by Leia Holley
I sit watching old video clips of our boys playing with the water hose in the little blue plastic pool.
Sean, 10 months old, is trying to get the fish off the bottom of the pool as his brother, JP, 2 years old, looks sheepishly at the camera and then… you guessed it… gives Sean a quick, cold shower.
Those were simpler times. A water hose and a five dollar plastic swimming pool occupied the boys for the hot summer afternoons.
Fast forward through the years, and the summers become crammed with extended school year (summer school), private therapies and long road trips to see yet another medical professional. Lost was the laughter and special moments between brothers replaced by waiting rooms and fast food in the car, again.
The first two years of Sean’s life were gifts we celebrated, every day. Then the diagnoses came: first autism, then epilepsy, obsessive compulsive disorder, then Pediatric Autoimmune Neurological Disorder Associated with Strep. As I look back I wonder what summer gifts we missed during those five years, as we searched to find not only Sean, but our family again.
Fast forward again, the boys’ summers are once again full of laughter, swimming, picnics, camps and friends. Somewhere around the time Sean turned 7 years old, I began to realize our life revolved around a disability, not around our children. While still ensuring that Sean’s and JP’s educational and medical needs were met, we began to focus on becoming a “real” family again, a family who once again stops to enjoy the precious gifts summer brings for a fleeting moment. Sean still attends summer school but he and his brother also enjoy being teenagers in their community.
For Sean, this means a buddy (personal care attendant) to act as his big sister. Sean and his buddy, Heather, will go swimming, eat out, go to the zoo, go shopping, watch movies, and do all the things Sean loves to do. Sean will be with his friends from school at the local pool and parks. He will attend the National Sports Center for the Disabled Camps with Heather’s support and join the Special Olympics swim team, to help prepare him for the high school swim team.
JP will take drivers education and then spend the remainder of the summer doing one of his favorite things, working on the farm and old cars with his grandfather and uncle.
Before JP leaves for the farm though, I do believe the boys need to wash my car. And, in the end, it will be Sean’s turn to give his brother a cold shower, as I sit back and enjoy just one of the many gifts this summer will bring.
