I’ve never read The Hunger Games, or The Fault in Our Stars. It’s not that I’m dismissive of young adult (YA) literature, it’s just not my thing. I also don’t read westerns, mysteries, science fiction, or most fantasy,  but I do read the news and couldn’t miss the frenzy over The Fault in Our Stars film and author John Green.  I was curious about the title because I’d read that it was from a Shakespeare play, so I looked it up.

The source quote is from Julius Caesar and about negotiating the difference between fate and personal volition. Here is the quote:

Cassius: “The fault, dear Brutus, is not in our stars,
But in ourselves, that we are underlings.”
Julius Caesar (I, ii, 140-141)

This longer quote made me contemplate how much of my life over the past eleven and half years has been a response to the fate in my own stars – the uncontrollable facts of my life as I responded to my child’s illness. My reaction was to try to wrest control back by throwing my full weight against research and support for families facing Congenital Heart Disease. Ultimately, I came to the conclusion that all of my effort has been grief-bargaining with Fate, as if fighting the disease with all of my might would prolong my child’s life. Now I realize I wore myself down and burned out emotionally trying to negotiate with fate, when rationally I knew that I’ve done all that can be done.

This change has been coming for many years.  At first it was hard to step back, but I’ve come to understand that my withdrawal from advocacy-overload is not resignation to defeat but acceptance of the circumstances I cannot change. I can only change myself.

This shift in my identity from Advocate then Amanda to Amanda first, then Advocate, is happening at the same time my son is withdrawing from being seen as a patient. Back to John Green,  In this article,  Linda Holmes references Green’s fans by writing:

The Book Girls are only partly real; like most heavily marketed-to demographics, they only sort of exist. Every Book Girl is something else, too – a sportsy girl, a scientist, a nail-art aficionado, a poet, a prodigy, a patient. But the force they are exerting is real.

The red bold type is my addition. When I read this I was startled. Is “a patient” as much of a person’s identity as an interest in science or sports? It seems wrong that every other interest on that list was a positive, but identifying as a patient seems like it should be episodic, when you’re at the doctor or in the hospital, not a defining characteristic of your personality or existence. Was my focus on CHD forcing that identity on my son? Our lives are so much more than a medical condition, so much bigger than the difficult episodes. People want to be sporty, they don’t want to be patients. I don’t want my son to be a patient.

This article with that one tiny word brought an epiphany to fruition. I’ve been try to extricate our family from the “patient” label, thinking I alone had done the labeling. But no, it’s bigger than I am. This effort to wriggle from beneath a label began more than a year ago when I sat down to re-review the submissions people sent for Heart Warriors II. It was supposed to be an inspiring sequel to my first book that showed the world what made CHD survivors strong, what made them special, what it was like to face down this diseases from the patient’s perspective.

The stories were compelling, but the most interesting things, the most impacting things that happened to these people were not related to their CHD. The most pivotal moments of their lives happened not because they were patients but because they’re normal people. What I learned was that they were just like me, and so was Liam. He’s just a kid, not a hero, and putting a hero label on the shoulders of a little boy is beyond unfair. The label of hero as heavy as the label of victim, and neither is accurate. My son is a strong survivor, but he didn’t do anything any other human being wouldn’t do and has done when faced by a threat to life.

For the first part of my children’s lives. I was so immersed in my own identity as a heart mom, I crowded out full development of my family’s unique identity. I compromised my identity as “just a mom,” by trying to be a super-mom. We should be the Adams Family, The Board-Gamer Family, The Goldendoodle-lover Family, The Ordinary Family, and all these things we love and choose to do instead of being defined as a Heart Family. That label has constrained us in ways I couldn’t see while I wore it. I know I will always be a heart mom and I am not ashamed of that, but I am also more than that.

CHD-survivors who responded to my call for participation are no less compelling because CHD was not the driving factor in their lives. In fact they are richer, deeper, more diverse and interesting people than they are patients,  but it took reading their stories to realize they are not for me to tell. I was trying to tell a different story, the story of the heroic struggle, and that story was a fiction. The true story is ordinary people facing extraordinary interventions, not unlike any other person impacted by any other serious threat. The threat is not welcomed, but it is managed.

There was no pivotal patient moment that connected these stories. Instead there was the progression of life and the adaptation to circumstance, just the same motions of humanity we all do. Because the difficult events around our CHD journey seemed so huge, I gave them more space and meaning in my life than they deserve. Yes it was huge and most people don’t have to deal with all of this, but now that we’ve dealt with it, it’s time to let that go.  I don’t judge myself for how I coped or saw the world around me from where I stood. I am compassionate enough to myself to recognize my behavior and release my grip  on the past as an act of accountability and an effort to live in the present. Every year brings me more perspective, and I continue to change, just like everyone else.

John Green, as a famous writer, is a unique position to restore the perception of humanity in those who’ve been betrayed by their health and are no less human for it. CHD Survivors don’t need a pedestal, they deserve even footing to live  their normal lives. Someone once told me I’m famous in the CHD world, in the Heartland, because of the nonprofits I founded, the advocacy work I’ve done, this blog, and my first book. The fame label didn’t feel like an insult or a compliment, it felt like a responsibility.

I  don’t know if I am famous, but it’s my greatest hope that by sharing this long and perilous journey that this ending of Advocate-first Amanda the the emergence of Amanda, Mom-Wife-Writer-ProgramManager- first, Advocate-after helps other families who feel an affinity with our family find more perspective and healing. We can stop fighting with the stars or the futility of wishing away a disease. We can label ourselves something new and unique to each of us as individuals, something extraordinarily ordinary, something we choose for ourselves.