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09/04/2014 09:56 am ET | Updated Nov 04, 2014

The Origins -- And the Price -- of My Accidental Manifesto for Children's Mental Health

Liza Long's essay, "I Am Adam Lanza's Mother," went viral in the wake of the Newtown tragedy in December, 2012. The following is an excerpt from her new book, The Price of Silence: A Mom's Perspective on Mental Illness.

October 20, 2010. Sitting in a psychiatrist's waiting room with my son, I find myself transfixed by a magazine reprint of the classic black-and-white JFK and Jackie photo taken in Hyannis Port, 1960. They are both looking to the right -- his iconic boyish smile is as bright as his crisp white linen button-down. Jackie's half smile, elegant like her perfectly pressed floral print dress, is softer, contented. They are comfortable together, two beautiful people at peace with each other and the world. It is a hauntingly intimate photo, a perfect moment that belies the storms that would rage through their loves and lives.

No one is beautiful or brave or brilliant enough to live a life free from pain.

Still, sometimes I wish that life could be distilled to the simplicity of photographs.

When I was married, I was obsessed with the perfection of my family photos. I learned Photoshop and would spend hours planning photo shoots for my children, in their matching outfits, with their beautiful blond hair -- my brilliant, beautiful, perfect children. Of course, with four, I could never get them all to smile at once. So I used a digital guillotine to refashion reality. I took the best image from each shot and merged them to create a masterpiece that never existed.

Now, thinking about this, about the time I spent digitally massaging photos to create a reality that did not exist, creeps me out. Why did I care about something so artificial?

Later, I sat in a drab doctor's office on the floor next to my son, watching him connect and disconnect little plastic bricks. He wouldn't look at his father in the corner, seated beside a stranger, his stepmother.

I closed my eyes and thought about the photographs. We had our own Hyannis Port, our own moments of grace reduced now to photographic stills, evidence of a life that no longer exists, that probably never existed.

But I wanted that life!

If you knew his real name, you could look up court documents to see that [my son] Michael's father filed for divorce in 2008, that he remarried a few weeks later, that I petitioned the court for a custody modification to seek sole physical custody of my two older sons in 2011 after they had already been living exclusively with me for several months, and that custody was formally modified in May 2012. You could also see that he petitioned the court for a custody modification granting him sole physical custody of our younger two children in June 2012, and that he successfully argued an ex parte motion to remove the younger two children from my care on December 24, 2012, a week after my blog post went viral. He did not notify me until two days after the order was issued, when I e-mailed to ask what time he was dropping off Anna and Jonathan, and he replied, "I'm not."

The judge in that case left me with a Hobson's choice: I could keep my younger two children half-time, but only if I committed Michael to long-term residential care. Two well children or one sick child. No mother should ever be faced with that kind of choice, just because one of her children is ill. But that is the choice facing me today, as I write these words. It is a choice that too many parents face.

I will say this, though: no parent should ever have to do what I am doing alone. When I wrote my blog post, I had been solely responsible for Michael's care for more than two years, except for three hours per week that he spent with his father (and he now has not seen his dad in several months outside of social settings). In all that time, a persistent, low-level anxiety has run constantly through my brain, like the three-kelvin microwave background that permeates the known universe. I am never worry free, not for one minute. When the school calls, my heart skips. When I see police officers in my neighborhood on the way home from work, I instinctively check the backseat to see if my son is behind bars again.

Like many parents, I have tried for years to "manage" my son's condition essentially on my own. I've thought that I could wish him into wellness. I've even denied that he had problems. The emotional anguish of my blog post came out of that space, as a national tragedy sparked a private moment of raw honesty.

And yet when we speak, we may subject ourselves and our families to even worse punishments. I believe that this is why the stigma associated with mental disorders has not decreased in recent years. Families are afraid to speak up about or ask for help for their sick children, for the very real fear that they will lose their healthy ones, either to another parent (as in my case) or to the state. There are other, more mundane reasons, too -- that ache we feel as we long for Hyannis Port. The shame of having a child who isn't perfect -- at least, by society's impossible standards.

It's easy to blame parents. When Adam Lanza shot up an elementary school, we wanted answers. So many small coffins, grieving parents, presents under Christmas trees that would never be opened. But as we always do when these outlier events occur, we inevitably looked to easy answers -- guns, and parenting. In the immediate aftermath, the pundits were certain: clearly it was Nancy Lanza's fault. She should not have had guns in her home. She should have recognized how potentially violent her son was. He should not have had access to guns.

As a mother of a child with a mental disorder, I know one thing for sure: she tried to help her son. No mother wants her child to suffer like Adam Lanza did. No mother wants her son to murder first graders. Without in any way condoning what Adam Lanza did, I am still troubled by the media's reporting of twenty-six victims in that Newtown tragedy. There were twenty-eight victims. Adam Lanza and his mother were victims that day. Like too many people who suffer from mental disorders, Adam Lanza completed suicide. I say "completed" suicide because the normal phrase, "commit suicide," suggests that this ultimate act of self-harm is criminal in nature, contributing to the stigma of mental illness. When Lanza completed suicide, he committed a criminal act, taking twenty-seven other people with him. We can talk all day about gun control. But what is our obligation as a society to care for people like Adam Lanza? What should we have done for his mother?

Like Nancy Lanza, I'm a highly educated white woman with resources, with connections, with health insurance. Think how bad it is to have a child with a mental disorder if you don't have any of those things.

And so my 750 words became an accidental but powerful manifesto for children's mental health. In retrospect, I think that one of the things that resonated most strongly with parents in similar situations was the raw emotion in the piece. That's because I, as the writer, was revealing truths to myself that I had been unwilling or unable to face. My first audience was myself.

So for me, and for many other parents, this is what "normal" looks like. People said that I was brave for telling my story. I did not feel brave; I felt helpless.

This is how ordinary people become heroes. When bravery finds you, you don't have time to think. You've been preparing for this accidental moment your entire life. If you are brave, when that moment finds you, you embrace the consequences, no matter how terrible. The naïve part of me actually believed that my cry for help would reveal some meaningful answers. That's the way it works in fiction, right? You have a mystery, you follow the clues, and you solve it.

It proved to be a bit more complicated. But I have hope that the conversation I sparked might translate into something meaningful. The ancient Greeks defined their heroes on two axes: praxis (deeds) and logos (words). We've had enough of logos in this epic battle against mental illness. It's time to take action. Like so many who take a first step into the darkness, I did not mean to be brave -- I was an accidental advocate. But I will accept the consequences. This is a battle waged, in the words of one of my favorite poets, Robert Frost, "for Heaven and the future's sakes."

2014-09-04-lizalong.jpegReprinted by arrangement with Hudson Street Press, a member of Penguin Random House (USA) Inc., from The Price of Silence by Liza Long. Copyright © 2014 by Liza Long.

Watch Liza Long discuss her book:

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