Friday, August 23, 2013


So I hope you know by now that Dédi means great-grandfather in Hungarian.  You have one picture of your great grandpa, Daddy's grandpa, in your room, although it never hurts to have more:
This is you with him on Thanksgiving, 2012, when you were still so little!  You've gained so much from him:  wonderful stories of his military service and his relationship with the love of his life, Jean (whose necklace you now have), an interest in how things work, and a love of books (you've had many people to inherit this from!).

Thankfully, you get to see him from time to time, though not as often as we would like.  Obviously, you have had four great-grandfathers, and today I'd like to tell you a bit about my very special grandpa, Dédi.

When your dad and I met, one of the first things we bonded over was the special relationship we both have (and had) with our grandfathers.  My grandfather, my mother's father, meant more to me than I can even express.  He was so full of love for everyone, as I think you can see from this, one of my last pictures of us:

When I was only eight years old, my grandfather started to teach me to play violin.  He was good--really good--and had played in orchestras, but one of his real interests was Hungarian folk music, so I learned a lot of folk tunes.  If you listen to the fiddle parts (here played by the flute) in Hungarian folk tunes, you'll hear that they are fast-paced, require dexterity, and, most of all, just need a lot of heart:

Tonight, I had my first experience trying to play bluegrass fiddle.  Although this is really different, connected to Appalachia and American mountain folk, it does have the fast-paced runs and, more importantly, that heart.  I played tonight at Bluegrass and Burgers, an event hosted by the Cathedral of St. Luke and St. Paul in Charleston (where we go), I felt that heart.  I felt that I was playing songs about something I cared about, my faith, that I was connected to people from generations back and, even though the traditions differ, that I was connected to my grandfather, your Dédi.

I've told this story before, but the day that he passed away was the day I had my first ultrasound and realized I had a viable pregnancy (I had been bleeding pretty badly, so I wasn't sure).  It was such a bittersweet day; I think your existence is the thing that honestly got me through the raw grief of losing someone so dear to me.  I also have always felt that you are connected to your ancestors; it's otherwise too much of a coincidence that I took the pregnancy test on the anniversary of my father's death, and I had the ultrasound on the day Dédi died.  You are proof that their spirit still lives.

And every time I play the violin, I feel that Dédi's spirit lives even more strongly.  As I played fiddle, you danced and clapped.  You listening to me play, and enjoying it, was like you listening to your Dédi.  I know he looked down from heaven and smiled.  All those years ago, when I barely squeaked out my first folk tune, he knew that he was giving me a great gift, and I now have the honor to give this gift, the gift of our heritage, of music, to you.

Saturday, August 17, 2013

Turning it Off?

I've been thinking a lot about this article that's been making its rounds on Facebook and on the internet:

If you don't have the time to read it, here's one of the first sentences:  "the underlying genetic defect responsible for Down syndrome can be suppressed in cells in culture (in vitro)."  On my run this morning, I thought a lot about what this would mean.  Is it something that I, or our culture, would want?  Before I had you, the answer would have been an emphatic "yes."  Who wouldn't want their kid to have everything the world would give them?  Who would want for their child to be discriminated against or denied opportunities because of the way s/he is born?  

Sometimes I still feel this way.  When I see how you're working really hard to make the "h" sound and kids half your age are talking relatively proficiently, I wish I could "turn it off."  When I see other kids taking toys from you or literally stepping all over you, I wish I could "turn it off."  When I call a preschool and have them tell me that they are "not sure" they could "handle" someone with Down Syndrome, I wish to God I could "turn it off."  I hate that you will have these challenges in life.

And yet, what I did not know before I had you is the thing everyone who has kids with DS talks about.  Now I don't quite believe that they are "angels" (you can be a pain in the butt!) or that they are "magical," but you do have a different, pretty awesome way of looking at the world.  While other kids your age engage in histrionics (sorry- tantrums) or fight to get their way, you look at them, tilt your head, and take it all in.  You have about five teeth coming in right now, but you still play, laugh, and thoroughly enjoy Harry the Bunny.  Those of you who have kids with DS should check this out, by the way.  Jules just adores it:

We just got back from our big family vacation in NYC, and your responses were so interesting.  Instead of being afraid on the subway or on the streets, you waved at everyone and even reached out to feel people on the subway (we called you the "subway groper").  You have such pure, unadulterated joy when you get to swing in a park.  Here you are in a park in Montclair, NJ:

And my favorite thing was the way you were fascinated by the patterns on the concrete.  This is something I would never have thought to look at.  And then there is the way you make friends with everyone.  This is you at the airport in Charleston, before we even left.  Most 2-year-olds would have been clinging to mom and dad, but you went and befriended every kid in the place:
And so here's my question.  Would you be the same person without the DS?  Maybe this is just who you are, but maybe that extra chromosome is part of what makes you you.  Maybe it's part of who God wanted you to be.  It makes me think about the fact that, when I was a teenager, I was super self-conscious of a mole I have under my nose.  Kids picked on me about it, making the predicable remarks about it being a "booger," and even people in church told me to "blow my nose."  I wanted the darn thing gone and shed many a tear over it.
Now, I see it as part of me, part of the person God meant me to be.
On a more profound (perhaps) note, I have struggled with anxiety my entire life.  I'm convinced that it's just my chemical makeup, the way I'm made.  But getting rid of the anxiety altogether might have changed the person I am, like in those cheesy movies like Groundhog Day where one choice changes the entire outcome of events.
So I guess the way I see it is that the stupid mole, my anxiety disorder, and even something as big as Down Syndrome are God's choices.  They are the way God made us, and He made us that way for a reason.  Maybe you would be the same person without the DS, but chances are you would not.
Maybe you would be picked on less, ostracized less, welcomed with open arms into any preschool.
While I do want that for you--I always want the very best for you--, I wouldn't want it at the expense of the really interesting person you are becoming.  And while I never want you to struggle--no parent does--the struggles are part of what makes us who we are.
So I'm a bit wary about this kind of research that "promises" to get rid of this "defect" in vitro.  Maybe, in the future, we can get rid of unsightly moles or even depression and anxiety, but then what would we have?  We would have a generation of people who are "perfect":  perfectly flat.  And I'm convinced that this is not why God put us on this earth.  God put us here so we can enjoy each other, our differences, learn empathy from people with mental illness or cognitive disabilities...or just people who look and act "differently."  If the essence of being human means messing up, making mistakes, or just being imperfect, what would be the implication of "fixing" everything?