Diagnosis: Fragile X
By Jessie Anthony’s Mom
“The line is pink!” I shouted. Wow, we are gonna have a baby. How is it gonna look we wondered … more like you or more like me? “A little mexican” or “a little white” we would laugh and tease each other.
No more smoking, no more drinking beer, got to do everything right. Take my prenatal pills, don’t lift heavy stuff, don’t sleep this way, teach my dogs not to jump on me and no more sushi. That’s okay, it’s all for you. I can’t wait to see you! In July you’re coming! I must have patience.
It’s Valentine’s Day and the phone rings. It’s my genetic counselor. “I have some bad news,” she says, “you are a carrier of Fragile X.” “What is that?” I ask. “Just come in and we can talk,” she answers.
The test results took almost three weeks, three weeks of wondering why? why? why?. On April 1, that phone rings again it’s my doctor. “Please come in,” he says, “we need to talk.” This has to bad I thought. I prayed the whole drive there. As soon as I walked in, they took me to the back and sat me down.
There is nothing fragile about Fragile X. It needs a new name if you ask me. Severely mentally retarded is that what you’re telling me? Most are institutionalised, aggresive, put on medication to calm them down and medication to function and medication to sleep, they bang their heads, have no sense of pain, autistic, severe…severe…what do you consider severe?
I try to understand this…but I can’t. I passed this gene to my son and as his mother my job is to protect and do what is best for my child. It’s a mean world out there. People stare and point, kids make fun of you. What happens if I die before him? Who would take care of my child?
Because even if he is 40, he will still be a child mentally. A heartbreaking choice, a soul breaking choice, a sanity breaking choice…that is what I made for you. You are too special for this world. I have questioned my faith in God. Please forgive me and please understand. I hope He does. That’s my prayer every night to God.
He came out feet first. Five big pushes and there he was, so perfect looking. Three pounds. The doctor says “he is big.” All of the precautions I took to have a healthy baby: how naive I was. There were things out there beyond my control.
I visit him often at the cemetery, cut his grass, put his flowers down, make sure they have lots of water. When we buried him, I buried a big piece of me. I don’t think I will ever be the same… never.
To hold him was to hold an Angel. And by the way he was a little white boy, but he had my feet. Nothing helps me, not even this Zoloft they put me on. But what does help is the thought of him running around in heaven with all the other little angels. Play in peace Jesse Anthony, your mommy loves you…every day every minute.