Monday, May 18, 2015

Life is Like.....A Car?

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