Jennifer Graf Groneberg

As posted at the United Church of Christ Disabilites Ministries website, here.

October 2, 2009

Award and honorarium sponsored by the Zonta Club of Billings, an organization "dedicated to the advancement of women through education, economic stability, legal and legislative equality, health and wellness."

October 2-4, 2009
Awards banquet, reading and book signing at the High Plains Bookfest in Billings, Montana.

August 30, 2009
A book review by Connie Sanders for the Billings Gazette.

Road Map to Holland is named one of three finalists for the Zonta Best Woman Writer's Award.

Created by Kurt Wilson, photo editor of The Missoulian.

• April 16, 3:15-5 p.m. "Road Map to Holland" Reading, book signing and discussion
• April 17, 1-3 p.m. "Reach Up, Reach Out: Becoming Advocates for Our Children"

Both events are at the Doubletree Inn, Bismarck, ND, and are sponsored by the North Dakota Department of Human Services, Developmental Disabilities Division.

Saturday, 1-2:30 p.m. "New Parent's Survival Guide"

Sheraton KC Sports Complex

9103 East 39th st.

Kansas City, MO  64133

Event sponsored by the Down Syndrome Guild of Greater Kansas City.

March 15, 2009

Montana Public Radio, Program Information and MP3

Click here to see pictures of Tom and the kids, or to hear my Midwest/Montana accent.

This interview originally appeared as part of a MotherTalk Blog Book Tour.

Hovering
by Jennifer Graf Groneberg

I'd like to tell you a story about the book's cover.

My friend Nicole is a professional photographer and she met us one day at the park by the lake, where we were doing Avery's physical therapy. We sometimes had therapy there when the weather was nice, and Wendy, our therapist, would help Avery learn about the playground toys--how to manage his body up the stairs; how to balance across the wobbly bridge. And at the end of this hard work there was a natural reward: the slide, which he loved.

On the days we had physical therapy at the park, I'd bring Avery's brothers, too--his fraternal twin Bennett, and Carter, older by 4 years. So that was the cast of characters: me, Nicole the photographer, Wendy the physical therapist, and the kids.

It was a beautiful autumn morning, clear and crisp and clean; seagulls riding the thermals across the bay, a pair of eagles nesting high in a giant, old cottonwood along the shore. The leaves had begun to turn, but there was still enough warmth in the sunlight that we didn't need hats or gloves.

Nicole was taking pictures of the children to share with grandparents who live far away. She'd promised not to take any pictures of me, because I'm terribly, ridiculously camera-shy. Wendy, too, didn't want to be in the photos (she feels the same way I do about cameras). It was just supposed to be the kids.

Wendy helped Avery, and I ran around from him to Bennett to Carter, and Nicole managed to take some photographs ("Your kids are fast!" she said. "Good thing I had my coffee this morning.") The day went pretty much like any other therapy day at the park, until we reached the end. When it was over, and we began dusting off sandy hands and zipping up coats, Avery decided it was time to walk.

We'd been waiting and waiting, watching and hoping. I'd even had his legs examined by an orthopedic surgeon. There was no reason he couldn't walk; he just preferred not to. Instead, he'd scoot about on his bottom, or lift his arms into the air, expecting to be carried. Each time I fretted about it, Wendy would pat my hand and say, "He'll walk when he's ready. It will happen in his own time."

Her words became my mantra, an 8-syllable prayer, equal parts question and answer: When he's ready? In his own time.

Which happened to be that very day at the park. He stood and straightened himself. In his left hand, he held a branch of beautiful, brightly-colored leaves. He took a step, then another. One, after the other. Again and again. He carried the branch all the while, until he brought it to me.

Nicole was there, quietly clicking away. Her photograph is my record of that moment.

We didn't know, then, that there would be a book, or that the image she captured would become the cover. But I'm happy and proud that each of these things came true: Road Map to Holland, Nicole's photo on the cover, and Avery, walking into my arms.

This interview originally appeared at mamazine.com

mamazine.com: In your book, I was surprised somehow and thrilled to read not so much the story of your very special little boy—while I know it's a good one—but of his mama's journey into a new kind of motherhood. Road Map to Holland is definitely about your own personal journey and self discovery, not so much about the details of Avery or your other sons' lives or even Down Syndrome. While this book is surely a must-read for any parent of a DS child, I also feel there's a deeper story in here that every parent can relate to. Was this your intention while writing the book?

Jennifer Graf Groneberg: About two years after the twins were born and we were past the preemie issues and the NICU follow-ups and all the usual baby things, like well-checks and immunizations, I began thinking about how ordinary my life was, mostly—if you accepted physical therapy and speech therapy as normal (which by then, I did: speech therapy felt to me like a really talkative playdate, and physical therapy reminded me of Kindermusic classes, only with less singing).

Throughout this time. I'd been reading everything I could find about Down syndrome, and none of what I found talked about this everyday-life type of thing. I was very hungry for mother-stories, especially, and I found so few of them. Martha Beck wrote a book called Expecting Adam, which I loved, but it was mostly about her pregnancy. Whenever she mentioned her son Adam, I would perk up, "Oh! Adam," but in her references, he was already a child. I wanted to know how she and he made it that far, and what it felt like.

So I thought there was a story here. A story about family and mothering and love. And it wasn't a particularly extraordinary story, which in itself was interesting to me, because many people assumed my life had become unimaginable. It hadn't, and I wanted to write about it.

mamazine.com: I really appreciate your ability to tell the truth of your experience, good and bad, throughout the book. The addition of twins!!!, a lengthy NICU stay, Avery's DS diagnosis and therapy, Bennett's hernia surgery, along with all the trials and tribulations of everyday parenting—your story takes us through some very emotionally turbulent territory. What we get in return is a look at a whole person—one with complex and compelling feelings. What was it like to put some of these dark hours and thoughts surrounding your experience on paper?

Jennifer Graf Groneberg: When I began writing, I put a particular photo of a woman and a baby on my desk: the woman's face was in shadow, and she was holding the baby to her chest, so she could have been any woman, really, and the baby could have been any baby. In my mind, the baby had Down syndrome, and I was writing the book for her; this mother in the shadows. I wanted to tell her about what I did right, and what I did wrong, so she could take what I'd learned and make her own path a little smoother.

But over the course of writing the book, so much came up: memories, feelings. I read once that the body has a physical memory, and some days after writing about certain things, I could physically feel it in my body. And it became clear to me that I was writing the book for me. I was writing it so that I could release this experience, and make way for whatever is next.

mamazine.com: Some of the details of your experience are so crisp and vivid. I wonder, did you keep detailed journals throughout your experience? Of course, the book does mention your attendance in a few writing groups. Was this the story you were piecing together all along?

Jennifer Graf Groneberg: For as long as I can remember, writing has been my way of making sense of the world. I have always been a copious note-taker; I remember being in my hospital bed after the babies were born—Tom and Carter had left to go home—and the first thing I did was take out my little blue notebook and begin writing. It was the only way I knew to process what was happening.

So I had these notes, all along, but what was surprising to me was that some scenes were as vivid and real to me as if they'd happened yesterday, though it was at least two years ago by then. I have a habit of forgetting things in my daily life: I make lists then lose them, I misplace my keys, I forget what day of the week it is. But here were these moments, seared into my memory. I think it goes back to that idea of physical memory; the body has its own kind of wisdom.

mamazine.com: What impact does blogging play in your ongoing experience?

Jennifer Graf Groneberg: I can say this easily: every impact. I began blogging because of Avery. I was one of two moms in a hundred (or more) mile radius parenting a child with DS in my hometown; on the Internet, I'm one of thousands. I've met so many incredible, amazing families through blogging, and now, I can't imagine not having a blog. It's one of my happy accidents.

mamazine.com: When you look back at your experiences after Avery and Bennett were born, do you think there are ways you could have felt more supported—by doctors, by the system, or by other parents? Or do you think that the living process—one of seeking and reaching out for help and support—was your only guide?

Jennifer Graf Groneberg: Both. I felt very loved and cared-for and supported by my immediate circle of friends and family (mostly), but I was surprised by the misinformation, and wrong assumptions, and simple ignorance that still exists. I was part of the problem! I was astoundingly uninformed about Down syndrome, and once I began to realize this, I kept thinking, "Well why haven't I heard any of this before?" Part of the answer is that maybe I wasn't listening; another part is that people weren't talking about it. That's one thing I hope: that people will begin talking about it.

mamazine.com: I just have to ask (and I apologize if I'm beating a dead horse; she just still boggles my mind). In the book, your neighbor and mother-friend "Cathy" severs your friendship and moves away without explanation after learning of Avery's diagnosis. Years later, you run into Cathy and her son at the park but don't discuss anything. Did you ever have "that" conversation with Cathy?

Jennifer Graf Groneberg: Ahhh, Cathy! You aren't the only one who wondered about my reactions to Cathy. My friend Emily was also wishing that I'd pursued a more definitive conclusion. My answer is in part an explanation: when I saw Cathy at the park, we were there for a therapy session. Wendy was working with Avery and I was helping, plus Bennett was at that age when he would just walk off a ledge without a second thought. The path that Cathy chose took her far away from us; it would have required a great effort for me to disengage myself from the playland and go over to her.

But there's always a way, if you're really interested in something, which I wasn't. By then, I'd already had my "angry mom" realization at the doctor's office, and I'd already experienced my share of prejudice and fear. I wasn't interested. I had what I needed in my life—plenty, and more—and seeking her out wouldn't have served any purpose. I could have said, "You're missing so much!" but to what end? I don't believe she would have heard me.

I also came to see that moment as an important part of my personal road map. Because I couldn't be in two places at once, I had to make a choice: I could pursue this hurt of mine, or I could stay with the people who loved and supported us. I chose the latter.

Finally, Emily and I had a conversation about me calling up Cathy and inviting her to lunch. Assuming she'd accept, I could "corner" her there in the restaurant, and ask all the questions I'd never asked. Again, I decided against it. The lunch would be unpleasant for both of us--I'd probably end up choking on my panini. So I took Emily out to lunch instead.

mamazine.com: What authors inspire you and what are you reading now?

Jennifer Graf Groneberg: I'm addicted to creative nonfiction. I just reread books by two of my favorite authors, Refuge by Terry Tempest Williams and Balsamroot by Mary Clearman Blew. I read a lot of blogs these days, too (nonfiction heaven!) and I have a writer-crush on Catherine Newman (a big club, the we-heart-Catherine-Newman-club, I know!). I love strong women's voices in writing; there's nothing that inspires me more than a beautiful, well-told tale. 
 

This interview appeared with Kate Hopper of MotherWords: Mothers Who Write.

Kate: One of the things I strive for in my writing and admire in yours is your honesty. Was it difficult for you to get to an emotional place where you could lay it all out there?

Jennifer: Perhaps oddly, no. Part of my experience with Avery had been sorting through the mistruths, and the half-truths, to find what was real. It never occurred to me to offer anything but my very most honest thoughts about it all, because to do less would just add to the problem, as I saw it.

Kate: Now that Road Map is published, how does it feel to see your lives in print and have people react to your experiences?

Jennifer: It feels very raw and vulnerable; really, a lot like it felt when the diagnosis was still brand new.

Kate: The book is chronological, except for the very beginning where you begin the story, and go back and begin again, repeating the events that lead up to Avery’s diagnosis. For me, this disjointedness so clearly reflects what it feels like to have a child in the NICU (and what I imagine it would feel like to first hear your child has DS), and it increases the narrative urgency of the book. Can you tell me a little about this? Did you always know the book would begin this way or did this opening come later in your process?

Jennifer: It always felt like the way to begin. Telling the story in a straightforward way would make it seem as if things were more clear than they were: in the beginning, I felt very lost, very confused. So the story begins with that confusion, and circles in and around itself, sometimes going over old ground, then new, then back over old territory again, as I tried to find a foothold. That's what it felt like to me as I was experiencing it, and I wanted the writing to reflect these emotions. As I find my way, so too does the story, and it eventually lines out in a more traditional manner.

Kate: Who are some of your literary influences? Why?

Jennifer: I love strong women's voices, and for a long while now, I've been obsessed with literary nonfiction. But recently, at the recommendation of my mother-in-law Joyce, I read Lisa See's Peony in Love. Her lyricism captivated me, and I so enjoyed reading a story set in the afterlife, which is something only fiction can do. Maybe I'm switching loyalties?

Kate: Are you working on another book?

At the moment, I'm still working on Road Map. I know that it's almost cliché to speak about writing a book in comparison to having a baby, but to me, it really feels that way. And right now, I'm in the fourth trimester. I'm not writing this story any longer, but I haven't quite let go of it yet, either.

One thought that keeps flitting through my mind relates to education. As Avery grows, and we approach school-age, I'm finding more confusion and misinformation and even discrimination. I'm not sure that these experiences will gel into a complete book, but they are much on my mind.

5-22-08 Podcast