Tag: love

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.

Not An If…

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On the drive home from my most recent doctor appointment, I didn’t feel dramatic or panicked. I felt quiet. The kind of quiet that settles in when something has shifted but hasn’t fully announced itself yet. I drove, followed familiar roads, and let the conversation replay in my head. This time, when he said the word transplant, it wasn’t like the first time. It is weird to have become accustomed to those words, that idea, over the last couple of years. The first time, it felt like all the air had left the room, like the floor and ceiling had suddenly flip-flopped, and I was listening from 10 feet underwater, words muffled, unable to breathe. This time it was different. When I looked at my sister and she at me, our eyes met in that quiet place between hope and acceptance. We wanted different, hoped for different, but knew the score and that I’ve been living in over-time for a while and perhaps I’ve shot my last hail Mary to save this game.

That night, at home in my own bed, sleep came and went. I think I saw each hour of the night, some for a moment, some for an hour or more. My body was exhausted, but my mind kept circling the same thoughts, not urgently, just persistently. Somewhere between waking and dozing, I realized I was no longer thinking only about what had been said in that room, but about everything that had led me there. The routines I’d built. The changes I’d made. The story I’d been telling myself about why they mattered and what they could achieve.

It was in that space, between the drive home and the restless night that followed, that something became clear.

I think part of me forgot why I started working out, taking Zepbound, and eating healthier in the first place. The last time my case was presented to the transplant panel, I was overweight and for that reason, much like Shark Tank they were out, and I was not considered a good candidate.

Somewhere along the way, maybe because I am stubborn, or because I have a deeply ingrained “watch me” attitude, I convinced myself these changes were proof. Proof that despite what “they” said, I could exercise my way out of a heart transplant. I took it as a challenge, a double dog dare to do the thing that no one else had done before, as if no one else had thought of it. Now, thinking of those words, I hear understanding and empathy. They weren’t challenging me. They were letting me know that getting healthier is always a benefit, but the goal should be to manage, not cure. They were trying to let me off the hook, and I just put myself right back on.

I tend to hear statements like that as challenges. It is how I hear most things people tell me I cannot do. My brain hears “can’t,” and my soul says, “wanna bet?” I will beg, borrow, and steal to turn the can’t into a can, the won’t into a will, the don’t into a done.

But it turns out they are right. I cannot exercise my way out of this. And instead of that realization feeling like defeat, it feels like permission. Not permission to give up, but permission to take the pressure off myself. Permission to take a breath and know that while I can do everything in my power to improve the outcome, some things simply are. Transplant isn’t an if, it is a when, and that when may be closer than I had hoped.

Letting go of that pressure does not mean I stop caring for my body. It does not mean the workouts were pointless or the changes meaningless. They still matter. They matter because they help me feel stronger, because they give me better days, because they make living in this body a little more comfortable and a little more mine.

What has shifted is the reason behind them. I can no longer chase an outcome I cannot control. I need to stop treating my body like a problem to be solved or a test I must pass to earn worthiness. I have to care for it because it is the only one I have, and because it is already doing the best it can.

There is grief in this realization. Grief for the version of the story where effort alone could fix everything. Grief for the illusion that if I just tried harder, pushed more, proved enough, I could outrun what has always been part of me. Letting go of that story is a bit painful, but I know it is necessary. It is also a relief. Relief in no longer measuring every good choice against an impossible finish line. Relief in knowing that my job is not to defeat my heart, but to live alongside it. To support it where I can, to listen when it asks for rest, and to stop demanding that it be something other than what it is.

The last couple of days, I’ve noticed an internal tug-of-war. Part of me wants to prepare everything, simplify everything, get my ducks in neat little rows. Another part of me wants to lie down more, to rest in a way that feels almost instinctual, like a bear knowing it is time to hibernate. At the same time, I want to keep moving my body, eating well, and investing in the future I still very much hope for. On the other hand, I want comfort. Small treats. Familiar shows. Soft things. (No matter how much I talk about wanting a cat, I cannot have one. Not in a box. Not with a fox. Now is not the time, and while I may whine about it, I also know it is true.)

None of these urges cancel each other out, even though they feel contradictory. They are just different ways my body and brain are trying to keep me steady in a season that is anything but.

These last few days, overwhelm and numbness seem to compete for control, and neither quite wins. What’s left is a quiet middle space. Not peaceful exactly, but contained. A kind of emotional low-power mode. I am learning that this does not mean I am avoiding what is happening or failing to process it. It means I am holding things carefully, taking them in doses I can manage.

Thinking about transplant is strange, and my feelings about it fluctuate wildly. It is complex and deeply emotional, filled with hope and terror in equal measure. The idea of how I might feel once a new heart beats in my chest is exciting, and it opens the door to images of a life I never thought possible.

I picture myself on mountain trails. I imagine morning jogs with a golden retriever (Did I borrow it? Did I steal him? Is he mine and I finally pulled the trigger on a dog named Tom Hanks?). I am doing those things purely for fun, because I am told, they can be fun when it doesn’t feel like fighting for your life. I see myself going, and doing, and being someone different, (somehow taller?), freer, less constrained by the quiet calculations and constant double-checking that shape my days now.

And then my thoughts shift to the reality of getting there. All the pieces that have to fall into place. The process of being listed, ranked, and waiting. The logistics, the uncertainty, the surrender to timelines that are not mine to control.

Then there is saying goodbye to the part of me that has shaped me into who I am, the only rhythm I have ever known. That part that I have been angry at, indebted to, bargained with, fought for, fought with, wired and medicated, all so we could blow out one more set of candles together. And of course there is the hardest part, I think, for anyone needing this particular kind of transplant, knowing that for me to receive a new heart, someone else must no longer need theirs. That truth sits heavy and unavoidable. It mixes hope with grief, excitement with reverence. It is the part that reminds me this is not a miracle without cost, but a gift born from unimaginable loss, a loss I have known, a loss I have witnessed, a loss that often feels like too high a price for someone who has squeezed 43 years out of a life they said might not even last a year.

Right now, I am holding all of this at once. Hope and fear. Gratitude and grief. Determination and exhaustion. Some moments I feel steady and grounded, and others I feel raw, distracted, or not quite like myself. None of it is performative, and none of it is permanent. It is just where I am.

If I seem different, quieter, sharper, or more emotional than usual, I hope there can be patience for that. I am learning how to live inside uncertainty without hardening myself against it. I am doing my best to show up honestly, even when that honesty looks uneven.

I still believe in forward motion. I still believe in caring for my body, in finding moments of joy, in imagining a future worth hoping for. I am simply learning that hope does not have to be loud or singular to be real. I don’t have to play the part of optimistic sick person for people to enjoy my company. Sometimes it is complicated, sometimes it is fragile, and sometimes it is just the choice to keep going, one day at a time.

Tightrope. (You don’t look sick…)

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Every day, I walk an invisible tightrope. Step by step, I inch forward, steadying myself, fully aware of the drop below. Chin up. Smile. Do not let the audience see the tremor in my hands or the heaviness in my bones. They expect composure, strength, even grace in this precarious balancing act.

So I play my part. One foot, then the other. Smile for the crowd. Hide the weariness. The rope wobbles, but the performance must remain steady. The crowd applauds, but they never see the fatigue, the fear, the longing for solid ground.

Like a Flying Wallenda, I never auditioned for this life; I was born into it. With no other choice, I have mastered the theater of survival, the art of balance, and the silence of exhaustion hidden behind a smile. The rope stretches on, longer and farther than I ever imagined, and though there are days I ache to step down, still I walk. Because the show, it seems, must go on.

The show is my daily life. Over the years, I have learned that nobody likes a sad sack, and people can only tolerate one for so long. But in truth, I am not sad. That part is not an act. Sure, there are days when I do not feel well and must paste on a smile, but even then, I carry joy. I love the life I have built within the confines of my circumstances, and most days, even the hard ones, I am happy.

Still, the act causes confusion. Because I do not “look sick,” “act sick,” or often show the cracks in my armor, people struggle to reconcile the visible with the invisible. Now that I have added workouts as part of my healthcare, it baffles some even more, and I understand why. It is hard to grasp that while I can lift weights or walk a mile, I cannot work an eight-hour day. My tank does not hold that much fuel. Heart failure has diminished my capacity, so I must ration what I have. Doctors’ orders.

Every morning, I wake up and prioritize. At the very top, above all else, is my heart. Keeping it as strong as it can be is not a luxury, it’s an imperative. It is the rope itself. Without it, there is no performance. And I am not ready to say I want a new rope, so it must come first. Because of that I’ve had to drop other things, like 2.5 hours of my work day. I just don’t have the fuel to do it all, and trying makes me so sick that I can’t do any of it. 

I cannot help what others understand or do not. I refuse to wallow in self-pity or bend myself into the narrow mold of what a “sick person” should look like or act like. Even doctors have been baffled, studying test results that scream decline, then looking at me, upright and smiling, and wondering how someone who on paper must feel miserable is not a cranky, bitter mess. And if I am honest, there are some days that I am but that is nobody’s business but mine (and my therapists). I get to present myself to the world in whatever way I choose.  I choose a life of joy, fun, determination, and optimism, even if the world around me can’t make sense of it. So, one foot, then the other, I continue forward.

This is my act. This is my balance. This is my rope. And though the crowd may never fully understand, the show is not about them. It is about me, still walking, still smiling, still here.

I cannot help it if I am cute even when I am very, very sick.

I can’t help it if I am cute even when I am very, very sick.

The Week My Case Was (Supposed To Be) Presented a Second Time

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One week before I got the call that my case for heart transplant would be presented for the second time, I said goodbye to my beloved cat. The end came quickly for us. He was old, it is true, but he was also a complete mad man. That was until he woke up from a nap one afternoon and it seemed like he couldn’t use his back legs. Things only got worse from there. It seemed my sweet boy had a stroke.  I will spare you the details of the decline of my fabulous feline. He deserves to be remembered as the majestic beast he was, but it was easily the most heartbreaking week of my life. I understand now what they mean when they say “soul” pets. Gus was certainly mine. I have loved all of my pets, but there was just more with Gus. He was my friend and confidant. He was my nurse and companion through the biggest changes I have ever gone through mentally and physically. I have never met a cat with so much personality, and while we didn’t speak the same language, he always seemed to know when I needed a cuddle or laugh. I can’t see the future, but knowing what I know now, I think maybe he could at least feel it. You see, one of the biggest things I worried about with the possibility of transplant looming was my buddy Gussy. Gus was extremely bonded to me, and exclusively me. He tolerated other adults who would feed him but he was truly only nice to me. I worried about the amount of time that I would be away from him for transplant and recovery and more than that I worried about how to manage after transplant when it is recommended to not be near cats. I believe he took that worry away from me, and knew this next part of my journey I had to go alone. I will miss my Gussy, my Wussy, my baby, my wayby, Fatness Neverlean, Bubs, Bubbers, Chubs McGee, Auggie, Chonk-a-donk, Triple G, and all the other nonsense names I called him daily. 

The Monday before my heart transplant was presented for the second time I woke up with a blue tongue. If you do a cursory Google search for “blue tongue waking”, you will find that the internet believes that you may be suffering from a congenital heart defect (check), heart failure (check), asthma (check), perhaps acid reflux (also check), or the ingestion of a blue food dye. I could not remember eating anything blue, as I do my best to follow the rules and the third rule of CHD club is no blue food. (The first rule is don’t die, the second rule is no faking heart issues for any reason, even if you hate your PE class). Anyway, I didn’t eat any blue food, so mild panic set in. I took a photo and sent it to the team, not my medical team mind you, my home team, my family, it was 7 a.m. someone had to be awake. My sister must have done the same quick Google I did and concluded I had a congenital heart defect. Shocking. What is a girl to do but check her O2 (it was fine), and then try brushing her teeth. Sure enough, the blue started to come off. I swear I didn’t eat anything blue…but I did have Christmas Nerds, red and green Christmas Nerds, the night before and while they aren’t blue and thus not technically against the rules, it’s the only thing that I can think of that would have caused it. All this, before 8 a.m. on the Monday before my case was presented for a second time. 

On the Tuesday before my heart transplant case was presented for the second time, I said “see you later” to the therapist I have been working with for seven years. Like Birdie said in Hope Floats, “Beginnings are scary, endings are usually sad, but it’s the middle that counts the most. Try to remember that when you find yourself at a new beginning. Just give hope a chance to float up.”  Endings are sad, but notice she didn’t say “bad”. Nothing bad here. For the last seven years I have had the best therapist I likely will ever experience. She was who I needed, when I needed her. I showed up in her office broken and without a toolbox. I am leaving knowing who I am, how I roll, and with a toolbox brimming with ways to not only help myself but effectively help others without sacrificing myself (they’re called boundaries have you heard of them?).  I have grown so much as a person it is time for me to test the wings she helped me build. I hear what you’re thinking…now? Yes. Simple as that. It is time. Sometimes you find yourself at a fork in the road in the middle of a journey and you get to choose a new way forward. Our paths don’t go in the same direction anymore, but how cool is it to be able to look back and see just how far that path has taken you. You know me, you know I am like an adorable fungus you cannot get rid of, a see you later is not a good-bye. You’ve seen the photos of me with my childhood cardiologist, even professionals keep me around, just like you they want to see what comes next. I just as much cannot wait to see what is next for her, she has so many new things happening in her life and practice, she changed my life and I can’t wait to see how she changes others. 

Early in the morning, on the Wednesday before my heart transplant case was presented for the second time, I took a small box containing a tiger tipped vial to my local hospital lab. A sweet woman named Loli drew my blood so it could be sent to Nebraska for antibody testing. This is an important part of the heart transplant process, and a vital piece of matching me with a heart in the future. Loli was so sweet and must have been able to tell that I was nervous about this precious vial arriving in time for Friday. She kept telling me how she did this all the time and how they would process the blood and get it on it’s way. She asked if I had a transplant, and I explained I was hopefully getting one. “Kidney?” she asked. I get that a lot, I think it must be more common for a person my age to need a kidney than a heart. I told her it was a heart and that this was my second try. She told me that she knew she probably shouldn’t say this, but it is Christmas time and miracles happen at Christmas. She will pray for me to be listed. I thanked her, and she told me again that she would make sure that this got sent out quickly. Through this whole process I keep having encounters like this one, my family too. I don’t know what I believe about what happens when we die, but I will tell you this, I am shown almost every day that there are people looking out for me on the other side. 

Later that same morning (the day I am writing this), I got a message from my clinic letting me know that my case won’t be presented this week. Unfortunately, they wouldn’t have my antibody testing back in time to discuss my case. I was crushed. I can handle waiting for a heart, and the unknown of when it will happen. I can handle them saying it isn’t time again, they will know when it is time. What is killing me is being told I am going to be put up for consideration again, and being delayed time and again. They knew they would need this test. They knew how long it takes to get results. They knew where I lived. I was just there doing other tests for this presentation, and they didn’t do it then. They didn’t use overnight mail, they didn’t ask me to come back to do the test there. They just told me they were presenting me, and they were sending a kit to collect this blood. I called on Monday to express concern I didn’t have the kit yet and I was told that it would not be a problem, I could be presented without it and to let them know if I didn’t have it by Wednesday. I received it Tuesday night and went immediately to have it drawn in the morning. I triple checked that it would be sent that morning. To have done what they asked and then be told it wasn’t enough within hours of each other was soul crushing. It is my goal to do everything I am asked by my team. If they had told me I needed to come there for them to draw one vial of blood, I would have. We are talking about the literal rest of my life, we aren’t talking about an annual physical, or an ingrown toenail, we are talking about heart transplant, this is something you drop everything for. I understand WHY they need this test first, but I can understand and still be disappointed in the way things went. Trust can be shaken but not broken, so right now, my trust is a little shaken, but not broken. 

Now I don’t know when I will actually be presented. Next week being so close to Christmas seems unlikely, the next being the week of Christmas seems less likely. I have felt hopeful the last week, that this would be the time, and I would be listed. Things seemed to be working out. I hope they still will. Right now, I am just sad and angry. I am tired of being tired, and I am tired of waiting to know what comes next. 

You should know I am okay. I really am. I am nothing if not resilient, and my mom has come to be with me while I go through all the emotions. She was coming to be with me when I found out if I was listed and she came early when I was crushed to find out everything would be delayed. I am lucky that either way, when I need my people, they show up. This will get sorted out, and sometimes even the best people in the medical complex forget that there are real people and big emotions behind the test results. 

I share all this because this process is not linear, and because of what is on the line it is incredibly emotional. I share this because you are someone close to me and I want you to know what is on my mind when I seem like I am a little less cheery than usual. It is important to share this because, you might be going through something like this, you might know someone (me) who is or will be, it is important to know that it isn’t a plot against you or me when things don’t flow neatly from point A to B. If you are one of my people thank you for your support and love through this, I continue to be amazed and humbled by the amount of kindness and love I have been shown. If you are on your own journey, I wish you health and ease as you put one foot in front of the other.