A Wild Patience Has Taken Me This Far

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Beyond little blue and little yellow...

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If you make it a game, she'll go forever. G is part of a study on kids with CP to increase affected hand use. As part of it, we do 2 hours of bilateral hand activities 5x a week. For 9 weeks. I'm trying to keep things fun and different, so I cut tiny clothes out of fabric scraps and we played "laundry day" - clipping them on to a ribbon with clothespins. When I told her it was time to clean up, she asked when we could play again.

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kindness of strangers

I lost it yesterday in front of my daughter's preschool as I begged her again and again to try one more time to zip her coat. Her eyes and attention wandered, my patience evaporated. I started to cry, she started to cry. A mother walking out with her daughter came over and put her arm around me.

"It's hard," she said, "I know it's so hard. But it's going to be ok, she's going to be ok."

Later that night, as I lay next to her in bed, little G said, "everything is perfect, mama, just the way it is." It isn't, of course, but it made me feel better that she sees it that way.

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Occasionally things slow down enough for me to smile.

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Green-eyed

It's hard for me not to choke on my jealousy as I walk around New York City. I see moms with enough money to stay home with two kids, babies being pushed along by leisurely nannies, and I think about my own harried anxious life. Then I remember that I have observed and considered my child in a way few parents ever do, interacted with her movements and had a hand in her progress, and appreciate each milestone more fully than I ever thought possible. And I realize I'm the lucky one.

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Part of G's routine is to amuse herself with various challenges on the walk home from the subway. This particular one involves holding on to an ironwork fence and scooting herself along a concrete wall. I have no idea what she is imagining as she does it, but I never stop her.

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A Year Later...

So it has been a year. Baby G is 32 months - she is walking and talking constantly and potty training. And she has cerebral palsy. I still can't write or say that without my eyes filling up. I have spent 10+ hours a week traveling to and from therapy, sitting in sessions, dealing with scheduling issues, participating in day-long testing, fighting with insurance, and on and on and on. It's all stolen time - stolen from the few precious hours she has to be a kid, stolen from her father and I as we try to rebuild our lives after divorce while giving our child the world, stolen from the people who live in our universes who must be patient with our frustrations and psychological absences. There are good weeks, bad weeks, and lots of weeks where I am barely getting by. I wish that I could talk to someone who really understands the anxiety and panic and self-blame - every once in a while I meet parents whose children also have special needs, and for a moment there is a sense of kinship before we are pulled off in different directions to fend for ourselves again. This life is not to be envied, and I cycle rapidly through anger, sadness, guilt, resignation, and hopefulness on a weekly basis. I had thought time would bring me some relief - it hasn't. If anything, it has made me more brittle as I wait constantly for a new wrinkle in my already-crumpled existence.

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Reading to stuffed friends during Circle Time.

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Cora's Story

Sometimes when my life seems too hard or too painful to bear, I need to be reminded of the enormity of other people's suffering, the profoundness of their loss, so that I can snap back to the reality where I have so much more than I really even deserve. While I am the first to admit that the Internet can be dark and seedy and banal and a million other undesirable things, it also gives us a place where we can share our stories so that other people can learn from our experiences and take comfort in our survival. And that's amazing.

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My mind is stuck, thinking about her. I looked at some early pictures the other day and tried to remember a time when I wasn't obsessed with what her right hand was doing or how she was moving her foot when she squatted down. It must have been nice, being that carefree. But I'm sure I was obsessed with other things, like daycare or diaper rash. Little did I know...

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According to the MRI, my daughter has damage to the motor cortex as the result of a stroke that happened either perinatally or even during delivery. The rest of her brain looks normal, including the speech center. However, without therapy, she will not overcome the weakness and clumsiness she struggles with on the right side of her body. I'm struggling now to figure out the New York City Early Intervention Program, insurance, other therapeutic and daycare options, a new job, a marriage ending and a new relationship trying to get off the ground...it's all a bit much sometimes. But then I walk into her room in the morning and see her smiling at me. And all at once the sun comes out.

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She woke up ready to leave.

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A wild patience has taken me this far as if I had to bring to shore a boat with a spasmodic outboard motor old sweaters, nets, spray-mottled books tossed in the prow some kind of sun burning my shoulder-blades. Splashing the oarlocks. Burning through. Your fore-arms can get scalded, licked with pain in a sun blotted like unspoken anger behind a casual mist. The length of daylight this far north, in this forty-ninth year of my life is critical. The light is critical: of me, of this long-dreamed, involuntary landing on the arm of an inland sea. The glitter of the shoal depleting into shadow I recognize: the stand of pines violet-black really, green in the old postcard but really I have nothing but myself to go by; nothing stands in the realm of pure necessity except what my hands can hold. Nothing but myself?...My selves. After so long, this answer. As if I had always known I steer the boat in, simply. The motor dying on the pebbles cicadas taking up the hum dropped in the silence. Anger and tenderness: my selves. And now I can believe they breathe in me as angels, not polarities. Anger and tenderness: the spider's genius to spin and weave in the same action from her own body, anywhere -- even from a broken web.

Adrienne Rich "Integrity"

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Hiding somewhere in this beautiful round head is a dark spot that makes her clench her little hand into a fist and stumble over her foot on occasion. It may even be what keeps her tongue from turning sounds into words I can understand. All I can do now is wait for the early morning when sleep drips into my baby's arm and a picture reveals the width and breadth of this sneaky smudge.