"No Child Left Inside" · Accessibility · Adaptive Adventure · Adaptive Parenting (an adventure itself) · Conversations with Kids · Family life · Nature-Based Learning · Through the Power of Sport

Christopher and Dana Reeve Blog, November 10, 2017: “Atrophy vs. Ass-trophy”

We began to realize how much our kids listen to our conversations when our son mentioned to Geoff he was worried about getting a pressure sore on his bum from new pants with buttons on the pockets. I tried to explain that Dad is afraid of pressure sores because he doesn’t have much of a bum due to muscle loss from having a spinal cord injury. Our little boy knows the word ATROPHY but sometimes mistakenly–accidentally- calls it ASSTROPHY, which is sort of, incidentally, what his dad has. Our son has ample flesh on his rear so pressure sores are an unrealistic symptom of the fact that he doesn’t like sitting on the rug during circle time at school.

Geoff has to be very careful when he travels because of spending time anywhere but on his custom wheelchair cushion. So, he flew out of Manchester, NH this morning en route to Colorado for PSIA (Professional Ski Instructors Association) National Team Training

where he is the coach of the PSIA

Geoff and kids on a recent apple picking adventure at Windy Ridge Orchard in Haverhill, NH

Adaptive Team. He will love most every minute beyond the traveling part with a mono ski and giant ski bag and luggage. These are not easy traveling companions. Most of the time, people in airports are super helpful to him, especially at our local Manchester-Boston Airport. With security issues though, it’s impossible to drop his luggage off at bigger airports and go park his car. I used to take him to the airport to unload/load, etc, but once we had children, those 3 AM trips ended for me.

When the kids were babies, I hated when Geoff traveled for work. He, of course, missed us, but recognized traveling was easier in some ways than staying at our house. Our daughter did not (and often still does not) sleep through the night. Never had I been so tired in my life as when our kids were newborn and 1 or 1 and 2 or even 2 and 3 for that matter. I felt overwhelmed, exhausted, and irritable, so when he left for these trips out west, I envisioned them to be fabulous man– ski-cations, complete with time at the hot tub, fresh powder, and beers out every night. These details do sometimes occur, but Geoff and his teammates also put in a ridiculous amount of work while they are housed together. Ten years later, as Geoff is in the midst of his 3rd term working at the National PSIA level, I’m starting to get the bigger picture.

We’ve come out of the dark cloud of babyhood and toddlerhood and survived. I know, I know, a terrible thing to say about a precious and altogether quick period of our children’s development– but for a full time working mom whose often traveling husband who could not run upstairs in the middle of the night to share some of the late-night responsibilities easily, we could NOT wait for the days when they had words to communicate their needs and enough sense to not be flight risks. When they were babies, our kids rarely noticed when either of us was gone- it was as if we had gone to the bathroom and would return momentarily. They had snuggling grandparents and a childcare center with teachers who loved them. But now, the leaving part is harder on Geoff and our kiddos. We make charts which delineate the nights/ days as they pass, so they know how many sleeps are left to go before Dad comes home again. We facetime and look at maps of mountains we’ve never skied at online and wonder which slope he is on- or if he is teaching a clinic or problem solving some kind of disability issue or working on a piece of adaptive equipment. They wonder when our “skiing snow” will arrive. Skiing snow, for those of you who don’t know, is the snow that comes down and stays, not just the first few fall squalls which drop an inch or two and melt away. “Will we be skiing by Halloween?” they ask. Not likely. But there is always Thanksgiving right around the corner.

Fall is short here in northern NH, and we love that our kids can’t wait for our skis to slide on snow; for the sleds to make the rounds of local heaps and hills; for our snowshoes to hike the forest along the river in our backyard; for crockpot Friday night dinners with family and friends; and most importantly for Dad to return home safely from whatever snow he sails in from.

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 7 and 6. Please check out her novel True North, website http://www.heatherkrill.com, and @heatherkrill1 on Twitter.

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