Matters of the Heart

Chris has been out of town for work this week so the conversation around here has been, well, little to none in terms of the real back and forth meaningful type. It was more like this: "Louie, do you want milk?" I ask. "Eeeeeeeeee!" he responds. Ace shrieks in the background. Or there's me trying to be the language modeler "Let's get undressed. Bath time. Shoes, OFF! Socks, OFF! Shirt, OFF! Pants, OFF! Diaper, OFF! Ok, now what do you want?" "Eeeeeeeee!" he responds again. "You you want in! You want INNNNNNNN the tub!" I shout back and plop him INNNNNNN the bath. By the third day I'm so sick of hearing myself that I give in to the if-you-can't-beat-them-join-them type of thinking and my communication dissolves into grunting, babbling, shrieking and crying.

I've also spent the week trying to figure out everything around Louie's ear tube surgery originally scheduled for Monday of next week. It has been documented that there can be complications in kids with Williams syndrome and anesthesia, specifically those with heart issues. When the anesthesia nurse called yesterday, I told her about Williams syndrome and the WS website "for doctors" section which discusses the risks and recommendations. We hung up with the plan that she would give the information to the anesthesiologist and call me back. When she called back today she told me that Louie's cardiologist would not sign off for the surgery until he had an echo cardiogram since he hasn't had one in the past year. So now we're trying to schedule the echo.

I'm glad we are taking this precaution. But of course I'm somewhat shaken. I have already been preparing myself for the echo he is scheduled to have in October of this year; I have almost talked myself into looking forward to it since it could be the one that puts Louie in the clear, as far as heart problems go. If he hasn't developed any issues by then, it is doubtful he will. And I guess the echo we have in the coming weeks could tell us the same wonderful news. But I haven't been preparing for this one. It came seemingly out of nowhere and smacked me in the face with the weight of an incomprehensible world where babies have heart surgeries.

Louie's first and only echo took place a few days following the diagnosis. I knew little about what I was facing, what to expect, what Williams syndrome even was. I took Louie from appointment to appointment to check his heart, kidneys, blood pressure, eyes, ears, all in a daze of confusion, electrifying shock and a strange and unfamiliar relief (to finally have a diagnosis). I didn't know how high the statistic was for heart problems. I didn't even know to be afraid.

The heart scares me sometimes, I suppose because I don't completely understand it; I can't get my mind around the sheer beauty and science and how it all comes together and works to sustain life. There have been times when resting my head on Chris' chest and I hear those rhythmic contractions, ba boom, ba boom, ba boom...I decide I can't listen anymore, the thought becomes too big, the sound too fragile. Like when you're little and trying to understand the concept of forever, and ever and ever and ever and ever...it makes you dizzy.

This involuntary muscle that pounds our blood in and out of all the places its supposed to be is also the place we think love comes from; though in reality we all know the heart really has nothing to do with the emotion, the feeling, of love. Love is concocted in our brain. But the heart is much prettier, a much more poetic organ, a much nicer place for love to live. So we conclude, Heart = Love. And I conclude: Love = Heart. Heart = Louie. Louie = Love. Be well, my love, my Louie, my heart.

I'm so relieved Chris is home. For many reasons. Tonight the house is still but the winds are strong. The boys are sleeping hard. It's late and we're about to go to bed. I hear the clocks ticking, a dog barking a few streets over and the occasional creak of the house settling into night. And while I can't hear them, I know there are four hearts under this roof drumming out a beat of love. Ba boom. Ba boom. Ba boom. Goodnight. A good night, indeed.