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:
SDR: 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?
VF: 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.
SDR: 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?
VF: 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.
SDR: 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?
VF: 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.
SDR: 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?
VF: When it came time to write about that trip and my experience with alternative therapies, I knew with utter certainty they would have to be included in the book. Parents who choose alternative therapies often feel they are somehow reaching for a last resort, but this is often neither the case nor the point. The help I gained from taking Evan to Albuquerque resonated on many levels. I found myself among people who thought they could heal my son. They taught me to believe it was possible, and, most important, they were some of the first professionals to see Evan in his entirety, rather than a problematic collection of symptoms and disease. Because of their care and concern, I also regained a footing I had lost. When I went to Albuquerque, we were in crisis; when we came home, I had a regained a crucial ability to go on. That meant everything, no matter the facts or details of Evan’s improvement.
SDR: You spoke about medication and taking sleeping pills, about grief, about it distracting you to the point where you had a couple of fender-benders. Did you see a therapist? Why or why not? Do you have any advice for parents processing the reality of a medically fragile child?
VF: The day after I gave birth to the twins, I returned to the therapist I had not seen for nearly a year. I stayed with him from that day on until six years later. I could not have survived without his help, and that of medication. It was never even a consideration that I would do it alone, or without support. I’m fortunate in that I have never felt shame or guilt about needing help, and that my family has always been by my side.
Being the parent of a medically fragile child or a very premature child or disabled child is possibly the loneliest and most devastating experience a person can have. Nothing in life prepares you. I think parents often feel they have to be strong for their spouse or other children, but this becomes a burden in itself. I heard a story that Barbara Bush lost a daughter to leukemia at four years of age. After her daughter died, she retreated to her bedroom for a year. If Barbara Bush can disappear to bed for a year, how can any of us expect to do any better? Honestly, the best advice I can give is not to judge yourself, get help if you can, and allow every emotion to play itself out. There is no right way.
SDR: What advice would you give for parents who are not happy with their doctors' bedside manners? Should they suck it up if the doctor is good enough with their kids?
VF: I don’t know that it ever makes sense to accept a doctor’s bad behavior, unless it’s obvious everyone is just having a bad day, maybe even the parent or child included. I know some doctors are often excused for lousy bedside manner because they’re (supposedly) gifted at what they do, and I know some parents don’t have any choice in terms of where they can receive their care, but my sister once observed that the best doctors actually have the best beside manner too, and I think she’s right. I often advise parents that if they don’t like their child’s physician, it’s time to look for someone else. Almost every time I sought out a new doctor because the one I had wasn’t working, we found ourselves in a better situation. By the end, we had a terrific team as a result, and I do believe it made all the difference in the quality of my son’s life and care.
SDR: You said that you could take apart anything and put it back together again. Has your experience given you pause, or do you still feel that capable and confident?
VF: Well, I’m still pretty good with most video cameras, but honestly, talent and expertise don’t matter as much to me as they did before. I’m not against mastery, I just don’t always see the point. I thought I had mastered Evan’s care, but then he died. It’s a sobering lesson, even to someone as capable as me. Where do you establish your proving ground? What is your legacy? Does it lie in being good at things, or in something else, a harder talent perhaps, like love and acceptance? I’m still trying to figure it out.
SDR: How old was Evan when he started going to school, and how did you decide where that would be?
VF: Like many children with diagnosed disabilities, Evan went to a special education preschool when he was three. We had an IEP and there was really only one option for placement: a special ed preschool setting in his neighborhood school. Our older daughter was in the same school, and I felt it was important that she and Evan have the semblance of a typical sibling experience. Evan blossomed in preschool, learned to walk and ride a trike and use assistive technology and even eat. We were very fortunate to have gifted teachers and therapists working with him, even if there were the usual struggles with goals and objectives. The pace sometimes felt glacially slow, but overall we could see each year there had been gains.
SDR: When did you start blogging as Evan's mom, and how has blogging affected you? Besides your own blog and your Special Needs Mama archives at Literary Mama, are there other online resources you'd recommend?
VF: I first started blogging in September ’03, on the advice of a former student. I didn’t intend to write about Evan, but quickly saw that the format of the blog was perfect for reporting on Evan’s day, and my own as his mother, and that this was also a way to connect to other parents of disabled children. I was already writing my memoir, so there was a chance in the blog to work out ideas and subject matter as well.
Of course I quickly discovered a very large and growing network of special needs parents. I don’t think it’s an overstatement to say that blogging, in our world, has probably saved lives. It’s certainly helped us all feel less vulnerable, confused and alone.
As for resources, there are so many, we could all be overwhelmed all the time. Sometimes, I just give myself permission to step away, spend time with the real people in my life who need me, and decide that if there is something going on online I’m missing, I’ll figure out how to pick back up when I return.
SDR: Your Literary Mama essay "The Mother at the Swings" has influenced parents of children with special needs as to how they interact with tentatively inquisitive parents. Is there one thing you want people to remember about parents like you, and children like your son?
VF: There is a soul inside every person, disabled or not. That soul is fed by love. A look, a gesture, a question, a caress—it’s amazing how little it takes to add to that love. It’s equally astonishing how hard it can be, when you are the parent of a disabled child, to receive that connection. I remember when my son died, I looked out at the hundreds of people at his funeral and I said, “I just wish I hadn’t felt so alone.” I wasn’t always willing to allow that connection take place. It’s hard on both counts, but we have to believe it’s possible. What else is there?
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You're desperate to read the book now, right? Then ping on over to Vicki's own site for a chance to win one of two signed copies.
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