“Less Than One Percent” – Kelly

I would have never guessed in a million years that I would have a child who has CTD. I mean, who has even ever heard of it? I sure hadn’t. Not until the day we finally got in to see a geneticist. I still was skeptical. All these tests they were running, all the time you hear that it is a less than one percent chance that your child will have this or that, it would never happen to me right?

Wrong. When I got the test results back, I was on a break at work. I just broke down and cried. What did this mean? What was going to happen? This was my little boy, my angel. I already thought I was going to lose him once, was it destined? My whole world felt like it was crashing down around me.

We went to our first appointment to go over the results and next steps. The unknowns of this deficiency put a weight on my heart. I remember sitting there and the doctor showed me this information packet they put together for me. As they went through it, they came to life expectancy. I stopped breathing. They said “We expect a normal life expectancy, but research is limited”. I was so lost and confused. They couldn’t really point me in the right direction for anything. I became angry and bitter. I refused any help offered. If any of you know me, you know I can be very stubborn at times (and then I wonder where my children get it from- I still try to blame their dad).

After about a month of this, my mom yelled at me. 26 years old and yes, my mother had to yell at me. She had tried talking me through it and that just had no effect on me. Then one day I was on the phone with her driving home from the children’s hospital being a grouch as normal, and I wouldn’t listen to anything she had to say. She finally snapped and told me basically that I had a huge support system behind us, that I had to stop pushing people away and that I could either embrace it or let it defeat me. From that day forward, I decided to embrace it. It was only fair to Trenton. I had to do everything in my power to make sure my son thrived. I would not fail him.

After that, I did my own research. That’s when I stumbled across the Association for Creatine Deficiencies and the Facebook support group. It was so relieving hearing from other people who were going through the same things as us. Finally realizing we were not alone. Trenton is such an amazing young man. He is starting to learn so much. He is a great big brother, he loves his sister Raylyn. He is such a joy in everyone’s lives. He never meets a stranger. His smile could light up a room. We all see the world in a new perspective now. There is so much we would have never realized. I think we all kind of get stuck in the less than one percent chance, thinking it could never happen to us. Well it did, and the only way to push through it is to embrace it. We were all given our special children for a reason, and though that reason may be unclear at times, I wouldn’t change my son for the world- I will try to change the world for him.