Comunidad de información y apoyo para las personas que viven con parálisis y sus cuidadores en español.
Happy New Year-- on seeing 2020
I’m not clairvoyant; nor am I a fortune teller, magician, or prophet of biblical proportions; however, chances are pretty good that 2020 will be a year of joy and sadness, hope and disappointment, sickness and health, miracle and tragedy, conflict and peace. Mostly though, 2020 will be as real as real gets for us all-- those with disabilities, those who support them, as well as those who stand in the way of accessibility progress. By real, we are talking about the flaws and imperfections which shape our character, our decisions, and the lives we build together as families living with disability.
We kicked off the last decade by having a January baby, a miracle of In Vitro Fertilization whose embryo had been frozen for about 14 months prior to actually being implanted in our collective uterus. His birth was our miracle. Newly 10 years old, hot headed and cold blooded, he is essentially 105 pounds of sheer energy and emotion with a passion for all things outside and hardly ever wears a shirt, even in winter. My husband Geoff claims it’s because he was born of ice, aptly nicknamed Krill-sicle, kept frozen and then thawed when our expensive fertility gods and goddesses aka medical professionals believed the time was right.
This New Year’s Eve, he crashed on some ice in his ski race.He skied his way down to us and fell apart in my arms sobbing, telling me between dramatic gasps he would not be able to do his second run, that he thought he had a concussion, and it would not be safe to make him ski any more that day. His little heart hurt way more than his head.One decade old with first world disappointment feeling like the end of his world, at least in that moment. One decade old and disappointment is healed with a hot chocolate and some greasy onion rings. Feeling better, he faced the hill, back out with his team and tackled his second run, crossing the finish line with a smile and some flying snow for flair.If only every one of life’s disappointments could be fixed so easily.
Just today one of my ninth-grade students told me that he knew exactly what was best for him.“You can say what you want, but I’m doing this because it’s what feels right.” And what feels right at 10 or 14 or even 22 might not be the choice we make at 30 or 40 or 80. So how do we know in the moment? How do we see the future consequences unfold? We don’t. All we can do is practice motor planning for life: the way our mind, body, and/or heart considers its motor responses to inside and outside stimuli. Physical therapists and occupational therapists are experts with motor planning, but the rest of us? The English teachers in the world? Not so much. All we can do is hope that the childhood loss or disappointment and the way we let kids be sad for a little while and figure out how to get back prepares them for the future.
Watching someone you love face disappointment or rejection in any form is hard but necessary. Dealing with adversity, overcoming disappointment even as children, is motor planning for later stages of life when a loss may be more tragic or complete. We let our kids skip school to ski with Geoff today as it was his day off and my brother’s family was also in town. He called from the mountain parking lot to check in, calmly speaking to me, and I could hear our kids arguing in the background. Instinctively, I knew they were trying to take his wheelchair in the back of Geoff’s car around their skis and ski bags. These days are good for them when I’m not around to problem solve. Between the two of them, they have been able to take Geoff’s manual wheelchair apart and put it back together since they were 4 and 5 years old. Up until that point, the three of them couldn’t travel anywhere without me because of space, giant car seats, etc. “They will figure it out,” Geoff reminds me, “they just have to see where there is room.But because they are short, that is hard to do. I have the same problem some days.” As do I. We are all shorter than others on some days so our family’s New Year’s Wish (because I hate resolutions) is for better vision in 2020.
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