I’ve been thinking a lot
lately about the incredible number of analogies that exist between life and a
car. That’s right….a car! Stay with me here while I attempt to explain.
I specifically chose the photo of this car for several reasons. First, it's a bit battered, but probably still runs--let's hold with that assumption. It may be a bit slower than other cars, but still makes it to its destination. It still holds people, but may pose a few sensory issues for some of its occupants. It's a car. For me, there is a lot of symmetry between this car and my own life.
After our marriage, our first
car was equivalent to a put-it-together-yourself model without directions, of course. We spent countless hours attempting to get it
assembled. It was a work in
progress. Finally, one day, we had it to
a point where it was at least driveable.
It could have used some upgrades and a lot of tweaking, but it
moved us from point A to point B.
Sometimes, we would move forward two or three miles, only to seemingly go in reverse for one. This was the first 5 years of our
marriage.
Occasionally, we would veer
off of the normal path, but eventually, we made it back to the main road. We spent, what seemed like brief moments, at
nice, relaxing spots in order to rejuvenate from the hustle and bustle of the
main road and it’s traffic. We would sit
and enjoy a drink or meal with friends and breathe deep, heavy sighs and be
thankful that our do-it-yourself car was still rolling down the road. After a
brief respite, we would get right back into the heavy stop-and-go traffic that
was our life. We traveled through uncontrolled
jam-ups that resulted from minor to serious accidents caused by those not
paying attention to what was going on around them. We persevered.
As we decided to veer off the
straight and narrow path and pursue having a family, we discovered that our
exit ramp was extremely long, but eventually we made it to the point of
parenthood.
Pretty soon, we had two new,
incredibly cute occupants in our car of life. Car seats safely placed, we hit
an incredibly serious bump that caused us to deviate from the road we were on…..permanently. Our new occupants, two sons, were diagnosed
with a genetic developmentally disability called fragile X syndrome.
No matter what analogy you
use, this kind of shock will rock your world.
No amount of “service” will cure it or make it go away. That is true for us as parents. There is no
medication or therapy that will prevent this from being a lifelong contender
for our sons, either. Fragile X syndrome
is genetic. There is no cure. There are
however, some “maintenance” techniques that can help make our life and that of
our children, a quality life.
My husband and I have spent many years learning and honing these methods and techniques. We are still learning. We are still driving and perfecting. We have learned some of these very methods
from our two sons, like patience and how to keep calm in the face of
chaos. Some we have learned from experts
in an effort to help our sons; things like a method called ready-not-ready, or
when to use a picture schedule (always).
Some things just take time and cannot be prepared for.
Our sons are now 24 and 26
years old, and we have had our diagnosis for 24 years, but there is no set
method for preparing yourself emotionally for what this life may bring. I am fortunate to have a husband that is incredibly
supportive, and I to him—that helps A LOT.
We also have our fragile X community, and over the years this has been a
pillar of support and hope to keep us upright and breathing.
We have maintained hope
through every IEP (most of them anyway), through inconceivable challenges that
anyone with “typical” children will never know, and while watching our youngest
stand up and walk through graduation with his class at Columbine High
School. These things give us hope that we can overcome anything that comes our way. But, that doesn't mean that, even though we
rarely suffer sudden and palpable sadness due to our 24 years of
grieving, that we never do. We do.
Those old, unwelcome feelings
that remind us that life is not fair….that everyone is different….come slowly
back to haunt us. We don’t ask for them,
and we try desperately to suppress them. Oh, how we
try. They are rare, but still smoldering
way down deep in the tear-producing glands.
I remember those horrible,
unwanted feelings being more frequent when our boys were young. Like when a friend or relative had a healthy
baby, or when someone bragged (rightfully) about what their child achieved. I would grieve for what I didn't have. It’s
not that I begrudge someone else these joys….I just wanted to experience them, too.
Don’t get me wrong! We have certainly had our share of joy, but,
not at the same pace and not in the same way.
We have learned to adjust and to savor small moments of joy. But, now it is different.
It seems to me that all
through the school years, and all through the sports and graduation from high
school, that I could cope. I saw our
sons’ achievements as closely met, but now, real life begins and the changes
and contrasts are stark.
It’s May and this time of
year is full of transitions, celebrations and changes. Many (shall I say most?) of the “kids” that
our youngest went to school with are graduating from college. Five years have passed since that joyous
graduation from high school, and the natural evolution of things has come to
pass. Some are even getting married.
Yesterday, we attended the
wedding of two of the most supportive, patient and important people in our sons’
lives to-date. We knew for a full year
that it was coming, so it’s not like I didn't have time to prepare. In fact, I spent the past 3 months sewing a
special gift for the bride and groom. I
don’t know why….wait, I do know why I volunteered….it was a phenomenal
diversion for me and my damned emotions.
It turns out that one of the Groomsmen requested to have a garment cover
for the reception since pasta was on the menu, so the Bride, in all of her
kindness, decided that the entire wedding party (all 12 of them) needed one, too! So, I phoned the Mother of the Groom and secretly
arranged to create them.
I carefully cut my own
pattern out of newspaper, chose the fabrics, one for the girls and one for the
guys, and set out to get creative—something that does not come naturally for
me. In all of my genius, I decided that
each one should have the individual's name on them, but I had no idea how I
was going to do this step. My meager sewing machine is not capable of fancy stitches. I reached out
to a dear friend in my very own safe, amazing, fragile X community, Miss
Angie. We collaborated (I listened more
and she offered her expertise) and came up with a plan. I mailed the finished portions of the bibs,
as I like to call them, to her; she finished the beautiful embroidery and
mailed them back to me to complete.
All of this time, this three
months or so, gave me time to contemplate, to absorb, to learn to acclimate, to
accept the beauty of this union, and to grieve my own lack of ever getting to
experience it myself. I grappled with the notion that I will never plan a wedding for my two beautiful, albeit handsome, sons. I will never celebrate the joy of holding a grandchild. I had to have this
time to “keep my motor running in smooth order”.
It was a most beautiful and joyous wedding
for which both guys did attend, thank you very much. Over the years, part of our learning and
coping has been centered around how to make life experiences possible for them
even though it takes more effort than I care to share. It wasn't without planning or forethought or
love; but even though these situations can be difficult for them to attend, we
did it! That in itself was a small
moment of joy to celebrate. My husband,
too, teared up as his vulnerability was exposed. The Bride and Groom were elated that we came
and that we got to share their special day with them. Little do they know how much it meant to
us.
Our life will go on the same
each and every day. I now know that it’s
a blessing if everything IS the same and not worse. I have that perspective. We will keep traveling on this journey of
life, on this ever-winding-sometimes-bumpy road, with our loving convoy, in our
trusty old car, with the best occupants anyone could ask for…..knowing that it
will all be OK. If you pass a post office on your own road, please send gas money.
To learn more about me, Fragile X and my scholarship fund that supports families, please visit my website at http://rogersneighborhoodfxfamilyfund.com/
