Tuesday, May 20, 2008

the day my whole life changed

Each of us have those days. Those days that change everything that follows.
It was May 20, 1991.
17 year ago.
It was the day I got the news that Jonathan was affected with Fragile X Syndrome and it changed everything.

It was the result of searching for answers. Why my boy was so much different than any other child I'd ever seen. But I didn't expect that. It was to our good fortunes that the doctor who was evaluating him had seen a TV special, 48 Hours, which had featured kids with fragile x. He said later that he knew instantly (based on physical symptoms) that Jonathan would test positive.

When the test results came in, the nurse who'd called me suggested that I bring in a family member. For support. I was a young mother, not even out of my teens. I was 19 when I had Jonathan. Young and stupid, but fiercely protective about my sweet kiddo. My mom drove Jonathan and I to the clinic and we left him in the waiting room, happily devouring my bag of Cheetos, and talked with the doctor. The doctor is question who dropped this bomb was less than comfortable with me, the Young Mother, and he kept looking at my Mom, talking to her about my son. In the end, when he layed it out for me, and I was wiping my tears away, all I could think about was my sister, who was pregnant with her first child. This was genetic and she was at risk, too.

It was the beginning of a long, sometimes very hard Road. But this was a Big Year for Changes. (In a 9 month period between 90-91, I left behind an extremely abusive husband, had a paralyzing stroke and recieved Jonathan's diagnosis.) Even as I cried, (and boy howdy, did I cry....) I felt relief. Knowing is always better than NOT knowing. Knowledge is power.

Life with Fragile X Syndrome is always an adventure.
It is the way it is.
This is my life.
It identifies me.
It makes me different.
It makes me strong, even when I don't want to be.

What has followed is almost two decades of experience with fragile x,
two more kids (a daughter with fragile x.)
A new life.
A wonderful, understanding husband.
A good life.....


Anonymous said...

They are beautiful!

Anonymous said...

You have a wonderful family. It sure beats the alternative, you know?


Kristiem10 said...

Thank you for sharing this part of your journey. Your children are truly beautiful people. And so are you!

Anonymous said...

Your son is sooo handsome. I'm glad my doc talked to me or I wouldn't still be using him. Age is not just a number...some of us are a lot more mature than others out there.