Fragile X is not widely known and understood... And I knew not one thing about this INHERITED, GENETIC DISORDER when it was thrown at me over 8 years ago. I was searching for answers. I needed to know why my child was struggling so hard with things that were suppose to come naturally, easy. I wanted to help my baby and I was stuck. He couldn't tell me what was wrong. He couldn't say no more than 5 words. Every one else's children were talking like crazy... But not my baby boy. He couldn't tell me when he hurt. He couldn't communicate with me his wants or needs. His frustration was only growing, becoming violent. And ALL I knew was that something just wasn't right.
"G" was diagnosed with Fragile X Syndrome, full mutation at 200(+) repeats, February 14, 2005. He turned 2 on February 25. I was pregnant with "S".
"S" was born July 20, 2005. Tested at 6 weeks, his diagnosis came at just 8 weeks of age. My test was done at the same time.. "S" has Fragile X pre-mutation at 140 repeats... I also have pre-mutation (my repeats are weird bc I'm a female)...
I was so overwhelmed.
I was hurt.
I didn't understand.
I still get overwhelmed.
I still hurt.
I still don't understand it all.
BUT, I do know that FRAGILE X doesn't have to define us. We are different. We have our silly quirks and need for structure and routine. We have our bad days and then we have our extremely bad days.
We have good days. These good days are what we live for.
There is one thing for certain, Fragile X will never hold us back from loving and living for all our lives are worth... We learn every day. We take time to teach and to give...
What we need the most...
Is for all of you to spread the awareness, help others understand why we can't always come out to play... Why there are some public functions we just cannot do... Why we must leave early, arrive late, can't sit still, can't be quiet, can't stop asking questions.. The same ones, over and over. We have dr appts, blood work, therapy, special classes, long meetings, medical records ten inches thick... We have special requirements, special needs...
Fragile X isn't going to hinder us, but we sometimes need a little extra time to prepare for outings, a little extra patience for questions, a little more solidity to plans made, a lot less rough housing and a ton more love.
Although, from the outside we may look as if we're an average, everyday Joe... We aren't. We have mutated chromosomes (kind of like the Teenage Mutant Ninja Turtles) ha! AND we are MUCH MORE than what meets the eye.
So, PLEASE. Take time today, go to www.fragilex.org and educate yourself a little further. Learn about what makes us seem a little more awesome.
FRAGILE X doesn't define us... But we sure do make it look good!:-)
July is Fragile X month...
JULY 22 is National Fragile X awareness day... Challenge yourself... See if you can learn something you didn't know about my children, and even me.
Thanks to each and every one that has given support and love to us.
<3 WE LOVE YOU ALL!! <3