For many, it’s a simple thing, going to sleep at the end of a day. For me it runs to the difficult side. I sleep with my special needs daughter to keep watch over her through the night. She’s often troubled by discomfort or becomes tangled in sheets and blankets. Sometimes, her arms and legs get caught on or under each other and she can’t sort them out. She may suffer reflux or other problems that need attention. We learned years ago that guarding her sleep reduces seizures to the point of eliminating them. It’s a tough investment that we think is better than the many unfortunate alternatives, including having to spend all night trying to resolve problems that have gone undetected until she erupts in fits of pain, crying–sometimes screaming. I think it’s fair to say that if we’d left her alone in bed all these years, she might have suffered a dangerous accident without our being aware until it was too late.
Every night, we go through the same ritual. We put on Priscilla Herdman’s music DVD Stardreamer for her, turning the balance control ’til the music hums from the speaker on her side of the room. I get into bed. Her dad comes in and we speak the ceremonial words: “Good night,” “I love you,” “Can you say ‘Goodnight’ to Daddy?” My daughter lets him know when she wants to go to sleep. Just before or just after he leaves, she utters to me a two-syllable sound that varies in coherence. Sometimes it’s just those two, softly hooted syllables, hinged by a sound that seems like a combination between a glottal and nasal stop. Sometimes it takes the shape of a querying word: “cuh-gul?”, “cuhgd-duhl?”
By the time we get to bed, I’m usually worn out. I just want to go to sleep. Sliding across the bed to tuck her knees up on my thigh and spread my left hand over her chest is just plain troublesome. And that isn’t enough. Usually, she wants my other hand on her, too, uttering her cuddle call until I relent. “You want me to cuddle more?” I ask. She hoots a soft yes. My hands together have an 18-inch span. Despite her age–nearly 21 years old–she’s very small, an effect of her microcephaly–reduced cranial size resultant of a severe, prenatal brain injury. My hands spread across her chest and upper abdomen and wrap around her sides.
Lately, despite rumbling hunger pangs for sleep, I’ve started paying more attention to what happens when I lay my hands on her, sometimes long enough that, beneath them, she falls asleep. I’m teaching myself to become more aware of and involved in the sensations of feeling my hands lift with the expansion of her one functioning lung when she inhales then lower again when her breath slides out. I get wrapped up in the rapid fluttering of what I call her butterfly heart against my left palm, straining to hear and feel my own slower heart beat in concert. I wonder over her misshapen rib cage, torqued by scoliosis, the sternum pressed upward, her skin stretched tight and thin across it like a hide over a drum. My still hands learn the shape and measure of it, resting and open, palms down, on the height of that upward curve. I compare the movements of my own breathings with hers. Through my hands, I feel other movements, murmurs, and gurglings in her abdomen.
Sometimes she grunts to let me know she’s done with the ritual–she’s ready to fall asleep and wants her space. Cuddle over. In recent past, that moment came as a relief as I unbent and rearranged my body into more comfortable shapes. Sometimes, I lost patience, pulled away, and told her, “Go to sleep.”
That’s changed. Sometimes, through my hands, I feel her relax into the foam topper we’ve put on the bed to make it more comfortable for her bone-jammed body. Her breath acquires soft, near regular depth, becoming rhythmic and peaceable. She sinks into sleep. Then I slowly lift away my hands and squirm back to my side of the bed, where I savor the sensations she’s given rise to in me. Sleep wells up then, not as abrupt relief from exhaustion, like the wind’s slamming a door between the world and my worn-thin senses. It comes more peacefully, like the slow glide of late evening into dusk, into night, complete with sunset displays of dreams. Going to bed still takes work, but the effort’s effects have become less oppressive and more revelatory.
The literally tiresome ritual is becoming, for me, a final, pre-sleep act of wondering over another deep layer of my life, another engagement in the mysteries. It exposes an added layer to the stratigraphy of connectedness and its ever-increasing expanse, linking up, diving then resurfacing elsewhere in our lives. There’s no end to the wilderness we call life. It changes even as we fix a gaze on it, taking the gaze with it, so that our seeing becomes part of the changing. The world gives rise to something new.
That first twenty minutes or so of bedtime is now a looked-for meeting time with Something Else as I place my hands on my little, living seer stone. We shouldn’t label them “special needs children”–unless we mean that they can meet and provide for our special needs. I’ve said this before, but I keep learning it, over and over, in new forms: The limitations here are not hers, and they’re not the developmentally delayed conditions of hundreds of thousands or millions of children like her. Those delays in development are ours–they belong to the rest of us who lie near to these souls yet are incapable of seeing through the windows they open, we who draw the curtains and put space between them and us because, we think, they ask too much of us. It’s too hard. It’s too late. We just want sleep. Like any profound question, they do ask too much, over and over. Cuddle? Cuddle? Cuddle? We are the ones who often fall short of intimate response. Even when my daughter is falling asleep, she catches me up.
A few days ago a 20-something Navajo student named Danielle Yazzie brought in her annotated bibliography for my review. Clearly, she felt passionately about her topic–special education, how the public school system treats special needs children, and how special needs categories have changed over the last 50 years. She couldn’t help but put in her own heartfelt views–not exactly appropriate for a bibliography. I tried to guide her away from that, just so she could meet the requirements for the assignment. I suggested that she save those thoughts for her essay.
But at the end of the bibliography she included a personal annotation that I decided to leave in place. This is what she said: “To me, the category gifted and talented students includes disabled students because they offer so much insight into the world around us.” A spectacular perception from such a young woman. I said I agreed and looked at her dark eyes. There was no exchange of secret acknowledgement of the sort that those of us who are mothers to brain variable children sometimes flash to each other. This bright girl, not a mother herself, took her truth completely in stride.
So maybe we are catching up, moving past the edges of our limitations. Maybe we’re becoming caught up. And these kids are spurring our development, enabling breakthroughs. Teaching us to walk with better balance, speak ourselves more fully, become more involved in this world. Maybe they’re moving us past ourselves to deeper meaning and more fully realized life.
I live with a cutting edge being. This cutting edge person wants me to cuddle with her. Hands down I am the luckiest unlucky person I know.
To see Patricia’s bio and other work, go here, here, here, and lots of other places, including WIZ’s sister blog, A Motley Vision.
Quote from Danielle Yazzie used with her permission.
Edited 2/21/2012 at 9:52 a.m.