It’s Hard but It’s Worth It

by Heather MacMurray

I haven’t always been disabled, but my sons have never known me not to be. They are ten and seven years old and, as far as they know, I have always been in a wheelchair and had minimal use of my limbs. The older one may have early memories of me, but by the time the little one started to walk I was a full-time wheelchair user.

I got my first travel wheelchair when I was pregnant with my first son and my first scooter when he was an infant. The infant phase was tough. When we were at home I spent most of my time on the floor with my boys. Playing, reading, changing diapers were all things that we did on the floor. There was a very small period of time when I was able to push a stroller. When we were out and about it was my husband, dad or a friend was pushing the stroller until they grew big and robust enough to sit on my lap while I was moving. Since then, when my youngest was an infant, I’ve parented exclusively from a seated position.

First off, I often feel that other parents are the worst. I’ve gotten used to erasure and to being dismissed.

I’ve seen the disabled parking spots occupied by the able-bodied when I’ve gone to pick up my kids from preschool, the offending parents shrugging it off by saying it was just to pick up the kids, never mind the fact that that I had kids to pick up as well.

Public playrooms have been physically blocked off by furniture so that other people’s kids can play. I’ve lost count of the number of times I’ve been blocked or run off the sidewalk by strollers or large groups of other parents because I’m either invisible or assumed to not be a parent. People jump in front of me in lines, which wouldn’t bother me as much if I didn’t have my children with me. It’s hard and it hurts, but it’s worth it.

Though not as painful, the day-to-day operations of parenting while disabled require serious discipline. Being organized doesn’t come naturally to me, but it’s essential for getting things done that I can’t physically do. Each day begins the night before, I make sure my boys’ homework is done and in their backpacks, get their clothes for the following morning, and make sure anything required for activities for the next day is either accessible to me or visible to my husband or kids. I have to have an inventory of every single thing so that my husband, who works from home, wakes my boys and makes them breakfast and lunch, doesn’t have to. Once the boys are ready to go my husband gets me out of bed. I dress as quickly as I can, whilst yelling at the boys to brush their teeth, comb their hair and put on shoes/coats/backpacks so we can get out the door. I’m a loud person so I’m pretty sure I’d be a yelling parent even if I wasn’t disabled, but I have to yell a lot to make sure I’m heard since I can’t always get in their faces to move things along.

We are fortunate to live within walking distance of my boys’ school as well as the majority of their activities so me not being able to drive anymore is less of an issue than it could be. It also allows me to participate in a way that would be difficult for many disabled parents. An example being that I volunteered in their classes until last year, when I thought that my Multiple Sclerosis had advanced to the point where I felt I couldn’t actually help anymore.

It’s convenient, albeit bittersweet, that my boys’ demands on me physically have diminished as my disability has worsened. The little one is still a frequent catcher of rides on my lap, as well as doing his homework while using me as a chair, something he calls the “mama chair.” The big one is already a grumpy tween at 10 but still sometimes sits on my lap when no one is looking. This is the time that terrified me when my boys were babies and I was more able-bodied – when they would be old enough to fully get how different I was from other moms and maybe feel ashamed of me. But my sweet boys have shown me that my love for them and my determination to parent well made them happy, well adjusted, and just a little bit embarrassed by my wheels.

 

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