Oscar-Go

On June 8^th, the three winners of the National Mobility Equipment Dealers Association (NMEDA) Mobility Awareness Month van contest were announced. We want to extend our heartfelt congratulations to Alberto Cruz, the Davert Family, and Ronald Miner. Their stories are truly inspiring and really stand as strong examples of people who are triumphing in the face of disability. We hope you will take the time to view their profiles here.

We know many of you were deeply disappointed to hear that Oscar was not one of the winners of a van. We appreciate your support and your dedication so much. We’ve come back, many times, to the saying, “It takes a village to raise a child.” We are humbled, again and again by just how large and lovely Oscar’s village is. We really couldn’t do this without you.

Interestingly enough, we actually took the news pretty well that Oscar was not selected to win a van. We knew it was a real possibility that he would not. In fact, the odds were certainly against us: a national contest, over 1,700 entrants, only three vans. We knew we had to throw our hat in the ring, as they say. And I had a really good feeling. Little did I know that the good feeling would lead to, not the winning of a van, but something much larger, much more important in many ways: the raising of awareness, the growing of community.

Thanks to our friends Donna and Tom, in the last week and a half, we have had a small taste of what having a van will be like. While they are out of town, they have loaned us their van and we have borrowed a ramp again from Fonte. It’s going to be really hard to give the van back! Oscar has been out and about in his go power chair to many places around town: Family Fun Night at preschool, ice cream at the Pittsford Dairy, family swim at Mary Cariola (including a big zooming session around the completely empty parking lot), the public market, Highland Park for a picnic, Wegmans (oh my!), the pediatrician, the Brighton Farmers’ Market, and aunt Amy & uncle Peter’s house.

It was like a miracle to see our three-and-a-half year old son racing ahead of us on the path at Highland Park. With a grin on his face, he stopped when he wanted to stop, sped ahead, faster than his parents when he chose to, and he greeted strangers at his discretion. He certainly can say “hi” to folks from his stroller, but the sense of independence he has in his power chair is reflected in his decision-making power all around. It is his own prerogative to approach someone and say hello. He is simply able to be more actively involved in his own life from the seat of his power chair than from the seat of a stroller.

The long-term goal is still a fully accessible van. Although we have experienced miracles in recent days with the borrowed van and collapsible ramp, and now know this is a possible option, it is not the ideal situation. The ramp folds in four pieces and is awkward and heavy to lift in and out of the van.  A single outing requires handling the ramp eight times: 1. to set it up at home to load the chair 2. to break it down to close the van 3. to set it up at the destination to unload the chair 4. break it down to close the van—you get the idea—two more handlings to leave the destination, and two more once arriving at home. We’re happy to do it. More than happy. Giddy, in fact! Because this is the first real sense of independence Oscar has had out in the world. But, a van that is designed to be accessible will be much easier to use. And we do feel confident we will end up with an accessible van. How that will happen is yet to be seen, but it will happen.

Many of you, learning the results of the contest, have asked how you can help, or have offered up ideas of your own. We’ve heard offers of everything from being given a portable ramp and a well-loved, well-used van to starting a kickstart campaign that would involve a van and Oscar’s art work and the work of artists around the country, as well as an offer to host a garden party fundraiser or the idea of an event at the Museum of Kids Art in Rochester, to folks simply interested in making a donation. We are humbled. We are still humbled every day by the generosity that led to the purchase of our home. We can’t wrap our heads around the fact that people still want to help.

Our heads are full right now with preparations for the FSMA conference: the challenges of air travel, the excitement of Oscar being around so many other kids in power chairs, the anticipation of how our presentation will go, the chance to see familiar faces and meet so many new families who share the intimate understanding of living with SMA. We know we will have many stories to share! Perhaps upon our return, many collective creative minds can come together and the next step toward a workable solution for a van can begin to materialize.

Until then, enjoy some photos of Oscar exploring Rochester…