“That’s creepy,” he said.
“Yeah.”After a moment, I started to pull away, telling my tired tike that it was time to sleep. He held onto my right arm, the steady one that held the iPhone on which I read. As I draped my misbehaving left arm over his side-lying body, I told him, “My arm may be twitchy but it is still here to hold you.” My seven-year-old nodded and held me closer. “You carry me in your heart so I’m going down the hall to sleep. You come to me if you need me,” I said as he nodded again, this time more slowly.“It’s time to go to sleep,” he mumbled.
“Yes, it is, sweetheart,” I said. “Good night.”
“No, I meant you have to go to sleep,” he said, “I want your arm to stop twitching.”I gave him a final kiss goodnight then continued down the hall to remind his iPod-listening sister – that tween who seems incapable of keeping track of her retainer or closing a drawer – that she too needed sleep. “Okay, Mommy,” she replied as I dimmed the lights so that she could draw herself to sleep on her Boogie Board. “You can come to me if you need me,” I said as the room descended into darkness. “But Daddy said not to wake you up anymore,” she muttered. “It’s okay, he’ll sleep through it,” I murmured, smiling, as I closed her door.
Then I retreated to my bedroom. And, in the quiet of the crisp, California night, with my husband’s snoring giving my typing a metronome-like rhythm, I replayed the bits of the conversations.
“Will your arm shake like that for the rest of your life?”
“I sure as hell hope that’s all it does. But I don’t know – nor does anyone really – the fate of the dopamine producing cells in my substantia nigra that dictate the progression of my disease.”
“That’s creepy,” he said. “No, shit, Sherlock. You think it’s creepy to YOU? I can’t tell you how fucking bizarre it is not to be able to hold my own limb steady.”
“You carry me in your heart so I’m going down the hall to sleep. You come to me if you need me.” Because I hope to love you well enough while I’m around, whether I’m twitchy or steady, that I will leave you with a full heart when my time to stop twitching comes.
“It’s time to go to sleep.”
“Yes, it is, sweetheart, good night.”
“No, I meant you have to go to sleep. I want your arm to stop twitching.”
A tear serpentines down my cheek. I don’t want to be the parent whose child has to worry about her. I am the parent. I am the caretaker – PD will not change this, I vow to my cup of tea.
“But Daddy said not to wake you up,” she muttered. “It’s okay, he’ll sleep through it.” Yes, the neuro-protective quality of sleep makes my husband pressure our daughter to embrace a level of independence for which she is not ready – at night. I don’t want to be the parent whose child has to worry about her. I am the Mom – and mothering is sometimes needed when most of the world rests. Catnaps are neuro-protective too. And I believe that the protocols I am following will help preserve my more-important-than-I-realized dopamine cells. I chose optimism. I chose hope. I’m convinced the pills I’m popping are going to stave off my further decline and that there will be something to help me more by the time I may need it. I may be wrong, ignorant, naive but fuck it – it’s what I believe – at least for now.
And then it is time for me to put myself to bed. The knowledge that my children are safe, that my husband slumbers lovingly beside me combines with the understanding that my doctors are top notch and that there is a caring community that keeps me in their thoughts and prayers. And together these thoughts lull me to neuro-protective sleep. Thank you and good night.