Raising children is one of the hardest things you can do. But doing it with an SCI is a whole new level of hard.
Mary Makuc raised five kids – for decades after her injury.
Mary, now in her mid-50s, grew up in a suburb of Boston as the daughter of school teachers and the youngest of three children. “We were a close family, and I aspired to have a family like that,” she says.
She would get her chance, but not before a personal tragedy threatened to crush her dreams in their infancy.
A Costly Mistake
Mary was just 21 when a car accident severed her spinal cord.
“I zigged when I should have zagged,” she says. “I was distracted, overtired, and went off the road.”
She slammed into a stone wall and a telephone pole, breaking her back at T5, fracturing her right leg, and suffering a mild concussion. The fact that she wasn’t wearing a seatbelt certainly didn’t help.
Alone in the car, Mary estimates she lost consciousness for about half an hour.
It took nearly six months in the hospital, several surgeries, and endless rehab to get to the point where she could walk with a cane and leg braces.
A New Beginning
As a single young woman whose life had just been torn apart, it would have been easy to spiral into depression. But Mary decided right away not to let her injury crush her spirit or derail her goals.
That included goals for her personal life. So, when the opportunity presented itself three years later, she went on a blind date.
With her braces hidden under her clothes, her date, Mark, had no idea she was disabled when they first met. “He thought I was just a jock who got hurt,” she says.
She told him a couple of dates later, after she thought they might have something real. To his credit, he took the news in stride.
They got married in 1993 and had their first child together a year later.
“One of my first questions to my doctor after my accident was whether I could have a baby,” Mary says. “I grew up in a Catholic family and wanted children pretty much my whole life.”
Despite the myriad challenges of living with an SCI, Mary and her husband raised three girls and two boys through high school and beyond.
As you might imagine, she’s learned some valuable lessons about parenting with a disability. Here are some of them.
Use your Limitations to Your Advantage
As a parent living with paralysis, something dawns on you pretty early on: There’s just no way you can keep up with your kid (or kids). That realization can be depressing or make you downright panicky.
But there are ways to adapt. And your relative lack of mobility can even be a boon to your kids’ development.
Mary used a cane or crutches most of the time for about 15 years after her accident, including after three of her children came along. “But when I had my fourth when I was 39 or 40, I realized I could accomplish more in my wheelchair,” she says.
At one point, she got a scooter. And although getting around was still tough, she used her limitations to instill valuable character qualities in her kids.
“I think they learned some patience. I also think they learned some independence early on, because as soon as they were able to crawl and walk, I highly encouraged it.”
Mary kept on encouraging that independence – making their own lunches, going to the neighbors’ house by themselves, etc. – as soon as it was age-appropriate. It eased some of the burden on her, and her kids were the better for it.
Focus on Your Heart, Not Your Body
Good parenting comes from within. Ultimately, whether your spinal cord and other body parts work properly is immaterial.
“I used to be concerned about not being able to do this or that, whether my kids would be safe, whether I could be a good mother. But the older they got, the more I realized that parenting is about your heart and your brain and not your physical reality,” Mary says.
That doesn’t mean she didn’t struggle. She often felt badly that she couldn’t do all of the things her kids were doing.
“Over time, I reached a new level of acceptance. But when they were really little, there was a lot of guilt, shame, and questioning.”
If there was something she really wanted her kids to do that she couldn’t, she relied on others to make it happen.
For example, she had to make sure they were getting plenty of exercise and learning basic skills like how to swim and ride a bike – things she couldn’t do with them. If verbal instructions weren’t enough, she relied on her husband.
And you know what? It all worked out.
Her kids were in plenty of activities and hit all their physical milestones. They just got there without quite as much hands-on assistance from Mom.
Don’t Make Your Disability Worse
How could someone living with paralysis make their disability worse? By failing to take care of themselves.
If you do that, your kids will bear the brunt.
“Before my first baby was even out, I had to start thinking like a mother – get enough sleep, try to get exercise,” Mary says. “My way of coping with my disability is to figure out what helps me stay calm and be a good mom. Because when Mom is happy, that helps my family.”
This obviously means exercising, eating right, getting enough sleep, and so forth. But it also means learning to manage the daily frustrations of being disabled that are always threatening to boil over.
That was especially true when urinary tract infections and other complications arose. “You think you’re going to do something with the child, and something rears its ugly head,” she says.
“The hardest part was the frustration and not taking it out on my children. Don’t do that, because it’s not their fault. Don’t be afraid to get counseling if you need it.”
Discipline With Diligence
When you have trouble keeping up with your kids, discipline becomes even more important. They know they can run away from you and do whatever they please, so you have to lay down the law early.
Mary tried putting one of her kids on a leash, but that didn’t work out so well. She realized that since she couldn’t physically commandeer them, she had to train them to respond to verbal commands.
“A lot of mothers I talk to with disabilities said they use their voice a lot. My kids know that if they don’t listen to me, they’re going to be in trouble.”
Find Your Tribe
No one can raise a child alone, and that’s doubly true if you live with paralysis. Find people who are invested in your kids and can step up when you need it.
Mary’s tribe started with her husband. They conquered all the challenges of parenthood together.
One of her relatively small but crucial challenges was making sure her children got to school on time every day.
“It wasn’t just getting them on the bus, but seeing that they had their schoolwork and lunch money and other stuff. My husband and I tag-teamed it. It was about safety, speed, and efficiency.”
It helped that Mark’s father had had a degenerative spinal cord disease for many years, so he knew all about providing personal care and emotional support to a loved one.
“Over the years, when I said there was something I could or couldn’t do, he was used to helping someone who had needed quite a lot of care. Mark came from a family of seven, and they all supported each other.”
Beyond her husband, she also got help from friends and, periodically, a paid caregiver.
The point is that she didn’t try to do it all herself. That’s a recipe for failure for any parent, but especially one living with paralysis.
In the age of the Internet, your tribe doesn’t have to be limited to family and friends.
Through social media platforms and disability websites like SpinalCord.com, the Reeve Foundation, the Spina Bifida Association, Through the Looking Glass, and the Disabled Parenting Project, you can find hundreds of resources on every conceivable SCI-related topic. You also can meet people from all over the world in your exact situation who can empathize and provide advice.
Remember that you’re not in this alone. Parenting with paralysis is worth the struggle – even though it might not seem like it in the darkest days.
“Having a disability just adds another layer to a really tough but rewarding job,” Mary says.
If you’re a parent living with paralysis, please share any tips or lessons you’ve learned in the comments. I would love to read your stories and learn from you on my own parenting journey. TwP