What life is like for parents with a disability

Four parents share their stories.

Photo: Lisa Sagel

Photo: Lisa Sagel

Raquel Godin
At 26, Raquel Godin was happily married and excited to start a family with her husband, Rob. Then, one day in 2001, she got sick. She thought it was the flu, with achiness and cold symptoms. Otherwise healthy, she wasn’t concerned. She finished her shift at the Winnipeg daycare where she worked, cancelled an evening out with friends and went to bed.

Little did she know that within 24 hours, she’d be fighting for her life.

Godin woke up the next morning so sore she couldn’t move. “Either you get yourself up out of bed or I’m calling an ambulance,” Rob told her. A few minutes later, he put in the call. The paramedics had to carry her out of the house.

A spinal tap diagnosed a potentially deadly infection of bacterial meningitis. As Godin got sicker, her kidneys started shutting down and she was moved into isolation. Doctors put her odds of survival at less than 10 percent.

While her parents and husband helplessly watched her through the isolation-room glass, desperately hoping the treatment would stop the spread of infection, Godin still didn’t realize she had something more serious than an ordinary flu virus. “I thought everybody was overreacting,” she recalls. “I had no idea how sick I was.”

She survived the infection, but it required drastic measures. Her legs were amputated below the knee, and all fingers on both hands, with the exception of her right thumb, were either partially or fully amputated. She lost kidney function for several weeks.

Her recovery and rehabilitation took two years. “The biggest goal for me was to walk again,” says Godin. But first she had to endure numerous skin grafts over her knees. The grafts on her left knee failed to take, so a section of skin, arteries and veins from her back was transplanted to her left knee. Finally, Godin took her first steps on prosthetic legs. “It was unbelievable—I can’t even put it into words,” she says. Prosthetic fingers turned out to be more cosmetic than functional, so she stopped using them after a couple of years.

After her recovery, Godin returned to work, and she and Rob focused on starting the family they had always planned on. But pregnancy weight could cause problems for the fragile skin on Godin’s knees, and her history of kidney failure was an issue, too. Meanwhile, Godin had become captivated by a little girl at her daycare who had been adopted from Ethiopia. She and Rob decided that was the route for them.

About a year after starting the adoption process, the couple became the parents of a 16-month-old boy from Ethiopia named Eben (pronounced “Ebben”). The 24-hour journey home was gruelling. Godin spent the time trying to bond with her son, who was sick from a parasite, didn’t understand English and seemed only to want Rob. (The mother-son relationship came more easily once they were settled at home.)

When, two years later, the couple adopted a two-and-a-half-year-old daughter, Eden, also from Ethiopia, their bond was immediate—but there were other challenges. Eden could run away faster than Godin could chase her on her prosthetic legs. This was particularly scary in the Addis Ababa guest house where they stayed for two weeks—the steep marble staircase had no railings. Since they didn’t share a language yet, it was a struggle for Godin to keep her daughter from flying headfirst down the stairs. “I was terrified,” Godin recalls. “One evening, Eden kept bolting, so we had to lock ourselves in our room.”

Back in Canada, things got easier. Because of her daycare job, Godin already had a good handle on the practical tasks of child care, like zipping coats and wiping noses, even if they took a little extra time for her. (Changing diapers without fingers turned out to be a non-issue, because both kids were already toilet trained.) But Godin wondered how her amputations would affect her kids. “I was worried about the way my hands and legs looked—would that scare them?” The kids were curious and wanted to touch them, “but it didn’t really seem to faze them that much,” she says. They’ve grown to be accepting of other people with disabilities, too. When Eden sees someone else with a missing limb, she asks her mom lots of questions, like whether that person will get his or her own prosthetic. The outgoing 11-year-old is also happy to talk to total strangers about her mom’s amputations. “If people say something, she steps right over and fills them in. In fact, I had to stop her from telling people they cut my legs off with a chainsaw!” Godin says, laughing.

Godin is able to take on the same tasks as any other parent, like mowing the grass or driving the kids to activities. One exception: Long family walks bother her legs. She sometimes gets frustrated with her disability, but tries not to dwell on it. “You have to move on,” she says. She looks at her two thriving kids and is filled with gratitude. “I wouldn’t have them in my life if I didn’t get sick. I’m thankful.”

Photo: Lisa Sagel

Melanie Moore
Blind mom-of-three Melanie Moore has learned many tricks to parenting without eyesight. To keep her kids safe when they were toddlers, she would use furniture or gates to barricade a play area, or put them in a playpen while she made dinner. If her kids went out in the yard, it was always fenced. For outings to the park, she would sometimes arrange playdates, so other parents could help watch her sons. Or she would keep in verbal contact with them and ask other parents at the park to help spot them if needed. “Blind people don’t qualify for attendant care, so we have to make sure we have friends, relatives or neighbours who can support us,” she says.

Moore is raising eight-year-old Jeff* as a single parent—she and his dad separated more than three years ago—and also has two grown sons from an earlier marriage, so her child-rearing experience spans generations. Today, as part of her outreach work for a non-profit organization, she provides peer support to other parents with disabilities.

Moore gets around Toronto with her guide dog, a yellow Lab named Kalani, or a white cane. She memorizes bus and subway routes, and listens for traffic noises to know when it’s safe to cross a busy street. (Moore is legally blind but does have some vision. For example, she can see lines on a road if they are thick enough, but she can’t see details in peoples’ faces. She used to be able to see some colour but can’t anymore.) When her youngest son was small, she travelled with a heavy-duty baby carrier on her back. “I always knew where he was!” she says. As he got older, she kept him by her side with a harness or simply by holding his hand.

Moore also uses technology to help get through the day—computer software can read emails and documents out loud; a hand-held colour detector speaks the colour of an item when pressed against it (useful for clothes shopping).

Moore counts on family and friends to pitch in for tasks that require vision, like driving to hockey practice (when she and her two older boys lived in a smaller town without public transit). And she always made sure she did something in return. “I’d bake stuff or give them money for gas,” Moore says. Sometimes she had to work to convince people to accept her contributions. “They’d say, you don’t have to do that—it doesn’t matter. But it matters to me. It’s about equality and dignity.”

Despite how in control she feels of her own day-to-day challenges, Moore worries that as a parent with a disability, she is scrutinized more closely than other parents. She recalls an incident in which Jeff, then four, burned his hand on the kitchen stove (she knew exactly where he was, waiting by the stove obediently, when he accidentally touched the burner). As Moore rushed him to the hospital by cab, she found herself rehearsing answers to any questions she might be asked about supervision and safety in the home. “I knew I needed to be articulate,” she says. “Even to this day I still worry, because it takes just one thing and he could be taken away.”

Jeff struggles with the fact that his mom is different from other parents. “He has a really hard time with people who stare,” says Moore. “If kids are staring at you because you’re eight and you have your own phone or your mom has a fantastic-looking car, then he wouldn’t mind. But if they’re staring because they see someone who’s not ‘normal,’ that’s what makes him feel uncomfortable.”

Jeff also worries about his mom, which in turn concerns Moore. She doesn’t want her vision disability to be an undue burden on her son. “If I could see, he wouldn’t have to worry about me,” she says. “If there’s a really big snowstorm and it’s blowing everywhere, he says, ‘You might get lost!’ And I’ll say, ‘No, it’ll be OK. I’ll take my time, and we don’t have to go far.’”

* Name has been changed.

Photo: Lisa Sagel

Ed McQuillan
It was an ordinary ski trip gone horribly wrong. Six years ago, Ed McQuillan was chaperoning his daughter Andrea’s ski team down a gentle hill north of Truro, NS, when he fell awkwardly. He wasn’t going fast, and the terrain wasn’t difficult. Yet this undramatic accident was enough to break his back and permanently damage his spinal cord, paralyzing him from the belly button down. “I didn’t really believe it at first,” he says. “I kept looking at my toes to see if they would move.”

About four weeks after his accident, McQuillan’s wife, Sandra, wheeled him from his hospital room and took him outside for the first time. “I started to cry,” he says. “I thought I was having a mental breakdown, but now I realize I had missed being outdoors. I was just overwhelmed.”

In rehab, he began to truly contemplate what had happened. “It was like I was grieving for someone who had died. And I guess that’s how I was feeling—that part of me had died and was gone.” McQuillan thought about the things he would miss now that he couldn’t walk: He’d always been an outdoorsy guy, fishing and hunting, playing sports, working on carpentry projects and tinkering with his truck. He also got immense joy out of spending time outside with his girls, who were eight and 14 at the time of the accident. Would they share any of those moments again? “I thought about how I would physically do things with them, like fly a kite or go to the beach.”

McQuillan spent two months in rehab with Sandra by his side every day, encouraging him to look forward. He was motivated by reading about the accomplishments of other people with spinal cord injuries. And he was cheered on in his recovery by extended family, friends, church friends and neighbours. “All that support helped me not to give up or give in to the injury,” he says.

One weekend during rehab, McQuillan was able to visit his house. “That first weekend at home after my accident, I looked up at the lights and thought, I can’t even do a simple thing like change a light bulb in our home. That was pretty deflating. Then I began thinking of all the other things I couldn’t do, and it was a little overwhelming. That wasn’t the last time I would think that way during my recovery, but with the help of Sandra, we concentrated on the things I could do,” says McQuillan.

These days, when McQuillan wants to go swimming with his daughters in the family pool, he wheels onto the deck and drops into the water from his wheelchair. He climbs back into his chair using the pool steps and then a wooden stepstool he built to reach the chair. “Our pool gave us all a place to be together and have some fun and relax,” he says. Now retired, he also enjoys watching his 14-year-old daughter Marlee’s school volleyball games and swim team events. (Andrea, 20, is a student at Acadia University.)

To McQuillan’s great joy, other outdoor sports aren’t so out of reach after all. He rows regularly at Lake Banook in Dartmouth, NS, and has tried adapted surfing and fly-fishing. He even relearned how to ski—this time with a mono sit-ski—so he can once again join his family on the slopes.

His home, a farmhouse in Nova Scotia’s Hants County that has been in Sandra’s family for 200 years, wasn’t wheelchair accessible, so they installed an elevator and a large new bathroom with a roll-in shower. McQuillan can still drive, but with hand controls. He has learned to use special leg braces for standing, to improve circulation and protect bone mass. He’s also had to adjust the way he reaches for things from his wheelchair, without dropping them. “Sitting, I’m a lot shorter and approach items at a different angle. Just that little thing makes it difficult to pick items up.”

One thing he hasn’t yet found a hack for: In a wheelchair, he can’t get close enough to his loved ones when he hugs them. “That’s what I miss most of all,” he says.

To his amazement, his daughters took his new disability in stride. “I’m just so proud of how they’ve embraced it, like I’ve always used a wheelchair,” McQuillan says. He believes his accident has actually brought his family closer together, because, he says, “we can talk about anything.” He has advice for other parents who find themselves with an unexpected disability: “Don’t think twice about how it will affect your role as a parent. I’m the same dad, just with a spinal cord injury. We still have all the same trials and triumphs you might have with young girls.”

Photo: Lisa Sagel

Tammy Gray
When Tammy Gray was growing up in small-town Alberta in the 1970s, medical and education experts believed deaf kids should be taught to speak and read lips. So Gray and her parents never learned American Sign Language (ASL) when she was a child, and conversations between them were difficult.

At 18, however, Gray learned sign language. She knew she wanted to do things differently when she became a mom. To set the stage for effortless communication with her own two sons, now 11 and 13, she started signing to them the day they were born. “They were able to sign their first words at an early age,” Gray says. Kenan’s first signed word was “milk,” at six months, and his younger brother JC’s was “mom,” at nine months. Gray’s husband at the time (they’ve been separated since 2006) is not deaf, but he also learned sign language so they could all communicate that way.

Caring for a newborn baby when you can’t hear him cry requires some adjustments, however. Instead of a traditional baby monitor, Gray used a lamp designed for deaf parents that flashes in response to sound. As her babies got older, though, they enjoyed being noisy just to make the light flash, so Gray had to refine her method: “If they were really crying, the light would be flashing fully, and I’d come running. If it was flickering, it meant they were happy.”

As the boys grew up, they learned to find their mom and tap her shoulder when they needed her. “If they were hurt, they came to me. My hearing friends’ children would cry, ‘Mommy, Mommy,’ and wait for their mother to come to them.”

Because most of the other parents and teachers Gray interacts with in their town of Tsawwassen, BC, don’t know sign language, she relies on texts or lip-reading to communicate with them, or she types on her smartphone’s notepad. Gray uses ASL interpreters for teacher meetings and when serving on parent advisory committees.

Gray is anxious about what lies ahead as her sons enter their teens. “Will I be able to understand what’s going on with their lives, friends, school? Information moves at a very quick pace now. I worry I won’t catch some things in time to ward off problems.”

She is glad, however, that her sons are still fluent in ASL. “Now my boys and I can have debates and in-depth conversations. I have insight into who they are as individuals.” Since Gray missed out on this connection with her own parents, having it with her sons is especially precious. She also believes her deafness is a strength in their relationship because of the focus required when they’re communicating—neither participant in the conversation can get away with half-listening. “Because signing is a visual language, there’s a lot of eye contact. We can see what each other is feeling.”

A version of this article appeared in our January 2016 issue with the headline, “More than able,” on p. 58. 

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Disabled parents fight to keep their baby>
How to keep your relationship strong while parenting a special needs child>
We desperately need a Canadians with Disabilities Act>

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