Tightening the Focus: a Review of This Lovely Life
Christina Shaver | Friday, July 31, 2009 at 10:05AM by Vicki Forman (Houghton Mifflin Harcourt, 2009; $13.95)
On the outside, Vicki Forman's new book This Lovely Life details the struggles of mothering micro-preemie twins; but on the inside, her book illustrates so honestly the emotions and the questions and the grief that all of us who have children with special needs encounter every day.
Her book starts by questioning her hospital's mandate for saving her two micro-preemie twins born at 23 weeks gestation. "Let them go," she begs them, hoping to prevent these two innocent babies from immediate suffering and long-term disabilities should they survive. The doctors didn't listen, and while her prediction comes to fruition, she receives the gift of boundless love and hope for her two children.
One of the twins, a girl named Ellie, passes away four days after birth. The boy, Evan, survives, but not without a myriad of diagnoses, intense medical care, hospitalizations and a round-the-clock medication schedule. In every situation, Vicki attends to her son as an educated advocate, questioning the doctors' every move until she understood exactly why a procedure was necessary, its potential setbacks, its expected outcomes.
What interested me most about this book wasn't the necessarily the plot -- how the birth of Vicki's babies stretched her parenting chops beyond what any of us should have to endure -- what caught me on nearly every page was the universality of her experiences. It was as though she plucked all those subconscious thoughts we have tucked away, and set them out for everyone to behold.
I've highlighted scores and scores of passages that spoke to me. Here are some of my favorites:
- [A mother] believes that if she simply pays attention long and hard enough, she can prevent anything from happening.
- [I] resented the fact that Curt still lived in a pace where if you were good and honest and right, if you were polite and answered the phone and called people back, if you did all that, everything would turn out okay.
- Sometimes I wonder if I'm not grateful enough, if I should stop thinking about what isn't happening (or about how terrible this all is, what a drain it is) and start thinking more about how lucky we are.
- Eventually, I got to a place where I could see Evan as not just a boy with problems -- or words that described those problems -- and not just a kid who might not walk or talk, and who obviously couldn't see. Instead, I saw my son. His beautiful smile, his sense of humor, and his delight in the world. That he could laugh his ass off at a joke only he knew or understood. The diagnostic words didn't make a difference; they didn't change what he might do, and they certainly didn't help me feel better.
- I wasn't much of a friend to people in those days; my time with Evan had shut me off. Throughout the hospital stays, I had resisted any kind of connection to other parents. The very fact of having a chronically ill child set me apart from others.
- Some days I held it together just fine. Others, I barely functioned.
- At ten to seven, a nurse approached me. "Mrs. Forman? I'm sorry...." I looked at the clock and realized I had committed a cardinal sin: I was at bedside during shift change.
"Of course, of course," I said, because shift change was sacred, and even the most grief-stricken parent could not possibly sit bedside during shift change.
Not only does This Lovely Life examine what it feels like to parent a child with special needs, but it also puts professional procedures and medical opinion under a microscope, debating what it means to exist versus to live.
For Vicki, life means honoring existence. Every existence deserves honor, every existence is lovely.
Reader Comments (10)
I think it's okay for a man to cry. These feelings are so well-known to me. Thank you, Vicki! I thank you so very much for baring your soul.
What a wonderful review of a book that I'm so glad others are reading, loving, holding onto tight. Universality is the best word, as is honesty. Both so aptly describe what Vicki gave us all with this book.
Yes, I agree -- I loved it for it's authenticity and for all the ways in which Vicki captured the universal experience of having a child with special needs. It is a gift -- others on this and similar paths will feel less alone with this book at their bedside. I wish I'd had it in the early days!
I really can't understand what this woman meant by telling the doctors to "let them go." Doctors are required to try to save children otherwise that would be considered extreme negligence. I also wonder, just how did Viki Forman propose to the medical team to "let them go?" Starve them, cut off their oxygen? No ethical doctor would do that. The true heros are parents who continue to advocate and struggle everyday.
The question of whether massive medical intervention does anything more than prolong suffering can arise at any stage of life, and is one that both doctors and families grapple with. It is certainly not unheard of for a conscientious physician to suggest that letting go represents the path of compassion.
Right, anonymous2.... and when the babies died no doubt the doctors and the hospital would have been sued because they didn't intervene to the extent they could have. Where was Foreman's instinct to help her children as much as possible? Instead she just wanted to "let them go". Something is very wrong with that.
If you read the book, you'll get much more insight as to the initial reaction Vicki had regarding the birth of her babies.
In the U.S., pregnancy can be terminated up to twenty four weeks. Her babies were still under that threshold. In the U.S., many hospitals wouldn't be able to support a baby born at twenty three weeks gestation, the age of her babies when they were born. In fact, a hospital in Portland, OR had drawn up guidelines that advised withholding intensive care for babies born prior to twenty-five weeks.
Her motivation, she details, was not to snuff out life but to protect her children from the certain suffering they would face, not only if they were able to make it in one piece through the vaginal delivery but throughout all the days of their lives. And regardless of her initial anxiety in the face of giving birth unexpectedly prematurely, Vicki's parenting and love for her children are no less than an example for so many of us.
It's so easy to judge someone's actions at face value. For me, in my experience of raising a son with special needs, I try to understand someone else's perspective.
I too am a child with severe special needs who need care 24/7 and do not understand her perspective. So being permitted to terminate a pregnancy up to 24 weeks somehow made her decision to "let them go" ok? I know many, many special needs parents who have a lot more parental insitnct than that. She's certainly no example in my opinion.
To be frank, my life is pretty much in chaos at the moment but I took the time to buy and read Vicki's book. For me, attitude is everything and her expose of her family's life deserves the greatest bravery award.
Thank you for your review.
I saw Viki Forman interviewed recently on a talk show in S.F. All I saw was a mother who seemed happy not to be dealing with special needs anymore. She had two premature kids, like so many others unfortunately, and all she wanted to do was get rid of them. Seems she finally succeeded. What a horrible book.