In 2008/2009, I was part of the SMILE Sudbury Playground Project. I was on the fundraising team and found working on that project to be extremely fulfilling. When Lotte Diomede asked me to continue on with her to begin SMILE Mass, I jumped right in. I have a personal interest in improving the lives of special needs children.
Many of you know that our oldest daughter, Kristen, had to have brain surgery when she was 3 years old to stop her seizures which could not be controlled with medication. The great news is she no longer has seizures. The bad news is, due to the brain surgery she is developmentally delayed and has some mobility issues.
What we have experienced during this journey over the past 13 years is that every accommodation for disabled persons costs an extraordinary amount of money. As an example, we got Kristen a therapy bike from Germany for $1600, so that she can bike along with the rest of her siblings. A basic pediatric wheelchair (not motorized or customized in any way) that she would use during outings that require a lot of walking, again $1600. She does not need a wheelchair for everyday living, but only occasionally so that our family can do all the things that a typical family would do, such as Disney, The Topsfield Fair, etc.
Kristen is a very happy child and her smile melts our hearts. She is now a 16-year-old junior at the local high school where she attends a wonderful special education program where she is thriving. Despite the fact that Kristen is very high functioning, she is not a typical 16-year-old. She still takes medication 2 times a day. Her sports activities are not typical sports; some are therapy related, like her therapeutic horseback riding, others are designed with extra support, such as her special needs basketball. She cannot be left alone without supervision. She could not go for a bike ride alone or even bathe without supervision. Often times we rely on her siblings to stay with her when we have things to do, which they are all great about. We are so lucky that we can lean on our other children to help with Kristen.
Kristen loves being in the water and especially loves the beach! I know a lot of us share that feeling (especially with our New England winters). I could not imagine how sad she would be if that basic joy was not possible!