It's Heart Month - Some Sobering Truth

February is Heart Month and you'll probably see posts about it. It's important, but marketing and awareness is typically light touch. Marketers want you to know that Congenital Heart Disease (CHD) is a thing, but what is it really? What is CHD all about? For many families it is a horrible memory of a baby in the hospital before their real lives began. For the hardest hit is is about the greatest loss a parent will ever know. This is what congenital heart disease is about to me, right now, this Heart Month 2022. It's not always been like this for me. I used to be the loudest and proudest with the biggest megaphone, but this is where I am right now.

This heart month starts with Heart Month 2003, nineteen years ago. I was planning my maternity leave, not knowing if I would go back to work as a new mom or a bereft mom. That's not drama, it's trauma. . . deep, abiding trauma that you cannot just "shake off."

This heart month is anchored with Heart Month 2005. Seventeen years ago tomorrow, we went to Denver to submit our son to his third major open heart surgery, he wasn't even two years old. He was dying. My son was literally dying, again. His oxygen saturation was in the sixties, his heart was strained, his pulmonary arteries were too small to sustain the surgery he needed to live, drastic measures were required, and he had a hybrid "extra" surgery.

Like his previous open-heart surgeries, again my toddler needed surgery urgently. Pediatric cardiologists avoid scheduling open heart surgeries during flu season. Like baseball, children's heart surgeries have a season. Luckily for us he was born at the beginning of that season and had his second surgery before it was over. Unfortunately for us, he wouldn't have made it to the next season if we didn't act in February.

This is not dramatic, it was traumatic. I had to take what vacation I had, we were not longer allowed to accrue vacation, not that I had much to accrue since I spent all of my first five years of motherhood using my PTO in the Children's Hospital, if not for surgeries, for cardiology, orthopedic, etc. appointments.

I'm not complaining, I'm asserting. I assert that if you have a child who is both critically and chronically ill, you will not have vacations or escapes often, if at all. I assert "regular life" is so precious that even if you had the time and money, you're not in a huge hurry to escape what you fought tooth and nail to get. I assert that even when you "get away" you're still trapped in your own trauma. I assert that the aftermath of what I call "benevolent violence," includes a heavy smoke that blocks out the peacefulness you hope to find on the other side. I assert there is so much more to be aware of than only the anatomical aspects of CHD . . . so many dark dimensions that are not present in the light touch.

Those first thirteen or fourteen (I can't believe I've lost count) surgeries are in the past, yes. However, with luck more surgeries are in the future. Lucky, because surgeries are the price of hope. If there is no hope, then there will be no surgeries. Ff there are no more surgeries it's because there's no more hope. It's a dastardly paradox. My only son's last surgery will be his last surgery ever. It will be a harbinger of his end. This is a state that only ends with a finality to be dreaded. This is how it is when your child is born with only half a heart.

I'm not fatalistic. I am realistic. I am not hopeless. I am hopeful - because we are still here. I am hopeful because my son has disability coverage now, so I don't have to worry about him falling out of care. I have hope because science has raced and leapt so far in nineteen years. I have good reason to hope, but my hope is personal not professional. My hope is a series of harnesses that hold me firm as we walk a tightrope.

Nineteen years ago, I worried my unborn child would not survive long enough to start kindergarten. Nine months ago he graduated from high school. Today I edited the first chapter of his first book (he's already started the sequel). It's over 100,000 words. It's good. He's a talented writer. Tomorrow he'll be logging into his classes for his second semester of college online. We have come so far, and each heart month I see social media posts from families like mine. Personally, I haven't posted much in the last few years about this topic. Maybe it's because I am trying to heal from the traumas that are not dramas. Maybe it is because my son is 18, almost 19, now. Probably it's because I'm finally learning how to take care of myself. I've not had much time for my own wellbeing during my motherhood.

My parenthood has been all about keeping my kids safe and keeping my son alive. This has been especially true and especially difficult during the COVID-19 pandemic. I hardly leave my house because this disease. Even if it becomes as mild as the flu, the flu is still more lethal to my child with his compromised cardiovascular system than it is to most people. It's hard to see people say they're "done" with the pandemic when the pandemic is not done with us.

I have balanced this heart-mom part of my life for the better part of twenty years against a career in technology, my own higher education, writing, and charity work. Being a heart mom to my Heart Warrior has been a huge part of my life, but I've spent the other eleven months of every year keeping our lives balanced. It's a slippery slope, and I try hard to avoid making everything about this one thing. Still, it's there, and it's not going anywhere, thank goodness.

I'm not ambivalent about my son's condition, the struggle, the battles we have fought. I know exactly where I stand on these topics - accepting. What has changed the most for me since my son is older is that I don't need the validation or recognition I needed when we were surviving in real time. I felt utterly alone in the earlier days of the Internet, and I affected a huge amount of change. I was another kind of Heart Warrior, but that fight almost broke me because I gave more than I had to give.

So, I broke myself with the high of advocacy, embracing a role that cut me to the core each time someone ignored me or was fatigued by my reality. I grew quiet and still. I remain still, maybe because I know we can be called up at any moment to resume the fight for my son's life. Probably it's because I know it's only over when it's really over, and I'm in no hurry for his story to end. Now, between battles, I am happy to play the other roles of my life.

My child fought so hard to survive and he deserves a regular life, and so do I. So this heart month, do celebrate the kids who are fighting and thriving, and do honor those we've lost. Then for the rest of the year be grateful if you "cannot even imagine" what strength is required to survive such a story, much less to tell it true. If you know it all too well, cheers my friends, we are in it together. Keep your hopes and your chins high this Heart Month.