As most people do around the holidays, it is a time to reminisce about the past year and make resolutions for the year ahead. With regards to RJ it has been a difficult past two years. Two years ago December, we had to listen to doctors explain to us that RJ has a devastating progressive genetic disorder that will slowly rob him of all his independence, medical obstacles will await him at every corner, and currently there is no treatment or cure. Last year, we had to decide to start RJ, at the very young age of six, on a daily regime of corticosteroid medication to hopefully add several years of mobility onto his life and maybe protect him from spinal surgery that seems all to common for boys with DMD. This past December, we stared at a bottle of Prozac that we needed RJ to start so we could determine if it could help his Obsessive-Compulsive Disorder (OCD) that appeared out of nowhere this past summer.
Some days we look at RJ and wonder what is happening to our sweet little boy? OCD is playing so many tricks on his brain it is hard for him to function “normally” and break free of the disruptive rituals that characterize this disorder. We thank God each day that OCD has not followed him to school. We knew it would be a journey and we take what is presented to us each day and try as hard as we can to remain calm, focused and positive. We would be lying if we said it was easy, it isn’t. We welcome help that comes to us from many different people.
Our acceptance of the situation and love for one another truly carries us through the difficult decisions we continually need to make for RJ and our family. We find joy in smaller accomplishments that RJ has on a daily basis. We do believe that God has a plan for all his children and that RJ will have wonderful life filled with love and happiness. We constantly put things into perspective. Problems that used to be a big deal no longer seem as important or overwhelming in our daily lives. We certainly live the routine life that most people do trying to juggle work, school, chores, activities, family time, and relaxation. Most of all we truly value our family life and try to spend as much time as possible together enjoying each other’s company.
We have some new hope. Currently, RJ’s doctors believe that his physical strength is very good compared to the average and that may ultimately allow him to walk longer. The longer RJ can stay ambulatory and be like his friends – that would be the best gift.
I guess you could say that our resolution continues to be that we choose to be hopeful and happy.