This is for the kids growing up with Russell-Silver Syndrome.
I was diagnosed with RSS as a baby, just like you probably were. I’m 29 years old now and when I was growing up, doctors didn’t know as much about the syndrome as they do these days, so there were lots of things that I didn’t know about until I got older. For example, I didn’t know that I had A.D.D. until just a few years ago. Also, doctors weren’t certain how growth hormone would affect me, so my mom and I decided that I wouldn’t take it – and I grew to a relatively small 4’10”, but that’s fine by me.
I’m writing here so that I can pass along a few things I’ve learned over the years that might be helpful to you. Things I think would have been helpful to me if I had known them when I was a kid growing up with RSS.
The most important thing I want you to know is something that took me until I was an adult to truly understand. Are you ready? Here it goes: Nobody is perfect. Sounds pretty simple, huh? I promise you, it is 100% true. Everyone has problems or difficulties of some sort that they have to deal with, even if you can’t see them. You are completely normal because everyone around you has things they have to overcome, just like you do. Nobody is perfect, and life is full of challenges and mountains to climb – that’s just how it is. I’ve learned that the best way to handle mountains is to strap on climbing boots, accept that the going could get rough, and forge ahead anyway. When you get to the top of each mountain, the view is pretty awesome and you feel GREAT.
When I was young, I was smaller than all the other kids. I wore a lift on my left shoe to balance my legs and my back. My ears stuck out, I was skinny, I wore braces for four or five years, I was painfully shy and was teased by some of the bigger kids. Sometimes I let those things get to me, and it would make me feel bad. But you know what I realized later? All kids get teased. Even the ones who do the teasing. So, don’t worry, it’s all just part of growing up. And let me tell you – it’s important to have close friends who make you feel good about yourself. You can choose your friends, and you don’t have to be friends with anybody who isn’t nice to you.
As a kid (with advice from my doctor) my parents encouraged me to find the things I was good at, and I tried lots of sports and hobbies, like: soccer, ballet, ice-skating, swimming, piano, karate and gymnastics. Some of these things I wasn’t very good at because of my RSS, but I always had fun anyway. When I was nine, I started taking horseback riding lessons and I rode horses competitively for more than 10 years, which really improved the strength in my legs and I found it didn’t make a difference that my left side was smaller. I also discovered I had a knack for creative writing and thought I’d like to become a writer someday. In high school I was great at English but I had a hard time concentrating on subjects in school that didn’t interest me (again, I didn’t know I had A.D.D.), so I had to study harder than most people to do well, sometimes even using a tutor to keep my grades up.
By the time I got to college, a lot of the typical physical features that we RSS people have, were mellowed out. My ears didn’t seem to stick out as much, my braces were gone, my small side didn’t seem quite so small and I started to come out of my shell and finally gain confidence.
When I was in high school, I had decided that I didn’t want to wear a lift on my shoes anymore, so I bought boots and padded them. But it wasn’t enough padding and before long, my back became crooked with scoliosis. At a routine check-up when I was 19 and in college, my doctor announced that the scoliosis was very apparent and something had to be done immediately – the very next week I had the leg-lengthening surgery.
The procedure was over in a couple of hours and I was able to go home from the hospital two days later. I had the metal pins in my upper leg attached to a large screw with a brace for about 13 months. I’ll be honest with you, it wasn’t a whole lot of fun. But after a few weeks I returned to school – with a wheelchair to begin with, then crutches for a while and then eventually I was able to walk on my own while bone gradually filled the gap. I even returned to my part-time job. With some grueling physical therapy, a necessary evil, I made a full recovery – the brace was taken out and my legs are now completely even and my back is straight. I can wear regular shoes, and even high heels, though I have to buy them at a special website because my feet are still very small (I wear a 3 ½). I’m incredibly glad I did it though. It’s amazing this technology is available.
As an adult, I became a professional writer, writing advertising for lots of companies. I wanted to write for a living and I didn’t let anybody stop me, including ME – I once thought I might not be smart enough or confident enough to make it happen. But I did. Remember the mountain I was talking about? Well it definitely has a great view, and I do feel GREAT for climbing it.
Like I said, I’ve learned a few things over the years that I wish I’d known when I was a kid. There was no Internet until I was a teenager and so there were no websites around like this one to show me how many other kids were just like me, going through the same things I was. But I’m glad to see that you have lots of support out there and you know you’re not alone.
I hope you’ll take with you these few things from my story: Nobody’s perfect – and nobody is supposed to be. You do the best you can with what you have, and you run with it. You have great talents – just find them. You can choose your friends, so choose wisely. Accept extra help available to you – help in school, help from your parents or help from doctors – but set and reach your goals by your own determination. Russell-Silver Syndrome presents some big challenges for short fries like us. But you get through them. I’ll tell you what I wish I could have told myself when I was young: Don’t worry, kid. You’ll be just fine.