Teamwork and faith helped my parents raise children with SMA
I get asked by parents of children with disabilities about my 'amazing' mom and dad
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“How did your parents do it?”
People have asked me this many times over the years. It usually comes up when they learn of some aspect of my independence, an accomplishment, or something else that impresses them about the way I live my life in a wheelchair with spinal muscular atrophy (SMA).
Sometimes it sounds like a rhetorical comment of awe and wonder, but other times it’s a genuine question seeking a genuine answer. The question is often asked by parents of young children with disabilities who are trying to wrap their minds around what their future could look like. I get to connect with these families through my work at We Carry Kevan, a nonprofit organization.
I have had no idea how to respond to their question about my parents. Typically, I just smile and say something like: “I know! They’re pretty amazing.”
Just how did they do it?
They really are, but the question made me begin to wonder, too. How did they do it?
From my perspective, I had a happy and whimsical childhood, but I think now that it must have been more difficult and complicated than I knew. What did my parents sacrifice and what battles did they fight to protect me, provide for me, and allow me to live the way I have?
I brought the question to them a while ago. “How did we do — what?” my mom replied. “We just trusted God and lived.”
My dad agreed: “We had to rely on God to show us what to do, and we just took one day at a time.”
I pressed a little harder and learned that, through their faith, there were some intentional and strategic moves they made.
Having a home
One of their earliest decisions was to find a single-level house with good potential for modifications, allowing it to grow and evolve with our family’s needs over time. They raised three kids, two of whom used power wheelchairs, so space and access were important. When my brothers and I were small, Mom and Dad couldn’t predict what those changes might mean, but as we got bigger, developed more interests, and needed more help, they paid attention and made adjustments.
“We learned what needed to be done and we figured out how to make it happen,” my dad said humbly with a shrug.
Fortunately, he is quite creative and handy with a hammer and saw, so throughout the years, he has tackled projects such as widening doorways, replacing carpet with more durable flooring, transforming the garage into an extra bedroom and bathroom, and even adding a large family room to the back of the house. Let me not forget to mention all the holes he patched up and scuff marks he buffed out on walls and doors along the way!
Being a team
Another key to their success was that early on, my parents agreed to work as a team and face every challenge together. They both worked full-time jobs when we kids were in grade school, but they communicated and made sure at least one was around to take care of us. For many years, that meant that my dad worked third shift and my mom didn’t work during our summer breaks from school.
They were also very involved in activities at our schools and our church, so if there were overnight trips I wanted to go on, they would accompany me as group chaperones, not just my caregivers.
We didn’t live near our extended family, but there were a few “adopted” family members that Mom and Dad turned to when they needed extra support — our pastor and his wife, our neighbor across the street, and a couple who were my parents’ long-time best friends. These people were such a natural part of my life that it wasn’t until recently that I realized how extraordinary and life-changing their love and care were for our family. “We had each other, and we had the Lord,” my mom said.
There isn’t a standard “how-to” manual for parenting children with disabilities. Every family’s journey is unique in its joys, griefs, priorities, and challenges. I don’t hold the things my parents did as the rule book — or playbook — for everyone, but I want to share them as our own incredible story of learning, growing, and leaning on God.
My dad had said they just tried to help my brothers and me live as normal a life as possible. But because of their steady presence, love, and thoughtfulness, our lives are anything but normal — in the most wonderful, remarkable, miraculous, and beautiful ways.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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