Embracing the Slopes

By Jill Hunter

I used to love winter.  I grew up in New Hampshire, and when my daughter Elisabeth was born in New Mexico over 9 years ago, we moved back to my home state.  Both my husband and I have a fondness for the outdoors and we wanted our daughter to grow up with the same appreciation of nature and enjoy the four beautiful seasons that New Hampshire has to offer.  I was especially excited to relive my fun memories of wintertime with my daughter.  I looked forward to playing in the snow, making snow angels and snowmen with her, taking her sledding, and eventually skiing and skating.  After all, if you live in a place that has snow on the ground for 5 months of the year, you better find a way to enjoy it.

Shortly after Elisabeth’s first birthday, she was diagnosed with CMD.  As the gravity of the diagnosis sank in, we began to realize that a lot of the dreams we had for Elisabeth were threatened.  Our lives and perspectives of the future changed drastically.  And so did my feelings about winter in New Hampshire.

When Elisabeth was a little girl, we did our best to live a “normal” life and give her the same experiences we enjoyed as children.  She could barely move once we bundled her up in her heavy snow clothes.  Her father designed a special sled to make her feel more secure and give her more support.  And he made various paths around the yard with the snow blower to help her get around.  I became Elisabeth’s arms and legs.  I would drag her across the snowy yard in a sled, and she would tell me what to do.   I would make a snowman under her direction.  I would build a snow fort as she requested.  I would attempt to take her sledding, although she never enjoyed it too much.  She would become cold easily since she couldn’t move around to keep warm.  Sometimes I would bring snow into the house in a large container and let her play with it on the kitchen table.

As Elisabeth has gotten older, winter has become even more of an obstacle for us.  Between the heavy clothes to keep warm, the icy and snowy sidewalks, the slushy parking lots and cold air, getting out has become more difficult.  As Elisabeth has grown up, she has also become more aware of all the fun that winter holds for her peers.  At times she is frustrated and angry that she can’t do all the same things her friends do.  When the first flakes began to fly this winter, Elisabeth announced with a groan, “I wish we could skip winter.”  I understood why she felt this way, but it made me feel sad.  I still get excited when I see the first flakes of winter arrive.  I wanted her to feel the same excitement that I do.

Since moving to a warmer climate isn’t an option for us, we decided to work harder to find a way to make winter a little more fun for Elisabeth.  And we succeeded!  This winter Elisabeth had the opportunity to go downhill skiing through the Adaptive Ski Program at Bretton Woods in New Hampshire.  With a little trepidation, she was strapped into a sit ski and tethered down the mountain. At first she was quite nervous and not so sure she wanted to do this.  But after one run, she became a speed demon.  She was skiing top to bottom, leaning into turns, carving her skis into the snow, and squealing with joy!  And she was so proud to share her stories of the different trails she skied and how fast she went.  Now we have a winter activity that the whole family can enjoy together!

Winter still presents obstacles that we have not yet overcome.  However, with a positive attitude, a little creativity, and the generosity of others, we are finding ways to make the season a little more enjoyable for our daughter and our family.  We would highly recommend the adaptive ski programs offered at many major ski areas. The volunteers who tether the skiers down the mountain have special training and three rules for every skier: be safe, learn something new, and have fun.  Most places offer their services for free the first time.  Elisabeth is already looking forward to her next day of skiing!

 

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  • Congenital Muscular Dystrophy

    A group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older. Learn more...

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