Thankful 10 Year Old Writes About His Rare Disease
We all love our children. As a parent, we hope that every decision we make, every praise or reprimand given is not just beneficial to their upbringing, but molds our children into the best individuals they possibly can be. Sometimes we fail. We allow that extra candy after they have eaten the entire bag on Halloween. We yell at them when they don’t deserve to be yelled at out of fear or shear exhaustion. We might even coddle them, when the harsh reality of a stern scolding is more appropriate for the cause. No matter how hard we try to do our best at parenting, most of us will wonder if all our efforts are truly making a difference in our child’s lives. For me, I had the chance to see my efforts. The painstaking demands of rare disease, the fears, the worries, the hopes, and the successes – all combined into one small paragraph from a child’s eyes. His incredible insightfulness. His ability to love himself. The truth about his fears, his pain and his determination. THIS is about Ian, my beautiful son.
It was a typical afternoon. My son shared the usual rantings about his effortless days at school, how he was breezing through his classwork and enjoyed his reading class the best. He likes to compete with his classmates; racing to finish another 500 page book, just so he can earn the most points in his accelerated reading class. I’m not boasting. Quite the contrary to be honest. I never expected my son to excel as he has in school. I assumed with the potential ADD, ADHD diagnoses that can occur with his rare disease, that school, and reading in particular, would be more of a challenge to him. He has proved to be just the opposite.
This non-eventful and typical day, turned out to be one of the most insightful and heartwarming days I have had the privilege to share with my son. After our brief and usual comical discussion, he pulled out his school I-Pad and read a short paper he recently submitted for his fifth grade English class. It immediately brought tears to my eyes. In his words……..
My name is Ian Stuart Earley, I was born in 2003 may 2nd in the children’s hospital in Illinois. I go to the hospital a lot because I have a rare disease names Russell silver syndrome. It is very rare and it makes my grow slower than other people. And I never got made fun of it for it. I have gone to the hospital more than a lot of people I bet because of the disease it has really affected my life and I have to get shots every night so I won’t be affected by the growth disorder, the shots don’t hurt but they help a lot. I’m thankful because they have the medicine to make me grow faster because I saw a guy who had the same raresyndrome as me and he was 18 so he looked as big as my middle school brother and my brother hasn’t hit puberty yet and that 18 year old didn’t have the medicine we have now so I’m grateful for it. And it has been helping people a lot. I’m famous because I’m one of the only ones in my Disease that actually want to eat. Because of the disease it makes them not want to eat and it doesn’t make them hungry so u have to force them or just pump food in the tube in his/her belly. It is mandatory that all rss kids have tubes in they stomachs but they are not fully in the stomach on the outside of it/ crust of it because it would be very hard do have it inside the stomach because it might go into the esophagus and get stuck inthere.
And there it is. My son is thankful. He understands his disease. He sees the choices we make for him are only to make life better for him. Ian realizes that others have not had the same opportunities as he has. He is aware of the demands and determination it takes to keep him well. My son. Insightful, kind, loving and amazing. Thank you Lord for your gift. The gift of an amazing boy, given to me. I pray I will do right by him always and forever.
Out of respect for his feelings, I asked Ian’s permission to share his writings. He said “Mom, you help so many other people with rare disease, if you think it will help, go ahead and share it. If it makes you happy, I’m fine with it”. And there you have it. My 10 year old might just be smarter than me.