This coming Saturday may be a normal day for most people. It’s a work week end! It may be a Saturday summer day where one can enjoy the out-of-doors, maybe swim in the heat of the sun; a day with friends or family at a baseball game or kids sporting event….but for me it’s not that.
It’s July 1st. The first day of the month where families all over the United States begin to “celebrate” National Fragile X Awareness Month……a month I never would have even known about had it not been for a devastating day back in 1991.
That was the day that my husband and I learned that our beautiful baby boy, then two years old, had a genetic developmental disability that we had never even heard of….Fragile X Syndrome. My husband and I sat blank-faced as the Dr. revealed that Fragile X Syndrome is the most common form of genetic intellectual disability. As the words continued to spill out of her mouth, I felt tears well up in my eyes, not believing what I was hearing. It was an X chromosome abnormality that effects 1 in 3,600 to 4,000 males in the world, and our son had it. The future suddenly turned very dark and dismal. It was also the day that we learned that our, then, 3-day old youngest son had an 80% chance of also having the very same diagnosis….and he did.
We’ve spent the past 26 years learning something we never wanted to learn. We spent the next 26 years wading through blood, sweat and tears in an effort to do things we never would have dreamed about during our 8-year courtship where we talked about our future like it was some kind of fairy tale.
My husband of now almost 33 years, and I, have faced challenges that no couple, no human, should have to endure. We’ve watched our handsome, seemingly normal-looking sons overcome the many obstacles that this damn genetic predisposition has laid before them. Through years of speech therapy to combat a significant speech delay, they’ve come out with only about 100 words. Through years and frustrating hours of occupational therapy to learn to cope with the extreme sensory defensiveness and lack of motor skills, nerves have been shattered. We all display scars from moments of uncontrollable meltdowns caused by behavioral issues that we had yet to know how to avoid. Financially, the marks of necessary treatment, trials, medications and hardship are evident in our bank book.
As a Mom, the grief, the guilt, the depression and pain are always hiding in the background, just waiting to emerge and engulf me like a prickly wool blanket wreaking havoc on every cell of my being.
But, this is now our life-long reality and we must deal with it. We are dealing with it. Despite all of the day-to-day challenges we tackle, we deal with it. What choice do we have? We didn’t ask for this diagnosis! We can either fight through each day and hope that our sons will become happy, contributing members of the community….or we can lie down and let it win.
WE CHOOSE FIGHT!
I ask……no I plead with you to take just a moment of your time and learn about Fragile X Syndrome. If you have just a glimmer of empathy in your soul….learn. Our sons and all human beings with Fragile X Syndrome are worth your time…I promise. They will enhance your own life ten-fold.
If you want to learn more about me and my family, check out my website Mrs Rogers World. Hint: We are doing just fine J Over the next month, I will attempt to portray the past 26 years and give you a sense of our world. I hope you will follow along. I guarantee it will be worth your time to immerse yourself in our story.