The Struggles and Joys of Parenting from a Wheelchair

It was a random day with my two sons, and we were just relaxing in the living room while watching TV. My then-10 year-old asked me to get him some water. I looked at him, sprawled lazily on the floor, and said, “Hey, you’ve got two perfectly good legs. You know where the refrigerator is, where the cups are, and how the water dispenser works.” Cue the groaning and whining as he dragged his feet towards the kitchen. I said to him, “You know, you’re the one who gets to walk all the time.” He looked back at me with a wry grin and replied, “You know, you’re the one who gets to sit down all the time.” Atta boy. I taught you well.

Having and raising kids when you have any kind of disability, whether mental or physical, makes an already tough job even tougher. I had both of my sons after my MS diagnosis, and fortunately, both of my pregnancies and deliveries were completely unremarkable. My ex-husband and I didn’t take the decision to have our own biological children lightly, as there is a tiny possibility of passing MS on to your kids (1 percent for boys and 3 percent for girls). But to this day, they’re both very happy and healthy, although I think I’ll always be paranoid if they exhibit anything even remotely resembling a neurological problem.

I don’t want to talk about taking care of babies when you’re fatigued or how to deal with a toddler and infant when you’re using a cane. I don’t want to revisit the panic that comes with not being able to run to the aid of your child when he gets hurt, or the mommy guilt that comes with telling your kids you can’t take them to the pool because you can’t swim to get them if something happens. I don’t want to because it really sucks, and even more so when you have to deal with these things as a single mom. But I will because I have to.

Mommy guilt is real. And I think wheelchair moms carry a bigger load of it than other moms. We all feel guilty about something at some point (or several) in this parenting journey. Sometimes it’s because we can’t afford to pay for college, or because we missed a big basketball game because we had to work late. It could be as simple as a broken promise or forgetting to buy a favorite cereal during a grocery shopping trip. The opportunities for feeling guilty as a mother are endless.

Wheelchair moms can do more for their kids than you can possibly imagine, but we’d be foolish not to acknowledge that we have our limitations. When I was married, I relied on my then-husband for many things. Now as a single mom, my kids are older and don’t need as much help, but I still rely on others so my kids can have a “normal” childhood (whatever that means these days). Fortunately, I was able to do everything a mother without MS could do for my kids when they were babies. I was able to walk well enough with both of them that I could haul their baby carriers to and from the car, carry them safely around the house, and take them to Gymboree and the library and playgroup as needed without much help. At that point, I didn’t feel we were missing out on anything.

But as expected, my MS slowly started to get worse and I started needing more help. I started using a cane full-time outside the house, and we had to hire a part-time nanny to help me take my youngest to play dates or anywhere that involved carrying him somewhere safely. I couldn’t take both of them anywhere by myself because I couldn’t physically handle simple things, like taking them to the bathroom or physically picking up my oldest at three years old because he was having a tantrum and we needed to leave wherever we were.

When we were living in California, a playgroup I had just joined was having a play date at a local gymnastics warehouse. They usually had a separate area for very small children, but in this case, it was too open to the more dangerous parts of the gym for older kids. I couldn’t keep up with my then-16 month-old, and since I didn’t know the other moms well enough to ask for their help in chasing around my son, we left. My son cried, of course, but it was nothing compared to the tears of failure I cried in the car that morning before we drove home.

I got my walker in 2011 when my oldest was almost 4 years old, and that made things a lot easier. I remember taking him to a doctor’s appointment, and it was the first time he had seen me use it. He said to me as we were approaching the building, “Mommy, you can almost walk like me!” Yes, I almost cried at hearing that. I could sit whenever and wherever I needed to, and I could load the walker seat with whatever I needed to move from one place to the next. You have no idea how incredibly useful this is at a buffet or cocktail party! On one occasion, it was pouring rain on a day I had to take my oldest to his gymnastics class. As you can imagine, using a walker and an umbrella at the same time isn’t the easiest thing in the world. So I sat him on the walker, gave him the umbrella to hold and (attempt to) cover us both, and we were on our way, giggling and laughing (and getting a bit wet) the whole time.

But one of the greatest joys in this journey with MS and my kids was when I got my scooter. At the time it was delivered to our home in southwest Illinois, I had never walked farther than perhaps three or four houses down from our own house. It was just physically too taxing. So that evening, I told the boys I wanted to go for a walk. For over an hour, I just followed behind them, traveling in our neighborhood outside of the car for the first time in the three and a half years we had been living there. I laughed when they would stop to look at a bug on the ground, enjoy the smells of all the fir trees and flowers, and freak out whenever a bee came too close to me (I don’t do flying bugs). Just doing something so simple and common and uneventful brought me so much joy that day that it was all I could do to not start sobbing with happiness in front of our kids.

Those are the kinds of moments I have to keep in mind when I have one of my regular #mommyfail moments. I understand that all mothers have these moments, and they’re definitely not just limited to those of us with physical issues. But the most heartbreaking times for me are the ones like when I had to leave that gym years ago. I can’t play with the boys at the park like most moms. I can be there watching, and shouting encouragement and “I see you!” when one of them yells for me to look at them. But I can’t push them on the swings, I can’t chase them around a park, and I can’t catch them at the bottom of a slide. I’ve learned after many years of experience that this bothers me considerably more than it bothers them. Still, I feel that it should be me there instead of a sitter or friend or family member.

According to the American Bar Association, current research reveals that there are 4.1 million parents with disabilities in the United States, which equates to roughly 6.2 percent of all American parents with children under the age of 18. Of the parents with disabilities, 2.8 percent have a mobility disability, 2.3 percent have a cognitive disability, 2.3 percent have a daily activity limitation, 1.4 percent have a hearing disability, and 1.2 percent have a vision disability. Because of the shortage of data and research on the prevalence of parents with disabilities, these statistics likely underestimate significantly the number of parents with disabilities. These are not small numbers.

But tragically, there is a long list of court cases where children as young as two days old have been taken away from their parents and placed into foster care simply because at least one parent has a disability. According to a report by the National Council on Disability, fully two-thirds of dependency statutes allow the court to reach the determination that a parent is unfit (a determination necessary to terminate parental rights) on the basis of the parent’s disability. In every state, disability may be considered in determining the best interest of a child for purposes of a custody determination in family or dependency court. This has been a HUGE obstacle for wheelchair parents who know how to be amazing parents, but are at the mercy of prejudiced courts across the country. I feel lucky that I get my kids all summer, alternate holidays, and weekend visits whenever possible.

Aside from not being with them full-time, I have also emotionally burdened myself with the fact that my boys — especially my oldest — have more responsibilities than their peers because their mother can’t perform certain tasks. I have to ask them to bring me items sometimes and do things around the house that I would normally do for myself. They have to trust more quickly in other people when they need help with certain things because I can’t do it for them.

I have several friends who have a mom with MS, and they — along with many other people — all tell me the same thing: my boys will grow to be more patient, kind, and compassionate than many of their peers because of this experience. I’m privileged enough to see this in action on a regular basis. When they see another person in a wheelchair, they don’t ask what’s wrong with them; they just say, “Look, Mommy! They have a wheelchair just like you!” When they met someone with an advanced case of cerebral palsy in a power chair who clearly looked very different than me, they just talked to him like he was anyone else. When I drop something (which is often), one of my kids will automatically pick it up without being asked, just because they want to help. And that, my friends, is a #mommywin.

Some wheelchair parents have more challenges and need more help than others. Some need modified cribs or use their teeth to deal with diapers and onesies and wipes. But guess what? We have the same amount of love in our hearts for our children as everyone else. Just because we might need physical help with parenting doesn’t make us less of a parent. While the guilt is real and our kids may have childhoods that are a bit different from their friends, we all end up becoming more compassionate people in the process — which is a real win for humanity.

About the Author: Sylvia Longmire is an award-winning accessible travel writer, a service-disabled Air Force veteran, and the former Ms. Wheelchair USA 2016. She travels around the world, usually solo, in her power wheelchair to document the accessibility of her destinations through articles, photography, and video. Sylvia is also the owner of an accessible travel agency, President of the nonprofit scholarship fund The PreJax Foundation, and a staunch advocate for accessibility in Central Florida. She is a brand ambassador for O, The Oprah Magazine, the author of three accessible travel books, and the creator of the Spin the Globe accessible travel blog.

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