Friends in need, friends indeed
By Amy Julia Becker
I have 300 new friends. Well, not really. But last week, a woman who knows I write about having a child with Down syndrome sent me a Facebook message and a friend request. I responded. She then "suggested" approximately 300 new friends, all men and women (but mostly women) with children with Down syndrome.
On one level, these are artificial friendships. I've never met these people. Perhaps one day when I get my act together and attend an NDSS Convention, I'll get to shake their hands (or, more likely, give them a hug). For now, they are just names and faces on a social media network. But if there's one thing I've learned these past five years of having a child with Down syndrome, it's that the connections with other parents are real and lasting and sometimes hard to put into words. I think it might be akin to serving in the military—a common experience of hardship and friendship and transformation that is difficult to explain to those who've never been through basic training.
Last December, I finished writing A Good and Perfect Gift, a memoir about the early years of our daughter Penny's life. Penny (above centre with brother William and sister Marilee) was diagnosed with Down syndrome two hours after she was born, and perhaps the more accurate way to describe the book is as a memoir about how I came to realize that although Penny was not the child I had expected, she was exactly the child I wanted. I used journal entries and photographs and notes from meetings with Penny's various doctors and therapists to construct a narrative of those first few years, and when I handed over the final draft to my agent, I thought the story was complete.
About a week later, she wrote back. "Do you have any friends who have children with Down syndrome? Anyone who supports you? If you do, it seems like you should mention them in the book."
I had been involved in the local Down syndrome society since Penny was three weeks old. Penny and I gathered with a group of other moms with babies (and then toddlers, and now elementary school-aged children) with Down syndrome once a month for coffee and conversation. We've attended picnics and conferences and welcomed new parents and hosted cocktail parties and participated in fundraisers. Moreover, these other parents had become my friends—people I could turn to for phone numbers when I needed a doctor's referral, sure, but also women who got together for lunch and talked about the difficulties of potty training and IEPs, the challenges of being the mother of a child with special needs, and just the normal stuff of parenting and marriage and work. How could I have neglected to include them in my retelling of those early years?
Some of that neglect arose from my own self-centeredness, this strange human desire to believe that my struggles were unusual or exceptional. But I think some of my neglect came because of an absence of conflict. These women didn't say things that were hard to hear. They didn't assume that Penny was sweet and loving all the time just because she had Down syndrome, nor did they assume that she was a burden. They simply walked the road with me—the road of sign language and physical therapy, the road of first words and first steps, the road of worry and delight, of sleepless nights and cuddling. Not only was there an absence of conflict, but there was a presence of acceptance and support. And a sense of connection that was difficult to put into words.
A few weeks ago, I opened an email from a high school classmate. We hadn't spoken to one another since graduation nearly 20 years ago. The subject line said,“A tribute to our son, and it included a video. As I watched, I saw a little boy with Down syndrome. Moreover, I saw blond hair, a goofy smile, floppy limbs, and an adoring older brother. And then I saw my classmate—this boy I remember as a "cool" kid, one who played sports and went to parties I wasn't invited to. But now I saw him as a dad, with his son nestled against his chest and his hand covering his son's back, looking content and proud, looking like a father who would protect and embrace his child for years to come. Then the tears began.
And there it was again, that sense of unspoken and almost unspeakable connection, that sense that even without talking about it, we have shared an experience of grief and fear and worry that has moved towards joy and hope and life. I count him as a new friend too, even though we first met when we were teenagers.
After my agent read a draft of my book, I ended up adding a few scenes to include the women from our local Down syndrome association. I'm certain that I haven't done them justice or fully conveyed the relief I felt as we laughed and cried and enjoyed our children together. And I still struggle to put into words the sense of comfort, support, and connection I feel when I meet other families who have children with disabilities, and when it becomes clear that these families have embraced their children.
My husband once said that meeting other parents of children with Down syndrome often reminds him that he is a member of an exclusive club, and he never even knew he wanted to join. I didn't want to join the club, but now that I'm here, I couldn't be more grateful for all my new friends.
Amy Julia Becker's new memoir is A Good and Perfect Gift: Faith, Expectations and Little Girl Named Penny. Amy Julia Becker blogs about faith, family and disability at Thin Places.