An infant daughter’s death sentence

My two elder sisters: Kathleen and Dierdre

My sister Deirdre turns 60 this month. She wasn’t expected to live longer than five years. Born in 1952, she was the second daughter held by my 21-year old mother, with six children to follow. Right from the start, Dierdre failed to meet the milestones and she looked oddly different, swollen and unfocused. She wasn’t after love.

Off slap-dash to a series of doctors.

And then the truth was revealed.

Mom, Dad, Nana, Kathleen (who was a little over a year old), and Dierdre gathered in the living room of their Anglesy home to absorb the news: Dierdre has severe Down syndrome. “Luck of the draw,” was suggested by these doctors but hopefully not voiced. And then there was the next day, my young mother curled around a non-responsive infant fresh with a haunting diagnosis.

Five years, they told my parents, and then your daughter will die. Maybe earlier, so make your plans and for God’s sake have more babies. But suddenly Dierdre was seven years old and sputtering around the kitchen while our mother prepared to slip the pasta into the pot, angling herself across a regatta of high chairs, tiny limbs reaching toward her from the newest three babies birthed since Dierdre’s news.

Dinner time in a house of small children: pots and pacifiers and squeals beneath crucified Jesus, slanting down from his wooden post above the door frame. My father was due home on the 5:45 commuter train in 20 minutes.

Dierdre pulled the bubbling pot off the burner and onto her small, unsteady self.

Third degree burns spread on her chest, her face, her neck. She still lived.

Dierdre turns 60. Old, old, they say, for a person with Downs. She can no longer walk. Probably can’t see. She has never been able to speak, so language isn’t lost it’s just still absent. She lives in a nursing home with old women who have forgotten their lives and stare vacantly at pictures of people they are said to know.

“Is this my husband,” one woman asks. “He looks like a nice man,” I tell her, twitching a new tune on her radio and returning to my sister.

We live with our memories of each other, our memories of Dierdre and her 21-year old mother and 22-year old father who bore the unfathomable news of their second child’s impending death at five.

When Dierdre dies, I’d like to write her obituary but it will be a fantasy, a series of guesses as to how she lived, what she achieved, whom she loved.  Her three brothers, four sisters, and both her parents are still alive–full lives with travel, work, families of our own, meals in nice restaurants, night school courses, and celebrations.

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About Nor

I'm a creative non-fiction writer, with a special interest in memoirs and obituaries--life stories, local histories with flesh & blood anecdotal details. I'm also beginning to create podcasts of people's stories and expanding their audiences. I'm a diarist, an editor, and a political activist. I live in Toronto, Ontario, Canada and spend days tapping keys or staining my fingers in ink.
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