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Lizzie riding the waves

Lizzie riding the waves

The first time Magnolia went waterskiing, I was not okay. Maggie wouldn’t be able to stand on skis, protect herself in the water, hold on to the rope, or do any of the things I thought were required for waterskiing. AJ had to convince me it would be safe. He told me about the organization LOF Adaptive Skiers, the equipment they used (sit ski with outriggers), and all the precautions they took. I relented and agreed to let Maggie try it on one condition—AJ had to ride the boat and make sure she was safe. He had one condition also—I was not allowed to watch since he didn’t want my anxiety to rub off on Maggie.

Anxiety when jumping into new circumstances is very real for parents of children with disabilities. Our minds swirl around the possibilities of the unknown. This anxiety keeps so many of us parents in the safe zone. In uncertain situations, we think about all of the things that could go wrong, what our children can’t do, instead of what they can. When you have lived in the trenches, it’s tough to get our minds around certain adventures. Water skiing was that adventure for me. I just couldn’t wrap my brain around it. Turns out, it is one of Magnolia’s favorite activities.As a result, when we were planning out which adventures to do, this was top of the list. AJ contacted the nonprofit organization LOF Adaptive Skiers and asked if they would be able to work with us. They jumped at the chance to give Magnolia and Lizzie a fun day.

The families cheering from the dock

Lizzie Weaver is 15 years old, and we have been watching her grow up since she was 5 years old. Her mom, Carrie, and I have run half marathons together to raise money for Rett syndrome. We have talked and messaged each other over the years. I feel like I know the Weaver family, even though we have never lived in the same place together. Spending the day together was such a lovely experience.

It's fun to adventure, and we don't get to adventure very often. So when you get to adventure, you should.

Carrie Weaver, Lizzie’s Mom

When it came time to water ski, I was beyond impressed with Magnolia and Lizzie braving the cold water. I wasn’t shocked that the two strongest and bravest people to ski that day were Magnolia and Lizzie. There is a strength in those with Rett syndrome that is just unmatched.

I’m not going to lie, it was chillier than I expected. When it came time for Magnolia’s brother, Grayden, he was pretty adamant that it was too cold for him. But when he saw his sister get in, he said, “If Maggie can do it, I can.”

If that’s the perspective we walk away from all of this with—that in spite of Rett syndrome, in spite of all her struggles, Maggie’s bravery rubs off on her typical younger brother more than my anxiety does, it is more than any of us could have hoped for.

Episode 8: Thumbnail

Episode 9: Surfing With the Carlo Family

Magnolia and the Carlo family ride the waves and experience the calming power of the ocean on New York’s shore.

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