We did all of the stuff our parents and friends had advised us to do. We did all of the Pediatrician appointments right on schedule. We immunized. We fed him when he was hungry, and changed him when he was soiled. When I watched commercials on television, I could relate to every baby commercial. It was all as expected. We were so happy.
As he grew, there were little things that didn’t mesh with what experts said was common. We worried a little bit, but, we went on with life and all of its joy. Those were the days of carefree thoughts and hope for the future.
Then, in 1991, when our newborn was 3 days old, we got the news that Jake had Fragile X Syndrome. Subsequently, a few months later, Joe was also diagnosed with it. The fantasy life was over….at least we thought so. Much time has passed now….22 years…..and we have come full circle.
Yes, Fragile X Syndrome does exist. Yes, my 2 boys are affected by this genetic developmental disability. Yes, we’ve known for 22 years. But, lately I’ve been thinking about other things. Life things.
I think about when my boys were young and when Fragile X and all of its evil symptoms reared their ugly heads daily. We were consumed with the management of it; we were raising awareness so their world would know more about it and accept them; and we were busy with their full-time care. Now, not so much. It’s because we did something. I know that now.
Beginning when our boys were about 8 and 10 years old, we rallied all of the troops (our “team” as it were) to make a difference in their lives. We studied every method and approach known at the time. We tried them out to see what worked and what didn’t (we are still working on that one), and we implemented one at a time. Slowly, but surely, over the next 8-10 years we saw progress. Some progress was almost immediate, but other things required more patience. We saw these boys come to life and be able to do things on their own. Don’t get me wrong…..it takes a lot of patience and perseverance on our part to make each little thing work. In fact, when it comes to a routine task like brushing teeth, we are still trying to figure out each minute step. But, we have not given up! There are many other skills to work on as well, but one at a time! We don’t feel in such a rush for time to pass by.
Of course, we did the annual (and sometimes bi-annual) visits to the experts. We tried no less than 30 different medications. Some worked as expected….others not so much, but, we tried. We pursued every therapy known to man, and did the work at home to reinforce it and build consistency. There were no guarantees…only the hope that our efforts would reveal a small glimmer of hope.
How do I know things have shifted? I can see a newborn baby and not be jealous of the possibility of a “typical life”. I can see a wedding and not cry for what could have been. I can see kids now and just see the kids. And, most of all, I can see my boys as human beings…..not as “boys with Fragile X Syndrome”.
We get up each day knowing that progress can happen with the right support and knowledge. We have hope for the future. We can see change happening right before our eyes still to this day. It is very empowering to know that WE did this. All 4 of us together. We made the effort and the boys rose to the challenge.
Which brings us to the current day. Nothing is perfect, and neither is our life. But, we have the tools and resources our boys need to keep going. We don’t have to worry about every detail every day. We still work on skills and proficiency and patience. We worry about whether the “plan” will work out the way we think it should. We worry that there will be enough money to take care of all of it.
Yes, Fragile X still lives here. It’s genetic! It’s not going away! But, time and effort has allowed me not to think about it every waking minute. Now, I cannot help but think about our business, about a relaxing vacation on the beach (someday), about taking off in “Rocket” (our RV) and HAVING a peaceful weekend WITH the guys. Yes, it’s all come full circle now.
I actually find myself daydreaming about typical things, like retirement (it’s still some years away, unfortunately) or recalling memories with friends that have nothing to do with Fragile X. I can even think about myself. I can take time to go for a 3-mile walk. I can enjoy time with my book club, after having actually READ the book!
I like to think about this as an evolution. A real life natural evolution. Is this the way things are supposed to be? Perhaps, for our children to consume our every waking moment until they are young adults and then allow ourselves to move on IS the natural evolution? A way to move forward? To emerge as a person now, and not just a parent? That all sounds pretty typical to me.