My son, Steven, looks pretty typical. He loves Minecraft, Angry Birds and Roblox. He cannot wait for school to be over so he can focus on playing outside — swinging, running through the neighborhood with his friends and swimming. In so many ways, he is just like a typical 4th grader.

But Steven has a secret. He is not a typical kid. He was born with half a heart, a condition called Hypoplastic Left Heart Syndrome.

Almost 11 years ago he had a life-saving open-heart surgery at 2 days old. Two weeks later he had to have another open-heart surgery. And another when he was 5 months old, and yet another when he was 4 years old. And guess what? Chances are he will have another open-heart surgery in the next five years. During those first four years he had over 10 heart catheterizations, was on life support for five days, spent over 25 days in the Cardiac Intensive Care Unit and endless time on the main hospital floor. We have spent time dealing with medical post traumatic stress (PTSD), a case of strep throat that landed us in the hospital with septic arthritis, and endless blood draws and appointments to make sure his organs are tolerating all they have been through.

 

Those first few years were a blur.

Steven went over his “lifetime maximum” that our insurance allowed within months of his birth. So my husband and I were always searching for better jobs with better insurance, planning for the worst and hoping for the best. The stress was unbelievable, not only dealing with a medically fragile child, but wondering how we would financially be able to keep him alive. If we lost insurance due to exceeding our lifetime maximum, a had a job loss or any other reason, we would be put into the “high risk” pool. Sounds great, doesn’t it? It sounds as if this was a way to allow people with preexisting conditions to obtain health insurance.

It is not great.

High risk pools are about impossible to get into (they typically come with a wait list) and completely unreachable in cost for an average middle class American. When the Affordable Care Act (ACA) was passed, it was a relief to many families of kids with medical conditions. Steven was able to get treatments he needed without fighting the insurance companies. We no longer had to worry about what would happen when (yes, when, not if) Steven needed a heart transplant if our insurance would deny it as it would push us over the lifetime max. Life with a medically fragile child comes with so many other if’s, when’s and what’s. Basic medical insurance should not be one of them.

The House just took away basic protections for kids like my son, Steven. In one fell swoop they took away his chance of a full life. He was born with a preexisting condition. He will never be “cured” and he will never “outgrow” it. He will always require multiple cardiology visits a year as well as daily medications. He will without a doubt require future surgeries and hospital stays. But apparently to some, he is a burden to our society. He doesn’t deserve to live.

Baby in NICU

This is Steven 10 years ago. These are the people this vote is affecting. It’s affecting the ones who are most vulnerable and the ones who need us the most. It’s affecting the ones who are fighting a fight that no child should ever have to. We need basic protections to those literally fighting for their lives. We need to stand up for those without a voice.

We can do better America, I know we can.

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I hold the hair brush firmly as I pull it through your damp hair, the blow dryer singing its monotone chorus. You sit before me on the floor, long lean legs folded across each other, grinning excitedly while I try to tame your hair. It’s grown so much in three years.

I think about your hair while I’m working. I notice how it curls at the back, but remains straight in the front. I remember how, when you were first born, it was nearly black, but now it’s a soft honey color that reminds me of my own. It’s soft and fine and impossible to keep in a hair-tie — its lovely, just like you.

I think about how we managed to keep it intact despite the multiple hospital admissions where they had to place scalp IVs. I remember the nurse asking me if that was OK. I was dumbfounded — of course it’s OK. Wherever they can get an IV with as little trauma to your already traumatized body was fine by me. She sensed my confusion and quickly explained some parents don’t like scalp IV’s because they have to shave that area of the head. I had to think about that a little longer until it occurred to me she was asking me if I wanted to preserve your hair.

What a strange sensation that was. It was one of the first times it became clear to me that your father and I would forever be living a dichotomy as your parents. We would be balancing all the typical parental responsibilities and aspirations along with all the new requirements of having a child with only half a heart.

There are two sides to every scenario — how this (whatever this may be) will impact you mentally and how this will impact you physiologically. I think parents do that to some degree, but when the stakes are so high, every choice is filled with a measure of uncertainty that your father and I often discuss over and over. I find myself both thrilled and anxious about the things you will become passionate about. I love to see you grow, develop and learn; to find your voice and your dreams. At the same time, I think about how we’re going to help you navigate your health so you can aim as high as you’d like. I ask myself a hundred times what impact this could have and whether the emotional benefits outweigh the physical risks. Do I sign you up for swimming lessons? You love the water, but how will it impact your profusion and your breathing? Do we start preschool? You are so social and love to learn, but colds and flu are so much more prevalent. What do I say if you want to run track? What if you want to study abroad away from all your doctors?

Your father reminds me you are only 3 and just as you will grow, we will also grow and learn and become better at being your parents. Of course, right now the road seems riddled with missteps and barriers, but I have faith that clarity will come. I have faith that you will help guide us just as much as we will guide you, perhaps even more.

I disengage the dryer and give one final brush through your honey hair. You throw your arms around me, as is your custom when the hair drying part is complete. I hug you back and breathe in your clean, sweet scent. It may not always be obvious which way we should go, but together, we will forge our path — hand in hand — never alone.

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Nolan Chenevert is celebrating his third year as a dad to his son Barrett “Bear” and the Pediatric Congenital Heart Association would like to take a moment to share this open letter by Heart Dad Nolan Chenevert to his son.

Dear Barrett,

I remember so vividly how excited I was when your mom first told me I was going to be a dad. I also remember how excitedly terrified I was the first time I held you. You were now someone I had to take care of, care for and teach. (Thankfully, Mom is here to help!)

I was officially a dad, your dad! My heart was so full, and my mind was racing with all the possibilities your future held. After a very moving and exhausting day (especially for Mom!), things turned around quickly. You turned blue and were having trouble breathing, and they wanted to transfer you to another hospital. It was like I had just been repeatedly punched in the gut. I ran the three blocks to where they had taken you. I stopped in the hallway outside your room and froze. You were right there, but I couldn’t go in or talk to you. I couldn’t do anything for you. I’ve never felt such an incredible feeling of being so powerless.

The author next to his baby who is lying in a hospital bed

A team of nurses and doctors had your incubator surrounded, and when I was finally able to see you, I noticed all the tubes, wires and tape that now covered your body. I just sat there in that hallway, trying to convince myself this wasn’t real, that you were going to be just fine, that your mom and I were going to be taking you home soon. Your plane had finally arrived, and it was time for you to get on it, without me.

Two major heart surgeries, multiple procedures and dozens of doctor appointments later, you’re here doing exactly what I imagined you would be doing. Your first day of life gave me such a wide range of emotions that it might seem like the days since would be boring, but every day is its own wild ride. I get significantly less sleep than I ever imagined I would have, but I can’t wait for my first hug in the morning. I shake my head when you get into one thing after another, but I love the smile you get when you’re having so much fun. I get to pick up toy cars and dinosaurs just to get them thrown right back out again, but you are learning to help. All of the trade-offs are worth it; you are here.

Being a parent is a feeling that is unparalleled by anything else I’ve ever experienced. I feel the greatest pride when I tell everyone about you. Throughout my life, I have always looked forward to celebrating Father’s Day with my dad. We would always get together with your grandpa and spend the day trying to do things we thought he wanted to do to celebrate him. I have nothing but happy memories of Father’s Day, both as a son and grandson, but now as a dad. I’ve now had a few Father’s Day with you, and I’ve determined it isn’t just about being celebrated by others for being a dad. It is just another day to celebrate the fact that I get to be your dad.

I couldn’t be prouder to be your dad. I love you!

Dad

The author holding his son

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Congenital heart disease (CHD) does not know limits. Medical bills are horrendous and the toll it takes on the body is exhausting. Congenital heart disease is always there reminding me that I can never live without it; that I can never have a moment that is just mine. There is no magical fort I can hid in and be “normal” and I can never win a game of hide and seek against it. There are pills that suppress the symptoms and more medicine to suppress the side effects of the medicine that suppresses the symptom, but no pill to suppress CHD. People tend to ask or even assume that surgery cures this disease, but it doesn’t – it just makes it livable.

I can go on about how it never gets better, how life sucks with it and how I will never know what it’s like to be healthy, but that’s not productive. That mindset is what leads into the unrealistic thoughts of a parallel universe that just doesn’t exist, and leaves the taste of disappointment in the mouth of those that believe it. What I can do is forgive it. Forgive CHD for taking away any normalcy my life might run into, for never letting me go, for canceling on my friends, for ruining more semesters in college than not, and for making excuses on its account. I cannot forget it, but I can forgive it.

As it tries to stand my way, I invite it walk beside me. I can love it for making me who I am, I can thank it for making me care for others more than myself, and I can be blessed that it has not taken my life. I can hold onto CHD like a blanket from my childhood, where I find solace in knowing that it is always there, and that I will always fight for it. Because of CHD I have had many trials and have found myself close to death, but I have also had some of the best experiences of my life. Congenital heart disease has given me a family of brothers and sisters that are going through different battles, but fighting the same war as I am. It has given me summers of fun at a camp that was made for kids like me, it has let me advocate for it to thousands of people, and it has helped me find happiness in the darkness.

Yes, CHD sucks. It never goes away and I will always fall victim to its antics, but it has given me so much more than it has taken away from me.  This is the perspective I choose to take, the one that lets me forgive it for imposing on my life, and cherish it for what it is. I literally have nothing to compare it to because I haven’t lived in a parallel universe where it doesn’t exist, so I might as well take it for what it is. Life.

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My 12-year-old son just passed the six month anniversary of his fourth open-heart surgery (fifth surgery overall). Last week we took a road trip from Tampa, FL (where we live) to Cooperstown, NY where he played in a week long baseball tournament with his best friends. It was a once in a lifetime experience he talked about for years, but something that, quite frankly, I was worried might not be in the cards for my son.

I never told anyone — not my friends or family, and certainly not him — how worried I was his dream might be over. Like so many other  congenital heart disease (CHD) moms, my thoughts were consumed by questions, fear, worry and sadness.

You would think by now I would have known what to expect, but I should have known better. I’ve learned over time that each CHD child and each instance and experience is different. This time around — in some ways — was just as hard as his first surgery at just 13 hours old.

I see a lot of articles and blogs for parents about babies and toddlers going through the CHD experience and what that means. But no one really talks about what happens as time goes on for the kids who continue to need intervention.

This age is hard. You realize he’ll always love you, but it’s his friends that are starting to see him through. I didn’t realize how true this was until they saved him.

Unlike a young child, my son is educated on his history, he knew what the surgeries entailed, what the risks were. At 12, hormones and emotions now play a huge role. Watching his spirit break broke my heart. Depression. Hopelessness. No will to push. This isn’t my son, is it?

All we could do was encourage him. It took some time, but slowly we got our first smile. Then another. And eventually we went home.

But even then, it took more time. Going home just ushered in a new phase of insecurity for him. He had a new, bigger scar. He couldn’t play sports with his friends. I distinctly remember him saying to me, “I don’t think my friends are going to want to hang out with me anymore because I can’t do the things they want to do.”

Of course, this was not the case — in fact, it was the opposite. These boys — oh how I love these boys — lifted him up. They helped bring him back to us.

They called. They texted. They stopped by. They made him laugh. They changed the rules when he was around. But most of all, they never left him behind.

Having just returned from this once in a lifetime experience, I can tell you the first time he took the mound to pitch, I definitely shed some tears. They won together and lost together. But he was there with his baseball brothers, his best friends. It’s something they’ll never forget. They took in each and every moment not just as teammates but as best friends, the ones who never left him behind.

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Editor’s note: This story has been published with permission from the author’s son.


I want to talk about something that is almost taboo, especially if you already have a preexisting illness – and that’s mental illness. It can be hard to admit it might not just be a “bad day,” especially when you have a bad week and you can’t get out of bed. It can be hard to accept that maybe it’s not your physical ailment keeping you down, maybe it’s not that medicine you’re on, maybe it’s more. The biggest problem I’ve come to realize in my own journey is it’s hard to accept I not only have congenital heart disease and numerous medical issues, but the way I view myself and the world around me isn’t “right.” The hardest step for me was to ask for help from a professional, because I didn’t want to admit there was something else wrong with me.

woman standing on a balcony watching the sunrise

Everyone has their own demons and sometimes one person’s demons are a little too big for them to fight on their own. I realized something was wrong when making a simple decision felt like a life or death situation. Having anxiety is knowing the problem isn’t that bad, but no matter what I do or how much I breathe and calm myself down, I can’t let go, I can’t get ahold of the situation and I can’t deal with it.

Everyday tasks seemed to break me down, because every decision I made felt like there was a tremendous consequence I couldn’t avoid. Now let’s add having already existing medical issues that forced me to make decisions, and most times I couldn’t take those back. The anxiety of knowing the well-being I held onto could crumble down with one wrong decision about even a simple task makes it nearly impossible to close my mind off, yet I think ,“If I just stay where I am, I don’t have to make any decisions and the world will still go on without me getting out of bed.” My anxiety had become comfort food to my depression.

 

I started seeing a specialist and I’m working on putting my demons to sleep. I’m working on being the best me I can be in any situation that is thrown my way. I wanted to write this so others know that even though it hurts, and you may think you’re the only one going through this, you’re not. We might all have our own demons and our own way of dealing with stress due to the outcomes of our lives, but you are not alone and there isn’t something “wrong” with you. It may feel hard to burden others who work so diligently on getting our physical health by telling them you’re breaking down on the inside too, but it’s so important they know.

Through my journey, I’ve learned that my mental health plays a big role in the way my body feels, acts and reacts to stress, and how having a rein on it is helping keep my heart healthy(ish).

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