Mending Broken Hearts
I suppose every mother is biased and thinks that her son is the handsomest boy who’s ever walked the face of the earth. But in my case, and I’m being totally objective here, my son is the handsomest boy who’s ever walked the face of the earth. What can I say—it’s just a fact. I imagine when he grows up, he’s going to leave a trail of girls swooning and pining away after him. A little heartbreaker—that would just fit perfectly, since he was born with a broken heart.
My son is 1 of 100 babies (that’s over 40,000 infants) born each year in the US with congenital heart defects (CHDs)—simply put, hearts and/or vessels that did not form properly in the womb. It is the most common type of birth defect and also the leading cause of death for children.[1,2] February, as we know, is the month for romance and sweethearts, but it is also the month for little broken and mended hearts. Officially, February 7 to 14 is Congenital Heart Defect Awareness Week.[2,3] So in the name of civic duty, and in honor of my son and all children like him and families like ours, this is what I wanted to write about. But is it an appropriate topic for a romance column? Well, keep reading.
It hasn’t been easy for me to share my CHD experience publicly. In fact, this is the first time I’d be sharing something this personal to the Interwebz because, first, I’m very private and would much rather knit a scarf (or a hat) out of my feelings than talk about them, and second, it’s only now that I’m finally in a good enough headspace to talk about it even though my son was born more than seven years ago. And that is what CHD is—it’s unrelenting. It’s the other shoe that always drops. It’s the bus that hits you out of nowhere.
There is no cure for CHD. It can be managed by medicine and surgically “fixed,” but people with CHDs will have to deal with its lifelong impacts and require lifelong specialized care.[1,3,4] It’s much like a broken mirror; it can be glued back together, but it’ll never be really quite fixed.
But we’re nothing but optimists, and CHD is something we do eventually learn to live with (quite well, in fact). Improvements in medical technology have allowed patients to kick CHD’s butt, drastically improving survival rates and quality of life. And although not all children with CHDs become Olympic gold medalists like Shaun White, the sky is still the limit for them, and many children with CHDs go on to have full, meaningful, wonderful, albeit maybe semi-normal, lives. Normal is so overrated anyway. Of course, there are still too many who lose their battles way too young.
In the CHD community, we call children with CHDs heart warriors. Because that’s what they are—freaking warriors. And their parents find themselves reluctantly thrust into warrior parent bootcamp so they can raise and support these Spartans. And it’s tough, like getting repeatedly kicked in the nuts…and I don’t even have nuts.
Before the age of 4, my son had had 5 major surgeries, 3 heart caths, and many other small procedures. As a young, first-time parent, I had to learn how to still and steel myself, so I could remain calm to keep my baby calm. So I could hold him (or hold him down) for the thousandth blood draw or X-ray or echo. So I could give him away time and time again to his surgeons, each time hoping they’d give him back to me. I had to learn to speak up—to be that “crazy mom” in Room 303 who didn’t want to get roomed with a kid with a hacking cough.
Besides normal new-baby joys and struggles, our days were also filled with doctor’s appointments, therapies, and Purell. Lots and lots of Purell. When we weren’t staycationing in the hospital, we were often holed up in our apartment preparing for surgery or recovering from surgery or just avoiding germs that would land us back in the hospital. I became the sniffles police. I washed my hands raw with Hibiclens.
I was tired, sleep-deprived, anxious, bitter, depressed, and isolated. As you can imagine, I was not a happy camper. There were days when I wanted to punch in the face the next person to say God doesn’t give us more than we can handle. And sometimes I did feel like I was literally losing it.
What got me out of it? Many things. God, undoubtedly. My patient and supportive husband. Our relatives and friends who refused to stay away. Our phenomenal team of healthcare providers. The awesome CHD community. My therapist, who made me cry on her sofa each time I saw her. All of these things got me through…and also reading romance novels.
Yep, good old romance novels. For a romance fan, it’s not hard to see how. Romance novels are all about love, courage, and hope—all positive stuff. They gave me an entertaining distraction, a welcome escape from real life, no matter how brief. The stories had guaranteed happy endings, which was what I wished for. Sometimes they were funny and made me laugh, which was what I needed to do. The heroines were clever and went after what they wanted, which was what I wanted to be. And often the characters were flawed and figuring stuff out, and so was I. Of course, the characters were always attractive in one way or another, which encouraged me to exercise, believe it or not (I took up running and yoga). And the love scenes…well, they helped me get my groove back, which I’m sure was good for my marriage. I guess you could say that my heart was broken, too, and romance novels helped mend it.
On one hand, CHDs are so awful, and I wish it never existed and we didn’t have to be aware of it. But it does and we do. On the other hand, people with CHDs are so awesome. It’s amazing how children like my son, with their tiny broken hearts can make yours feel so full. For more information on congenital heart defects and how you could help spread awareness, please follow the links below. Thanks for being #CHDAware (and for your endurance in making it this far) and have a happy heart month and a life full of romance!