Special Needs Mama
- Vicki Forman writes a column about being a mom of a special needs
child. This month it's about celebrating the holidays:
- I thought you might enjoy this article from another Special Needs
Mama, Vicki Foreman. Sarah
Special Needs Mama
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
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.
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.