Faraway, So Close
I always knew it was going to happen. I just didn’t know when—or for whom.
My 11-year-old daughter, Magdalena, has Down syndrome. Over the years, my wife and I have met dozens of other parents of children with special needs—through schools, through Special Olympics programs, through our church, as well as through various doctors and pediatricians. Mostly, however, we’ve met other parents through a local organization that helps connect families like ours.
Facebook and Twitter have also expanded our circle of friends. My wife and I are both writers, so we sometimes make connections through the mysterious power of the online word. Though we live in the New York City suburbs, we have made virtual pals in places as far-flung as Wisconsin and New Zealand.
All these friends came into our lives the same way: We sought each other out—or were thrust together—because of our shared experience raising a child with Down syndrome. We needed to find other parents to compare notes with, to celebrate with, and, sometimes, to commiserate with. They needed it too. During difficult times, we turned to our friends in what we call “the Down syndrome community.” They knew what we were dealing with. They knew the drill.
Sometimes we call it the “club.” It’s the Down syndrome club. Those who are in it know how good it can be. Those on the outside think they’d never want to belong. We are, they assume, a collection of mopes, sad sacks, and self-deluders. They couldn’t be more wrong. Membership has privileges—secret privileges.
Everyone the Hennesseys met through the club was, by definition, already in the club. Because of this we sometimes felt like we had two sets of friends—those in the club and those out of it. We had our DS friends, and our non-DS friends.
Yet, as I say, I always knew it was going to happen—I always knew that one or two of our non-DS friends would end up joining our club. The odds were in favor of it. They practically demanded it.
Our non-DS circle of friends overflows with faithful, pro-life, baby-loving Catholics. By modern standards, their families are enormous. Broods of six, seven, or eight children are common. We know one couple with ten kids, ranging in age from the early twenties to the single digits.
By contrast, the Hennesseys seem understaffed. Magdalena, who will be 11 next month, is the second oldest of five.
Many of the moms in the families we run with are either approaching—or have entered—their late thirties or early forties. Many opt not to do prenatal testing or screening for genetic abnormalities such as Down syndrome, which correlate with advanced maternal age. These mothers simply know that they would never abort a baby for that—or any—reason.
So, I knew it was going to happen. Sooner or later, our two sets of friends would overlap. Eventually, someone on the non-DS side would have a baby with Down syndrome. Who would it be, I wondered? Which of these families would join us in the club?
Perhaps it seems weird that a person should think this way. Where does the impulse come from, you might wonder, to speak of the birth of a child as if it were an initiation into an imaginary club? It comes from knowing that membership has privileges, but that few join willingly.
It happened at Christmas. We were visiting my wife’s mother in rural New Hampshire. The season was in full swing. Snow was piling up, Dean Martin was crooning classics, and the kids were doing what the kids do in the days after Christmas—poking at their presents and wishing they could turn the clock back to the days before Christmas.
Suddenly, my wife was showing me her cell phone. She choked up, and couldn’t speak. On the screen was an e-mail, a birth announcement from a friend, ending with the words, “We’re pretty sure she has Down’s.”
I was gutted. Why? What reason did I have to be sad? Hadn’t I spent a solid decade writing for every outlet and publication that would have me about how wonderful life was with Down syndrome? Hadn’t I said over and over that Down syndrome shouldn’t be a death sentence? How it was, in fact, a gift (albeit one that no one wants until they get it)?
I had said and written those things. Yet, the undeniable truth was this: Years ago, when Mags was diagnosed, I was wrecked. It wasn’t because I didn’t love her. I loved her more at that moment than I had ever loved anything. I was wrecked because she wasn’t who I thought she was. She wasn’t who I imagined her to be. She wasn’t what I was expecting.
Many of my negative assumptions in those earliest of days ended up being wrong. Most of my fears were unfounded, too. But my sadness was natural. It was normal—as natural and normal as Magdalena’s Down syndrome. I needed to experience it in order to get past it.
Turns out I wasn’t really past it. It was still there. Maybe we never get past anything.
The sadness I felt as I read the message on my wife’s phone was an echo of the sorrow I felt all those years ago. I was surprised to learn that the emotions were still so close to the surface. I guess 11 years isn’t much time in the grand scheme of things. Maybe we change a little bit as we get older. We get a little wiser I suppose. But I’m still the same guy I was.
I’m different, too.
A wonderful family has been given the most beautiful gift there is—the gift of life. In many ways they seem better-adjusted at the beginning of their Down syndrome journey than the Hennesseys are at the 11-year mark. They are most welcome to our club. Membership has its privileges.
A very moving article my brother Mark sent me.
We are blessed with our middle son Jack who has Down Syndrome. He is the middle of child of our 5.
I never would want to think I was a cold bastard but after Jack was born I realized all that I had taken for granted in life. Watching Jack develop more slowly gave me a greater appreciation for all of life’s challenges.
Jack is 13 and very independent. So independent he takes his red wagon and just heads out on a walk through the neighborhood. The police use to come by and I was worried our 18 year old did something only to find out Jack was running around the neighborhood and someone called the police – a double relief. Jack is fast when he wants to run. He was been nicknamed Forest Gump since he took off so fast that a neighbor was out of breath and ran back to get in his SUV to catch him. So around here it is “Run, Jack, Run.” The school labeled him a “Runner” so the bus comes right to our house to pick him since a “Runner” is not a good thing – but good for curb service.
We have a few dogs who are Jack’s true companions and protectors. He has a bad habit of letting our golden retrievers out and running through the neighborhood which can be a little embarrassing and cheap entertainment for others.
I have only been to a few DS events but when Jack was a few months old I was speaking to another father who told me something that sticks with me to this day. He said when he is in his house with his daughter who has DS everything is normal. It is only different when he goes out into the real world. I have found that to be true and come to love just being at home and going nowhere and having a blast.
Thank you for your article.