It's a bit more lengthly than the average blog post, but please if you have the time, read it. It's very dear to my heart, if I may say that without sounding too cliche.
Twenty-one
The tears drip down my cheeks and I look at Fran. I'm only 11, but I know she's different. her eyes are a bit far apart, the bridge of her nose is a little flat and there's a gap between her big and index toes that is bigger than the gap between my own. She's round and her skin is dusted pink, her blond hair rigidly framing her face.
My mom says Fran is a "Downs baby," and my aunt has tried to explain it, but the words mean very little at the time.
* * *
Years later I'm sitting in my Grade 12 biology class, with the scent of formaldehyde in the air and jars of fetal pigs resting on the shelves, learning about human reproduction - about chromosome 21. I read that upon conception a fetus inherits 23 chromosomes from both its mother and father for a total of 46. However, an extra chromosome 21 results in a child having Down Syndrome (DS). The text explains in a slew of medical language some DS features: slow development, congenial heart defects, problems with hearing and vision. I read and re-read the content, dumbfounded; how could it be that the only thing separating Fran from me is an extra 21?
It seemed like such a miniscule difference, and it was, for five months following Fran's birth. We didn't know she had it.
* * *
It's mid-afternoon March 1996 and Paula's contractions - three weeks premature - are creeping closer together. Daryl is driving the pickup truck 100 km/h down the straight road to Edmonton. Paula lies in the truck cab, her head resting on Daryl's lap and her feet in the air bolstered up against the truck door.
"Do you want to stop here?" Daryl asks as they drive through town after town. But Paula is determined to have this baby the way she planned - natural, and not in a hospital. They drive five hours, Paula breathing hee's and ho's before finally reaching their midwife.
My aunt never had any ultralsounds during her pregnancy. If she had, the doctors would have been able to detect that Fran had a disability. After Fran was born, they travelled and visited family. My aunt's sister commented that Fran felt a bit "floppy" when she held her (children with DS have a low muscle tone), but there was never any mention of Down syndrome. None of us recognized it in Fran.
My aunt and uncle visited their family doctor after their travels and it was only then that they knew. In the 1960s doctors often suggested that parents who have a child with DS give that child up for adoption, or send them to an institution. But when the doctor told them that Fran had DS, they looked at her cooing on the doctor's examination table. She smiled back at them.
They couldn't give her up.
* * *
Eleven years later I'm sitting on the back deck at my aunt's and we've just eaten dinner with the family. The hairs on my arm are bristled but I can still feel the sun's remaining rays warming my skin. My parents are inside; I can hear their faint conversation through the screen.
Fran walks out and plops down beside me, sighing. Her brother and sister crunch through the leaves that have fallen from the trees.
"Guess what?" she asks suddenly, braces crowding her tiny mouth.
"What, Fran?"
"I got my period. That means I'm a woman. But my mom says that I can only talk to girls about it, not boys." She is so excited about the prospect of growing up that her words run together. I put my arm around her tiny back and tell her that it's all a part of growing up, that she can talk to me about it any time she likes. We sit barefoot, our feet resting on the weather-beaten wood and hers touching the side of mine, cold. The sun has fallen behind the mountains but I still feel warm.
* * *
That warmth I often feel with Fran froze with a snowstorm one morning when, a few months later in January, I took Fran skiing. My aunt and Uncle wanted to spent the morning with their two younger kids on the higher ski runs and had enrolled Fran in ski-school. I signed on to be her helper, watching over her as she participated with the other snowflakes on skis.
The sky is dark, as if someone had forgot to change a dying light bulb that was now flickering to black. The snow, usually light and fluffy, is damp and soaks straight into my jacket, as though it were a sponge. Some kids wear plastic ponchos over their suits. But Fran, dressed in a retro purple and pink snowsuit, is ready to challenge the cheerless weather. For the duration of the morning I follow behind her as she snowplows down the mountainside.
"Slow down, Fran," I yell to her as she whips around a ski trail without yielding. She ignores me, pushing faster down the kill, a cackle escaping her mouth as if to say, nana nana boo boo, you can't catch me.
But her euphoric outlook freezes with the snow when, less than an hour later, she no longer wants to participate. She isn't going to wear her ski-school bib. She won't follow the ski instructor like the other kids. She hates her goggles and throws them to the ground and she howls on the busy run as skiers and snowboarders race by, staring. My cheeks, which had been rosy-pink from the cold air and snow, now flushed hot like embers in a fire.
Most children throw temper tantrums, stomp on the ground and slam bedroom doors. But this sort of behaviour isn't a tantrum. It's stubbornness, a refusal to do anything that might make the situation better, and it's a common reaction that children with DS have. Calm - only four letters, but sometimes hard to spell with Fran.
I drive home that afternoon, tear off my sopping-wet clothes and hang them in the furnace room. I surge upstairs and when my mom asks how my day was with Fran, I tell her I don't want to talk about it.
* * *
I'm walking up the front steps to knock on my aunt and uncle's door. It's the beginning of September and the leaves on the trees in the front yard are just beginning to change colour. I've stopped in with my boyfriend to visit them before I continue on to my last year of university.
"Hi guys, welcome to my home," Fran says. "See my grand piano?" Then, for a brief moment, she lets go of her knowledge of adolescence, of maturity, and plunges into me, wrapping her arms around my waist. She pushes her thick prescription glasses onto her face when they fall down the bridge of her nose and takes my hand, pulling me inside. She's developed curves and wears a bra; she's 14. She isn't a "Downs baby" anymore.
Fran is eager to show me her room. She opens the wood door and I walk into a palace of pink. A floral canopy hangs over her bed; there's a portrait of a unicorn framed on the wall, and a stuffed plush horse lies on the comforter. Her room and her mind house multitudes of make-believe. She tells me that she loves Sleeping Beauty and right now she's dating Prince Phillip. She knows it's not real, but that doesn't matter.
"I'm a princess in my heart right now," she says.
