I hate dancing. I always have. I have no rhythm, I have no confidence and I’m worried what other people watching will think. I just do not dance, unless I have to.
A few months ago I had to.
It was a Sunday, in the middle of the afternoon, and there were only four people there.
The DJ’s name is Ada. She syncs all her favourite songs from her iPad to the speakers around her room. Her signature move is to play “Shape of You” by Ed Sheeran over and over again. It’s a bold choice, but she doesn’t care. She’s only four years old.
Ada pulls both my fiancée and I into her club/bedroom by the fingers.
“Dance with me!” she yells, flipping her long brown hair over her shoulder and swirling with her hands in the air.
She jumps from the floor to her bed and holds the landing, arms stretched to the ceiling, a smile spread across her face. Soon she’s on the floor to begin the whole routine again. This time she’s singing most of the words.
By then, her parents — Scott and Cathy — disappear from the doorway. They seem happy to be left off the dance card this time. Scott has been my friend since we were kids, not all that much older than Ada is now. For a few years during elementary school, I spent every lunch at Scott’s house. I still crave his mom’s cookies. Through hockey and high school we stayed friends.
The summer after I moved away to university, Scott was in a motorcycle accident. A badly broken leg nearly killed him.
“They wanted to cut my pants right off me,” he said from his hospital bed when a group of us went to visit. “I told them they’d better buy me dinner first.”
It was way easier to laugh at his drugged-up jokes than to talk about what could have been. I think he’s been masking how much that leg hurts ever since.
He’d probably tell you it’s all worth it though. That crash got him Cathy. She was his massage therapist after the accident. Then she was his girlfriend. Now she is his wife.
“I like her more than I like you,” I told Scott the first time I met her.
“Me too,” he said.
I never saw my friend happier than the day he married Cathy. Until I saw him with his daughters.
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Scott and Cathy bought his childhood home from his parents. They’ve knocked out walls and renovated the kitchen — everything is upgraded. But it still feels the same to me. Ada’s room used to be Scott’s room, as if this Sunday afternoon dance party wasn’t already odd enough.
For all of Ada’s efforts though, she’s not the one who made this party so special. She’s not the one who makes me want to dance. Her little sister Maren does.
Maren is not like Ada. She’s got a mop of dusty blonde hair on top of her head. Her purple glasses make her eyes look bigger than they are. Her smile doesn’t spread all that far, but it lights up just the same. It’s the kind of smile you match every time you see it. Maren is not like Ada, but she sure tries to be.
As her big sister hops around the room, Maren follows closely behind. As closely as she can anyway. She spins a little slower and her arms don’t stretch quite as wide. Ada is loose and carefree. Maren is focused. She’s trying twice as hard and getting half the results. Ada jumps on the bed in one try — it takes Maren about five. First, she grips the sheets with both hands, then pulls herself up until her feet no longer touch the ground. Then she rolls herself onto the mattress at the hips before pushing herself upwards and thrusting herself into the same pose as her sister.
Getting down is just as tough. She gingerly reverses her roll from the bed back to the ground. When she stumbles at the bottom, she pops right back up. She’s not singing along. She’s busy enough just trying to keep up.
Her whole life she’s just been trying to keep up.
Outside the dance party, Cathy shows us the walker they borrowed through Saskatchewan Health to help Maren. It’s kind of like a highchair on wheels that she can drive, Fred Flintstone style. She just hasn’t been able to find her stride on her own yet.
As Maren and her walker disappear after her sister, no one says anything. We all know something is wrong. Again, it’s easier not to talk about it.
The words come a month later in a text from Scott.
“We got some bad news,” it read. “The doctors say it’s very likely she has Leigh’s disease/syndrome.”
The United Mitochondrial Disease Foundation calls Leigh’s Disease a progressive neurometabolic disorder. The chances of a baby having it are somewhere in the one-in-40,000 range. The doctors believe Scott and Cathy both had to be carrying the gene for Maren to get it — some sort of terrible genetic lottery.
Kids with Leigh’s Disease will lose physical and cognitive skills like walking, talking and even control of their heads. Eventually, there could be heart, kidney and breathing problems. As hard as Maren tries to keep up, it’s only going to get harder.
It’s awful and there is no cure.
“If we are lucky, she will make age six or seven. These kids often don’t see past age three,” Scott’s text said. “We are completely heartbroken.”
Not long ago, Maren turned two with a Peppa Pig birthday party and a feeding tube. A few weeks later, Maren had surgery to permanently plant the feeding tube in her stomach. A GoFundMe page has been set up to help the family with routine trips to the doctor and renovations to make their home more accessible.
View photos of Maren in the gallery below:
I don’t live close enough to see her very often, but I see the pictures. Scott and Cathy share her with us all that way. She has gone to the beach to touch the ocean. She plays at the park and rides her tiny bike. Even in the hospital she wears that smile I told you about.
The thing about little kids is that their will is always bigger than their bodies. In that way, Maren is just like everyone else. Leigh’s Disease won’t let her grow up the way she’s supposed to. But it can’t stop her spirit. Nothing can.
I think about Maren a lot. I think about her mom and her dad, her sister and her grandparents. I think about the hospitals and the doctors, purple glasses and her Peppa Pig birthday party.
But most of all, I think about that Sunday afternoon: pulling herself up on that bed, forcing herself to stand and beaming at her success. All that, only to drop down and go through it all again. Earning her moment every time.
Despite it all, she’s determined to dance. From now on, I’m going to dance too.
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