If "A Heartbreaking Work of Staggering Genius" wasn't already a book title – of one of my favorite books, no less – I would apply it to "Happiness: A Memoir."
Oh, heck. I'll apply it anyway. "Happiness" (Henry Holt), recently released, is Heather Harpham's utterly gorgeous (heartbreaking, staggering, genius) story of life with a seriously sick child.
If you're looking for a book to love, I recommend it.
Harpham's daughter, Amelia-Grace, was born with a condition that caused her red cells to break apart in her bloodstream. By 3 months old, she'd had four blood transfusions. Her organs had to be frequently and carefully monitored. Eventually, doctors decide, she needs a bone marrow transplant.
Amelia-Grace's father, Brian Morton, Harpham's boyfriend at the time, observed her first months from afar, unsure what role he wanted to play in the lives of his baby or her mother. The book is as much an honest, fascinating exploration of romantic love as it is the parental kind.
The story is told in riveting, plot-twisting fashion, and I'm loath to reveal a lot of plot points.
But I'll say that it's also told with care and courage and humor, and it will deepen your understanding of not just life with a sick child, but life.
Harpham wrote throughout her daughter's medical treatments and hospital stays, chronicling the experience as it was happening and updating family and friends through a CaringBridge site.
"My first creative form is as a performer and a theater person, so when I could go to work again I made a new solo performance piece about the experience," Harpham said. "I didn't think I'd write about it. I wanted to be done with it. But that material kept intruding on what I thought I was up to."
She spent close to five years writing "Happiness."
"I was really urged by my writing group, 'Write everything down with as much fidelity to the lived experience as you can, and pull stuff out later if you need to protect people,' " Harpham said. "Write it first; craft it later."
Morton, she said, was an engaged and willing partner in the writing process.
"I felt an intense responsibility to try to represent his point of view in equal weight with my own," Harpham said. "There were tense moments, and we didn't always see things in exactly the same way – we're two different people. But when that happened, I tried to make sure his way of seeing it was at least represented."
Amelia-Grace was born 16 years ago. I asked Harpham if the fear she felt at the beginning of her medical ordeal has faded.
"It does fade, but it never goes away," she said. "I think that's true for anyone who's gone right up to the edge of the abyss with someone who's their heart's heart – your child or your dearest person. You don't ever feel 100 percent certain that it's a given that nothing terrible can happen, because something terrible has happened. Learning to live with that without being crippled by it is hugely important."
Harpham wrote the book, she said, in part to reveal and honor the village of friends, relatives, neighbors and medical people who kept her family afloat during some of the darkest days.
"I consider storytelling to be such an old art form and intrinsic to the way that humans make meaning and community," she told me. "We were so embraced by our community in a time of need that I hope this is a tiny ripple of thanks back."
Which reminds me of a passage from the aforementioned "Heartbreaking Work," Dave Eggers' 2000 book about raising his younger brother after losing both parents to cancer.
"We share things for the obvious reasons: it makes us feel un-alone, it spreads the weight over a larger area, it holds the possibility of making our share lighter," Eggers writes. "And it can work either way – not simply as a pain-relief device, but, in the case of not bad news but good, as a share-the-happy-things-I've-seen/lessons-I've-learned vehicle. Or as a tool for simple connectivity for its own sake, a testing of waters, a stab at engagement with a mass of strangers."
Yes. All of that.