Soon You Won’t Be Needing Us Anymore

This is what Charlie’s cardiologist told us on Thursday, and they are the seven most beautiful words I have ever heard.

            Charlie’s rhabdomyomas have shrunken “remarkably.” The ones that were causing his arrhythmias are barely even visible anymore.
            This is common. In fact, these are the only TSC lesions known to regress over time. We knew it was likely this would happen with Charlie’s heart, too. But we didn’t know exactly when. And we didn’t know, once they did, whether there would be any lingering electrophysiological issues. We didn’t know. But we hoped. Because in the land of TS, good news is hard to come by. And though I truly love our cardiologists, the thought of never seeing them again makes me very, very happy. And even though there are a thousand other things I need to report on (like our recent relocation, Charlie’s therapies, Charlie's hair cut, etc., etc.), I’m taking a moment to relax and savor this moment and share it with the ones we love.
             I remember listening with a stethoscope when Charlie was three days old, trying to “learn” his rhythm, that weird little beat he marched to when he was very small. Boom ba. Boom ba boom ba. I remember standing by helplessly as doctors injected him with adenosine to break his SVT. I remember banging my head against the wall more than once when he refused to take his medicine. And still, whether he wanted to or not, he has taken his heart medications more than 2,000 times. Like a champ. That is the kind of kid we have.
             We are lucky. It is hard to remember that sometimes, because even though we may be able to put our cardiology blues behind us soon enough, we’re struggling more than ever with Charlie’s epilepsy and how it's affecting his development.
             But the heart is part magic, isn’t it? The heart is capable of things the rest of body is not. The heart is what keeps us going, like Charlie’s heart has kept us going, even when we’re not exactly sure where it is we’re supposed to go. Ba boom. Ba boom. Ba boom.

You Can Take the Boy out of Kansas City . . .

Here’s some unlikely advice: if you ever doubt how much you are loved, leave a place. Suddenly, you’ll discover all sorts of things about the people you thought you knew. You’ll wish you spent more time with them. You’ll wish you’d known in advance what would be the most important things to do and to say, and then done and said those things a lot earlier. You’ll wish there was just a little more time. And then, suddenly, you’ll wish you weren’t leaving at all.

When I was pregnant, we laughed that one day we’d get to explain to Chuck that he was born in Kansas. We might even get to break out a map and show him where that is exactly. And after we got over how funny it felt at first to begin our family here in the heartland, we’d feel something else. Something like pride. Something like having done something good, somewhere good. Something that becomes a part of who you are forever.

So, if you ever doubt how much you love a place, leave it. And suddenly your days are filled with some of the hardest things we ever have to do. We have to say goodbye.

We’ve said goodbye to friends. We’ve said goodbye to co-workers. We’ve said goodbye to those special few who are both. We’ve said goodbye to Charlie’s entourage—teachers, therapists, doctors, nurses, caregivers, friends. I remember leaving the NICU with him when he was twenty-three days old, and felt the sort of thing I felt then, but different. That we’ve been through some wonderful, terrifying things together. That we’ve seen each other at our worst and our best. That we’ve been here together all this time. And then, suddenly, that we have to go.

This time things feel a lot less uncertain. We’re going to be nearer to our family, who know us like no one else. We’re going to be nearer to Charlie’s specialists, who know TS like no one else. This means we have to say goodbye. But we don’t have to say goodbye forever. Morgan and I have already said hello and goodbye to a whole handful of places. And here’s one thing we’ve learned: You may leave a lot of places in your lifetime. But they never leave you.

And I hope Charlie comes back here someday soon, and also someday when he is older, and feels something familiar. Like he belongs. Like he has been here before, and he has been loved.