Wednesday, April 1, 2009

Jumping in

I have decided to join the blogging world and to focus on two of my sons who are not any more special, nor any less special, than my four other children, but their mental retardation sets them apart.

As a teenager I made plans for my future after high school. I would go to college, graduate, get married and have children, lots of them, and I knew they would grow up to be college graduates and doctors and maybe even one would become president of the United States. I didn’t plan for children with fragile X (inherited mental retardation) because I didn’t know about the secret I carried inside, that I am a carrier.

That was many years ago when I made those plans. My two sons with fragile X are now 38 and 32, just young boys disguised in men’s bodies. It has been an amazing journey.
Fragile X syndrome is the most common cause of inherited mental retardation and yet most people I talk to have never heard of it. Approximately 1 in 3600 males are affected and 1 in 4000 to 6000 females. I had never heard of it until our family went to a genetics clinic to find out what caused mental retardation in two of our then five children. Another baby was born a year after our diagnosis.

Daniel Boone, an American pioneer and trailblazer, said “I can’t say I was ever lost, but I was bewildered once for three days.” My sweetheart and I were bewildered for much longer than three days, or even three years, but very much in love with all our children so that when the geneticist met with our family at the conclusion of testing and told us about fragile X syndrome some of our questions were answered. So there it was. The diagnosis helped us in understanding but there were still more questions that would slowly get answered through the years. I am still learning.


  1. Great story Mom. I truly enjoy it and I will make sure others read this too.

  2. Jeff and I have appreciated how open you are about Fragile X and how you have helped us to understand the syndrome and how you deal with it. Clarke and Phil are special boys and we enjoy their uniqueness and your family. How lucky they are to have been born into a family that loves them for who they are and how lucky you are to have them!

  3. I just found your blog and I'm enjoying reading it. My son, only 17 months was diagnosed last week with Fragile X. My older son, age 4, does not appear to be affected. We have a long journey ahead and I am hainv difficulty finding storied from people on the web, so I apreciate that you have shared. Joy Justus, Orange County, CA.