Some of the best times of my life have been with my Atomic Izor Ti’s attached to my legs, going down slopes at high rates of speed. The adrenaline, although hard to describe in words, provides a reprieve from the stress of day to day living in the Washington, D.C. area. We are truly blessed to live in this region, because while we do not have resorts the size or reputation of those out West, there are plenty to choose from, and one of them that is within driving distance is doing something special on February 24-26, 2012.
Rewind that date back to November 4, 2009, when I found my five-year old son Tommy unresponsive in bed. He had suffered a seizure caused by Angelman Syndrome. For a boy who had nothing but love, smiles, and laughter, losing Tommy was a crushing blow for our family and all who loved him. It goes against the grain to have to lose your own flesh and blood, yet seizures caused him to go to God far too early. As a parent, my worst nightmare had come true.
Christmas of 2009 was tough, and our family was not able to have a traditional holiday at our house, without our boy there to have his eyes light up, or to play with the wrapping paper, which was his favorite activity. Instead, we did what my parents suggested, and went skiing. My wife and I, along with other members of our brood, had always enjoyed skiing. Ski resorts have also always played a leading role in supporting and embracing guests with special needs, whether it be on the ski slopes or on the tubing hill. It was with bittersweet emotions that we hit the slopes, but the pine trees, the views from the mountain tops, and the outrageous speeds allowed us all to start the process of “getting through, although of course never over,” the loss of our angel Tommy.
A little over a year later, I decided to start a Facebook Group called “Suck Feizures,” that’s also nicknamed Stop Seizures Now. A blog at www.stopseizuresnow.blogspot.com was created as well, and several churches and other community groups were kind enough to let me share Tommy’s story. My hope was that places like Vanderbilt’s Kennedy Center Angelman Seizure Research Project and the National Epilepsy Foundation would get the funding that is so very much needed. Approximately 3% of people worldwide contend with seizures, and among the special needs community it’s a much higher percentage, with some children with conditions like Angelman Syndrome, CDKL5, and Rett Syndrome having hundreds of seizures a day. Others have had to go down this same painful path. We decided to organize a ski trip around this cause, because there are a lot of people who either have seizures, or love someone with them.
This upcoming ski trip has been made possible by the kind folks at Big Boulder Resort in Lake Harmony, Pennsylvania. They have shown a lot of kindness, and have been more than helpful. They have made the process of getting up to several hundred people at their resort quite easy, and this is going to be the first of what will become an annual event. Big Boulder Resort has helped in so many ways, that there are no words other than thank you, but it is meant from the heart. So many parents that have children with seizures, or whom face them often, are going to get the opportunity to go skiing, snowboarding or tubing. For many, this is going to be the first vacation that they have had in years. In honor of the epilepsy awareness color, many of us will be wearing sweatshirts with our organization on it, or purple jackets, hats, gloves, etc., to let others know that we are out and about.
While the pain will never go away, and other parents who have lost a child to seizures will be there, along with others who face them daily, this trip is a joy. So many people are thrilled about this opportunity. Like many other resorts, Big Boulder has adaptive ski lessons, and they have been so helpful with regards to finding pharmacies, hospitals, and other medical centers nearby just in case. It would have been easy for them to have met us halfway, or shown limited interest, but from the beginning their sales team and management has made this dream become a reality.
There will be many pictures to follow, but more importantly there’s going to be a lot of healing for lots of people that are going on this trip, along with the chance to connect with others that deal with epilepsy. Each day five hundred people receive this diagnosis, and 10% of us are going to have a seizure sometime in our life.
November is Epilepsy Awareness Month, but the weekend of Feb 24-26, 2012, is going to be Epilepsy Awareness Weekend at Big Boulder Resort in the Poconos. A special thanks to Tracy, and all the members of Suck Feizures, who are coming from up and down the mid-Atlantic, East Coast, and even a kind lady from Texas. Seizures are a worldwide epidemic, and while they do cause angst and pain that cannot be properly articulated, there is hope. There certainly will be on this upcoming weekend, when kindred spirits get together to hit the slopes.
Additional credits: Christy Doyle and Fernanda Mitchell, Executive Directors; Carmen Laymon, Event Coordinator.