Monday, July 28, 2014

Fragile X

I started this blog to share my summers with my boys, but I have not written  a lot about the boys and fragile x and how it has affected our life. I have had a lot of ups and downs since I got the first possible diagnose of fragile x when I was around 3 months pregnant with my younger son. My older son was 2 years old when his interventionist finally convinced me to take Seth to Chapel Hill for an evaluation. This was a very hard day for me and for Seth. They put him through so many test, checking his motor skills, intellectual skills, and speech. After it was all said and done I was told that Seth was either mildly autistic or he had fragile x syndrome and if it was fragile x that the child I am carrying has a 50/50 chance of having it to. I was devastated when I learned that this was possible and went in to a deep denial. When Clay came along and showed the same signs of delays that Seth had I was heart broken. How could this be? Where did it come from? I don't know anyone else who has it. I felt so alone. Both of my parents had passed away before any of this was obvious or before there was a concern to Seth's delays. When Clay was 2 years old I finally took him to Chapel Hill to have blood drawn to see if Fragile x was what was causing all of this havoc in my family. The blood work came back positive. Wow!

Well that has been almost 17 years ago and Wow!! We have come a long way since the diagnose but it has been a journey that I sometimes still can not believe we have survived. I am not saying that this journey is over but know there is a whole other set of issues. Back then we worried would they talk, walk, be able to go to school, and so many other things little kids learn and meet milestones. Now I worry about what will happen to my boys when or if something was to happen to me and the farmer. I worry a lot about the future and how it will be when the boys are both in their 20's, 30's, 40's and so on. I never dreamed that the older years would be stressful. We have other issues now that we have grown men. Now I worry about Seth and his nerves. He get so stressed over things that he never worried about before like riding in his daddy's pick-up. Worry about going places with his paw paw that he adores and loved to go places with. He has almost totally stop going places with him. I don't want him to get where he does not want to go anywhere. I don't want him to lose his social skills but it is so hard to keep this stuff up when you live in the country and have grown children. You don't have play groups to go to any more. No more school and I can not even think about sending him to the college program because I don't trust people and how they would treat him.

Clay has a whole other set of issues. He is affected in different ways than Seth. He still need help with his independence with everyday life skills. He has meltdowns because of his disability  gets the best of him. He gets something set in his mind that he wants and it is hard to get it off his mind.

I love these boys to the moon and back and in so many ways I would not change one little thing about them. I am really learning to enjoy Holland.


  1. Beautiful post. I wouldn't trade my experiences with fragile x for the world. My son is 25 now.

  2. Your conclusion says it all. People love their handicapped children profoundly. You have a stressful situation I hope you can find some options so that there is relief for the whole family.

  3. What a touching post. I know so very little about Fragile X. It must be hard to worry every day about the future for your boys. You have been the best mother ever and given your boy so much. I love you Vicki.


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