-conversion is possible, but it seems like the guy still has a long way to go. It was as tortured an intellectual journey as you will read – as it is clear that he resists the religious explanations for what he and his son and family have to bear.