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Lena Maun-DeSantis's daughter Maren enjoying a day out skiing.

Maren enjoying a day out skiing

Last year, Lena DeSantis mentioned to me that she enjoyed taking her daughter Maren, cross-country skiing. Like Magnolia, Maren has Rett syndrome. Rett syndrome can impact individuals differently.

Magnolia and Maren both have the same mutation R168X but are impacted in different ways. Maren has less mobility than Magnolia. Finding ways for her to enjoy outdoor sports was a priority for the DeSantis family. Cross-country skiing was a sport Lena was able to adapt for their family, which was inclusive for both Maren and her twin brother Ben. For many families that have a complex child as well as a typical one, finding things that work for both can be tricky. There is a balance we have to find, in order to have less chaos in our lives.

For many families that have a complex child as well as a typical one, finding things that work for both can be tricky. There is a balance we have to find, in order to have less chaos in our lives.

Jenny Tesler, Magnolia’s Mom

I never had much interest in cross-country skiing. Turns out, I was missing out on a really fun activity. Conceptually, adapting for cross-country skiing was easy. I knew what gear Lena used and figured using similar gear with some adaptations would work well for us. Lena has a Benecykl , which has a bar attachment with a harness. Our Wike trailer, which we use for bike riding, did not. In order to pull Magnolia's bike trailer with her in it, we needed to be able to add attachments and a harness. Neither AJ nor myself are welders, so a vest with straps connected to the trailer seemed like the next best thing. In order to further adapt the trailer for the conditions we purchased Polar Skis.

Living in Connecticut, we were able to test the trailer in our own snow-covered backyard before we went out on a real trail. AJ felt pretty good about pulling it. The trailer had no problem, gliding and difficulty seemed minimal. As a back up, I practiced pushing the trailer through the snow instead of pulling, and it was fairly easy. Neither of us had ever cross-country skied before, so it seemed the only thing that would keep us from being successful was our own athletic ability. We felt ready to adventure.

On the day we were to meet up with the DeSantis family, we woke up to a beautiful fresh snowstorm. Weather looked optimal for our adventure. We packed up the car with all of our equipment and met Lena and Maren at the snow covered trails. It was so wonderful to meet Lena and Maren in person. Their adventure gear was impressive. I’ll admit I was a little jealous. Our trailer seemed bulky, janky, and I was worried about AJ’s ability to pull it.

Jenny, Lena, and Maren skiing together

Jenny, Lena, and Maren skiing together

Turns out, the skis on the trailer worked very well on the flat snow covered trails. Going uphill with the harness and straps was difficult for AJ, but going downhill somehow seemed harder. While the bars on Lena’s trailer kept her gear steady and under control, our trailer was harder to navigate. Downhill, the trailer moved faster than the skier and AJ didn’t have any control of Maggie’s speed. It took two people to make sure Magnolia wasn’t terribly unsafe. We all had a great laugh about it, though, including Maggie. I would love to get the right gear and have this as a hobby for Magnolia and myself. It was definitely worth the effort.

We learned we actually love to cross country ski. Being on the trails, surrounded by nature was calming. While the right set up for this activity isn’t free like some other adaptive activities might be, if you live in a place where cross country skiing is easily accessible, it definitely was worth the effort.

Episode 3: Ice Skating With the Bryman Family

Magnolia and the Bryman family conquer ice skating, one of the most challenging activities for the Teslers to adapt so far.