Inspiring individuals, go off the beaten path

… here is their story.

Our daughter, Sarah, is 13 years old and was diagnosed with CdLS at 6 months. Raising a child with a rare disorder has been quite a journey so far. We were terrified at first, not knowing what the future would hold for her. However, watching her overcome obstacles and reach goals we were told that she would never reach, has been incredible. Sarah makes us appreciate every moment. Watching her learn new skills, even now at age 13 is just as exciting as it was when she was 2. She just seems to keep reaching milestones that we never thought she would. It’s such a blessing to be her parents.

Last summer, Sarah was struggling with behavioral issues. My husband suggested we try a change of scenery. We live in the Catskills, so there are many parks and recreation areas nearby. We chose one that we had taken our older children to before. I was amazed at the total remodel New York state (NYS) had done, everything was beautiful and wheelchair accessible, including the trail around the lake. The day was fantastic, Sarah was calm and happy, and we decided right then and there to have a weekly outing.

After seeing the updated trails at the first park, I went online to search for accessible trails in NYS. I was very pleasantly surprised at the number of places that were at least partially accessible. We made a list and started our adventures. Sarah even started to get her backpack out and put things in it in anticipation of a trip. My husband retreaded her wheelchair tires to make some of the gravel trails easier to navigate. Our first stop on each trip is the Visitor Center to inquire about accessibility. At one trail, we were granted an Access Pass for Sarah, which now allows her and anyone accompanying her free entrance to all National Parks and Federal Recreational Lands. It’s definitely worth applying for.

If someone had told me that hiking and outdoor recreation would be a big part of our lives with Sarah, I would have told them there is no way. But just getting out there, researching, asking questions, trying new places has really been a huge turnaround for her. She loves to go on her adventures and we love watching her enjoy the experiences. You just never know what you will find unless you get out there.

“Life with Sarah has taken us completely off the beaten path. It was scary at first. We had no clue where we were going and there were no markers to guide the way. But we wound up experiencing and feeling things we would have never known existed had we stayed on the main road. I wouldn’t trade one second of it for anything in the world.”