Tuesday, July 11, 2017

The Major Issue with Fragile X Syndrome No One Seems to Talk About

July is National Fragile X Awareness Month…..and there is one major thing you will NOT learn about Fragile X Syndrome by looking at posted facts on Facebook or Twitter.  For all of the scientific facts or to learn more about fragile X syndrome, please take a moment to go to www.fragilex.org.

In my one-and-one-half hour drive to work this morning, I was able to fully contemplate every aspect of the subject matter for this blog.  I mulled over the many chapters of my life and how it relates to the one thing that no one seems to talk about when it comes to fragile X syndrome—marriage.

In 1985, when Chris and I made our way down the perfectly groomed path of his parent’s back yard to recite our nuptials, I somehow doubt that any one of the more than 100 friends and family gathered were wagering on whether or not we would have a son or daughter affected by a genetic anomaly called Fragile X Syndrome.  How could they?  No one had even heard of it back then!

As Newlyweds, all we thought or talked about were goals, dreams and predictable difficulties yet to come. We shared thoughts on future disciplinary methods for children yet to come, what would bring each of us joy, financial goals, work/job goals, what we envisioned our future to look like and a thousand other things.

Five years later, as we both looked down into the angelic eyes of our first-born son, we still had no clue what we were in for. We shed tears of joy over his arrival and reflected deeply into the bright future that our progeny presented. We dotted over his every move and milestone, until those milestones were delayed and delayed, causing his worried parents to sink into an unfamiliar life of question and uncertainty.

Twenty-six months later, our second son was laid in my arms, and again, I wept tears of joy, but also tears of concern. I passed the little, warm, innocent creature to Chris, and watched as small wisps of fear appeared in the worry lines of his face. Virtually days later, our entire existence would change.

We heard those hallowed words “both of your beautiful boys have a genetic developmental disability called Fragile X Syndrome”…..and there was NOTHING we could do about it.  There was no cure.  Our married life had shifted into a whole new dimension with this news.  We were forced to question every fundamental moral and life value that we had previously laid out. 

One new assignment was laid in our laps right away.  We had to learn how to cope while learning how to grieve.  It was immediately obvious that I would grieve at a different pace and in a different way than the one person that I thought I knew better than anyone.  I grappled for information and asked questions while Chris stayed silent, taking in the realities. We had to figure out how to keep it together for the boys, but still support each other, even though we were in totally different places emotionally. The reality that very precise, minute, little dreams were dying one-by-one before our eyes, made the task even more daunting.  How could we possibly overcome so much devastation and do it together….and stay together?

For the first four years or so, we merely existed, not comprehending the extent of the implications some microscopic gene would play in our life. I found myself crying over small things, but didn’t always understand what I was crying about. Chris stayed strong and upright, but inside he was angry. Over the years, we each did progress through the entire grieving process at our own pace, doing our best to support one another. How we did it, I am not completely clear on, but I think a strong love surely helped.

I cannot put my finger on any specific reason that we’ve made it 32 years. I can point to some coping skills that we’ve eased into naturally, as well as some things that I, personally, would attribute to our wedded longevity.  We, of course, are not perfect, just like all couples. We have good days and bad…but more good as the years go by.  We have squabbles, compromises and miscommunications just like everyone else.  But learning each other’s rhythms has certainly added to a positive day-to-day life.

It can’t hurt that we met each other in Mrs. Johnson’s 7th grade French class (for full details on that story, click here The Lost Chapter).  Having 8 years to get to know one another before we were married didn’t hurt. By the time we got married, we really knew each other pretty well! Now, we own and run a company together! Yes, we see each other every day and work together, too!

On the jobsite  (on our Anniversary no less!) as we
run our commercial plumbing company together.

I have to say that one thing rings pretty clear when it comes to our happiness as a family despite fragile X….finding small moments of joy can carry us through those tough spots.  Once we learned how to see these small moments of joy, we all woke up and were able to see the blessings instead of the sorrow, the devastation, the sadness.  Small moments of joy can be found in the strangest places.

Sometimes, during a rough patch, I’ll head into my peaceful place….my kitchen. I find that doing some mindless chopping or stirring or measuring brings me back to an even keel. I’ll open the refrigerator and pull out some Italian sausage, some hamburger, some green pepper, onion and celery, and lay them on the kitchen counter.  I’ll turn toward the pantry and gather a few cans of pureed tomatoes, some tomato paste and a handful of different herbs. After a few minutes pass, Chris appears right beside me wielding his favorite chopping knife and a cutting board to serve as my sous chef.  No words are spoken. We each enact our own steps as if to follow a well-choreographed dance that we’ve done many times before.

The aroma begins to fill the house. The table is set and wine is poured. We calmly sit together as a family. Plates are heaped with noodles (sometimes homemade if we are all feeling particularly in need of comfort), then ladled with sauce. Sprinkles of fresh parmesan are dropped on the surface like little snowflakes. The boys eat their meal in the characteristically fragile X way, with the fervor of a famished animal, wiping their faces and leaving the table. Chris and I are left to enjoy the fruits of our labor and a glass of Chianti. This always seems to incite calm conversation followed by settled nerves.  It’s a small thing, but for us it’s what gives us joy and resolution. We can come together over a delicious meal and approach whatever is hovering overhead in a more approachable mood, together. We seem to have some of the most productive conversations over a meal we’ve prepared together.

One of many instances where we share a special meal together--my birthday.

I realize how incredibly lucky I am to have a life partner that supports me no matter what the challenge, and I him.  I have a best friend that I can lean on or cry on whenever I need to.  No marriage is easy, I realize.  There are tough times in every life. There are days that I curse him and he curses me.  Let’s be real here. We are human. We have all of the normal married life stresses, along with one additional, huge element.

Having a devastating diagnosis of Fragile X Syndrome for both of our sons has added a huge layer of stress, responsibility, a shift in our dreams and hopes, financial hardship, an uncertain future, and yes, daily frustration. We are in this life together for the long haul.  Nothing is even close to the way we dreamed it would be in those early years……it’s better.

During this month, I will share our vision for the future as we face difficult decisions.

To learn more about Cindi Rogers, her book or follow her family, please visit mrsrogersworld

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