Sue from My Party of 6 is a past and future librarian and mom to 4, including a child with Turner syndrome. In her review of my book, she writes, “And I can relate to so many of the emotions [Jennifer] describes. How to tell people that your child has been diagnosed with a chromosomal abnormality. Who to tell? Feeling like you need to blurt it out to strangers and yet wanting to keep it close to your heart. Learning the differences in your child’s body and wondering if other people can see them too. Learning to love the child as just the child, not the child with a syndrome. Navigating the Early Intervention system and becoming an expert on child development – things you took for granted with your other child(ren). Fearing for your child’s future. Will the world accept him (or her)? Feeling guilty for so many things. And finally, settling into life as it is. Extra chromosomes, missing chromosomes. As mom and child, nothing more, nothing less.”
The gray cloud of unhappiness has settled in around our little house, mostly because of the rain that I was calling (last week) welcome and beautiful that I am now calling (this week) crazy-making and relentless. And guess what? I have more to say! I write about it at ParentDish.
Suzanne Kamata’s new book, Love You to Pieces: Creative Writers on Raising a Child with Special Needs (Beacon Press) was released this month. It’s a collection of poems, short stories, essays and excerpts from larger works–some of the writing has been published and widely read elsewhere; some has appeared only in smaller presses; some appears in print for the first time.
Love you to Pieces takes its title from the words of Clare Dunsford’s son J.P. in her essay, “Speaking of Love/Reading My Son.” The collection is organized by chronological age of the children in the stories, beginning with an essay by Vicki Forman. Vicki took the time to answer some questions about her essay, and writing in general, here:
“Coming to Samsara” is an essay that looks at the premature birth of your fraternal twins, and the events that flow from that experience, which is also the subject of your forthcoming memoir, This Lovely Life (Houghton-Mifflin, 2009). Which came first, the essay or the memoir?
VF: The essay is actually the very first piece of writing I completed after the birth of my twins. I remember sitting down at my kitchen table, ready to tell the story, or at least the start of the story, taking a deep breath and hoping against all hope that I could write something true and meaningful and not overly subject to self-pity. I also remember that the piece came out more or less all at once–something that rarely happens with me, since I am such a plodding writer who relies so heavily on revision to make something work. When the time came to write the book, I knew that the essay was probably also the beginning of the book, so I put it right there at the front. My task then became teasing out the essay, which is only about eight manuscript pages, into the first chapter of the book, which is more than four times as long. Proof that essays do indeed succeed best when they are mightily compact.
What were the challenges of writing the essay, versus the challenges of the book?
VF: With the essay, I’d never written about this subject matter before (death, disability), and I’d honestly never written anything so personal. When it was done, I felt both exposed and empowered, and then the real challenges began, to wit: convincing others that there was an audience for this material. When I placed the essay (with my great friend and editor Andrew Tonkovich at the Santa Monica Review), I was greatly relieved not only because it had found a home, but also because that freed me up to keep writing, and , more specifically, to begin the book.
Writing the book, the challenges were similar to writing the essay in terms of subject matter and the personal nature of the story. However, with the expanded landscape of the book came, naturally, additional challenges. First, while the essay is metaphysical in nature, I wasn’t interested in writing a book that was purely spiritual. There are many spiritual aspects to the book, but there is also a good dose of science, medicine, politics, and ethics. I knew that I wanted the book to have that scope, and while the book would have had tremendous value solely as a spiritual journey, my story and the story of our family also encompassed those other elements and I knew I wanted and needed to include them.
Second, with the book I rediscovered a principle I once read and often teach my students, to wit: in writing a book one must find a way to be extremely generous with the reader. The essay was eight pages of what interested me (Buddhism, Springsteen, grief, reincarnation) and my playing around with how to connect them. The book had to include what would interest the reader–as well as me. Before I began, and all along the way, I thought long and hard about what others would want to see and know about our story. I also gave the manuscript in draft form to a superlative reader who helped me see what else had to be included. Sometimes these weren’t elements I would have opted to include, sometimes they were, but they were always necessary. For example, my friend wanted me to write more about my own religious background and upbringing (which is the story of a mongrel) and even though I found myself less interested in the material, I made myself do it and now I see she was right. It’s a necessary inclusion.
Finally, writing a book is hard. No getting around that. An essay is over in a month or so; a book can take years to get out the door.
This Lovely Life recently won the Bakeless Prize for nonfiction. How does it feel?
VF: To quote my favorite songwriter Glen Hansard, “Brilliant!” I’m stunned and thrilled. I didn’t think anyone won book contests. When I was a kid, my mother once won a jar of mayonnaise from the supermarket. This feels like mayonnaise, but much much better.
In all seriousness–winning a book prize is the kind of break a writer dreams about. I am very grateful to the Bakeless folks, and to the judge, Tom Bissell, a writer whose work I have been happy to discover.
You are a writer and a teacher of writing, too. What advice do you have for beginning writers?
VF: Work hard and then expect to work harder. Be patient and persistent. It’s not only or always about talent–I’ve seen many talented writers give up and fall by the wayside. It’s about keeping at it.
What are the most common mistakes you see in beginning writing?
VF: A lack of specificity. I am like a broken record when it comes to this: be specific, be concrete. Abstractions don’t keep a reader’s interest. Then there is also the counter-error, which is the overabundance of detail. Details are necessary, but they must also feel purposeful. Selection is key. There’s more, but those are the main lessons I try to remember in my own writing and hope to impart to students.
What do you wish everyone knew about writing?
VF: I wish everyone who wrote understood how important it is to be honest and authentic as a writer and how that honesty begins with some pretty direct engagement with one’s self. I read Dorothy Allison once say that when she feels herself getting close to what is uncomfortable, that’s when she knows she’s on the right track. I would like to be able to give a writer that instinct in pill form. It’s one of the hardest things to learn, and the hardest thing to teach, but if you can do it, your work will soar.
How do you find time to write, and what is your process?
VF: For This Lovely Life, I drafted the entire manuscript in bed, with various props spread out around me: medical records, key inspiring books, etc. etc. Since then, I have read of many writers, including Collette, who liked to write in bed. It strikes me as a very secure place from which to let one’s mind travel, the most important ingredient for a draft, which, as a teacher once told me, is where you put on your “crazy hat.”
When it came time to revise, I packed up my computer and my sack lunch and took myself every day to my local public library where there were no distractions. I believe in writing every day, for as many hours as the day gives you. The very first pages of the book happened in the dark at five am, because my kids were still home at the time. It was all I had and I made it work.
As for the question of time, I wish you could hear me laughing right now! When I’m teaching, my writing life tends to take a pretty distant back seat. I continue to write a monthly column at Literary Mama and otherwise plot future projects in my head. That often includes reading and mulling things over, what my friend Bonni Goldberg calls “percolating.” I percolate a lot.
When I’m not teaching, I try to make the very most of the time, and use uninterrupted days or weeks to make headway on longer projects, which require a bigger head of steam to get going and stay going.
What projects are you working on now?
VF: After spending so much time in the world of nonfiction and true stories, I’m ready to lose myself a bit to fiction, and invention. I have a political novel I started several years ago, one that is set in Los Angeles and has the requisite natural disasters to go along with it (fires, earthquakes, etc.) Being a non-native to Southern California, I’ve always wanted to write a book set here, and so here I go. Hopefully I won’t be lambasted for inaccuracies or writing like a fellow traveler. In any event, I miss writing fiction, and I’m eager to dive in.
Vicki Forman teaches creative writing at the University of Southern California. Her work has been nominated for a Pushcart and has appeared in the Seneca Review and the Santa Monica Review, as well as the anthologies, Love You to Pieces: Creative Writers on Raising a Child With Special Needs, This Day: Dairies From American Women, The Spirit of Pregnancy and Literary Mama: Reading for the Maternally Inclined. She lives in Southern California with her husband and two children, one of whom is multiply-disabled. You can contact her at vickiforman(@)gmail.com or visit her blog.
(And I have one copy of Love you to Pieces to share! If you’re interested, leave your name in the comments and I’ll choose a winner at random.)
UPDATED TO ADD: We have a winner! #15, Mom-NOS, your choice: a jar of mayonnaise or a copy of LYTP…
There’s a new Special Needs Mama column up at Literary Mama called “Special Needs Action Hero.” Which got me thinking about the Super Powers I wish I had–all the usual ones, like Super Strength and Super Speed and maybe extra arms, too. I’d like the ability to clone myself and maybe stretch really far like Elastigirl from The Incredibles.
While I’m at it, I’d like to be able to teleport from one place to another, like in Star Trek, and I’d also really like to be able to wiggle my nose like in Bewitched, and voila! My whole house is clean, or whatever.
But the one I want most of all is the Super Power to go back in time, like when Superman would fly super fast around the earth and then get a do-over. I’d use my do-overs often, but maybe not for what you might think. I wouldn’t change that moment in time when the twins were conceived. Or the sunny, early summer morning when my pregnancy ended early. Or the noisy, busy afternoon in the NICU when we got Avery’s diagnosis.
No, what I would change are moments like this: I would never have gone into the chapel and subjected Avery to the failed hearing test. I wouldn’t have taken Carter with me to the grocery store the day the bakery lady said horrible things to us. And I’d erase all the times when my actions, or words, didn’t reflect what I truly felt in my heart.
Here’s a thoughtful look at current trends in publishing from an editor’s point of view; the post is called, “Less is More.”
JRS of ReJenerationS says to her readers, family and friends, “If you really love me you will go out and buy Jennifer Graf Groneberg’s new book Road Map to Holland. I was planning on doing a post about this book. I’ve read it multiple times already and it is mostly yellow from highlighting all of the parts that mean something to me.” She also provides a link to the Caitrin Nicol essay and encourages everyone to rethink their use of the “r” word.
And Road Map has made its way to Australia! I recieved an email from Down Syndrome NSW (Hi, Jill!) that the staff has been passing my book back and forth to read during lunch hour.
I love this essay! Caitrin Nicol of The New Atlantis writes about everything from Italian Renaissance paintings to Sesame Street, discussing prenatal testing and abortion along the way. (Her essay came to my attention because she includes, in her wide scope of consideration, Road Map to Holland as well books such as Gifts, Count Us In, Chicken Soup for the Soul, Common Threads, and You Will Dream New Dreams.)
To read “At Home with Down Syndrome,” go here.
Did Memorial Day sneak up on you, like it did me? I write about memory, and the passing of time, and the opening of grilling season this week at ParentDish.
Have a great weekend!
Pam of Rhett’s Journey encouraged her library to order the book; it just came in and she read it quickly. Pam and Andy are parents to one of the children I know with serious medical challenges. For a long while, I’ve admired her strength and her spirit. She is one of the moms I assumed had no trouble adjusting to life with a child with special needs. In my mind, she took it all in stride, in her sunny, positive way–which is totally unfair! (I apologize, Pam!) So what she had to say about my book surprised me; she writes,”Road Map to Holland made me think of the emotions that I had pushed deep down inside. The ones that I wouldn’t allow myself to feel, or think. It brought them to the surface, and in a way, Jennifer’s words, and her experiences healed me, they healed me when I didn’t even think I needed to be healed.”
In the kitchen this morning, Avery signed, thrirsty. I asked, “Juice, or milk?”
He pointed to the coffee maker. Thinking he misunderstood me, I repeated his choices. “Juice or milk??”
Again, he pointed to the coffee maker. I looked at him and frowned. “Avery! What do you want to drink?”
He pointed to the coffee maker, then chuckled.
“Cofffee?” I asked. “Coffee? You want a great big mug of coffee?”
By now, I knew he was joking with me. I went to him and hugged him, “Little boys don’t drink coffee! No!” He hugged me back, tightly, and we laughed and laughed together. It was a wonderful way to start the day. (That, and bacon. Carter helped cook up a big batch.)
Christy Everett of Following Elias writes about 3 images she holds in her mind’s eye: one is the scene from Forest Gump where he begins to run; another is a scene from the movie Ray, just after a young Ray Charles has lost his sight; and the third is a moment from my book, when Avery scoots onto the Slip ‘N Slide and flies down the hill, to our helpless amazement. She also says, “Jennifer Graf Groneberg did not begin in the place of transformative acceptance. And to me, this is what makes her book so compelling. She writes honestly about her array of reactions to her son’s diagnosis; she speaks candidly about her anger, guilt, and grief. She carries you with her as she sees beyond the stereotypes, beyond the test scores, to the little boy who radiates pure love.”
Living loving laughing life is rich.
And I tag 6 of you, any 6 who want to play! Email me and I’ll add your links when you’ve written your 6!
Kate from Mother Words: Mothers Who Write read my book and was reminded of her own time in the NICU. She says, “Road Map to Holland is certainly is a must-read for all parents whose children have Down syndrome, but parents who have lived through the NICU, parents of twins, and I believe all parents will find something in these pages that will resonate with them. It’s about more than coming to terms with a Down syndrome diagnosis; it’s about adjusting a worldview, breaking stereotypes, and opening oneself to the possibility of finding love in unexpected ways.”
There’s also an author Q and A at her blog–and she managed to prepare these insightful questions with a new baby in the house!
I could fill a whole category with posts about what my children have taught me; about how they show me the way, as often as I show them. This week’s ParentDish column is like that. And it involves fish.
Mom24 of 4everMom is mom to 4 kids, ages 5 to adult, and she’s also a grandma. She writes, “I remember when I was pregnant with number 4, we refused, with my doctor’s blessings, prenatal testing. However, I was the dreaded ‘AMA’, so she did encourage me to have a level 2 ultrasound to see how the baby was. During the ultrasound the doctor berated me for not having an amnio. I did not want one for several reasons. I do not like needles! More importantly, I was scared of the risk of miscarriage that accompanies amnios. I was extremely excited to be pregnant with number 4, after being told years before that we would never have more than 1, I did not want to take ANY chances. Also, I knew I could never choose to abort, so why go there? In some respects, that is a cowardice on my part. There’s also a measure of, ‘if I don’t know, I don’t have to deal with it.’ Anyway, this doctor made it very clear he felt we had made the wrong choice. He kept telling us over and over, if you refuse to do the amnio, I can’t guarantee you a healthy baby. Well, I have news for him, even with the amnio, he couldn’t guarantee us a healthy baby. There are no guarantees. Life just doesn’t work that way.”