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.
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
would explain.
“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
all.
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
learn.
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
share.
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
X.
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.
Thanks for sharing. Loved this post!!!
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