Stephen Gallup's Reviews > This Lovely Life

This Lovely Life by Vicki Forman
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Dec 05, 2010

it was amazing
Read in December, 2010

Every year there are more parent memoirs about children who have problems. I'm familiar with a great many, having been following the genre since about 1986, and in all honestly most of them disappoint me. Their repeated shortcomings were the main factor that drove me to write my own (publication expected in 2011). This Lovely Life, however, is in a class by itself. There is so much truth and heart in this book that it feels close to the final word on the subject.

I wholeheartedly second the other reviewer who said this needs to be read by NICU personnel. It's obscene that such people could impose their values on a family, and refuse to accept a Do Not Resuscitate order for a desperately ill preemie who has no realistic hope of ever approximating a normal life. As Vicki Forman's father puts it, "Their decision? How is this their decision? Are these their kids? Are they going to be around to raise them?" (The Goodreads summary says that the problem is state law, but I did not get that from the book. It's pretty clear in saying this was a "policy" of the particular hospital and a "preference" of the individual caregivers involved.)

I say that decision is obscene while keeping in mind the comments of Atul Gawande, MD, in his excellent book Better , to the effect that a physician should fight to achieve the best possible outcome for each patient. And as the parent of a disabled kid, I have a long history of butting heads with doctors who did not even begin to exert themselves in my son's behalf. What the problem boils down to in this story, as Forman explains, is that it is enormously deceptive and cruel, when the odds are overwhelmingly against a favorable outcome, for the professionals to brush aside family wishes with a vague suggestion that things might somehow turn out ok. That is the line they used with Forman's family and mine as well, although to justify diametrically opposing protocols.

One of Forman's twin preemies lived long enough, however, for her also to learn about the side of things I experienced:

If the doctors had lined up at Evan and Ellie's birth to do the impossible, to prove all that medical science could do to save one-pound babies, I was to learn how little those medical professionals on the other side of that accomplishment could or would do to help.

Forman captures the emotional experience of recognizing "how permanently things had changed" and acknowledging that, regardless of what is done, "there's no living with any of the consequences," and yet she avoids making the experience excruciating for the reader. I don't think my similar personal experience is necessary to recognize the authenticity, or the effectiveness, of passages like the following:

I backed my car into a vintage Porsche and crushed in its drivers'-side door. I rented a car while mine was in the shop being repaired. As I was parking the rental car in the hospital lot, I heard the crunch of metal going bad. I had somehow smashed the hood under the fender of the high-profile SUV parked next to me. When I got my own car from the shop, I once again backed into a classic car, this time a Mustang. Grief had made me not safe.

Perhaps I was able to read it without visceral reactions (as opposed to my response to Frank Deford's very intense Alex: The Life of a Child ) because dramatic scenes are not dominant in this narrative. The thread is held together mostly with intelligent summary and, increasingly as the story goes on, with introspection. I don't always follow the author's thinking in the latter kind of passages, particularly when she supposes that her four-day-old daughter might have chosen to die so that the other twin could live, and when she comes to terms with her personal demons of responsibility, blame, and guilt. But I suspect bits like the following might be rendered with sublime beauty if this story were ever adapted to film:

I had my share of moments in which I imagined what it would be like to be her mother had she lived: another dark-haired daughter, more laughter in the dark at bedtime. Images have come to me many times of pushing her on a swing or listening to her talk to Josie in the back seat.

I could spend all day quoting passages. Here's one more that describes one of the effects this experience had on the author:

[Previously] I believed that, like the tough words surrounding Evan's life (blindness, mental retardation, seizure disorder), the truth of life and existence could reveal itself in language. What happened when Evan and Ellie were born was the absolute erasure of this reality for me. So what if I begged for the twins not to be resuscitated? My words were not heard. So what if I understood the medical reasons and terminology for why Evan went blind? That understanding didn't affect the hard reality.

My own memoir has a different story (for starters, my son was not a preemie) and takes a different approach -- which is good, since otherwise Forman's would be a very tough act to follow. In my version, emotions have a more outward manifestation. There's more external action and not so much -- arguably not enough -- mulling and making sense of it all. Perhaps Forman's version and mine, coming at the problem of what to do about disabled children from their respective directions, will complement each other and together, for those physicians open to feedback (I presume there may be a few), nudge healthcare toward something a bit more humane.
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