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Jenny's Recap: Spotlight
Ruby and her dad skiing

Ruby and her dad skiing

We have always loved to ski but we didn't think skiing alongside Magnolia would be realized when she was first diagnosed. We even avoided it when she was small, struggling to figure out how she would be able to do it. Then we discovered that some mountains had adapted ski programs for those with disabilities. These programs have been such a gift to our family and now one of Magnolia's favorite adapted activities is downhill snow skiing.

For us, having the ability to ski along with Magnolia has been really fun. Luckily if you can't ski or don't want to, the adapted ski programs are a fantastic way to let your individual with Rett syndrome have a great time on the mountain, while you sit back and have some hot chocolate in the ski lodge. We have found the adapted programs to be very welcoming and inclusive. They want you to have a great time, no matter what that looks like.

Then we met the Randol family who push the limits of what we thought was possible. Jeremy and Jesse Randol have three kids, their oldest daughter Ruby is 15 years old and has Rett syndrome.

When looking into ways to have fun as a family, the Randols made skiing a priority. Jeremy, like AJ, grew up skiing in the Northeast, and they both can ski very well. But, while skiing solo with Maggie, without the aid of an adapted program never even dawned on us, the Randols realized they would be able to ski even more, if they had their own adapted sit ski sled for Ruby.

The Teslers and Randols after a fun day of downhill skiing.

The crew after a fun ski day

The NEHSA program at Ski Sunapee in New Hampshire actually trains you to be able to push the sled yourself, so you truly can ski as a family. Now, the Randol family gets to go out whenever they have the urge to ski together. Pretty cool. Our son, Grayden has gotten very into skiing, so I can definitely see our family pursuing a similar goal in the future.

The thing that I do still worry about when out in the elements is Maggie’s temperature regulation. She has always had difficulties regulating extreme temperatures. She is miserable in heat and her hands and feet turn purple when she is cold. Talking with the Randol family, we found out this was the same for Ruby. Since they ski all the time with Ruby, they really have been able to figure out how to adapt to the cold weather on the mountain. They put her gloved hands into these muffs that are typically used by hunters. Ruby was using it on the sit ski and her hands were warm and also safe. While Magnolia’s arms tend to fall to the side of the sled, Ruby’s were tucked in. This simple adjustment will make this activity even safer for her.

Talking with the Randol family, we found out this was the same for Ruby. Since they ski all the time with Ruby, they really have been able to figure out how to adapt to the cold weather on the mountain.

Jenny Tesler, Magnolia's Mom

Figuring out how to adapt to the extreme cold in order to be able ski has been a process for us. The right clothes, the correct outerwear, layered appropriately and not too bulky while also keeping her warm. There has been a huge learning curve. It’s a lot of work, a lot of gear but it’s truly worth it.

When it came time to ski, we were all very excited, but Magnolia was getting uncomfortable and very vocal about it. Too much waiting and not enough fun. So, we hustled to the mountain. Once we were up on the mountain, she was having a great time. The NEHSA volunteers and Jeremy knew that both Maggie and Ruby loved to go fast and neither girl was disappointed. I don’t think I have ever skied that fast with Magnolia. I told AJ that next time he has to push Maggie’s sled. He told me he’d do it but we’d have to go slow. Maggie didn’t love that response. These girls love adventure and adrenaline.

Episode 2: Cross-Country Skiing With the DeSantis Family

The adventurous DeSantis family teaches Magnolia how she can adapt her equipment for cross-country skiing.