Perspective has been a great
teacher and I, a great student.
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
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
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
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?”
Things happen in life. Sometimes they are things we planned, and other times not.
When it comes to life choices
I imagine the first real experience as an adult should be like the entry gates to
Disney World. There would be several
lines to choose from. So, when our
parents are finished with their initial job of raising us, we get in a line. Of course, a greeter would direct each person.
“The line to my right is for
ice water. This life is plain,
predictable and quite boring. You will
have security, but only a few select friends, and no spontaneity at all”, he
“Now, the line to my left is
for lemonade. The lemonade line is for
those who want unpredictability; a life full of diversity, some excitement, some challenge, and lots of friends.
This life will be hard, but fulfilling.”
Everyone knows the saying, "When you get lemons, make lemonade". Well, as a young adult, I never drank lemonade, and I surely didn't want to have to make it! I know I
would have chosen ice water. No doubt in
my mind. I preferred predictability (although
there wasn’t much in reality—is there ever?), and I would have thrived on the
mundane. Of course, that’s not reality at
When I think about the
choices I have made I am content. For
example, had I not chosen to take 7th grade French class, I
never would have met Chris, my husband.
I cannot even imagine life without him.
We chose to have children,
and hoped that our first would be a boy.
He was born and that was a blessing.
We had a second child, and
it, too, was a boy. Now, here is the
part where I say, be careful what you wish for, as it may come true.
In 1991, we learned that both
of our boys were affected by a genetic disability called Fragile X
Syndrome. The rate of Fragile X in boys
is much higher than in girls. How could
that possibly be a blessing? Most, like us, fail to see how this could be a blessing.
When we would watch our sons
struggle to make it through each day, we did not think it was even close to a
blessing. When we cried daily, weekly or
monthly over another lesson that we were forced to learn; one that we never intended to
learn, how was that any kind of blessing?
Being forced to learn all of the laws pertaining to an education for our
boys, or learning which medicine caused fewer side effects, or how to get one
whole night of sleep…these were not things we asked for or wanted. How was that a blessing?
Seeing one’s children suffer
to exist in a world full of sensory stimuli when they couldn't deal with it, was
literally torture on a parent. We were
consumed by so much grief and suffering that we could not possibly see any kind
of blessing. We just hoped for survival.
Once, when the boys were
little, we even attempted to take a vacation to a dude ranch in Aspen,
Colorado. The large amount of cash spent
and the unsuccessfulness of it--that was not a lesson we wanted to learn. We wanted to have a good time and see our
boys in a happy state. That did not happen, but, we did
Another time, after trying to
figure out what might work for them and help their world co-exist with ours, we
took another vacation to a cabin in the Colorado Mountains. Another failure. Another lesson.
Other lessons were daily
ones, like trying to keep Jake interested in school so that his behavior wouldn’t
become a pattern and pave the way for more of the same. I am sure I could list at least 100,000 more
examples of lessons learned, but that would bore even the Pope. Suffice it to say that, we have had our
So, now that Jake and Joe are
adults, we can reflect and see the contrasts.
We have arrived at a peaceful place where enough time has passed that we
can clearly see the reasons for these lessons.
I cannot imagine life without
the Fragile X Family that we have grown so close to and depend on for
support. Life would be quite lonely
without them. We have friends that we
treasure dearly that are not associated with Fragile X, but I believe that the outlook
we share with all of our friends stems from our perspective gained from Fragile
I am thankful that we sought
answers when, as a baby, Jake was not speaking a single word. Imagine!
Being thankful for that! But,
this caused us to go to the Children’s Hospital of Denver where we met Dr.
Randi Hagerman, and subsequently got a diagnosis of Fragile X Syndrome.
Had we not had difficult
behaviors with both boys, we never would have sought a solution. We never would have met Tracy Stackhouse and
Sarah Scharfenaker (owners of Developmental FX and “Rockstars” of the FX world). Now that we are here, they have and will
always play an important role in all of our lives. They taught us all we know when it comes to
day-to-day life with Fragile X and its source.
Had it not been for them, I would have never learned enough to be able
to present “Mrs. Rogers Neighborhood” to all of the families that I have. It has been such a pleasure to share the
stories of our life with others in hopes of bringing them their own hope. This is a big part of who I am.
If Jake never had behavior
issues in school I would have never had the idea of creating the reward system
that he still uses today.
For Joe, if he had never had
all of the difficult and extreme behaviors that he’s had, we never would have
learned all of the 1,000 ways to help him and allow him to be a participant in
life….not just a lost soul.
If we had never had those
dreadful vacations, we would never have bought “Rocket” (our RV), and had all of
the memories that it has brought us. We
figured out how to makes vacations doable for the whole family. It has also allowed us to connect with others
that like to travel and camp with Fragile X kids, like the Brian Family from
Georgia and the Kelm family from Calgary, Canada. In fact, I remember the day that Lisa Overton
Brian came to me with photos of their first camping experience. They were so excited to tell me how
successful it was for their son, and that they were inspired by our “Rocket”
story. We look forward to many other
stories of families enjoying new experiences like we do.
I wouldn’t wish these lessons
on anyone, don’t get me wrong. I would
not suggest that anyone stand in the lemonade line, except maybe to keep me
company. I am certain that I am not
through with lemonade, or lessons. In
fact, I hope not! That’s a lie….some of
the lessons I could do without…..Now, I just enjoy my lemonade with a lot of
friends, with my family and with a shot of rum.