The diagnosis stalked us for two years before it stepped into the light one warm March morning.
“Dads, I hate calling it cerebral palsy,” our daughter’s pediatric neurologist told us on the phone, “because it sends parents down a spiral, picturing the most severe cases. But Josephine has a mild form of spastic hemiplegia, a condition under the broader umbrella of CP.”
For most of the past two years, we had been in active “wait and see.” She has been in weekly physical therapy and occupational therapy, she went through a bout of ankle braces, and she has seen an array of specialists. But there could be many things accounting for her developmental delays, and a CP diagnosis is not so much a clear “a-ha” resulting from a single test as much as it is a collection of clues neurologists gather to make an informed diagnosis.
I didn’t want life for my little girl to be any harder, any meaner, or any more cruel than it had to be.
And then, in a moment, an echo of my own parents’ concerns for me as a young man rang softly. I came out to my father on a ride to the hardware store one Saturday morning in 2001 when I was 24 years old. My dad told me he loved me but that he was worried for me. He didn’t want me to be limited in my career, to end up alone, or to be harmed. This was the time when discrimination against gay people in the workplace was perfectly legal, and where civil unions, let alone marriages, weren’t even possible. This was shortly after Matthew Shepherd had been brutally murdered. My father’s fear for my struggle and ostracization and pain was palpable.
Anakinra is expensive — on average, private health plans pay about $4,000 a month for it — so we needed to get approval before it would be covered....