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Special Needs Mama

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  • patsarah2006
    Vicki Forman writes a column about being a mom of a special needs child. This month it s about celebrating the holidays:
    Message 1 of 2 , Dec 13, 2007
      Vicki Forman writes a column about being a mom of a special needs
      child. This month it's about celebrating the holidays:
      http://www.literarymama.com/columns/specialneedsmama/
    • patsarah2006
      I thought you might enjoy this article from another Special Needs Mama, Vicki Foreman. Sarah Special Needs Mama Taking Care By Vicki Forman There is a whole
      Message 2 of 2 , Feb 5, 2008
        I thought you might enjoy this article from another Special Needs
        Mama, Vicki Foreman. Sarah

        Special Needs Mama
        Taking Care
        By Vicki Forman

        There is a whole host of people who take care of my son: his
        incomparable nanny, Gloria; two aides, ten therapists, three
        teachers; a pediatrician, a surgeon and six other specialists who
        oversee his eyes, heart, lungs, and brain; the provider who
        coordinates his social services; and the agency that sends us Gloria.
        The list goes on and on, and each Christmas I find myself remembering
        yet another generous soul who has contributed that year to caring for
        my son. A child like Evan can't get through a moment of his day
        without someone at his side, guiding him, helping him to eat or to
        use his communication devices, zipping up his jacket, and getting him
        on and off the swings. I dream of the day Evan can do it all by
        himself, but for now, due to his needs, he's a boy with constant
        companionship, and never-ending care.

        When my daughter was born, I learned, as a first-time mother, just
        how all-encompassing the caretaking of motherhood could be. A friend,
        watching me breastfeed Josie as an infant, said to me, "I can't
        believe it. Everything she is right now at this very moment has to do
        with you. Your body grew her, now your body is feeding her. It's
        incredible." Indeed, my daughter's health, comfort, safety,
        happiness -- so much of it -- had more or less to do with me, and her
        father, of course.

        And yet, as my daughter grew up, began to walk and talk and see to
        her own needs over time, the caretaking diminished. Soon enough she
        could dress herself, brush her own teeth, and make herself a snack.
        Not so Evan. With Evan, I have learned a different kind of
        caretaking, one that seems to come with a deeper vigilance. With my
        daughter I will always worry, but with Evan there is always more
        work, and constant concerns. He's not the kid I send off to school in
        the morning and catch up with at the end of the day or when he comes
        home. Instead, I wonder about his day: the interventions and
        instruction, the progress or not, the good mood or bad. When he's not
        home, I'm writing about him, or making calls about his therapy or
        care, or scheduling appointments with doctors, dentists, and
        hospitals. It's not a job that ends when he's in bed, or off at
        school.

        ~

        Because of all the caretaking I do, over the years I have also had to
        learn the art of taking care of myself. It wasn't easy at first,
        listening to all the encouragement -- "Take a break, give yourself a
        rest, spend the day doing nothing." My first trip out of town after
        Evan was born happened to coincide with a severe setback of his in
        the NICU. "Go, go," the nurse said, literally pushing me out the
        door. "You can't do anything for him here. Go!" I called the hospital
        five times a day during that trip, and didn't schedule another until
        Evan was safely home. It seemed like a hidden message. If I were to
        leave, and stop taking care, things would not turn out well.

        When Evan was in the hospital the caretaking took on a kind of
        vigilance unlike anything I had ever known in the years of caring for
        my daughter. Sure, I was always careful to keep a close eye on my
        daughter; my fears for her safety were palpable from the start. When
        she was a newborn, I awoke to her smallest cry. But with Evan, the
        vigilance took on epic proportions. If I didn't learn how to change
        his two-inch square diaper, who would? To relieve myself, even for a
        moment, of duty, felt like life and death, and in a way it was. "He
        seemed to get worse when we lowered the steroids," I remember telling
        a doctor about that same setback. "What if we increase them again?"
        Indeed, a day later the crisis had abated, my son's breathing had
        improved and it looked like he'd pull through.

        Amidst all that vigilance and hard work, I did learn to take a break -
        - a day off from my hospital visits, or a night out with my husband.
        Lunch with a friend, a movie by myself. As Evan's caretaking has
        evolved, so too has my own ability to pull back, and away. This
        happens when I hand my son over to his teachers, therapists and
        aides, allowing them to step into the essential moments of care.

        With my vigilance eased, I've been able to reconsider my own care as
        well. Sometimes it feels selfish to read a book or watch a movie,
        knowing all that Evan still needs. I should get out the braille
        books, or teach him how to button, zip and snap. I should play
        pattycake and sing, "Row, row, row your boat." Like any mother I feel
        guilty about all I neglect. And yet, if I allow myself, I also see
        how all the care we have taken -- me, his father, glorious Gloria,
        ten teachers, two aides, half a dozen medical specialists and more --
        is on display right there, in Evan himself. He is happy, healthy,
        loved. He's learning and growing. These truths permit me the luxury
        of taking a break, the other side of taking care.

        Comments (6)

        Vicki Forman teaches creative writing at the University of Southern
        California. Her work has been nominated for a Pushcart and has
        appeared in Seneca Review, and Santa Monica Review, plus the
        anthologies This Day: Diaries from American Women, The Spirit of
        Pregnancy : An Interactive Anthology for Your Journey to Motherhood,
        and Literary Mama: Reading for the Maternally Inclined. She lives in
        Southern California with her husband and two children, one of whom is
        multiply-disabled. You can contact her at vlforman(@)gmail.com.
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