Nearly 6 years ago, when Boo was diagnosed with "clinical features of autism," I became Grace Connolly, the protagonist in Maribeth Fischer's incredibly heart-wrenching novel, The Life You Longed For.
With some significant, distinct differences, I should add.
Unlike Grace, I didn't commence an affair with my high school sweetheart. (Or anyone else for that matter.) And Boo's diagnosis was starkly different than mitochondrial disease, the terminal one afflicting toddler Jack, the child of Grace and her husband Stephen. And unlike Grace, I don't have a degree from Penn in epidemiology.
But, like Grace with her 3-year old Jack, I clung to anything I could possibly find that would help me even begin to understand what the future would hold for my just-turned-2 Boo. Like Grace, I read books, I wrote down questions to ask the doctors. I didn't doctor-shop, per se, but we did bid a hasty buh-bye to that first developmental pediatrician and quickly (well, not all that quickly) found another one with a more kindly, optimistic bedside manner.
And since The Life You Longed For is set in Philadelphia (in 2001, in the months pre-9/11) both hospitals mentioned in the novel are ones that we have been at. (Fischer has obviously walked the same halls of the one I did, as she describes the lobby of one "home-away-from-home" in perfect detail.)
All of these details made reading The Life You Longed For a particularly personal, poignant, hits-so-close-to-my-literal-and-figurative-home experience. But even if you're not a parent of a special needs child, it is so easy to imagine yourself in Grace Connolly's shoes as she does all of the things I've listed above ... and is falsely accused of Munchausen Syndrome by Proxy, a charge that affects the entire Connolly family with devastating, heartbreaking consequences.
To be sure, this beautifully written novel is not an easy one to read in terms of its subject matter. But - and I cannot emphasize this enough - I think it is an important one for everyone to read. Frankly, I think Maribeth Fischer and The Life You Longed For deserves far more attention. (I'm talking to you, Oprah, 'cause I know you read my blog, girlfriend :). I'd never heard of this novel until I found it on the library shelves while browsing in the stacks, the title catching my eye.
Why? Because it is so easy, so heartbreakingly and heart-stopping terrifying easy, to be falsely accused of Munchausens. Because all that we do as parents - the reading of the books, the wee small hours spent online in listservs (as I did with a group called Parenting Autism back in what I call my black hole days), the questions asked of doctors, the easy friendliness that develops with one's child's doctors and therapists - all of those things that we think are the qualities of being an advocate, your child's voice, a dedicated and loving parent, are (according to the scientific information in Fischer's novel) the very same characteristics of a mother who has Munchausens.
Another reason why The Life You Longed For is an important book, even if you're not a parent of a special needs child, is because most likely you know someone who is. And it is so easy to judge that parent, to jump to conclusions that aren't there, to make assumptions. I admit, I've done that myself, I am ashamed to say, in the days before I became a parent and long before Boo's diagnosis.
We don't know what it is like to walk in another's shoes, plain and simple. And even if we think we know, we really don't.
What we do know, all of us, is what it is like to imagine the life we could have had. I think we all do this to some extent, but I believe that feeling can intensify when dealing with a child's illness. We retrace every step of our lives, of how things woulda-coulda-shoulda been different if we didn't stop to say hi to that cute guy in our college class, if we didn't take that internship or job, if we didn't choose to stay with one person instead of another.
"Snow shimmered, luminescent beneath the full moon, the stars like ornaments in the tops of the trees. Scientists now believed that the moon had been formed when another planet sideswiped the Earth, dislodging huge chunks of its crust, which flew off into space and became the moon. She thought of Noah, of how in so many ways he was this to her, the part of her life that had broken off - the life not lived. Maybe those unused pieces of your past become their own entity. A moon. Another planet. A place without gravity or sound. A place without wind or rain or weathering or erosion, so that even the smallest surface markings, each one a kind of memory, stayed in place for years. And yet always it was there, the moon - the past - waxing and waning, exerting its force over the tides of the life you lived now." (pg. 93-94)
While reading The Life You Longed For, I kept thinking of the Barbra Streisand song, "On My Way to You," which I had selected for my soloist to sing during my wedding to The Dean.
"So often as I wait for sleep,I find myself reciting
Songs forgotten in the morning
I relive the roles I've played, the tears I may have squandered
The many pipers I have paid along the roads I've wandered
Yet all the time I knew it, love was somewhere out there waiting
Though I may regret a kiss or two
If I had changed a single day, what went amiss or went astray
I may have never found my way to you ..."
It's so easy to go from what is to the life longed for.
I realize that in this review, I'm making this more about the personal than a plot discussion of The Life You Longed For. And yes, there is so much more I could say about this book (which I would be giving 5 stars, if I still rated books) and the symbolism and layers within its pages. But although I don't know her, I would hope that this would be the desired reaction - or close to it - that Delaware-based author Maribeth Fischer would like her readers to take-away from this incredible novel.
To see ourselves in Grace Connolly and her family and friends.
To say to ourselves, there for but the very grace of God go I.