When I was young, I would sit on the porch in the summertime eating my cherry Popsicle with my best friend. We would complain about the utter heat until perspective reminded us of the -20 degrees that we had complained about 6 months prior.
There was a blind young lady that lived across the street from us when I was very young. She taught me, even at a young age, about compassion and empathy. Never mind, the fact that she taught me to appreciate the gift of sight. As I walked with her through our neighborhood, her holding my hand, I often wondered what it would be like to not be able to see everything around me.
As I got older, and my boys were born, perspective was still teaching me. When Jake was diagnosed with Fragile X Syndrome (www.fragilex.org), and Joe soon after as an infant, I questioned how it could get any worse for me? Raising 2 boys with a severe developmental disability was not a perspective I wanted to learn! But, when Jake entered preschool and I observed children that had a limited life-span, or a condition that required much more care than he, I was again, the student of perspective.
As the years went by we were privileged to become acquainted with hundreds of other families with children affected by Fragile X Syndrome. At first, our boys were always younger than those we met which provided us with lots of perspective about the future. We clung to each and every tip or hint given to us, and to the hope for the day-to-day coping skills we so desperately needed. Hearing that kids older than ours learned to do things for themselves and held jobs, was a welcomed perspective. We weren’t alone. I gave myself permission to shed tears.
I clearly recall the first family we met at our home with young adult boys. This experience gave us a whole new perspective on what our future might look like. It was a little bit scary at first, but in many ways it was much better than what our own imaginations had created in our minds. These young men were well behaved, mostly independent, and of course, handsome. These families provided us with perspective without even knowing it.
Then, and very subtly, all of the families began to have kids that were younger than ours. We became the teacher without even really realizing it. We didn’t really understand how our challenges could give others something to cling to. It was a matter of the cycle of experience….a natural progression.
Sometimes perspective comes from things that have happened to me….like I was my own teacher and student at the same time. For example, today when I observed Joe doing something with ease that only 5 years ago was a struggle, the evidence is clear that time can be a teacher all by itself.
Even during the small events of life, perspective has been there to remind me, or help me see difficult things differently. Like when we go to a restaurant (something that was almost impossible when the boys were young) and something about the food is not satisfactory. Perspective helps me focus on how well my boys are behaving and shift my mind to what’s important. Or when we have a serious mechanical issue with the RV while we are travelling….even though my instinct dictates that I freak out, I realize those boys are “going with the flow” and figure I might as well, too.
Perspective has taught me to say “oh well”. Outside of the Fragile X World, without even knowing it, I have been a teacher. A friend of mine came up to me the other day and said, “Oh, Cindi…remember the other day when we were talking and I was complaining about how I was disappointed in my son? I so desperately want grandchildren, but he is not ready and we don’t see any sign of it? Well, I wanted to apologize. When I see you and your strength with your life and how you deal with your boys, I am inspired. I had no right to complain.” I replied, “Oh my gosh! Don’t apologize! We all have things in our life that are not to our expectations. But, I am glad I can provide some perspective for you. You never need to apologize to me. I, too, have gained perspective from others that have had it worse than I.”
As we face the prospect of moving to the next chapter in our boys’ lives, we will be looking for perspective, but we will continue to provide some, too. The groundwork has been laid. We are moving to a phase where we need some perspective from outside of the Fragile X World…….to know that there is another life out there. That is the next phase.
What a gift perspective has been for us. I hope that all of the experiences we’ve had with our boys can help others in the Fragile X World to see that hope exists. I want to provide that perspective and be sure that it sticks like glue. No matter what the world may throw at other families, they can survive. They can move forward. They can thrive. They can have a great quality of life even with Fragile X Syndrome.
A quote from Anton Ego in the movie “Ratatouille”: “…… you know what I'm craving? A little perspective. That's it. I'd like some fresh, clear, well-seasoned perspective. Can you suggest a good wine to go with that?”