A Little More: What not to say
Nearly 5 years ago, I found myself at a wedding in a city far from my home, away from my 3-month-old twins who'd been born prematurely, and had recently been released from the NICU.
The fact that I would leave my family at such a time to travel to this wedding says a lot about the couple being married that day: I'd known the bride since girlhood and felt as close to her as if she were a sister.
Being mom to 3 children was still new to me, then; people would ask if I had kids and I'd answer, "Yes, a 4-year-old," and then hastily add, "And twins! The babies are 3 months."
Only sometimes did I say that my son Avery had Down syndrome. I didn't have the words figured out, yet. I didn't know how to manage my reactions as well as the reactions of others. Even the terms were problematic: sometimes I'd say "Down syndrome," sometimes I preferred "Trisomy 21," which sounded (to me) more scientific and was less likely to elicit stereotypes.
Too, I sometimes said too much. I'd go into great detail about all of it--my water breaking at dawn (what a lovely image!) and the premature delivery and Avery's diagnosis, on and on, until I was exhausted and so was my poor conversation partner, whom I'm sure was regretting the one simple question that unlocked Pandora's box.
Which is to say, I was a bit shaky, at first, being mom of a child with special needs. I wasn't one of the women who felt chosen. I wasn't one of the moms who immediately rolled up her sleeves and got going. I wasn't even particularly good at explaining Down syndrome--I knew it had something to do with genes, but I wasn't really sure what genes were.
At the wedding, my attempts at finding a good way to speak about my life and my new family were equally unsteady. I was surrounded by many old friends, and not telling them felt like a betrayal to my son. But telling them in a lighthearted way, in a "this really doesn't' matter" way, felt untrue, too.
So I did my best, like a pendulum swinging again and again through the center, but never quite managing to rest there.
After the ceremony, we were walking down a busy street, a parade of us from the wedding. I was next to another woman I'd known since we were girls. As we were talking about how beautiful our friend, the bride, looked, and how handsome her groom was, it occurred to me that this woman should know. Apropos of nothing, I blurted out, "My son Avery has Down syndrome."
This was my worst one yet. My eyes began to water and I thought to myself, Get a grip! You can't spring it on people, like that!
My friend stopped walking. She turned to me, took my by the arm, and held it. Her eyes had tears in them, too, and she said in a rush, "I've wasted my life."
We stayed like this for a moment, both of us watery-eyed and emotional. And then we did what anyone might do in such a situation--we started walking again, a little unsteady, leaning on each other for support, hurrying to catch up with the crowd.
It was a beginning, for me. A glimpse through my own confusion; a light at the end of the tunnel. In that moment, I had the realization that it was not all about me: that my son's diagnosis, or my feelings about it, were not the only things around me.
That even as I felt locked in my own personal drama, there was a whole world spinning, full of people who sometimes felt scared, and sad, and bewildered, just like I did. Finding the perfect words wasn't as important as I might have thought, afterall: what mattered most was when we reached out to each other, and tried to share them.
Next week will be my last "A Little More" column for ParentDish. If you have anything you'd like to ask me about, or anything you'd like to say, please feel free. I'll do my best to answer any of your questions in my final post, and as always, thank you for reading.