When I was young, my mother didn’t work. Until we went to school, she stayed at home with us, and took care of neighborhood children during the day. There were two children who lived about a block away. The eldest was three years younger than me, and the youngest six. Both boys, Marcus* and Lyle*. I wasn’t at home with them – by four I was already in kindergarten. They spent a lot of time with my sister, but we spent our afternoons and weekends together.
I lived in a typical mid-west neighborhood. It was a new subdivision – the neighbors all knew each other and had regular pot-luck parties. We all moved in around the same time, and all of the kids were more or less the same age. There were a few couples with older children who became babysitters for my sister and I. And the younger kids I babysat when I got older. Including Marcus and Lyle.
While we were young though, we raced up the street on our bikes and hot wheels. We had picnics on our big plastic picnic table. One year, we built a big fort in the creek. Another time, my dad strung up a wall sized piece of paper and set us out with paint and brushes to make a big mural.
My parents decided we needed a bigger house when I was about 10. We’d been living in a side-split, and it was time to move out on our own. We ended up only moving a block away. A house with a larger yard. The following summer, we got a pool. And the neighbors down the street moved in right next door.
As we grew up together, my sister and I spent a lot of time with Marcus and Lyle. We went to movies, to the mall, to get ice cream – struck out independent from our parents. We all went out together on Halloween. We were normal kids, with a normal childhood.
Except we weren’t.
My memory isn’t completely clear, but when I was about eight, my parents sat down with me and my sister to discuss Marcus. I suspect now that my parents had been aware of the diagnosis for quite some time – and that as the symptoms were starting to become more prevalent, they had to let us in. I remember my father crying during the conversation. I can’t remember my mother speaking at all. I think it was too difficult for her to even think about, let alone discuss.
Marcus had Muscular Dystrophy.At the time, I had no idea what it was. Or how much Marcus’ life was gong to change. Of course, when you’re that young, your parents try to give you information but you only absorb what you can. I know now that Muscular Dystrophy a group of muscle diseases that causes a degeneration in the musculoskeletal system. The movement of people affected by the disease is hampered by progressive muscle weakness. Basically, your body slowly collapses in on itself. Your muscles, your organs. They’re all affected. The strain that my friend had, Duschene’s Muscular Dystrophy, affects more boys than girls. At the time I was told about it, people affected by the disease didn’t live much past the age of sixteen. My parents told us that we didn’t have to worry that we’d become “infected”. It wasn’t that type of disease.
Eventually, I understood that it meant that we had to be particularly careful with Marcus. I can’t recall how soon it was before he ended up in a wheelchair – but I don’t think it was too long. I do know that when they moved in next door to us, he would have been about seven, and he was in a manual push wheelchair a lot of the time. I remember shortly after he first got it, someone forgot to set the brakes and he rolled down the driveway and was launched out of the chair. His face was pretty scraped up – but after that he always wore a seatbelt and was really careful about the brakes.Eventually, Marcus got an electric chair. They had a charity banquet to raise funds to renovate the home – add a ramp and an elevator, create a special room for him in the basement that was fully wheelchair accessible.
He had special summer camps. Regular physical therapy. He couldn’t swim – but spent a lot of time in the summer floating in our pool.
I like to think it didn’t change our relationship much. We treated him like a regular kid. We still played rough and tumble. While our home was buing built, my father had taken us in to see what was going on. We crawled all over the skeletal half finished structure. I realize now that it was technically trespassing – but at the time, I was fascinated by the process. And I remember taking Lyle and Marcus to see a similar house up the street on the weekend.
By that time, Marcus’ body had degnerated quite a bit. He didn’t have control over his limbs. But he wanted to see. So I carried and pushed and pulled him through the house so he could see it. We got covered in dirt, and as I recall, I got a nasty sliver. But we had an amazing time.
When he got his electric wheelchair, we took a road trip one day. There was a farm store eight or ten miles from our houses. I rode my bike, he took his chair, and we headed out to get some cookies. I could hold on to the handle if I got tired and he’d pull me along. I remember it being a sunny day. I can still feel the wind on my face if I think hard enough.
I look at my own children and wonder how our parents were so comfortable with us just disappearing for a couple of hours. I couldn’t have been more than eleven or twelve, and he was in a wheelchair. I’m reasonably certain we didn’t tell them where we were going. They would have had no idea where to look for us if we didn’t come back.
Halloween – well that was our favorite holiday. We always went out together. Every year. From the time we were little kids going out with our parents – until the time when I was old enough to take us all out alone. We’d spend months deciding what we were going to be. As time passed, Marcus’ costume had to be altered to fit over his bulky wheelchair. He always wanted to be something “normal”. He didn’t want to incorporate the chair. He wanted to be himself – just like all the other kids. One year a vampire. Another a super hero. And we always went out together. I have such happy memories of Halloween.
We started to drift apart as my parents separated when I was fourteen. By fifteen, I’d moved a couple of miles away. I babysat for Lyle and Marcus from time to time, but we didn’t go to the same school, and weren’t seeing each other daily any more. I’d still make the trip to take them out for Halloween though. Until they decided they were “too old”.
When I was eighteen, I was going to College. The campus had a medical school and Children’s Hospital on site, and as it happened, it was where Marcus went to have metal rods put into his back in an attempt to keep his torso from collapsing over on itself. He was in hospital for fourteen days. And as I was on campus for ten of those days, I visited and spelled his mother for a couple of hours a day.
We drifted quite a bit by then – but it was like we’d never been apart. He was a sweet boy. He loved Star Trek. We talked about horror films and played cards and computer games. We laughed a lot. He had a fantastic sense of humor. And through it all – a positive attitude. He didn’t seem limited by his condition. He was just happy most of the time. I’m sure it was frustrating for him to feel his limbs slowly seize and not respond any more. I don’t know that I wouldn’t have become depressed in the same situation. But he never was. Ever. Even in the hospital.
I’m glad we had that time together. I got busy again with school and life…and I didn’t see him again after the hospital. The following November, he died. He developed pneumonia and his lungs collapsed.
His family was never the same after that. His father died of a heart attack a few years later. His mother was just a shell of her former self. His brother was deeply affected as well. Not just because of his death. But also because he’d always lived in the shadow of his brother’s illness. His mother eventually died as well. Of cancer. I’ve lost track of Lyle.
Now I’m left only with memories. Mostly happy memories. They generally hit me around this time. As Halloween approaches. I’m only crying right now because the memories were too few. I’m happy though – because I have them.
If you are able to help, in any way, please consider donating money or time to the Muscular Dystrophy Association. Their website is http://mda.org. I hope that we can fight this disease. And stop this from happening to other children like Marcus.
|Image Credit: (Edited) jannoon028 / freedigitalphotos.net