I just read half of this. I will need to come back to it.

It was a heart breaking story to think of what the whole family had to deal with. I can understand why she didn't want the revival option - any result was going to end in tragedy on some level but I'm glad that her little guy got to enjoy the too brief time he had.

I can't read it. I read part of the interview and had to stop. As the mom of a 3 year old with some health issues I just found it too painful. But it's obviously an important book that raises a lot of questions. My friend has a son born at about a pound and a half. He survived but he has significant delays and problems. I don't know where the line should be drawn, if at all. It's not a decision I'd ever want to have to make. I wish your sister-in-law all the best.

This looks like an amazing story with some incredible insights into matters of life, death, and love. I especially like how she asks us to acknowledge that we can "feel more than one way at once," something that is certainly and, as she says, not well accepted in our black-and-white culture.

Eighty percent of couples with disabled children divorce

I had no idea about that; wow.

She has such a moving story to tell and clearly the intellect and empathy to tell it well. I hope the book finds wide readership and is a help to others in similar situations, or who wonder about these questions.

Wow .. I didn't know the figure was 80% Miko. I can tell you that having a child with issues does put a big strain on a marriage.

As the mother of a preemie, I found that article painful to read. Ultimately, my son overcame the obstacles surrounding his early birth (28 weeks) and has exceeded all expectations (he stands nearly 6'3" and excels at everything he puts himself to). But I cannot shake, and I never will, those early days of fear and dread. I understand perfectly her protectiveness towards her twins (my son was also a twin, his sister died in utero), and the complex feelings that surround letting them go. Vicki and her family are exceptional, and I am glad she has shared her story with us.

It is a very moving story and I think I would appreciate the book very much. Vicky sounds like a wonderful person and parent.

My sister's son has a severe case of autism. A very close family member has a son with mitochondrial disease (near deafness, blindness, seizures, unable to walk, and a myriad of other health problems). The amount of grief and stress is unimaginable. There is a mourning period and for a long while my sister was depressed. (Just when you think the mourning period was over it resurfaces when the child ages and another milestone should be met, but isn't.) The reality of things is extremely painful. My sister is doing so well emotionally now. She handles things with humor, grace, and calm and pretty much always has from day one. She is divorced. Caring for a child with a disability alone is hard as hell, but she manages it so well and has a wonderful, full life.

I cannot imagine the frustration and stress of trying to arrange care and support for your disabled child in a state that does not put a priority on such things. Florida is in the middle of the road when it comes to services. Thankfully Vicky lives in California where they have better services. One day maybe we'll have services for the parents, too.

Thanks again for sharing, scody. I think I might have to read this book.

I read the Salon article yesterday, Scody. I was born two months premature myself, and often wonder if I would have turned out differently had I been full term.

The book is beautiful -- painful and graceful all at once. I'm so pleased it's being reviewed and received so well... a bittersweet accomplishment born of more pain and grief than anyone should have to endure.

I remember when the twins were born -- just a few weeks earlier, I had moved to L.A., and Vicki had me over for dinner one of the first nights I was in town. We laughed about how that same time next year, we'd all be taking them for their first trip to Disneyland. And then, a couple of weeks later, the grim phone call from my sister that she was in labor. Then, almost eight years later to the day, the grim phone call that Evan was suddenly gone. I was driving up Laurel Canyon in the evening rush hour and wanted to pull over to catch my breath to keep from crying, but there was no place to turn off.

Reading the book itself was an extraordinary experience -- first, to witness what Vicki had crafted so beautifully out of all those days, weeks, months, years of hardship is pretty awe-inspiring. But also to read in book form the narrative of characters and events that I actually know and experienced myself was pretty...surreal. Like, you know how when you read a book and you create a fictionalized picture of what everyone looks like and how the houses are laid out and what the scenery is? But in this case, I actually know all of that: like, I don't have to imagine Vicki's older daughter Josie hopping down the sidewalk on California Street in her favorite red shoes; I literally remember it. I remember when Evan first learned to "pull up" when holding someone's hands, because we spent a good chunk of one Thanksgiving afternoon playing together.

I didn't get to know him nearly as well as his folks and his teachers and aides did, but I know he was an amazing kid -- so tough and sweet and funny. His life was short, but it was filled with love.

Thanks for posting your memories, scody.

I'll look for the book, scody --- thanks for the link. It's both heartbreaking and revealing to read how thoughtful, loving people cope with personal challenges and household disasters. Losing a child must be life-altering for a family in ways I can't imagine.

My parents lost their first child in infancy. He died a decade before I was born, and I've recently become aware of how their grief shaped their parenting, and of course my young life.

I'm a little too emotionally fragile to read the book or even the Salon article at the moment, but your description resonates in a way that makes me want to remember it and read it in a stronger time. Thanks for that.

What a heartrending story, scody. Thanks to you and Vicky for sharing it with us.

My granddaughter was born at 26 weeks. She was delayed in some ways, mostly size and speech, but is a sweet and crazy (in a good way) nine year old firecracker today.

I look forward to reading the book, too.....I feel very conflicted:upset with the doctors that they refused to let the parents make the final decision, but glad that Evan did have the best life possible to him.