Finally — the moment Charley has been waiting for these past three years — he reached 48″ tall! This is a huge milestone for Charley because for the first time ever he is tall enough to ride the rollercoasters at amusement parks. Charley has been very slow to grow because he has been taking steroids since he was three years old. Steroids have been shown to extend walking time for DMD boys by 1-2 years. But as many people know who have taken a short course of steroids to deal with an infection or other problem, these drugs come with a host of negative side effects, including stunted growth and delayed puberty. Charley starts 6th grade in September, and already his 7-year-old sister has outgrown him in height, weight and shoe size. Miraculously, Charley manages to roll with this punch. His personality is pretty “outsized,” so he makes sure that makes up for his short stature.
But the amusement park was one thing that really got him sad. Last summer, a dejected Charley moped around Rye Playland, repeatedly asking me “Why did we come here? What’s the point?” as he wistfully watched other kids — younger kids — scream in glee and fright as they twisted, turned, and zoomed around the park on the various rides.
Last Friday we made up for that awful day! Charley measured himself three times at home to make sure he was not going to be turned away again from the rides of his choice. Confident he was 48″ tall (even when he patted down the ‘fro), we set out to Lake Compounce in Bristol, CT. (We brought along two teenage cousins because I’m afraid of heights and can’t bear the thought of going on a roller coaster.)
I wish I could describe the feeling of elation to see my little boy — who is told so many times by his body that he cannot do things other kids do — enjoy those rides for the very first time. Tentative at first, he quickly adjusted to the thrill and ended up on the Twister, the Flume, the Ferris Wheel repeated times. He was in such a good mood he even took his sister on the kiddie coaster without complaining.
Thank you Lake Compounce for treating Charley and all kids with special needs so well. He had the time of his life!