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A certain self-abnegating strength is required to write about children with special needs, to share wrenching experiences with honesty and dignity, while refusing to accommodate pity.
It also helps to have Vicki Forman's talent. Her recently published memoir, This Lovely Life, tells the story of her twins' birth at just twenty-three weeks in utero, and the continuous emotional reassemby of her and her family's lives resulting from one twin, Ellie, passing away at four days post-partum, and the other, Evan, surviving with multiple special needs including blindness and a seizure disorder.
Vicki writes about making decisions no parent would ever choose, about processing feelings few parents would likely admit to -- all with such beauty and clarity that This Lovely Life almost seems like two books: One compelling us with her story, and another bewitching us with her prose.
I couldn't stop reading her book, and after finishing it wanted to know even more about Vicki and Evan. The website for This Lovely Life includes an excellent author Q&A, but after reviewing it several times I had still more questions. Lucky for me (and you, I'm guessing), Vicki -- a friend from last year's BlogHer panel on Blogging About Our Children With Special Needs -- graciously agreed to answer them:
Evan was a former micro-preemie with multiple medical conditions. Can you tell new readers what those conditions were, so they can understand your parenting challenges?
Our son came home from the hospital 200 days after his birth with a discharge summary that listed 15 different diagnoses, 5 different medications and instructions to follow up with 6 different specialists. When we came home, we knew we had a blind child, one who was also oxygen-dependent and required a feeding tube, but as time went on we also discovered our son would have severe developmental delays, and some permanent developmental disabilities as well. Evan did not walk until he was five, for example, and aside from a few simple words like “more,” he was nonverbal. He was diagnosed with a seizure disorder at ten months old and was on anti-epileptics until he was four.
Your book stops at a fairly early point in your son's life. Why did you choose this point, and are you considering writing another book about parenting Evan?
When I began the book, I made a conscious decision to focus on our first two years as Evan’s parents. These were our most intense years, and a time in which the majority of Evan’s needs were the most demanding. The choice I made was mostly strategic from a story telling point of view: I knew I’d never finish the book if I kept trying to keep up with Evan as he grew older. I’m happy with the decision. I think the story has both an arc and a containment because of its focus.
I’m currently in the process of writing a longer piece about being Evan’s mother as he grew older. I don’t know yet if it I will be a book, but it is the case that there is a lot to say about that time. Specifically, I find myself writing about disability and intimacy and the very intense lessons my son taught me about both those subjects.
You and Jennifer Graf Groneberg (author of Road Map to Holland) have corresponded for a long time. Does your friendship predate your lives as parents of children with special needs?
In fact, it does. Jennifer and I first met nearly ten years ago, when she was putting together an anthology about motherhood. I submitted a piece, she accepted it, then had to decline as the book changed in shape. We fell out of touch, and rediscovered one another again as parents of special needs children—she of her son Avery who has Down syndrome, me of Evan. When she wrote to me after all that time, she said, “I don’t know if you remember me,” and I wrote back and said, “How could I forget?” Finding each other again was like picking up in the middle of a conversation. We were writer friends, mother friends, and finally friends who had children with disabilities, all in a row. I cherish the friendship, its longevity and trajectory. It has been magical touchstone in my life.
You took Evan through some alternative therapies, once driving him halfway across the country. Would you do this again? Was the journey helpful in other ways as well?
When it came time to write about that trip and my
