What the Facts Will Never Show About Fragile X Syndrome

July is National Fragile X Awareness Month…..and there are a lot of things that you will NOT learn about Fragile X Syndrome by looking at Facebook or Twitter.  Let’s start with the things you will learn by going to the website fragilex.org or by reading posts from people on Facebook or Twitter.

-Fragile X Syndrome is the most common inherited cause of intellectual disability and autism and can range from mild to profound impairment.

-The gene responsible for Fragile X is called FMR1 and is found on the X chromosome. Everyone has the FMR1 gene on their X chromosome

-The FMR1 gene was identified in 1991.  The FMR1 gene makes a protein (FMRP) that is important in brain development. Individuals with Fragile X Syndrome (FXS) have a deficiency of this protein.

-Mutations or changes in the FMR1 gene lead to developing one of the Fragile X conditions.

There are a myriad of other things to know factually and scientifically about this genetic developmental disability, so I hope that some percentage of you will take advantage of the onslaught of information available during this month to really learn about Fragile X syndrome.

I consider myself to be highly qualified to speak on the subject due to the fact that I have two adult sons that were born with Fragile X syndrome.  Somehow, 26 years of living with it makes me a certified expert….or something of that nature. 

Sometimes, I find much of the information on the subject to be equivalent to blah, blah, blah, blah…..blahhhhhhhhh.  All of the scientific jargon is well and good, but it doesn’t get to the real picture of what our life truly looks like.  For that, I need to dig deeper and take a chance by opening up myself so that you can glean, perhaps, even a small taste of what it’s like day-to-day.

There are good days and bad days, much like every other human being on the planet.  But the bad days can be really bad.  Behaviors have been a big part of our life, although they have dissipated as our sons have aged.  Sleep problems are also common in children with the full mutation of fragile X, which in turn, causes the parents to be sleep-deprived and cranky.  Stresses about the children’s needs and the financial means to meet them are ongoing.

As a couple, our worries are unlike any other couples that we know—they are far-reaching, and will never end until we die.  Our children will be our responsibility until that time; day……………and night. We will likely never be “empty nesters” in the true sense of the word. Having a night out together as a couple can be a real challenge, let alone a weekend away.  Imagine…..finding a “sitter” for two adult men, ages 26 and 28 years.  Not an easy task.

Getting our sons jobs, helping them in everyday tasks, keeping them safe, coordinating appointments, mastering technology so that we can try to stay ahead of whatever device is necessary in their routine, and on and on and on and onnnnn…………..it can be overwhelming and exhausting.

But……we’ve found ways to cope with all of it.  It’s become our way of life and we’ve managed to create a pretty nice life at that.

In the midst of all of this lack-of-what-we-don’t-have, let me also tell you what my husband, Chris and I do have that facts will never display.

We’ve become members of a society that no one wants to join, but once there members are glad to be a part of. As a result of some stupid gene that mutated without our consent, we now have friends all over the world that I know we could reach out to on any given day, make a request, and it would likely be met with the words, “How?” and “When do you need it?” We share a special bond.

There have been many opportunities for our family to meet other families in smaller venues; more intimate opportunities like the one we just left.  Our family just spent 5 glorious days with two other families, in the beautiful splendor of Montana camping and enjoying every moment together. When we were together as families, these friends never asked why our sons do this thing or that. There was never any question about what kind of disability our son has, or why they are on a certain medication, or why they might open the RV entry door appearing solely in their underwear.  Nothing was strange.  No explanations were needed. No looks of disdain or embarrassment were exchanged between parents. It was so comfortable, like my favorite pair of aged, well-broken-in shoes.

Our children never felt weird around each other, never needed to have constant interaction, or even say a word to each other to know that they were there….just being themselves.

A simple 99 cent beach ball provided hours and hours of fun in the campground swimming pool for seven kids ranging in age from 10 to 28.  No questions were asked. The directions were simply understood and everyone was in the same zone. The feelings of joy abounded as each child did his or her part to play the game of hitting the ball back and forth. Each adult beamed with a smile from the skills that their own child and those of others, exhibited.  Perhaps there were newly found skills, or perhaps they were familiar.  It didn’t matter. A warm relief rose up in me knowing that my sons were having so much fun. It didn’t matter what genes they were born with. There was no attention paid to the things they couldn’t do. The focus was simply on fun.

7 kids and 3 Dad's with our 99-cent beach ball

During several sessions of swimming and beach ball hitting, another beautiful thing happened. Other kids without fragile X syndrome saw how much fun we were having as the ball volleyed back and forth between kids and parents, and they wanted to join in, too. There were small kids and even teenagers that paid no attention to any genetic developmental disability—they just saw fun and wanted to be a part of it. They were just being kids.

We shared three meals a day together, accommodating everyone’s taste preferences, without incident. Bedtimes were flexible based upon each person’s personal routine (routines are critical in our life!). No sacrifices were made. Parents helped each other’s kids with mindless effort. Stories were shared around the campfire as heads nodded in familiar adoration.

The daily feeling of anticipated-explanation and necessary definition-giving conversation that the public requires were absent during this 5-day trip.  There was no need for these dreaded words. It was all unspoken, familiar experiences. THIS was the antidote that we all relished.

This morning, we gave hugs, elbow-fives, high fives, and hugged again to close this visit of friends that came together through a challenging, devastating genetic developmental disability. We packed up the last camping chair, and prepared “Rocket” (our RV) for the journey home.  Then, we waved incessantly until we could no longer see the physical presence of these dear, special friends.

Now, as Chris skillfully guides “Rocket” southward toward home, we both feel content and fulfilled. This visit was just enough of a recharge to get us through whatever may come our way, until we can do it all over again.  It reassures us once again that we are never alone. The importance of this one thing is larger than I could ever portray.

Our older son receives a long-awaited, but promised, "hoodie hug" from our friend

  

Next month, we will celebrate 32 years of wedded bliss and we will continue our effort to face each day with resilience, love and compassion. We will do our best to provide our adult sons with a high quality of life through focus and determination. In many ways, I think it’s what pulls us all together even closer. We are not perfect, but we do our best most days. It’s not easy when a marriage has the added stress of a fragile X gene thrown in. As July ticks quickly by, I’ll share a few of the experiences we’ve endured in our marriage…………… so keep reading.

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