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.

Hans and Franz . . . and Chico

Every time I post I vow to post again very soon. Because so much happens here in such a short time. Which is why we have a whole bunch of stuff to post right now. In fact, September may officially be the most exciting month ever. Here’s a couple reasons why:

1. Charlie got pumped. That is, he started a high-dose steroid treatment. We’ve managed to decrease his seizures with various medications quite a bit over the past year, but have not been able to “nail” them. (Note: this is the scientific term his neurologist uses.) The steroids are a pretty standard treatment but have been somewhat of a last resort for us, since kids can have all sorts of gnarly side effects, including some scary cardiac stuff. But it was time. We took the plunge. And though we don’t usually support performance-enhancing drugs, we’re all for this one. Chuck is back to his fighting weight. Unfortunately, he’s still having some blinky seizures. (Note: this is not the scientific term his neurologist uses.). But we haven’t seen any infantile spasms for a few weeks, and those are the ones we really need to nail. As with most things TSC, we can't be sure what will happen long-term, but we feel like we've won this round. Which feels really good. (Note: muscles in photo are for demonstration purposes only.)

2. Charlie got a nanny. One of the gnarly side effects of the steroids is a suppressed immune system, so we’ve had to take a couple of precautions. The most difficult has been keeping him out of day care. But I can’t really afford to keep myself out of work, so Charlie’s aunt has come to take care of him and we’ve got our very own Maurie Poppins. Here's a photo of her sharing some yogurt with Master Charles. (Note: Master Charles is a mooch.)

3. Charlie got game. For one glorious weekend, Charlie had TWO aunts in the house. Plus one soon-to-be uncle. He even got to watch the Georgia game . . . but they lost. (Note: never let Black-Luck Chuck wear your team’s jersey.)

4. Charlie got a splinter. Dad wanted to dig around for it but his doctor thought we ought to wait it out. So, Charlie also got an infection. Then Charlie got some antibiotics. And I got to bandage up a wiggly jiggly, teeny tiny toddler finger a couple of times each day.

5. Charlie got pooped. That’s right, he fulfilled every parent’s nightmare: having to call the pediatrician (again) and ask what to do when your kid eats poop. This time (and I hope it’s only this time) it happened to be cat poop. And it was more like he *chewed* it than *ate* it, since we seemed to get most of it out in time. But how did I let this happen, you wonder? I turned my back on him. For a second. A whole second. Now that I mention it, it was probably a lot like how he got that splinter.

6. Charlie got the hang of a few new things. Like how to eat with a spoon, how to sit on a little chair without falling off, how to make the See ’n’ Say work all by himself, how to make a phone call, and how to open the refrigerator. We’re really thrilled about most of these. (Note: our home phone is often off the hook, in case you’re thinking of calling.)

7. Charlie got GOING. He’d been taking a few steps here and there for about a month now, and he’s finally decided to walk. It’s hobbly-wobbly as heck. And it’s thrilling. He decides that he wants something and he goes and gets it. It’s simple. But it’s magic. The kind of magic you just can’t believe unless you see it with your very own eyes . . .

So now our days are filled, literally, with a hundred little ups and downs. I told you it’s been exciting.

One Love

Those of you who know us know that we wouldn’t be us if we weren’t a couple of months behind. And a couple of months ago, Charlie turned one.

So I started putting this slideshow together. I dug up all our old pictures and videos. I re-read some cards and letters. I re-lived the roller coaster rides that were his very first days. I laughed a lot. I cried a little. A whole year! A whole year that he has been ours! I thought about how I could possibly explain what that feels like.

So I finished putting the slideshow together. And I watched it about a hundred times. Charlie watched it with me. We laughed a lot. We cried a little. We could not get enough of him. And I thought: This. This is what it feels like. 

Life's Not a Marathon, It’s a Sprint

The best thing about having a blog is that you can share news, updates, and what’s been going on in your corner of the world with anyone who wants to know. The worst thing about having a blog is that you have to keep sharing news, updates, and what’s been going on your corner of the world, no matter how busy your corner of the world may be. So, I’m sorry. I resolve to be better. I don’t want Charlie to look back on Chico and the Fam years from now and wonder what the hell happened after November 2010. ‘Cause a lot happened. Here are some highlights.

            We went to our parents’ for Christmas, and Charlie (and everyone else within a fifty-mile radius) got sick, sick, sick. (Sorry, New York.) He decided food didn’t taste good anymore, so it was strawberry Pedialyte or nothing, and only out of teeny tiny little cups. 

 

That totally blew his diet, but we got back on track about two weeks and five doctors’ visits later. That didn’t stop Chuck the Nut from getting four Christmasses and about four thousand presents. For those of you we were not able to thank in person due to all the cussin' snow, please accept our belated but heartfelt thank yous now. Please also accept our heartfelt you’re welcomes for not infecting you with our Christmas Plague.

            We hit a bit of a rough patch in January when seizures seemed to go away for a while, then come back, then go away, then come back. The trouble with epilepsy is that treatments are often a trial-and-error sort of thing, which means you never really know what in the world is going to happen next. Given that we’d already tried many of the front-line medications and also the ketogenic diet, we decided it might be time to start thinking about neurosurgery. This was a much more difficult thing to wrap our brains around than I can even begin to explain. But somehow, we got there. And we scheduled a preliminary evaluation at Charlie's favorite hospital, where, alas, he got sick (again) and couldn’t be put under for all the associated procedures, so we didn’t really get anywhere at all. But we did get to see family and friends while we were in town. And we even got to stay a little bit later on account of all the snow (again).

            So we may go further down the surgery path at some point in the near or distant future, but for now we believe his development is too good and his seizures are too infrequent to suffer all the risks. So we did the only other thing we could think of. We reduced his meds. Sounds counterintuitive, I know, but we just had a feeling. So we acted on it, and we liked what we saw.
            Now we’re even reducing his diet (i.e., less fats and more carbs and proteins), and we’re liking that, too. He’s gaining weight (in a good way) and seems to have lots more energy and is working really hard on crawling—though he just learned how to go from crawling to sitting, which he is VERY proud of, and seems to want to do a A LOT. We’ll re-enroll him in Crawing 101 sometime soon, but right now we’re taking a little spring break, if you will, and enjoying just sitting around . . . then getting back up . . . then sitting around some more. 

            Frankly, I’d just as soon work on walking. Or skip straight to running. For president. (Yes, I have great expectations. But I am his mother, aren't I?)

            Here's what else is new:

            Five teeth.

            Something that kinda-sorta looks like waving goodbye.

            A few almost-English-sounding words and phrases.

            Oh, and a budding aptitude for the arts, including recent dabbling in classical piano, bongo drumming, and Russian folk dancing. I hope you enjoy this as much as we did.