20 Years Old Living with Russell-Silver Syndrome
A GUEST STORY
I was in my mom’s womb trying to grow when the doctors saw that I was having trouble. “Failure to thrive” was written on my chart and there was concern. Ultimately, I was born a month and a half early at 2 pounds, 6 ounces, but my father was long gone by then. He didn’t want to have anything to do with a deformed kid.
The reason for concern was Russell-Silver Syndrome, a disorder that involves, among other things, low growth, low birth weight and short height. In other words, I’m small.
My bones are thin, my voice is weak and my eyes are unusual. I’m the size of a fourth grader. But here’s the thing—at 20 years old, I’m 4’10”, 65 pounds and as big as I’m ever going to get.
You might think life would be tough for someone of my size and while you may be right, it is nothing compared to what life was like as a little boy, a really little boy.
My mom was not afraid of me getting hurt. At least she didn’t let on. She’d tell me to get in there and rough it up all I wanted. My step dad was also always pushing me to be like the rest. I think he was instrumental in toughening me up. Even though sometimes he pushed me too far.
When I think back, the pressure was unbearable.
When everyone bounded out to play basketball it was torture. We played a shooting game and when the ball went to me, I couldn’t even hit the rim on a lowered basket. They said, “OK, if Jaim hits the net, we’ll consider it a score.” So I kept smiling and playing but it hurt me deeply. When I hit the net, they cheered. They might as well have sneered, it hurt all the same. All the boys and girls could make baskets. I was the outcast. I cursed my body.
One day while riding the bus home, I couldn’t take it any longer. I was the last one on the bus and broke down and cried. The bus driver noticed me in her rearview mirror. She came over to me and put her arm around my tiny shoulders. “You just keep trying, no matter what it is,” she said. “I can see that you’re a strong boy.”
Her kindness meant so much to me. It helped to make me extremely determined to accomplish all the things that nobody thought I could. I suppose in some ways, however, it kept me believing that I could one day overcome all of the ways I was different. I was a small boy rolling a large rock up a tall hill.
It was about to turn into a boulder.
Puberty brought with it a deep need to be liked by girls. I had a plan. If I dressed cool, it might do the trick.
The skateboarder look seemed to suit me so I did the skater thing. The girls didn’t seem to care. So I transitioned to the gangsta look. Again it met with no success. Over the next years I nearly broke the bank buying all kinds of clothes from all the different styles I could think up. It was a dismal failure.
Meanwhile the boys kept getting taller and more muscular. Even the girls were towering over me. I would look up and see them staring at the other boys lovingly and giving them attention. Once again, I was the desperate moth pleading for someone to see that I was beautiful.
I had failed. A pretty girl would not look me in the eyes and hold my hand in hers. I asked God again, why did you make me this way? What good does this do anybody? Why do I have to suffer?
I fell into depression. There was a hopelessness to my life. Is this all I’ll ever be—small? Does this mean my life will be small too?
This guy I knew called me up out of the blue and asked me if I wanted to go with him to a party. I said yes. He was going to pick me up. So I waited. And waited. As I sat there, I felt the silliness of my life. Me, in my silent house, dressed in some ridiculous get up that didn’t feel like me at all, sitting on my couch with my feet unable to reach the carpet, waiting. Waiting for what? A chance to go to a party and feel like a freak?
He never came. I fell to my knees. When I was little, I had told God I wanted to be His, but this was different. I told God I needed Him in a way that I didn’t even recognize. “Take all of me, Lord,” I cried out. “Make something with my life because I can’t. I’m yours. You’re all the hope I have.”
When I got up off my knees, I felt different. I knew my body hadn’t grown, but something inside me had. Even so, I had to check myself in the mirror just to make sure.
I began to take God seriously when He said He wants a relationship with me. So I spent time with Him every day. I long to read His Word and pray. He has rewarded me with a hunger for more.
By the grace of God, all, and I do mean all of my painful self-perceptions have been replaced with an ever-growing sense that I have been made perfectly for God’s holy purpose.
I feel so hopeful because I feel so loved. To me, I have been taken by the hand and my eyes have been longingly looked into, I have been claimed, I have been asked to the prom, I have been crowned Homecoming King.
In 2011, I moved to San Diego and became a part of the Rock Church’s TWELVE program, a nine-month mentoring and leadership training experience. Whenever I speak to audiences of young people, it is so wonderful to see how God gives me everything I need. He even makes my voice powerful. As soon as I take the stage and everyone sees my size, their mouths drop open. You can hear a pin drop.
The result? Kids want to know more about a God that can build a giant inside someone like me.
You may not believe me when I tell you this, but I love the way I am. That is not indicative of a mere change of mind, but a change at the core of my being. I used to think the best I could do would be to learn to live with my condition. But today, I like to look in the mirror because it’s me—the same me that God chose to have so much influence over young people and bring such hope.
Each day I learn more about how Jesus withstood the pain of the cross just to bring me to Him. All of that love is alive inside of me.
And there’s nothing small about that.
Jaim and Dave – thank you SO much for allowing us to re-post your story. Jaim you are an inspiration!!!