Cooper was born in the fall of 2018. He is our second child and we couldn’t wait to watch him and his big sister Maisey run around and play together. Cooper’s first year was like most other children; he was hitting each milestone on time and we had no concerns about his development. Until we started noticing that he was no longer bearing weight on his legs. We started physical therapy and assumed he’d be back on track in just a few months. Except he wasn’t.
At first, he was diagnosed with hypotonia (low muscle tone) which was mostly in his legs. And then he began to lose some of the skills he once excelled at. Such as rolling and even sitting up. By March 2020, he was no longer able to hold his head up when laying on his belly. We saw countless doctors and had numerous tests done. Finally, at the end of March, we received a diagnosis. Cooper was born with a rare genetic disease called Spinal Muscular Atrophy (SMA). This disease causes motor neurons (the things that tell our muscles how to work and what to do) to die.
Luckily, there are treatments available for those affected by SMA. Cooper was able to receive a treatment called Zolgensma which has stopped the progression of his disease and even allowed him to gain quite a bit of strength back! But we don’t yet know exactly how much strength he’ll gain back and what his future will look like. SMA has robbed him of his ability to do so many things. He isn’t yet able to reach above his head, he’s never been able to stand, and we aren’t sure if he’ll ever walk.
This disease has been devastating to our family as we begin to realize our son’s future is going to be drastically different than we had ever expected. As a mother, I’m constantly worried about how he’ll fit in as he grows up. I never want him to feel left out or like he isn’t able to do something that other kids can. This includes playing on a playground. Our daughter loves playgrounds. We have always tried to visit the new playgrounds in our area. My husband and I love watching her run around and explore each new park.
But now things are a little different. We will no longer be able to stop at any playground. We have to make sure it will be accessible for Cooper who will almost certainly be in a wheelchair, at least for a little while.
Of course, he’s small enough now for my husband or I to carry him but what if there isn’t a swing he can be strapped into? He doesn’t have the core or arm strength to hold himself on a swing. Slides are out of the question unless they’re big enough for my husband or me to go down with Cooper on our laps. Sure, we can carry him up the stairs and walk him through each structure. But once he’s old enough for a wheelchair he won’t be able to get onto the structure if there’s not a ramp. Wheelchairs and stairs aren’t really a good combination…
So now we’re faced with a dilemma. We can take our daughter to a playground, watch her play and be a kid, but what about Cooper? It isn’t fair to him to sit on the sidelines while his sister gets to play. But how do we tell our five-year-old daughter that she can’t go to a playground because her brother has a disability and won’t be able to join in? That isn’t fair to her either.
Inclusive playgrounds are our only options at this point. And unfortunately, they just aren’t that common. At least not yet. My hope is that once people see how much fun can be had on a playground built for all abilities, they start to become standard in every neighborhood and community.
Our children deserve it.
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