I think people often want to open a conversation but aren't sure how to broach it. Without offending you. And they genuinely do think you are amazing. And wonder how they would cope if it was them in your situation. Someone posted this to group I'm on. I think it says it much better than I could ever hope to.
The Mother at the Swings
by Vicki Forman
It's a Sunday afternoon. My nine-year-old daughter Josie is at home drawing
cartoons with my husband and I'm swinging my six-year-old son Evan at the
park. Evan laughs and giggles and with each wide arc of the swing, his smile
grows ever larger. The mother next to me smiles herself and says, "Boy, he
really loves that, doesn't he? I mean, kids just love to swing, don't they?"
Yes, I think, kids do love to swing. But the reason my son loves to swing
isn't the same reason her daughter, in the swing next to us, loves to swing.
My son loves to swing because he is blind and non-verbal, because he has
what is termed "sensory integration dysfunction" and requires enhanced
"vestibular input." Swinging gives my son the kind of stimulation other
kids, those who can see and talk and run and ride a bike, get by simply
being and doing.
And, yes, he also loves to swing because all children love to swing.
I smile back at this mother and I swing Evan higher and he laughs louder,
his squeals of delight growing bigger with every push.
"He really loves to go high," the mother at the swings says. "He's not
afraid at all."
"He's not afraid because he can't see," I say. "He has no idea how high he's
swinging."
"Well, he must have other ways of knowing," she says. "Because he definitely
loves it."
My son was born at twenty-three weeks gestation, weighing only a pound. His
twin sister died four days after birth when we removed her from life
support. Evan was hospitalized for six months and came home blind, with
feeding difficulties, chronic lung disease and global developmental delays.
Soon after that, he developed a serious seizure disorder and was on
medication until his fourth birthday. He did not walk until he was five,
still does not eat anything other than pureed baby food and formula from a
cup, and has only a word or two variations on "muh muh" which he uses
indiscriminately for "more" or "mama" or "open."
I have watched my friends' newborns become toddlers and school-age children
who can walk and laugh and talk and read, all while my son continues to
function at the level of a two-year-old.
And yes, he has a beautiful laugh and a beautiful smile which grow only
louder and wider on the swings.
When Evan was still in the hospital, a social worker gave us a handout, a
road map for the potential reactions of friends and family members to our
new status as parents of a super preemie. Potential support people came
divided, according to the handouts, into the following categories: the
rocks, the wanna-be-theres, and the gingerbread men. It warned us that
people we might think were "rocks" could unexpectedly turn out to be
"gingerbread men." Just like the story, they run, run as fast as they can
from you when they hear of your baby's birth.
I quickly found that the guide was right, that I was supported by only one
or two rocks, and that the rest of my friends and family members had become
gingerbread men. As Evan's disabilities became more obvious, after he left
the hospital and in the time that followed, I found new rocks and said
goodbye to the gingerbread men. And I found a new category for the
characters in the social worker's handout: the mother at the swings.
The mother at the swings wants to know. It's why she makes her observations,
and why she pretends there is nothing different, nothing dissimilar about
her child and mine. All kids love to swing.
The mother at the swings would like for me to tell her what it's like, how
my son is different, and how he is the same. She wants to know about the
cane he uses, and the challenges of having a non-verbal child, and how I
manage to understand my son and communicate.
She'd like to ask, What does his future look like? And How are you with all
this?
She wants to know but she doesn't know how to ask. And so she tells me that
all kids love to swing.
It has taken me years to know what to say to the mother at the swings, and
how to say it. To reveal the truth, graciously. To let her in and help her
understand. To tell her that yes, all children love to swing, and my son
loves to swing and the reasons are both the same and different. That it's
hard to watch her daughter, with her indelible eye contact and winning
smile, and not mourn for what my son can't do. That some days my grief over
my son is stronger than my love.
It has taken me even longer to appreciate the mother at the swings, to know
that she and I have more in common than I once thought. To know that her
curiosity is a mother's curiosity, one borne out of love and tenderness and
a desire to understand a child, my son, one who happens to be different.
That she will listen and sympathize when I offer my observations. That her
compassion and thoughtfulness mean she will take the knowledge I share and
use it to understand other mothers like myself, some of whom could be her
neighbor, her cousin, her sister, her friend. And, finally, that she wants
to know so that she can teach her own child, who also loves to swing, how to
embrace and treasure what makes us all different. And the same.
Vicki Forman teaches creative writing at the University of Southern
California. Her work has been nominated for a Pushcart and has appeared in
the Seneca Review and the Santa Monica
Review , as well as the anthologies, Love
You to
Pieces: Creative Writers on Raising a Child With Special Needs, This
Day:
Dairies From American Women, The
Spirit
of Pregnancy 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 vickiforman(@)gmail.com or visit her
blog.