My Daughter Isn’t Able To Speak, Walk Or Feed Herself – And We May Never Know Why

“She’d had a normal birth and what looked like a normal early infancy.”

Sometimes, when he walks past Millie, he just hums the riff – ba-bum ba-bum ba-bum ba-bum – and the simple rhythm sung out loud makes her explode with laughter. I remarried a year ago, and Millie hasn’t known my husband long. But she still gets the joke.

Millie is 25 years old. She doesn’t walk on her own, or feed herself, or communicate with signs or symbols. Yet she lives along with the rest of us in a world of patterns and predictions, a world in which we wait for “tock” when we hear “tick”.

“The sense of an ending:” that’s what the literary theorist Frank Kermode called this most human of tendencies; he argued that it was the elementary structure of every story. Even though Millie can’t tell a story, or to my knowledge, understand one, she shares this sensibility. She lives knowingly in music, at play in the interval between beginnings and ends.

The most profound of beginnings and ends are those marking the opening and closing of a life. Our children die. But we act like they’ll live forever. We’re the ancestors; they’re the descendants – that’s how kinship is supposed to work.

It’s different when our children are profoundly disabled. Their lives are fragile and wondrous. Their life expectancy is more than a statistic; it’s a fact to reckon with. The longer you’ve loved them, the more it overshadows your days.

Millie is undiagnosed. Which means many things. Among them is the fact that I have no idea how long she will live.

Millie was 10 months old when the extent of her disabilities became evident. She’d had a normal birth and what looked like a normal early infancy, before missing all the developmental milestones.

No smiling, rolling, sitting, crawling. No babbling, looking into my eyes, or following my gaze. Our first geneticist tested her for the usual suspects: Rett Syndrome, Angelman Syndrome, plus some metabolic disorders. The lab techs sequenced, and sequenced again, but ruled all these conditions out.

This came as a blow, because Millie’s father and I wanted a road map. Back then, we were still thinking like most new........

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