Touched (by) Down Syndrome

Preface

November 2001

megandjohnglasbern“I can’t decide if we should take the CVS test or not….”  My husband John and I were in my obstetrician’s office, and it had been barely six weeks since we learned that we were finally pregnant.  “There are some risks,” the doctor told us as he explained how he would administer the test.  I turned briefly to gauge John’s reaction, and then transitioned back in my head, consumed with thought.  The path to even get to this stage of my first pregnancy had already been particularly difficult.  Within the span of two year, I had already had two miscarriages and an ectopic pregnancy.  The thought of finally becoming pregnant with a viable fetus only to lose it because of a test for birth defects such as Down Syndrome was practically unbearable.

But not completely.

I turned my attention back to the doctor.  I wanted to proceed.  “Are you sure, Meg?”  My husband grabbed my one-fingered hand, and squeezed it.   “Remember, this test can’t detect ectrodactyly.”  Although I knew he was right, back then I was in total denial about the risk of passing on my genetic condition to my children.   Although that possibility was actually my biggest fear, if I was being honest with myself, I couldn’t bear the thought of having a child with Down Syndrome.  Sure, I knew many people shared that concern.  But for me, it was more than that.   I was already a physically imperfect-looking mother, and the thought that people would now stare at both me and our child was more too much.   My mind raced.  What if our child was born with DS and ectrodactyly?  

“Go ahead, let’s do it.”  I was certain that the test was more than worth the risk.

 

 

 

“Do you think your son would like to write a Kid Flaunt for my site?”  I am embarrassed to say that I posed this naïve question to a friend not too long ago.   In my mind, her son always seemed joyous and loving and communicative.  “Meg, thanks but he doesn’t even realize there is anything different about him.”  Ever since that encounter, I have thought a lot about children born with DS, and how their life experience seems to touch others beyond what they themselves even realize.

Recently, I read an article about Noah VanVooren who is a high school football team manager.  http://www.yardbarker.com/high_school/articles/msn/team_manager_with_down_syndrome_scores_touchdown_in_playoff_clinching_win/14859647

noah football gameNoah was born with Down Syndrome and has been the Little Chute High School football team manager the last four years.   This Fall, to reward Noah for his years of dedication to the team, he was afforded a unique opportunity. Here is how it was described in the article:

‘As the crowd chanted, “Noah! Noah!” VanVooren jogged onto the field and lined up alongside quarterback Sam Merryfield.  VanVooren took the handoff from Merryfield and ran around the right end 35 yards into the end zone, spiking the football before his teammates swarmed him.’

Admittedly, when I read this post I felt a bit of frustration on behalf of the family.  Why the need for the fabricated win?  I couldn’t help but think in terms of my own life experience.  I recalled being a seventh grader in Cairo American College.  Had the middle school girls’ basketball coach and team decided that I, their one-fingered manager, be suited up to fabricate a final (winning) basket in the game, I would have felt humiliated.  And beyond me, the mere thought of one of our son’s coaches  proposing the same concocted “winning experience” for them would feel equally insulting.  Our lives are now about flaunting our difference for sure, but no special treatment please.

But given my own naiveté about Down Syndrome, I suspected my instincts were way off.    And so, I instead reached out Just Davisto another friend, Brian McKay.  I had grown up with Brian’s wife Courtney and love her like a sister.  Four years ago they gave birth to a beautiful son, Davis, their first of two boys.  Unexpectedly, Davis was born with Down Syndrome.  “Brian, what do you think of this story–do you like the fact that the team allowed this boy to score a touchdown and the opposing team “chased” him, or does it somehow seem forced?”  Brian’s response was so thoughtful and enlightening that I instantly knew he would be perfect for a DHIFI Guest Flaunt [http://www.donthideitflauntit.com/our-kind-of-touchdown-by-brian-mckay-2/], which was published on my site earlier this week.  “You know, the thing about many DS kids is that they don’t even perceive themselves as different. They don’t even *know* they have DS. In order to get Davis on the scale at the hospital the entire staff comes out and cheers for him as he’s finishing. To get his weight. To him, he did something great! He’s thrilled! It’s a scale. It means nothing. The touchdown in the story about Noah means nothing. But to him? It’s the greatest thing that happened to him that day and maybe that week. I think that kid will talk about that touchdown for the rest of his life.

Once again, I felt utterly foolish.  And then I received an unexpected email from another friend (coincidentally named John).

Meg, I was thinking about you the other day.  My daughter, a H.S. senior, nominated and ran a homecoming queen campaign for a friend of hers, *Candice, who has Down Syndrome.  Candice is a wonderful, beautiful girl with a loving soul and deserved the homecoming queen award much more than anyone. Well, Candice won, but the runner up was a sore loser and tweeted a derogatory comment.”  John continued by describing that the tweet was deleted quickly, but several people got screen shots and tons of craziness followed.  “One person printed the screen shot, wrote a defense of Candice and then an unflattering remark about the person who tweeted it, then printed and posted it in the school.”  As his email to me continued, I noted that there was no mention of any direct impact on Candice.  It was like she was (thankfully) insulated from all the drama.

In this context, Ethan and I had been recently discussing what it is like to be in middle school, and how easy it is, at his age, for kids (with no difference or disability) to be consumed with what others are thinking of them.  I felt the irony.  I have spent the greater part of my life learning to not only accept myself and my difference, but to even embrace it, and now teach my kids how to do the same.    It is a difficult struggle and there are no guarantees I can even reach the goal.  However, it is so incredibly worthwhile once you can arrive at a peaceful place of unconditional self-acceptance, and bring your child to that same destination.

So many people fear having a child with Down Syndrome.  I was one of them.  But having friends who have had children with DS, I am finally realizing that, in some respects, the joke is on all of us who struggle constantly with our own self-worth, sometimes all of our lives.   Many never come close to winning that game.  Yet these beautiful people arrive on earth automatically filled with unconditional self-acceptance and love.    In that respect, they have already scored that winning touchdown— the instant they arrive. Brian and Davis 2

 

*Name changed

 

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