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 book Becoming Mrs. Rogers. 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.
To learn more about Cindi Rogers, read her full story at Becoming Mrs. Rogers
