My Fragile X Life-A Chronological History-Part 1

As I was cleaning out some files the other day, I ran across one marked “Fragile X Presentations.” Inside I found an article I had written way back in 1995 — only 4 years after our diagnosis. As I read it, my mind drifted to that long ago time. It was clear in that article that my emotions were still pretty raw. Such remembering provides me with a perspective which helps me celebrate the challenges we’ve overcome rather than focus on the depth of what we’re in at the moment. A lot has happened since then, both personally and in the world of science; I didn’t always have this perspective, believe me.

Our boys, Jake and Joe, were both diagnosed with Fragile X syndrome in 1991. We were provided a full packet of paperwork by the geneticist at our first meeting, which included the phone number of a local mom. Back then, we didn’t have e-mail, there was no Facebook and there was very little contact with other families. I finally worked up the courage to call the mom who was, at the time, the leader of the Denver support group. She told me, “I am not really going to be very active in the support group anymore due to my parent’s health. My son is now living away from home and doing well, so I don’t really have the time to dedicate to it anymore.” As a newly diagnosed family, we couldn’t imagine a time when fragile X wasn’t our world and the idea of “not having the time” for it was unimaginable. It was too new, too fresh. With the benefit of 21 years of perspective, we are now able to realize that the fragile X world is merely a speck in the whole scope of the universe yet, at the same time, we have spent almost half our lives immersed in it.

The 1990’s were a decade of learning, evolving, and grieving for us. Even with as much as we had learned already in our journey, we discovered that there was still much work to be done, especially on the home front. The 2000’s turned out to be a decade of change, challenges and implementation. Today, Jake and Joe still live at home with us and we still have some years left to work before we can retire so, for now, our future is still being told and we are still working on the final outcome. I have no idea how long Chris and I will continue to be involved in the Fragile X community.  I suppose only time will tell.

What follows is part one of a two part series; I hope families who are not so far along in their journey can perhaps learn something from our experiences, from how our lives have evolved from those early days of shock to our current days of (mostly) joy.

In the Beginning

As I said, our boys, Jake and Joe, were both diagnosed with Fragile X syndrome in 1991. I don’t remember the exact date like many of my friends. For me, the exact dates are not important; it is the outcomes that stay with me. It would be difficult for me to recollect all of the details of the past 21 years, but certain things do stand out in my memory.

I remember the geneticist telling us at our first appointment that, “Jacob will never go to college. He will likely never live on his own, but will probably live in something called a group home setting.” Those words settled themselves in my mind but I considered them a challenge, not a conclusion. We spent the next several months at doctors’ appointments, therapy appointments and just trying to figure out what we were faced with.

We had some contact with other local families in those early days. I remember the meetings at other people’s homes. I also remember some of the information that was shared. Jake was only about 3 years old at the time, and some of the stuff we heard from the other parents was frightening! We were not at the point where we could relate yet.    We were still in shock and trying to figure out what Fragile X meant, and what was next.  We were so afraid of the unknown, of what the future would or, more importantly, would not hold.  If we based our expectation solely on what we heard from others….it would be bleak.

One of the first memorable pieces of reading that was given to me was a poem called, “Welcome to Holland,” by Emily Perl Kingsley (http://www.our-kids.org/Archives/Holland.html). It is one of the most highly circulated in the fragile X community. It still rings true every time I read it.

Getting Involved

Then, in early 1994, the amazing Dr. Randi Hagerman brought together several families from all over the state of Colorado to participate in an activation of grant funds that were to be used for families. The group decided to use the money to try to organize and establish support groups in the four main areas of Colorado. There would be Northern, Western, Southern, and Metro Denver area groups. I got busy making phone calls and sending out letters to all of the families listed on the roster. The meetings were sporadic, but welcome for us.    It was the chance to know that we weren’t alone.  Fragile X was not well known at all, but at least we had other families that were in the same boat with us. 

Doctors Paul and Randi Hagerman had founded the National Fragile X Foundation in 1984, and by 1994 there was an office in downtown Denver. The staff were all volunteers except one director. I tried to spend a little bit of time helping out. I was an Executive Assistant for the President of a world-wide engineering corporation at the time, so I could offer some organizational skills and general office knowledge. Much of the work that year was in preparation for the 4^th International Fragile X Syndrome Conference, which was to be held in Albuquerque, NM. Looking back, I now realize how important the Foundation already was to so many people; it was providing loads of information to families all over the world.

Around 50-100 people attended that conference in Albuquerque. I made the drive from Denver with another mom so we could share expenses. We made the best of the 10 hours by chatting and comparing experiences. I had the pleasure of meeting other families like Julie and Rick Schleusner, Jayne Weber, and Arlene and Jeffrey Cohen. It was so nice to meet others that had the same questions as I did and the same worries that kept me awake at night. Both the Schleusners and the Webers lived in Colorado, as did many of the other attendees. Professionals from all over the country and the world were also in attendance. I have since thrown away much of the information that was shared at this conference (I think 2 file cabinets full of information on Fragile X is enough, don’t you?)  but, suffice it to say, it was ground-breaking in the field of fragile X at the time. Most of the parents in attendance were all still in the beginning stages of diagnosis - grief and utter dismay.

It would not be until many years later that I realized how lucky we were to have lived in Denver during this time and how lucky we were to have met Dr. Hagerman. If we had to have Fragile X, we were in the right place at the right time.

1995 was a big year in my own life. My mother, sister and I were traveling back and forth from Denver to Detroit visiting my mom’s ailing parents. We made many trips between 1994 and 1996. During one of these trips, we had the pleasure of spending an afternoon with Arlene and Jeffrey Cohen. I remember this visit well. It was so nice to meet other kids around the same age as our boys and to see them in their own home environment. Seeing some of the exact same emotional and behavioral difficulties that we were grappling with made me feel right at home.  We chatted for hours like we had known each other for years.  It was all very familiar.  It made a difficult trip more enjoyable. The Cohens have been a continuous force in the Fragile X world and I feel honored to know them.

Building Awareness

I too have strove to build awareness of Fragile X – even when it meant stepping WAY outside my comfort zone.  In 1995, I did something that was totally out of character for me all in the name of fragile X. It was my personal mission at the time to help spread awareness about fragile X. Knowing that so few people knew what it was or how many would be affected maybe made me a little bit crazy at the time…you be the judge!

I saw an ad for a beauty pageant for Mrs. Littleton, Colorado. The requirements were minimal, most importantly I did not have to have a talent, so I registered, prepared, competed and, much to my surprise, won. Then, I had to compete in the Mrs. Colorado pageant.

When I met the other contestants at the state level competition, I realized that I had no idea what I was doing. These women were serious and I was just doing it for exposure! I had never done anything like this while they all certainly had. I felt out of my league. I didn’t have near the time to dedicate to it as they had but I did learn many things from these ladies.

Never in my life did I think that I would have the need to use spray adhesive to hold clothing in place. It sure helped when I found myself parading around in a bathing suit in front of hundreds of people though! Nor did I know that duct tape could have so many uses! My husband knew it was an all-purpose application, but me, never. Oh, the life lessons we learn on the the Fragile X road! These shall stay with me for all my life.

The night of the competition, Dr. Hagerman, Tracy Stackhouse, Louise Gane and Sarah Scharfenaker were in attendance, along with many from my family. It was a night I will never forget. Some days I wish I could wash it from my memory, as it is so uncharacteristic for me (I actually wince when I think about it now). I did feel quite special though. Others sometimes say, “I felt like a beauty queen,” but I actually did! I placed 11^th in the competition when my special night was over but I did teach at least one more person about fragile X. During both my stage and private interviews I spoke solely about my Fragile X platform and what it meant to me and my family. Mission accomplished.

Into the Thick of It

Later in that same year, Dr. Hagerman asked if Chris and I would like to be sort of a family liaison to visiting families and we agreed. Families visited the Children’s Hospital of Denver Fragile X Research and Treatment Center just about every week to see Dr. Hagerman, and we wanted to help. We decided that we would host as many families for dinner as we could during their visits to Children’s. It was just a small token, a simple sharing of a pizza or hamburgers on the grill. Little did we know how therapeutic this would be for us as well for the other families.  I often felt like I could just sit and observe the other families.  I wished to see myself through someone else’s eyes and to see their children as my own.  When families with older children visited, I was very curious to know if my own boys would be similar to them.  I was gathering information and storing if for a later use.

Over the years, we had the absolute pleasure of meeting hundreds of families including; the Devines in 1998 (Denise reminded me of the date because they remembered the John Elway Superbowl celebration during their stay); Leslie, and Joe Garera with their son in 1996 and 1999; Suzanne Balvanz and her son around 1995. Many are quite memorable…some for funny reasons, and some due to our own meltdowns during the visit. Many of these families we met in the early years have since “retired” from the fragile X life, but several remain. One of the most marked things that has stayed with me is the fact that these families thanked us profusely for the meal and the visit. What they didn’t realize is that we gained MORE from the visit than they ever did.   Looking back now, I feel as if these visits provided more insight into those unanswered questions.  It was hard sometimes meeting older children, but in hindsight, it was so helpful.  It also gave me confidence to know that parents with older children survived.  They had a certain calm about them that I longed for.  We received a therapy way beyond what any doctor could have given us. We cherish those memories.

In the summer of 1996, I attended the 5^th International Fragile X Conference in Portland, OR. There were even more families this time, and many with older kids. I remember feeling very hopeful. I felt a connection to many of the people at this conference. Since I had already met the Gareras, the Cohens, the Devines and many, many others, it was already like a reunion.

One thing I clearly remember about some of the early conferences were keynote speeches by actual adults with full mutation Fragile X.  The young men that gave the speeches were very brave and courageous.    To see these young men get up and have the courage to speak in front of hundreds of people, and to be able to call up and deliver the words was amazing to me.  These sessions were standing room only and always ended with the entire house in happy tears.  I dreamt of my own sons doing that one day, but it was not to be.  At this stage in our journey we had no idea how affected Jake or Joe was, and we had no crystal ball to tell us the future.  Neither of the boys were speaking much at this point, so all I had was my dreams.

Taking to the Road

In March, 1997, I had an opportunity unlike any other ever in my life. Dr. Hagerman invited me to attend a conference on Fragile X in Paris, France. This was also the first time that Chris and I would travel outside of the United States. It was so humbling and we were so full of excitement. We met many parents from all over Europe who also had children with Fragile X syndrome. I was asked to talk about our experiences in raising 2 boys with Fragile X. I had to force back tears as I read from my script. It turns out that our experiences in the U.S. were vastly different from those in Europe. We returned home feeling extremely lucky to have the doctors and therapists that we had, as well as our education system. It was such an honor and a memory that I will never forget.

As word of Fragile X reached more and more people through the awesome work of Drs. Randi and Paul Hagerman and others, it finally caught the eye of a reporter at the Rocky Mountain News in Denver, Colorado. In April, 1998, the newspaper sent a reporter and then a photographer to observe our little family. I have held on to this one piece of memorabilia for some unknown reason. The pictures take me back to a time when my energy was so spent.

After our first trip overseas, Chris and I were eager to return, so in 1999 we did just that. We took a vacation to London, U.K. for 10 days. Since we had met a few families in 1997, we were honored to be invited to the personal home of a family in London. We had a lovely dinner and shared experiences with 4 other families. We sat around a large table, shared wine and especially stories of our lives in living with Fragile X.  The words escape me to describe how wonderful this was. Many of these families are no longer involved in the fragile X world, and I miss them.

Next Steps

As we approached the end of our first real decade in living with Fragile X Syndrome, we still had many emotions and other issues that had to be dealt with.  We knew it.  Now we felt like we had some of the tools we needed to go forward.  We still had some learning to do, but we knew more than we started with! 

I have always been told that I am a very “pragmatic” person.  Even with something as major as Fragile X, I never really focused on the “why” question or the possible answers.  Everyone is different in how they handle such a big things in their life.  I tend to be one more for action than questions.  Some may call this being a “fixer”.  Heck, if something doesn’t work, try again, that’s my motto!  I am sure I had many sad moments that involved grieving for the loss of our expectations, etc.  Or, maybe we never had any?  I don’t really know now.  We were very much engrossed in the day-to-day care of the boys, juggling all of the school issues, and trying to provide what we thought was a quality life.  We still had more work to do and more challenges to come.

But what we DID have was a sense of bond with many other families.  To think that something called Fragile X brought together strangers from all over the country and the world, and made a new community.  We never had to feel alone again.  We also had a real sense of purpose that would help motivate us when the times got really tough….and we knew those days would come.
Continue reading part 2 here http://www.mrsrogersfxneighborhood.blogspot.com/2013/01/my-fragile-x-life-chronological-history_18.html



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