Every night is the same. At 3 a.m., I wake in panic, my heart pounding. Is she awake" What?s that sound" Is she smashing her head against the wall again"
I haven?t slept for eight hours straight in 12 years, and it?s not because I have three young kids (Oliver, 12, Charlie 10, and Marlowe, 7). Marlowe has a rare neurogenetic disorder called Angelman Syndrome. She has a biological sleep disorder, experiences seizures almost every day and is globally delayed. She can?t speak (which is extremely frustrating because, like most seven year olds, she has a lot to say), so she bangs her head because it gets an immediate response. In a twisted way, it?s quite smart.
I stumble down the hall to her room. When she sees me, she stops. In the half dark, a smile spreads across her face. A beatific, heart-crushing smile. One of the few upsides of Angelman?s is that, as the name suggests, kids who have it tend to exhibit an inherent sweetness. It?s a neurological byproduct, but with Marlowe, it?s also who she is. My sweet, cuddly, exhausting, relentlessly needy, eternally innocent girl. She holds out her arms, but I stop myself from crawling in beside her. I refill her water bottle, tell her it?s bedtime and say goodnight. I return to my bed, and we both toss and turn until daylight. Her sleep disorder has become my own. Mornings have always been the hardest part of my day. Just getting the kids out the door and off to school or day camp was a victory. But now, they never lea...