Excerpt: I Don’t Do Disability And Other Lies I’ve Told Myself by Adelle Purdham

Excerpted with permission from Dundurn Press

“Three, Two, One”

“What do you want me to write?” I ask the editor.
“What is it you need to say?” the editor says without saying it.
Essay. J’essai. I try to form the words.
Maybe if I snap my fingers, this piece will write itself, easy as
one, two, three.

One
It’s 2:00 a.m. and I wake with the sensation of having to pee. Our
bed, with its deluxe pillowtop, is plush and high, thanks to my
dad’s career as a mattress salesman. At thirty-­ eight weeks preg-
nant, I had experienced mild contractions earlier in the day, when
my husband, Dan, and I picked up the groceries and walked our
friends’ dog, but by evening — silence. As I slide my legs out of bed
to the floor, there’s a distinct pop, followed by the telltale gush of
warm fluid.
I wake Dan up, and the minutes tick by as labour progresses and
the pain increases with each contraction tearing through my body. I
pace the hardwood floors of our living room, then stand with both
hands on the back of our brown faux-­ leather couch and think, I
don’t want to do this anymore.
Too late.
The pain amps up to a ten on the suffer scale; meanwhile, quickly, efficiently, my body is
willing this baby out. On the fifteen-minute
ride to the hospital, my bottom never touches the seat. I
writhe through the contractions, wild-­ eyed, as Dan grips the steering wheel tightly with
both hands.
I arrive at the hospital ten centimetres dilated. No time for pain
relief; no need for medical intervention. I push for half an hour, and
then at 4:36 a.m. — two hours after I slid out of bed and my water
broke — our eldest daughter is born. We name her Ariel Marie in
tribute to my matriarchal lineage, my Grandma Marie who gave me
my love for tea and the garden’s bounty. Ariel latches beautifully
and takes to breastfeeding right away. A five out of five Apgar score;
her heart rate is steady, muscle tone and reflexes strong, overall
health good. Textbook, perfect.
We leave the hospital, babe in arms, by 4:30 p.m. the same day.
This part of the story is easy to write. In society’s eyes, a twenty-seven-­
year-­ old woman giving birth feels right, normal.

*

I should listen to my editor. “We generally tend toward personal narrative that avoids editorializing too much.”

*

Two

Nine-­ month-­ old Ariel blows raspberries onto the mirror of our bedroom closet. Around
this age, babies begin to establish their sense of
self as separate from their caregivers, and Ariel’s delighted to have
found her person on the other side of the glass.
A few months earlier, Dan and I talked about having a second
child, a sibling for Ariel. We wanted to wait until she was a year old
before we tried again, to give ourselves a chance to catch our breath.
In the meantime, my birth control pills ran out.
To a symphony of squashing sounds and farting noises made
with baby saliva, I hold up the pregnancy test. The faint line means
only one thing — positive.

Dan arrives home with flowers and a card that reads “Special
Delivery” and “It’s a Girl!” “It’s a Girl” is an inside joke between
us, something about Dan always knowing he’d be surrounded by
women; “Special Delivery” is a prescient misnomer.

*

“Allow the story to do the heavy lifting,” the editor tells me.
Yes, I’d prefer it that way.

*

After my twenty-­ week ultrasound, there’s a message from the mid-
wife on our home phone.
Dan listens to the message. “She says to call her?”
There’s a question in his voice.
That’s odd, I think. There was never any follow-­ up after my
twenty-­ week ultrasound with Ariel.
I lean onto our brown faux-­ leather couch with one knee and
look out our large bay window at the trees thrashing in the wind,
their leaves catching light from the sun. I tuck my newly cropped
hair behind my ear, a sure sign of my mother-­ ness, and call the
midwife back.
“The results from your twenty-­ week ultrasound are in,” she says
slowly, choosing her words, “and they show a soft marker for Down
syndrome.”
Down syndrome?
I say the words out loud. Dan’s eyes burn on the back of my
neck from across the room, where he’s building a block tower with
Ariel.

The tower comes down with a crash. Ariel squeals with delight.

*

“We’re interested in precision,” the editor says. “The selection of just
the right word that saves the writer the need to add another sentence.”

*

Before the certainty of a diagnosis, instead of being paralyzed with
fear of the unknown, I blocked the questions from my mind. I spent
those days of waiting caring for Ariel, who was barely fifteen months
old. Our lives continued with a semblance of normalcy — what
choice did I have? I would pack books and a picnic of snacks in her
ladybug backpack, and we would read together under the shade of the
large black walnut tree that covered a section of our backyard. The
sun shone magnificently overhead, its rays poking delicately through
the leaves. There were the sharp blades of grass, and the smell of
freshly cut lawns. Ariel’s glowing, soft wisps of hair. Our lives had
been crisp and clear. Ariel sat neatly enfolded in my lap, focused
and peaceful, carefully letting the pages of her book unfold, and I
thought, blinking back the tears, will it be like this again?

Two weeks later, after a blood test and a repeat ultrasound,
we know for certain. I find the leather couch, curl onto my side
and pull my knees in as tight as my pregnant belly will allow, and
wail. I cry because I never wanted a baby with Down syndrome.
I cry over this new identity being foisted on me as a mother. I cry
for hours, and then cry at my crying in the first place. What will
people think?

I invite Dan into my grieving, and we are two mounds of wet
clay, one pile of mush trying to hold the other pile of mush together,
to no avail. I push him away and slam my fists into the cushions and
then the pillows of our bed, then cry myself into an exhausted sleep.