All children should get to play

Today I took the girls to the playground by our old house and it was so easy. I mean really easy. I didn’t have a stroller. Just carried Willa and held Eleanora’s hand. Walked right into the park, down some bumps, through the bark. Plopped them into the swings. Pushed. Cheered. Smiled at them until they were done. Then we walked through the bark with ease to the slide. Lifted Willa to the top while E climbed up on her own and down they went. Over and over again.

We took Gwendolyn to this same playground – until we started to avoid it. It was her neighborhood park and we walked or drove by it daily. But let me explain how our experience differed.

First, the bumps and steps would bop her around or were a full barrier. Next, her wheelchair would get stuck in the bark before we were anywhere near the play equipment. Bill and I would each take an end and lift her wheelchair over the steps, over all of the bark to the swing. Then we’d take off her pulse ox (which meant we didn’t know how well she was doing) and position her suction machine ready for an emergency. I would sit on the swing and then Bill would lift her out of her wheelchair and place her in my lap. He’d take her breathing machine off the wheelchair and hold it on his shoulder and push us as far as he could without it pulling her breathing tube off. Just like every child, Gwendolyn loved it. She’s light up. And giggle as the wind blew her hair. And I’d cheer and smile, all while watching for the vaguest sign of distress.

On a good day, we’d also tackle the slide. This meant taking deep breaths of courage, removing her breathing machine (knowing she could only manage for a limited time without it), walking up the stairs while navigating the length of her body in a flat as possible position, repositioning at the top of the slide, and going for it. She’d squeal with delight. Once was always enough – for us, though not her. Then we’d need to reload her and all of her equipment and carry her wheelchair over obstacles once again. As she grew, this became more and more challenging. And it broke our hearts.

Today I felt grateful and devastated. All children should get to play.

This was first shared on @gsfoundation Instagram