"No Child Left Inside" · Accessibility · Adaptive Adventure · Adaptive Parenting (an adventure itself) · Conversations with Kids · Education · Family life · Growing Up New Hampshire · Through the Power of Sport

Christopher and Dana Reeve Foundation Blog: Making the Extra Hours of Daylight Count, April 5, 2018

Spring. Easter. Life. Renewal. Redemption. Mud. Lots of mud. Kids in our neck of the woods are used to Easter egg hunts with feet of snow on the ground; tulips, daffodils and, crocuses are generally sprinkled with spring snow before truly given a chance to bloom. We ride our bikes and scooters and sleds all in the same day, wearing ski helmets instead of bike helmets as they are warmer. One day can be 70 and the next is 25, but always the sun shines brightly and lighter and longer into the evening.

As the soil thaws, we think ahead to the joy of barbecuing outside with friends, fishing in our little neighborhood pond, water skiing on the lake, and spending time off together as a family. But until the snow melts all the way, we find ourselves in this frustrating kind of spring purgatory known as Mud Season. The mountains close so skiing is out; it’s not quite warm enough for handcycling, and water skiing is still months away. Until then, we struggle with pavement activities, which reminds me of what it must be like all the time for people living in the city– or for people’s wheelchairs who lack the big knobby tires Geoff uses to move across grass or snow or uneven services.

He just received a new wheelchair after seven years of beating the crap out of this one. In fact, four winters ago at our son’s sledding birthday party, a little boy crashed with his sled into Geoff sitting in his wheelchair. Conditions were icy, a worst-case scenario. Anyway, the force of the boy on the sled snapped Geoff’s axle in half right where the wheels attach. Fortunately, we had a welder friend who used some old-fashioned ingenuity to put Humpty’s chair back together again. But for years, I’ve been waiting for the axle to snap somewhere unexpectedly, perhaps when we are visiting my brother on the Vineyard or he has traveled out west on an airplane.

Long story short, I’d been on his case for literal YEARS to start the process for a new chair. And, well, anyone who has done this once knows the process is not easy or short– especially when you are advocating for the chair that best fits your lifestyle needs. Then seven months later our new wheelchair arrives, and it is so exciting because for a little while during that honeymoon period I don’t imagine anything snapping or falling off. I imagine what it must be like for power chair operators when the electronics required must be maintained even more carefully than a manual chair. Or, how gross is this, when his little front casters stop moving well because my long hair is woven so tightly around the bearings. Disgusting. At least twice a year, he has to take them apart to clean the hair out or replace the bearings. All the little things other people have probably never given thought to about wheelchair maintenance. But he never complains; he just does what needs to be done because those wheels are like his feet. If he had gum on the bottom of shoe, he wouldn’t walk around the house with it on there. Even with good health insurance, we still must pay $700 some odd dollars for this “new pair of shoes” for Geoff to move around.

So in the above photo, our 8 year old is trying to use his new Rip-stick. There isn’t a lot of ripping happening yet, but I watch the two of them do this balancing dance in the driveway. Geoff uses one hand on one wheel to place pressure so he doesn’t flip over or forward while Carver places one hand on his other wheel or his shoulder to help him to balance. The Rip-Stick uses forward momentum, I think, to help with the balancing act. From afar, the struggle doesn’t look worth it, but don’t tell that to the two of them out in the driveway figuring it out together. They are having the time of their lives. I can’t see their faces, but I know they are smiling. Daddy has a brand new wheelchair, one he isn’t worried about breaking the axle while trying to help his 80-pound son with a foundation to learn from.

I let them do their thing and return inside to vacuum the endless sand that has dried from the mud we all carry inside during this time of year. Paw prints, boot prints of all sizes, and wheelchair tracks straight into the kitchen. Geoff will tell you that a clean wheelchair hasn’t seen a whole lot of fun, and he is right.

Heather Krill is a writer- wife- teacher-mom who lives in the White Mountains of NH with her husband, Geoff, a paraplegic and professional skier, and their two children, Carver and Greta who are 8 and almost 7.Please check out her novel True North, website www.heatherkrill.com, author FB page Heather Krill, @heatherkrill1 on Twitter, and, most recently added in the New Year, her Youtube channel “Writing from the Front.” 

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