My daughter Emily was born with Angelman’s syndrome, which is a genetic disorder. It includes severe intellectual disability, developmental disability, limited to no functional speech, balance and movement problems, seizures, and sleep problems. On the flip side of this, Emily has a smile and hug that will melt your heart. When you have a special needs child, it will tax your relationships, sanity, emotions, and financial means to their breaking point. Everything is hard, but it is your child, so you will do anything to help them. What is devastating is not being able to change their situation.
While we were able to go on some vacations, it was always challenging due to the complicated nature of keeping Emily healthy. She was in and out of hospitals for years. We spent many nights sleeping in the hospital, switching places, and going to work. Emily spent so much time at Spectrum Health her brother thought she worked there. He was too young to understand only his mom and dad had jobs.
In 2006 we were granted a trip as a family to go to Disney World with my parents. Make-A-Wish did everything for us, and it could not have been any better. This trip was a fantastic time for my children to have fun and not worry about anything. They could enjoy themselves and be kids for once. While this was a tremendous opportunity, it was not one which we would have the means to do at that time in our life.
In 2016 I heard about the Wish A Mile (WAM) bicycle ride to raise money for Make-A-Wish. This event raises money to grant wishes to Michigan children who suffer from many life-threatening illnesses. In 2017 I rode my first 300-mile ride over three days. It was incredibly hard as that was the first year I ever rode a century, so I did it three times in one weekend. You cannot complain about pain or suffering on a bicycle when you see how much these children go through. The WAM event is very close to me personally. I see how much good they do and how much they can do for families suffering from illnesses. It gives everyone some respite and time to have fun and be happy.
“I ride to grant wishes.” is on one of my tee shirts, and it couldn’t be more accurate.