Thursday, July 30, 2015

If I Couldn't Laugh, I Might Cry

As I am about to celebrate 30 years of wedded bliss, I am inclined to write down my thoughts on past perspective before I lose my ever-lovin’ memory.  If you asked my husband, he might protest that it’s far too late. Yes, it’s been 30 wonderful years, but I can still look back and kick myself for all of the things I took for granted before we had children; for granted before I was blessed with two beautiful sons that were born with an unbeknownst-to-us genetic developmental disability called fragile X syndrome (more on that later).

So, for those of you that are young, gazing into the eyes of your adoring partner, dreaming about marriage and kids—here is my advice to you.  Yes, I do have the gall to give such advice even though I am not a Marriage Counselor, a Priest or even a Psychologist.  But, my years of foregone experience give me the right to bestow such liberties upon you.

The next time you lay in bed feeling luminous and satiated from the amazing sexual encounter you just had with your husband, relish that feeling as if you may never have it again.  Truth is, once you have kids you probably won’t.  Or as Author Peter DeVries so eloquently stated, “Sex in marriage is like medicine. Three times a day for the first week. Then once a day for another week. Then once every three or four days till the condition clears up.” My reality became that sleep and sex are overrated.  My youngest son didn’t sleep through the night until he was seven years old!  This is a well-known difficulty for children diagnosed with fragile X syndrome.  We know it only as nature’s birth control, asking myself why I ever thought having one child was hard.  You may want to ask yourself how important that satiated feeling is to you, and wipe that smile off your face because it makes me insanely jealous.

You probably have some idea about how much money you will need to save before you start a family.  Perhaps you have a healthy nest egg already.  Well, whatever amount you think you will need, triple it.  You see, fragile X syndrome is carried by 1 in approximately 151 women/1 in 468 men, and affects 1 in 3,600 males and 1 in 4,000 females.  That means that your chance of having a child with fragile X is not a rare one!  If you do have one, you can count on spending insane amounts of money on weekly speech therapy from a very young age, only to have the child’s first word be something like “bitch” as was the case with my oldest.  Needless to say, we increased the Speech Therapy to twice a week.

Have you made the call to Better Homes and Gardens requesting a visit to your perfectly coiffed home?  Well, if blessed with a son or daughter with full mutation fragile X, you might want to renege on that one.  In fact, if I have caught you prior to the acquisition of new, well-appointed furnishings made of high quality Italian leather, then I can rest on my principals.  Save the speech therapy money and buy something just nice enough to comfort a restless baby up to three times a night, and ones that will not cause guilt when you throw it to the curb after it’s been puked and pooped on numerous times until even the dog will not go near it.  In fact, spend a few dollars foofing up the bathroom, because this is the one room you will spend endless hours in.  In my own case, after our sons turned 7 and 9 years old, we had to demolish entire main bath due to waves of water that had made its way to the floor, only to rot out everything all the way through the floorboards.  As a replacement, my husband even contemplated putting a floor drain in the middle of the bathroom to ease cleanup when it necessitated using a hose, surrounded by a concrete floor!  Not the most appealing or most beautiful, but certainly the most practical.  You might also want to keep note of this fact; our main bathroom is the smallest room in the house, but the one place where we all seem to end up at the same time!  We may need to start a new trend in home marketing with words like “roomier bathroom”, or “most-used room becomes the roomiest”.  Please get to work on that right away so that Architects can start to design such models.

As you drive to work today or tomorrow, listening to whatever music you choose, feeling the wind in your hair, relishing a few quiet moments of peace and quiet… may want to record those for later.  Pay special attention to the many moments you have to focus and reflect on yourself or your life.  These will be fewer and fewer with any child, but one with fragile X will add another layer of scarcity.  For example, my youngest son cried and screamed until he was literally nine months old…I kid you not.  This includes his time in the car, in the car seat, or anywhere else for that matter.  Yeah….it was easy to concentrate while I drove him anywhere-not.  It did help though when I gave him whatever snack would keep him quiet like Ritz crackers (these are great because they are super fine in texture and make excellent crumbs all over your beautiful convertible), or his bottle full of red Gatorade so he could suck half of it, leaving the other half all over the light upholstery of my beloved car.  Save the newly acquired need-for-Occupational-Therapy-money and buy a used car good enough to get you from point A to point B.  Yep!  We spent incongruous amounts of money on occupational therapy due to the fact that many children affected with fragile X syndrome have sensory difficulties, motor planning issues and overstimulation that can lead to behaviors.  You might want to acquire a financial planner right now! 

How do you feel about cleaning products, toilet paper and paper towels?  Not particularly concerned about these household essentials?  Well, get ready.  You will find yourself standing still, hand-on-chin, gazing blankly while furrowing your brow at the perplexing array of choices in your neighborhood grocery store.  Heck, you might even loiter there just to have that one quiet moment to yourself while your spouse is at home minding the offspring!  Regardless, this will become an ever-important decision.  Which paper towel can contain a splatter of vomit without touching your hand?  In my humble opinion (and I will write a letter to the manufacturers when I get time) I have found that it might be nice if the manufacturers would add that scented ingredient to paper towels so that I could avoid my own involuntary urge to hurl into the already noxious pile.  Have a puppy and think this might be somehow equivalent—not even close—trust me.  Oh, and toilet paper!  I cannot say enough about strength here.  Soft is nice, but my first priority is put on its ability to divert my finger from going through the stuff as I assist whoever hollers, “Mom!” from that small-yet-glamorous bathroom.  Seriously though, these issues are no laughing matter (although I have found myself delirious from the occasional day that seems completely consumed by matters of the rear-end), but I do get some momentary relief from a deep, fulfilling laugh.  Days like this remind me that if I didn’t laugh I might cry.

Speaking of tears….are you a crier?  I never was in my early years.  I thought I was tough as nails.  The grief that overtook me after hearing the devastating diagnosis for both of my sons, rocked me to the core.  Wine.  Wine was the one glass full that could help heal, but certainly did not cure fragile X.  There is no known cure for this syndrome.  It took me years (in fact, based on wine consumption, I may still be in the throws of grief) to overcome the full stages of grief that accompany the loss of those expectations I had for my children.  So, my one piece of advice here must be to become an expert in wine.

Are you feeling particularly healthy at this stage in your life?  You go to the gym every single day?  Feel the burn?  Look great in a Speedo or bikini?  Now, I’m not going to say that this is true for all parents, but….hey…..the reality is that you are never again, as long as your children are living at home, going to have the surplus of time you have now.  I suggest keeping a detailed diary and calendar.  When it’s full, don’t just throw it away.  When the year is done, carefully file it so that later on you can look back at it and see what a narrow perspective you had….errrrr…I mean, what a quality life you had.  In fact, take some of that time and book an appointment right now with your Doctor and have a blood test for a genetic developmental disability that could be lurking in your very own family.  It’s possible ya’ know.  I had never heard of fragile X syndrome prior to my oldest son being diagnosed at the age of 2, just after our youngest was born.  He too, was subsequently diagnosed with it.  It’s a simple blood test!  Perhaps you have a distant relative with some challenges that are unexplained.  Perhaps your spouse does.  Now, don’t get me wrong here…I am not saying that I regret having my two, lovely, loving, amazing sons.  I am just saying that you should give it some real thought before you jump on that rapidly moving train called “Family”.  Reach way down deep inside you and ask the question, “Can I, can my marriage, can my life support a possible child born with a developmental disability?” I sometimes wish I had had that option. There is a 1 in 151 chance the female in your relationship could carry this fragile X gene like I did.

I promised myself I would not attempt to give marital advice to you based on having a child with any kind of disability.  That would require way too much generalization.  But, in all seriousness, I am blessed with the most loyal, loving, dependable, handy, sexy, encouraging husband.  I could probably come up with 1,000 complimentary words to use for him, but trust me when I say that “patient” would not be one of them.  We have worked very hard to make a marriage that works for us and is destined to endure whatever comes our way.  Having a child or children with special needs will try every single sliver of patience you thought you ever had!  But, that one single moment when you see your son make a basket after trying desperately for 7 years of playing basketball, or independently complete a puzzle he’d been working on for months with therapists, or even the first time they hug you and say the words “I love you”.  These are special moments that will bring you to happy tears.  It is these moments that can cause me to lose my memories of those years before kids that I thought were so important.  These are the real memorable morsels that make up my life.

My reasons for bestowing this very helpful advice upon you is one of deep caring and passion for National Fragile X Awareness Month, which is July of every single year.  It is my opportunity to bring to life the realities that my husband of 30 years and I have faced.  Some of the facts are not so pleasant lessons learned; some are memories of small moments of joy; all are what make up our world and what we’ve created.  I wouldn’t trade it for anything.

So, have I done my job?  Have I given you the advice you seek?  Have I caused you to want to learn more about fragile X syndrome and its causes and affects?  Have I caused you to, perhaps question having children at all?  That was not my purpose.  But, if this happens to be your take-away, would you consider donating some of that hard-earned cash to help families like mine?  I would be so eternally grateful.  You can donate to fragile X to help with research and support, or to one cause we have reaped loads from, Speech Therapy and Occupational Therapy experts.  It’s for the children.  

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