Earlier I wrote about our first decade of living with fragile X syndrome. To read Part 1 click here: http://mrsrogersfxneighborhood.blogspot.com/2013/01/my-fragile-x-life-chronological-history.html.
For us, the 1990’s were a decade of learning, evolving and, grieving. Even with as much as we had learned already in our journey, there was still much work to be done, especially on the home front. The 2000’s turned out to be a decade of changes, challenges, and implementation.
What follows is part two 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.
A New Decade
The new millennium brought many new adventures our way. There was still much work to be done, especially on our own home front. We shifted our priorities from trying to raise awareness to just focusing on how to help our own boys. We were now ready to face the reality that lay before us. It took us some time to be able to “face the music”, but we knew it was the next step in the grieving process.
At some point, what we really discovered, again I don’t remember when, was that this long journey…..was all about US. We were the ones experiencing change; we were the ones grieving; we were the ones facing the challenges. The boys were just the boys. They were born with this thing called Fragile X, and they knew no different. They were simply waiting; waiting for us to get our “poop in a group” and love them, and teach them, and face them. This was the revelation.
In the summer of 2000, the 7th International Fragile X Conference was held in Los Angeles, CA. By this time, my whole family was very invested and involved in Fragile X so my Mother, Father, Sister, and I attended this one. It was at this conference that I met some other long-time friends in the Fragile X community, like Kareen Weidenfeller and Tracey Shaffer Weinstein. Both of these ladies’ smiles are always present and always evident at every conference. They both also have children about the same age as my boys, which helped form a bond among us that remains unbroken.
Up to this point, Jake and Joe had been cute, adorable, loving, cuddly little boys. Chris and I were able to manage their day-to-day care, even with both of us working full-time. But, now they both required more therapy and a much bigger slice of the “time pie”. If one or the other was sick or needed to go to the Dr., one of us had to take off work, and this was a lot! We both pitched in and survived this time period, but I have no idea how. I suspect it can be attributed to sleep-deprivation.
In 2001, I decided to give up my full-time career for a more challenging daily life; managing my own boys. Even though my paid job required 60 hours a week, this new challenge proved to be no simple feat! Jake was 11 and Joe was 9. Puberty was just around the corner and behaviors and changes were upon us. It took me nearly 6 months to adjust to this new lifestyle. After that, I planted my feet deep in the soil and held on.
This same time period was also a big year of change for the professionals that had been in Denver. Dr. Randi Hagerman, Dr. Paul Hagerman and his team, as well as Tracey Stackhouse and Sarah Scharfenaker (a.k.a. “Mouse), and others moved their practice to Sacramento, CA, to the M.I.N.D. Institute. This was a huge change for us and for the Fragile X community of Denver. The National Fragile X Foundation had already been relocated to California, so Denver almost seemed like a ghost town. For us, it also meant an end to the weekly visits with FX families, something we missed very much. Additionally, I passed the torch for managing the Denver support group. I needed to focus solely on our family.
Finding my “Path to Purpose”
We worked with various therapists for a time, continuing the methods and strategies that we had learned prior to this point. In late 2002, Tracy and Mouse moved back to Denver. In 2003, they founded their own non-profit company, Developmental FX. What a miracle!!! Now they were in Denver full time and providing multidisciplinary assessments, intervention, consultation, and follow-up in the areas of occupational and speech/language therapy, psychology and developmental medicine, for children and families. As a bonus, I could say, “I KNOW THEM!!!” We worked together very intensely for several years developing a specific plan for our boys. We refined and “perfected” tasks and methods just for Jake and Joe.
Looking back, I believe that prior to this time I was not ready to take in or hear what needed done. Of course, I had heard many of the very same strategies and methods to try from many others before this, but I wasn't ready to listen. As they say, "Necessity breeds invention". I understood now.
In July, 2008, I gave my first presentation of “Mrs. Rogers Neighborhood” (a seminar about living the "Fragile X Way") at the 11th International Fragile X Conference in St. Louis, MO. I was so nervous!!! I was sharing very personal elements about our family and our boys. The crowd was very quiet as I gave specific details about using visual schedules and some of the most difficult challenges we had faced. I cried along with the audience as the final video played. The session was over and I felt so proud of myself for doing it. Sharing my own personal feelings was very difficult, but talking about our boys was easy.
Afterward, many, Moms’ in particular, approached me with questions and requests for more information. I knew then that my mission was clear. I needed to be available for FX families; to spread the word about what our kids with Fragile X CAN DO! I needed to convey to other parents how much IS possible. Most of all, I needed to spread hope that it would be ok. We now knew that it would.
Since that first presentation of “Mrs. Rogers Neighborhood”, I have had the privilege of presenting alongside Tracy and Mouse, the ones that mentored me, on many occasions. It is an honor to observe and learn from such experts who have dedicated their lives to helping create quality lives through treatment and support.
Chris, my patient and amazing husband, and I really started to shift our lives and our thought processes in the 2000’s. We started to see the potential in our children, as well as what our priorities needed to be. We began to make a written plan, and to implement many aspects of that plan. We became empowered.
In 2010, the conference was in Detroit, MI. With every single one I attended, I saw more and more friends and learned more and more good information. With every International conference I also have a renewed enthusiasm in helping others and spreading hope by sharing our story. While there, I was a little bit overwhelmed by all of the new technology that had pushed its way into other kid’s lives while I wasn’t looking! Thank goodness I had a few awesome new friends to help explain it to me! I met Holly Usrey Roos and Eric and Melissa Welin one evening during the conference. To this day, we still laugh about the discussion that night and my lack of technical skills. They have worked so hard and patiently with me, and a friendship has blossomed like no other. Like many others, this friendship started as a speck, but has grown to be so meaningful.
In 2012, I also had the privilege of going to Guatemala and talking to parents there. Even in the face of very challenging ways, these parents still had much hope. The new friendships formed there are genuine and sincere.
Fast Forward to Today
There are conferences held, like the one held in Miami in the summer of 2012, that draw well over 1,000 attendants from all corners of the world. This is due in no small part to the hard work of the many folks that now work for the National Fragile X Foundation. Even though this was my 9th conference to attend (I skipped Washington, D.C. and Atlanta so I could focus on my own boys), it was still very familiar and very overwhelming. I have come to realize that the learning and emotions are part of the evolution and a necessary part of the puzzle.
Parents are now connected daily by way of social media such as Facebook. They are united through activities that raise thousands of dollars each year to support the mission closest to their heart. LINKS groups (local Fragile X support groups) are established all over the U.S. bringing families together through organized and not-so-organized means (perhaps a FX moms a “ladies night out”). The bond among strangers and the unification of individuals is reaching points we never imagined as we sat around our dining table back in 1995.
Doctors are more educated and actually provide treatment to children and adults with Fragile X syndrome, FXTAS, FXPOI, and many other things that were previously unknown. The future of this field is very hopeful.
I have thousands of friends all over the world that I can talk to whenever I want. We are able to share concerns, tears and laughter over things we have been through or are going through right now. It’s amazing.
So much has changed in the world of Fragile X and it is our duty and honor to pass the torch, to make sure that others know our common history, to remember the ones are that cut the track and then paved the way. It is important not to forget who:
Discovered Fragile X;
Founded the National Fragile X Foundation;
Makes each and every International Conference possible;
Discovered ground-breaking methods for day-to-day functioning of our kids;
Has seen families constantly and cared for them;
Has dedicated their lives to this genetic cause;
Lobbied for monumental legislation like IDEA;
Helped create educational innovations such as “Integration”;
Continues to research and discover new and amazing things about Fragile X;
Saw a need to bring together families and organize support.
Look them up and become familiar with them. It is our history and we need to know.
All of these things are ongoing, but they had to start somewhere. I was mostly just a spectator, but when I was a participant, it was my privilege. All of this history is what makes me who I am today. Then, I couldn’t imagine my life with Fragile X. Now, I cannot imagine my life without Fragile X. Kind of ironic, isn’t it?
Looking to Tomorrow
As I recollect my past and that of my family I am struck by the vast contrast between our lives now and the hardships endured by our ancestors before us. Whether it is the challenges of Fragile X, or suffering, or tragic death…they all teach us lessons. Our story is unique, but it is not different. It gives us perspective. The rewards for being a parent of kids affected by Fragile X are not extrinsic. My perspective comes with inner accolades.
After 21 years of Fragile X, we are now able to realize that the Fragile X world is only a small part of the grander universe, just one star in the Milky Way. Yet, we have spent almost half our lives immersed in this world. Sometimes I wish I could just “opt out”, like that first Mom I called. Obviously, that was not the road for me. I have no idea how long Chris and I will continue to be involved. Only time will tell. For now, Jake and Joe still live at home with us and we have some years left to work before we can retire, so in reality, “Fragile X still lives here”. Our future is still being told and we are still working on the final outcome. We have our list, and our goals, many of which are checked off. We will continue to plug away.
As a person, I believe I have grown more than I ever imagined. When I was young I had a very idealistic view of what my life would become. I was very goal-oriented, and I still am, but now those goals are realistic and measureable. My life has exceeded those goals. Never did I imagine that I would have the patience I have, or the passion for life, or the level of personal satisfaction that I have reached.
As a couple, Chris and I are stronger than most others we know. This thing called Fragile X has helped us grow together in a way most will never experience. We have a unified mission that drives us each and every day. It’s forever.
As a family, we are committed to making a beautiful life together and going the full distance. I think we are on the right path. One of my favorite sayings is, “Your perspective is only as deep as your experience”. I think we have a pretty vast and positive perspective.
From where I am sitting now, it is so peaceful to look back now. To see how much we were able to positively affect change in our boys once we figured out what really needed done. The realization that it was us that needed to change, not the boys. Once we resolved ourselves to bending to meet them where they were, and working hard to lift them up…..life became good. Once we realized how we would fit into their lives…..contentment settled in.
If only it were easier to help others see through the lens of my life. If only I could help other parents skip the hard part. This would be heavenly. I will keep reaching down to lift them up if I can. I will keep telling others about how good life can be with Fragile X tagging along. Chris and I will keep plugging away at giving our boys everything that we can. It’s going to be ok….we know that now.
I often defer to the words of Mr. Fred Rogers of “Mister Rogers Neighborhood”, as his words give me much comfort:
“Very early in our children's lives we will be forced to realize that the "perfect" untroubled life we'd like for them is just a fantasy. In daily living, tears and fights and doing things we don't want to do are all part of our human ways of developing into adults.”~~Fred Rogers