Way back when, there might have been a short period of time where you could look at Megan and not realize any of what had happened to her. It took a while to see and accept that she was different from the other kids her age. But from the first moment that became clear, my wife and I have worked very hard to make things right.
At first it was the a constant stream of doctors, hospitals and therapists. A lot of medical professionals put in a great deal of effort to heal our daughter. But just as soon as Megan would gain some ground another status seizure would come along and wipe away her progress just like a chalkboard gets erased. Over time her advancements through therapy slowed and then eventually stopped.
The seizures continue. They have gotten shorter and aren’t as severe but the last twenty years of medicine still can’t prevent them. Megan is profoundly cognitively and physically disabled. She has recently moved to a group home nearby that’s better able to meet all her needs. She is a beautiful and happy young woman. And I am still doing what I can to make things better.
Two decades of 24/7 caregiving left me with a deep appreciation for how that commitment can take from everyday life. CAREBIKE is an attempt to make up for what gets overlooked.
Yesterday I picked up Megan with a CAREBIKE in the back of the van and we came out to ‘Wild World of Sports’ to watch the Special Olympics Finals. Just like it says in your brochures, it was a magical experience.
We got loaded up on the CAREBIKE out in the parking lot and rolled our way through the main gate. Once inside, we saw everything from one corner of the park to the other. Along with all the different Special Olympic events in all the different venues, we got to check out a couple of women’s college soccer teams practicing for their conference tournament. Everyone there couldn’t have been more inviting and helpful. The weather was gorgeous. It was a perfect day!
On the way home it hit me: With the right piece of equipment (CAREBIKE) and the right setting (Disney has accessibility down like no one else) there aren’t any barriers. Megan had the chance to take in everything that was going on out there. She saw it all. She had the opportunity to be in that moment like everyone else there. And together, we had the chance to share that experience.
Megan was sitting in the passenger seat of the van. The CAREBIKE and her wheelchair were still attached, riding in the back. I was talking to her about the fun we’d just had together. I was rambling on, like I always do, and she’d look at me and smile, like she always does. But some of that Disney Magic was still with us there in the van. A quick glance over and I saw her for a split second without all her limitations. The effortless time we’d just spent together allowed me a very short glimpse at the woman she might have been. In that instant everything about my daughter was right.