There was only one person who had Down Syndrome in the town where I grew up. His name was Brian and he lived with his family near my high school. Our paths didn’t cross much but when they did, I never knew what to say or how to act around him. Fear of saying the wrong thing usually prevented me from saying anything at all.
I had few opportunities to spend time with people like Brian in my twenties. My discomfort remained intact and unchallenged; a lump in my throat I knew was there but had done nothing to budge. In that sense, I suppose shame was where this work began. That lump in my throat seemed an uncomfortably honest place to start.
I mentioned the idea to my Aunt and she suggested I call her cousin Lois to discuss the possibility of a project with her daughter, Alyssa. And so it began.
And Holland Has Tulips is multimedia journal, a collection of thoughts and events gathered from April – October, 2014 about my cousin, our relationship and what it taught me.
Playgroup and ironing on Mondays. Chores on Tuesdays and Wednesdays. Work at Kmart on Thursdays. Work at the local hairdresser on Thursday nights and Fridays. Football on the weekends.
Week in. Week out.
I’ve never been much of a fan of routine. Or at least it’s never been a fan of me. The predictability of Alyssa’s schedule feels kind of suffocating. Monotonous. But there is a comfort in it for her. A security and familiarity.
I love watching her write in her diary, carefully recording the days as they roll by. Dinners at Grandma’s, doctor’s appointments, birthdays and anniversaries.
She fits neatly within the schedule of her family. A cog in a well-oiled machine that allows Lois to go to work and keeps everyone living together, under the same roof.
Alyssa lives at home with her mother, Lois and sister, Carly. The three of them moved into the house a few years back when Alyssa’s parents separated.
We often talk about Alyssa’s 30th birthday. She drops hints to Lois about wanting a big party with lots of dancing, just like her 21st.
Today though, it’s Carly’s birthday.
Alyssa wanted to make her a special lunch, so she cooked hot dogs. In the afternoon we make party hats out of old wrapping paper, ribbon and cards.
Later Lois drives the three of us to her Mum’s house for dinner – roast lamb and Grandma Ethel’s famous rainbow sponge. Aunty Julie – Lois’s sister and the youngest of Ethel’s daughters – meets us there, and Carly’s friend Tiernan arrives shortly after.
Everybody makes a big, happy fuss over Carly. We drink champagne, sing loudly and open presents. She grins with the attention.
On the drive home the car is silent.
Alyssa was 21 when Carly first started to lose her balance.
First she fell off her bike during the Christmas holidays. Later she found it hard to pick up a glass. Eventually, she lost her confidence driving and needed tutors to help with her studies. Her brain just wasn’t working like it was supposed to.
That was seven years ago.
Today Carly requires constant care. She is wheelchair-bound and while she can understand most things we say, she has difficulty communicating herself.
On Mondays, Tuesdays and Wednesdays, while Lois is at work, Alyssa is Carly’s primary caregiver.
After Carly’s afternoon nap, Alyssa switches on the TV. She glances at the clock as the time inches closer to 4.30pm, our normal stream of chatter slows to one-word responses once her show begins.
The Bold and the Beautiful. She slips into a world she’s known for more than a decade.
Alyssa tells me she watches for the fashion, but I think it’s the drama she loves. She squirms, screwing up her nose when someone kisses on screen.
“Oh please,” she’ll grumble.
Other times she’ll throw her hands up in the air, frustrated the characters can’t see what she sees.
“You know, I think Ridge gets married every ten years or so,” she says, shaking her head.
One episode, a young guy with impossible abs gets locked out of his house without clothes on. Alyssa shrieks every time his chiselled chest appears on the screen.
“My guy,” Carly says, turning slowly to Alyssa.
Alyssa scoffs and rolls her eyes.
The mornings are hectic.
Lois feeds Carly and hooks up her medication before dashing to work.
The change in Alyssa is immediate. For the next eight hours, she’s in charge.
She’s gentle but firm with Carly, insisting she chews her food and that she tries to communicate.
When we’re alone, Alyssa opens up. Often we end up talking about the two Lauren Kates.
The first is Alyssa’s eldest sister. She lives in England with her husband Dan, a Brit she fell for three months after arriving in London. She’s been away eight years now.
“While I’ve been away my whole family has changed,” Lauren says when we arrange to talk.
“It’s been so difficult, but they’ve never made me feel like I should come back, they’ve always been so supportive.”
The distance is hard for everyone. Long Skype calls between teary airport reunions and farewells keep them going.
Alyssa calls the other Lauren Kate her ‘very special friend’. The two had been inseparable since meeting in high school. They traveled together, made their debut together and someday wanted to be each others bridesmaids.
Last year, on the same day as Lois’s birthday, Lauren died suddenly at home. Her heart stopped working.
Just like that, Alyssa’s best friend disappeared.
“When I say she’s happy all the time, she does have sadness. She carries the loss of her friend deeply. It’s real life, it’s not one of her TV shows, this is what real life is about sadly.”
I told Alyssa about a date I went on. The long wait for a follow-up text message suggested there wouldn’t be a second. I guess I wanted to laugh with her about it.
“At least you go on dates”, she replies matter of factly. The truth in her comment kind of floors me. It’s hard to know what to say back. The lump in my throat appears again.
There is someone out there for everyone, right? That’s what I tell myself, that’s what I tell other single friends. Why should I respond any differently to Alyssa?
“I’d be a great mum… the problem is I just need to know how to cook so I can cook for my family… try not to get too scared of the hot oven.”
On Thursday mornings Alyssa catches the bus to Kmart where she works as a fitting room assistant. “They’re like family,” she says when I ask her about the other staff members. It’s a job she’s had since she left school and she’s close to qualifying for long service leave.
Alyssa is surrounded by strong women.
This is Aunty Julie. Lois tells me over the phone that Julie has been granted carer’s leave for the rest of this year. The relief in her voice is obvious.
The physical side of Carly’s care has become too much for Alyssa on her own.
On Thursday, while Alyssa works at Kmart, Julie takes Carly to Grandma’s for lunch.
This is Ethel. When she laughs her whole face cracks and crinkles but her sadness about Carly hovers close-by.
Meryl, her eldest daughter died when she was five from an allergic reaction to penicillin.
She’s seen her fair share of struggle. Still, she sends casseroles in Tupperware to fill Lois’s fridge.
On Fridays, Lois is home with Carly while Alyssa goes to work at the local hairdresser.
When I ask her about the future, she cries and I want to cry with her.
This home has so much joy. The level of silliness is far beyond another house with three adults living together. This is a happy home. A genuinely happy home with a lot of love, a lot of jokes and a lot of laughter.
But I can’t help but wonder about the future.
What happens for people like Alyssa and Carly when they can no longer live at home?
“I get scared of the time when my capabilities aren’t as good as they are just now. I try not to think of what the future may bring, I can’t dwell on that all the time.”
Alyssa and I, we’ve become pretty tight. She’s shared so much with me that I find myself sharing too.
She’ll often text me to see how I am or what I’ve been up to. Every message ends with Lve Me xxoo.
In the beginning, I was surprised at her ability to understand and describe her own feelings. I had underestimated her.
“I’m just like anyone else, I’ve got feelings,” she said, when I asked what she wanted people to know about her.
She trusts herself and her emotions, rarely second-guessing herself. I envy her for that. She learnt long ago to just be herself. She is enough and she reminds me that I am enough, too.
She is genuinely self-assured. Not overly confident. Not showy. Just comfortable in her skin.
One time she sang karaoke for Carly and me. Song after song. Loud and completely off-key.
“It never gives me a high score,” she shrugs.
And then there’s the dancing.
Sometimes on Sundays, Alyssa catches the train into the city to meet her friend Olivia. They always meet at platform 11 and 12 at 11.30am.
It’s bittersweet. Alyssa loves spending time with Olivia but sometimes the outings remind her of Lauren.
The first time she took the train after Lauren’s death, she asked me to travel with her.
“It would be nice to have some company this time.”
It’s been six months since I started photographing Alyssa.
Winter has passed. Footy season is over. Ridge went missing on a tropical island, got rescued then proposed to his ex-wife’s sister.
The lump in my throat is gone too. I guess that’s hardly surprising. We fear what we don’t know.
If I met Alyssa today, I wouldn’t shy away from talking with her. Though in all honesty, I probably wouldn’t have a choice in the matter. She is definitely the conversationalist in this relationship.
“I wonder where I get that from,” Alyssa says, raising her eyebrows at Lois.
“I love my life because I’ve got wonderful people in it, people I love so much… and that’s probably all I need.”