Last Spring while on a walk at a local farm to see the horses and climb through the haylofts and crawl over the farm equipment, we got caught in a flash rain storm. It rolled in while we were racing down the gravel road toward the distant parking lot. It was miles away. Or at least it felt like it. Charlie, my oldest who has cerebral palsy, was in the jogging stroller. I was pushing it into the wind at a heavy sprint. When the rain blew, it blew in hard and fast and cold, like winter had been saving it up for one last hurrah. We took shelter on the porch of one of the abandoned farmhouses and watched as the wind ripped a metal sign right off its post. The jogging stroller that we had abandoned by the stairs flipped over in the mud. My spouse disappeared into the chaos to fetch our van. I clutched my kids and turned their heads away from the spattering rain. We were Dorothy in Kansas right before the technicolor.
Just as we clambered into the van, the clouds broke open and the sun came out. We squeegeed out our shirts and shorts while our sneakers squeaked and the bits of grass stuck to our legs slowly dried and fell off between the seats. We had survived the storm. I looked in the rearview mirror at the laughing faces of my kids. Their cheeks were flushed with adrenaline (and probably a little residual fear) and they cheered and then asked if we could get tacos. It was a mostly ordinary event. Who hasn’t gotten caught in a summer rainstorm?
But it was extraordinary to Charlie. Because this kid really hadn’t ever experienced drenching rain or gusting winds – he hadn’t felt the elements in such a visceral way. Why? When he was an infant, after almost three months in the NICU, he came home with a tracheotomy and a g-tube. You don’t take a baby with that many vulnerabilities out in a storm. He didn’t even take a bath that wasn’t a sponge bath until he was two after the trach was removed. Also, he was prone to seizures. We were sensitive to what even a small cold could trigger. On top of all that, once Charlie was diagnosed with cerebral palsy, his physical therapist and doctors recommended standers, supported chairs, and eventually, his wheelchair. None of this very expensive equipment that insurance only partly covered was built for the outdoors. The wheels on his chair get stuck in the mud and slip on the ice. His stander and supported chair are heavy and do not fit in the van. We cannot afford for Charlie’s accoutrements to break down because that is a breakdown of his freedom.
However, after seeing his face, blissful and wet after that rainstorm, we have begun to find other workarounds for getting him out in the elements to make a mess. We all need the reset that a good drench or stomp through the mud can bring. Forget neat and tidy. Sometimes you need to smell like sweat and dirt. So, when we had a snowstorm that closed schools for a week this winter, a rare thing in Tennessee, we took him sledding. I held his long body between my legs and we whooshed down the slope and then, when we crashed into the ditch exactly as predicted, he applauded with delight. He had snow up his nose and we had lost his hat halfway up the hill, but he still signed for more. This autumn when the leaves fell from the oak trees in a damp heap, we lay him in it, his own heap, to throw and crinkle and crunch leaves between his fingers until there was not one crevice of clothing free from debris. And when it really poured down rain and we had a long Saturday ahead of us, we camped out in the garage with books and iPads and a picnic lunch, because sometimes just being near the elements is soothing too.
What I wish for Charlie’s life is for it to be full. And for it to be full, it needs to be filled with the kinds of experiences we all store up to remember in later years. Warm pancakes on Sundays. Spring rainstorms in April. Wet mittens while sledding. And yes, a lot of mess.
Jamie Sumner is a special needs mom, author and blogger.
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