The Fault in Our Hearts

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.


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While it Lasts

This has been a most interesting week. My book Heart Warriors, A Family Faces Congenital Heart Disease went on sale Wednesday for $1.99, and by the end of the day my book was in the top 15 of all kindle biography and memoir titles. Then the next day came and I expected the rank to crash, but it stayed pretty high. Then today, I went looking for the crash, but instead found the book was once again on sale for $1.99.

I did not know Heart Warriors would be on sale again today. So, if you want it, get it now because I don’t know when it will stop being on sale. Anyway, here are some fun pictures of Aunt Amanda’s Wild Ride, and I’m sure, soon there will be a crash, but at least I had Friday to be the author of the #1 book in Medical Memoir. That’s a lot of awesome.

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A Decade of Mo – The Most Beautiful Girl in My World

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If a picture is worth a thousand words, then here is the story of the life my most precious pearl, june bug, Gemini, baby girl. The one, the only, the amazing Moira. Happy tenth birthday to my darling girl, no … Continue reading

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G is for Graduation, H is for Holter

Staying true to not writing about Liam’s personal life, I’m going to do my best to share only my feelings. Sufficed to say, Liam has never, ever liked Holter monitors, a documented historical fact, and it’s not gotten any better. The Holter monitor came back yesterday, it’s like a boomerang.

For those not in the know, a Holter monitor is a smallish box that connects to five leads that are attached to the skin over the ribs and sternum, and Liam happens to be allergic to the adhesive in most of the leads on the market which causes blisters under the pads that rip off with the pads, bleed, scab over, etc. The reason he has had so many is that he has a long and complicated history of rhythm issues. Let’s just say that as we endure the 21st or 23rd . . . certainly more than 20 . . . Holter in our house in the past seven years it’s gotten old.

Just now, from the corner of my eye, I saw Liam watching over Moira’s shoulder as she used the computer. He looked like he was holding an old Sony Walkman with a cord coming off it, just standing there holding an electronic device like any eleven year old boy. Then it hit me, again, that he’s wearing leads on his skin on top of 21 chest tube scars, and at the top of his sternum where his skin has been cut through with a scalpel six times. He’s holding a device that’s measuring his most vital sign of life because it came unclipped from his waist band. Why can’t it be a Walkman?

So back to me, because I don’t want to expose him any more than necessary. Our lives have been so stable and ordinary, for the most part, since Liam started kindergarten almost seven years ago. Yes, we’ve had a couple of trips to the ER and the whole pace-maker dance, routine appointments, curious blood work, the Philadelphia clinic visit, thousands of dollars worth of Holter monitors, etc. But no caths, no surgeries, no overnight hospitalizations since the week before he started elementary school. The Holter, with its wires and log sheet, just remind me of things I’d rather forget.

I always wondered how some heart parents could pretend like everything was in the past when we all know heart defects, especially palliated ones, are never fully “cured,” just treated. Then one day, we started living instead of surviving, and it really is easy to forget.  It’s also very painful to remember, a bit like whiplash.

We’re sixty minutes away from getting rid of this Holter and six days away from a biannual cardiology appointment. These are the moments anxiety and what-ifs typically seep into my subconscious mind and start keeping me up at night. These are the moments when I remember surviving and forget how much living we have done, and that is sad.

Liam “graduated” from elementary school last week. Jim and I got front and center seats, and we both cried big rolling tears.  Just days before our son started elementary school a nurse had thrown all of her weight on top of a sand bag that she was pressing against Liam’s femoral artery to keep him from bleeding out after a cath, where he had angioplasty and a stent placed after more than seven hours under general anesthesia. Then, he started school like nothing happened. Yes he had big IV bruises and was on blood thinners, but otherwise he was no different from the other five-year-olds in his classroom. He was so excited to start school and wanted us out of his school so it could be his place in the world. I watched other parents crying when their kids started kindergarten, but I was numb from the week before. Now, he’s a middle schooler – just like that.

Last Friday I was no longer numb. I felt the full weight of how very far we’d come, and the enormity of gratitude that I carry through my life. As emotional as I was, it was a blissful kind of contentment, the exact opposite of numbness. Then, yesterday the Holter came, and tomorrow it will leave, and we will ride the waves of this life, feel the panic of free fall, and find our balance again, and again, and again. This is what it means to live, and it is a beautiful thing.




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Getborn Post for May

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I wrote this on Facebook tonight. What a blessing it is to forget.

Eleven years ago right now, I was drifting off on my very first overnight in a hospital, 22 hours later I would have a living child. 34 hours later we would chose for him: life or death with no guarantees of the former and plenty of opportunity for the latter. Eleven years ago, at this moment, on a Sunday night, I fell asleep on the precipice of the most precarious fall and meteoric bounce a mother could know.

In ten hours my son will wake up, eleven. He will begin a new year of his hard-earned life, and I will only pause for a breath, a blink, and remember the baby who became the boy that lived. My own magical miracle whose most extraordinary feature is how incredibly ordinary he is.

And I forgot his Fontanniversay, and I made it through most of April 12th forgetting that was the day he almost died, for the third time. I will barely remember tomorrow, as I buy my ticket for Muffins with Mom, and I browse the book fair, and I go about my business as an ordinary forty-year-old mom on her son’s eleventh birthday. I will barely remember being barely twenty-nine and gathering all the strength a mother can possess to bear the impossible risk for the ultimate reward.

This is my reward, forgetting, I will forget when I am done typing this. I will forget like a woman forgets her labor pains, I will forget the fight and let it rest like stones beneath the river, because we are eleven years and a lifetime beyond where we began. Because there were ten other birthdays that happened after, and there were smiles and laughs and joy, and there will be more, and I welcome it. So now I forget, not what I learned, but how much it hurt to learn it, and I will remember only the joy of his first cry and the smell of his soft skin, and I will celebrate my son’s birthday with none of my baggage and all of his joy.

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Half-heart, Whole Body: Part Two, B-R-A-I-N-S

Recently, at the behest of our cardiologist, we met with a neuropsychologist who administered a great many tests and even called our son’s teacher for an interview. There was no recent trigger for this visit, other than my intense interest in the “Whole Body” health care approach to CHD and our recent trip to the Single Ventricle Survivorship clinic at Children’s Hospital of Philadelphia.

The field of neuroscience is advancing rapidly, and the leading pediatric cardiologists are realizing that you can’t put a body on life-support multiple times during a child’s most active developmental years and not expect something to happen. They won’t know what that means unless they study it broadly.

As promised, I’m not going to talk about my son in particular.So, after spending an entire day in Aurora at Colorado Children’s Hospital and returning for an assessment, here are some very general things that I learned.

1. Psychosocial skills are really no different from reading or math skills in the sense that your brain needs practice to get good at them. Some people’s neural pathways develop super fast with these skills (that would be the kid who everyone wants to play with at school), and some people have genuine disabilities, just like people have reading disabilities such as dyslexia. When that happens, the best thing to do is retrain the brain, as soon and as much as possible. This is akin to cognitive-behavioral (how you think and act on your thoughts) modification through therapies such as one-on-one with a therapist or in a group of people learning the same skills, and lots and lots of practice.

Personally, I was extremely delayed with this function as a child and it was one of the hardest skills I ever had to learn. I’ve gotten pretty good at it, I think. So if you have a socially awkward child, heart child or not, take heart because progress can be made with patience, time, and support.

2. Executive function is another skill that is not dissimilar to other neurological skills. It’s basically the big-picture ability that allows you to arrange abstract details (I need to open the closet door before I can hang up my clothes, but before all that I need to finish the laundry) into a big picture goal. Some kids do well with this and don’t fluster easily. Other kids (and adults) struggle with organization both of time and space. Again, in my case I still struggle with this in a spatial way, but I’m a good planner in other ways. The point is, this is a skill, again like reading and math, that is learned over time, and some people learn it faster than others.

3. Cognitive function is the more academic piece of the brain-pie. This is your aptitude for things you would learn at school or on the job. Math skills and reading skills fall into this area, and it’s the easiest one for lay people (ordinary folks like us) to understand. We get that some people are better at math than others, just as some people are better at sports than others. I think if we could just apply this metaphor to all the other neurological skills that children are developing before adulthood, we would be much less judgmental about childhood behavior and much more likely to find the kind of skill-tutoring that is right for each struggling child.

4. Processing speed is kind of like the processor in your computer. Some or our neural networks are just not super efficient and we’re slower at processing different types of information. This is why some people do better with images and some do better with sound when learning.  Slow information processing doesn’t mean someone isn’t smart or capable, it just means they take more time to get the information from their senses to form a response like catching a ball or finishing a math test.

Really, what I learned is the brain is super complicated and needs time to develop the many functions humans use everyday, but I’d picked that up in Greene’s The Explosive Child years ago. That book was so incredibly helpful when I was a new mom and helped me understand my kids weren’t trying to drive me crazy, they were just trying to develop neurological functions. Also, while the title of the book included the word explosive, some behavior delays and challenges are not always disruptive and are more subtle but no less important to the overall health of a child and family.

What was different about our recent visit was the acknowledgement that open-heart surgeries and CHD itself may impair functions that were not already strong in a child and compromise natural strengths. We see many gross motor skill delays in CHD kids, but no one used to look at things like executive function or emotional growth in a clinical way. It used to be all about the heart, and now we’re seeing more of the whole body.

While a closer look can be scary, what’s wonderful is that we are finally seeing that collaborative care approach between specialties that has been needed for so long! That is lighting up the pleasure center in my brain and warming my heart.

My Advice?

1. Check out Greene’s book (mentioned above) from the library or buy it. It’s a great book and I think every parent should get a copy of it and be forced to read it before you take your baby home. It’s so insightful, not because it tells you exactly what to do or what not to do, but why your kid might be doing things that drive you crazy, any kid, even the most healthy ones. I wrote to Dr. Greene about this post and his nonprofit site Lives in the Balance, and he was kind enough to write back and share that the website contains “lots of free resources that I hope will also be helpful to people.” Really, if you’re thinking about taking steps two and three of my advice, Greene’s books and website are a good start so you know what kinds of questions to ask your physicians, clinicians, and schools. And I was not paid or even asked to promote this book, it just was really that helpful to me as a parent to find my bearings early on in my children’s lives and I think we’re all healthier for that.

2. If you’re a heart parent or an adult CHD patient who had pediatric heart surgery, talk to your cardiologist about what your center is doing in this cross-disciplinary area. Our own recent visit will inform and improve our child’s 504 plan at his new school. In the past I used the 504 as sort of insurance policy, should we need special considerations around long hospitalizations or unexpected complications. Now, it’s going to be a proactive tool that identifies both growth areas and strengths and sets our child up to achieve, not fall behind. We owe it to ourselves to learn more about how the heart and brain are connected so we can get our kids (or selves, ACHD folks) the services necessary to catch up on any delays that may or may not be the result of CHD.

3. If you’re not a heart parent or are concerned about a healthy child displaying difficulty in one or more of the areas listed above (they’re not exhaustive, read the resources in the links for more information) talk to your pediatrician about your concerns. We don’t talk about the variety skills children need to develop enough. Unlike the standardized math and reading tests, there are many more skills that can be measured and strengthened with the right resources and support.

That’s all I’ve got on brains for now. Next time I’ll write about how the Fontan circulation impacts the liver and what we learned at the Single Ventricle Survivorship Program last August.

Oh, and thanks, Dr. Greene for responding to my email and all the work you do to help not only children, but also strengthening communities to support kids and their needs!


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