Category: chd awareness

Letting Go

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As my evaluation dates grow closer, I keep thinking about being sick enough, and whether I even know what that means. Medically, it isn’t my choice whether I’m sick enough; that decision is above my pay grade. It is however, my choice whether I feel sick enough to agree to being listed, and to accept everything that comes with that.

This has been a very hard thing for me my whole life.

When you live within the paradigm of a person with a chronic illness, or a progressive disease, whatever you want to call it, your definition of feeling healthy is often leagues apart from the average person’s definition of feeling well. That discrepancy has reared its head more than once in my life, much to the confusion of people who live within the paradigm of health and wellness.

Imagine my surprise when, at 13, I discovered that most people don’t experience sudden racing heartbeats that make them feel ill. Or the time I found out that it isn’t, in fact, normal to wake up from a dead sleep gasping for air, or feeling like someone just punched you in the center of your chest. Whoops.

How was I supposed to know? I’d never known anything different. And the doctors weren’t asking those specific questions, so I wasn’t answering them.

“How are you feeling?”
“Fine.”
“Are you having any heart issues?”
“No.”
“Have you had any issues with dizziness or fainting?”
“No and no.”

They never asked, “Are you waking up gasping for air?” or “Do you feel sick to your stomach after exertion?” So I assumed that was A-okay. Upon reflection that was probably a giant dose of disassociation/denial but I have enough to unpack in therapy already so, moving on.

I wasn’t stupid. I understood that the other kids could play in PE class much longer than I could, but I could still play. And because our PE teacher was a bit of a taskmaster with no time for whiners, I often pushed myself beyond what I felt my limits were, just to avoid being singled out by her.

But it’s not like my friends and I sat on the swings at recess and debriefed about how we felt after gym class. There wasn’t really anywhere for a kid, especially one who’s always been pretty literal, to gain context for what I was feeling.

And in a lot of ways, that’s still true.

Am I sick enough?

Is the life I have right now so hard, and so distant from where I want to be, that it’s worth pushing all my chips in and hoping to come out the big winner?

If I am sick enough, what does that mean about me and about the “little heart that could” that still beats in my chest? The heart I’ve been betting on my entire life to defy the odds and prove people wrong. And what about the life that I have made purely out of spite and determination? What happens to all that stuff if I give up now? Is it giving up, or is it moving up?

In therapy I’ve talked a lot about the way I personify my literal heart as a character in my life; both friend and adversary, hero and villain.

What does it mean if I agree to exchange it for one of those fancy, normal hearts? A heart that hasn’t known what it is to struggle for each bit of oxygen it provides. A heart with no scars, no history, no quirks.

What part of me do I lose when I lose it?

I’ve talked about this exact thing so much in fact, that my therapist has suggested he could write a letter to the transplant team explaining why he thinks I would benefit from seeing my old heart once it is out of my chest. He knows how important this relationship (and it is a relationship), is to me and thinks it might be best to allow me a moment to say a true and final goodbye. I tend to agree. It feels a lot like I will have to redefine who I am without this other part of me that shaped me and my life in so many innumerable ways.

Then again, Dr. B talks about “the window” all the time at my appointments, wanting to list me while I’m in the window. That Goldilocks zone between sick enough to need a transplant, but not so sick that I can’t endure it. I trust him. I trust his team. Why is it so hard to trust the process?

I don’t want to miss my best chance. I’ve had a front row seat to watching someone I love make the stubborn choice, the wrong choice, every single time they were offered a choice and killing themselves in the process. I refuse to be that way. I have been a fighter my whole life.

Plus, there are still so many things I would like to be around for in the future. So many things I haven’t done, or seen, or experienced. I don’t want to get to a place where the choice is out of my hands, or worse, where there is no longer a choice at all because I missed that window.

My whole life has been a lesson in endurance, physically and mentally. Every day has been a test of how far I could go, pushing boundaries, pushing limits.

Agreeing to a transplant isn’t endurance. It’s acceptance.

It’s saying, “Okay. I’m willing to put the cudgels down and stop fighting this fight. I’m ready to embrace whatever comes next.”

That’s a big pill to swallow, and I know a thing or two about swallowing big pills.

Maybe agreeing to a transplant isn’t betraying my heart. Maybe it’s the last thing my stubborn little Franken-heart and I will do together, one final act of defiance against the disease that has been trying to end this story for decades.

I don’t know.

I truly don’t.

This is where I’m supposed to wrap things up neatly in a little bow and tell you that I’ve found my resolve one way or the other. But this isn’t that kind of story. The choices are too big, the consequences too permanent, and the questions too complicated to tie up that cleanly.

Right now, I’m still sitting with the question.

Am I sick enough?

Maybe the truth is that I won’t ever feel like I am. When your baseline has always been “make the best of it” and “push through,” the idea of being sick enough for something this enormous feels almost impossible to measure from the inside. Enough implies a limit, and limits are not something I have ever been very good at accepting.

I do know this: I don’t want the choice to disappear because I waited too long. I don’t want the window to close while I’m still standing here trying to decide whether I’m brave enough to walk through it.

So for now, I’m doing the only thing I know how to do. I’m showing up. I’m asking the questions. I’m listening to the people who know more than I do. I’m putting my trust in the people who deserve it, and I’m taking each step as it comes.

Or at least I’m aspiring to do. In reality, I’m already worrying about several steps down the line. I need you to work with me here; I’m trying to keep us all optimistic.

And, in the middle of all that trust, hope and aspiration, I’m trying to figure out what my stubborn little heart and I are going to do next.

Perhaps, the bravest thing we have left to do together is let go.

CHD Awareness?

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Last night, while scrolling, I stumbled across a set of images about congenital heart disease. I was not looking for them. They simply appeared. And if I am really honest, they were about the last thing I needed to see after a day of watching appointment after appointment populate my hospital’s patient portal, while also grappling with the heavy emotions of transplant evaluation, again.

What surprised me most was how upsetting they were, even now, even after decades of living with congenital heart disease as an adult. I still carry a familiar tension. I need support, and I also worry deeply about asking for too much of the people who love me. Those two things have always lived side by side in my body. Seeing these images brought that conflict straight to the surface.

This image frames childhood illness as chaos, exhaustion, and loss caused by the child’s condition.
It turns caregiving into spectacle and quietly positions the child as the source of stress, fear, and burnout.
This image literally depicts a parent being crushed under the weight of congenital heart disease. Though the claim is that it shows the strength of the father. For a child seeing this, the message is simple and devastating: you are what is crushing the people who love you.

I want to be clear about why images like these are damaging, and about the difference between what a “heart mom” or “heart dad” might see, versus what a person living with CHD sees.

I am a 43-year-old adult living with congenital heart disease. I grew up as the child everyone worried about, planned around, and tried to protect. Children with CHD learn very early to read the room. We learn to track tone, tension, and fear long before we have language for what is happening inside our own bodies.

Many of the recent AI-generated “awareness” images circulating online depict parents crushed under the weight of CHD. They show caregiving as collapse, exhaustion, and spectacle. Even when shared with good intentions, they carry a powerful implied message for the child at the center of the story.

You are the weight.
You are the cost.

That message sticks.

I know this because I have lived it. When I was a child, my father once joked that I was “more trouble than I was worth.” He did not intend harm. It was meant facetiously, a throwaway comment. But it landed squarely on one of my greatest fears. I internalized it, and I have been unpacking the impact of those words in my life, including in therapy, for the last 30 years.

Children with heart disease already worry about how much they ask of the people who love them. They already carry guilt that is not theirs. Vacations cancelled. Trips cut short. Bills expanding. Time off work dwindling. Over the years, through my time with kids at heart camp, I have seen this weight show up again and again. Children worrying about being too much. About causing stress. About being the reason someone else is tired, overwhelmed, or afraid.

This is why these images matter.

I have created CHD-related graphics myself in the past. I believe there is a meaningful difference between imagery that centers care, advocacy, and love, and imagery that turns the child into the source of suffering. Framing matters. Symbolism matters. What we choose to emphasize shapes how children understand themselves.

This image was created to center protection, advocacy, and love without portraying the child as a burden.
The difference is framing. Children deserve to see themselves reflected as cared for, not as the reason someone else is breaking.

Content that frames illness as something a parent endures because of a child does not raise awareness for that child. It quietly teaches them that their existence is what broke someone else, often the very person they turn to for comfort and care. A parent should be standing beside their child in the fight, not cast as someone crushed by them. A child’s heart condition is part of who they are, but it is not all of them, and it should never be treated as the most important part, even when it demands the most attention.

This kind of framing does not stop with images. It shows up in the language we use, too. Do not even get me started on the label “heart warrior.” I understand why people reach for it, and there are times it IS empowering. It is meant to honor resilience however, timing and situation are key. But for many of us, it carries an unspoken pressure to be brave at all times, to endure without complaint, and to make our suffering palatable to others. When you are called a warrior, fear starts to feel like failure. Grief feels like weakness. Needing rest, softness, or support can feel like letting people down. Children absorb that too. They learn quickly that being loved is tied to being strong, even when they are exhausted, scared, or in pain.

All of this is why these conversations feel so fraught, especially when they happen in public. We are not just reacting to a single image or a single word. We are responding to years of messaging that asks children to carry guilt quietly and to perform strength and bravery convincingly.

When I tried to engage with the person who created these images, my response was not as constructive as it could have been. I was reacting from a place of hurt, and I wanted to give some of that hurt back. It was not my best moment. At the same time, my lived experience was dismissed rather than heard. That dismissal is something many people with chronic illness or disability encounter repeatedly.

We are often asked for our insight or guidance, only to have our reality rejected because it is uncomfortable. Because it does not allow others to pretend nothing is or can go wrong. Or because it requires seeing a child as a whole person who needs many kinds of care, not just care for their disease.

Honoring parents and acknowledging how hard caregiving can be does not require turning children into symbols of burden, martyrdom, or collapse. I truly believe that parents of sick children are incredible. They do carry a great deal of weight, and they deserve to be honored and supported. But not because they are surviving their child. Because they are fighting alongside them. Because they know how to make the moments better, even when they cannot fix the illness.

I want these parents to be proud of what they do. I am deeply proud of my own mother and everything she has faced with me. That is exactly why images like these hurt.

There are other ways to tell this story. Picture yourself not as someone crushed under the weight of your child’s illness, but as someone standing beside them, clearing a path. A parent whose coffee fuels vigilance and care. Whose notebook of symptoms and questions is not evidence of collapse, but a tool of advocacy. Not a martyr, not a survivor of their child, but a partner in the fight.

I believe most people share images like these with good intentions. I am simply asking that as CHD Awareness Month approaches, we also consider their impact, especially on the children who grow up absorbing these messages long before they have the words to question them. Their feelings and well-being deserve to remain at the center of our advocacy.