Thanks

Every year at my parents' house, my family plays a thanks-giving game. Each person writes what he or she is thankful for. Then every one takes a turn reading them and guessing who is thankful for what, or whom. We have spent the past couple of Thanksgivings here in our home in Kansas City, and it has been lovely. It is a day we are able to set aside to . . . well, to not do much really, except enjoy each other without our everyday distractions. And that is our tradition. But I usually set aside a moment or two to reflect on the things I’ve become thankful for through the year. And since this year was a big one, I thought I’d try to get them all in writing.

        I’m thankful for the heroics that kept my baby alive.

        I’m thankful that he is not stingy with his smile.

        I’m thankful for a simple sense of humor, like for fart jokes, and when someone falls down, and that Conan is back on TV.

        I’m thankful for new friends who know what it is like to have been through what we have been through.

        I’m thankful for old friends who know what we were like twenty years ago, or five, or yesterday.

        I’m thankful for siblings I want to protect, and brag about, and hug.

        I’m thankful for our parents’ love. Now I know how fast and deep and vigilant it really is.

        I’m thankful to have made some of the mistakes I’ve made.

        I’m thankful to have my job back after six months away.

        I’m thankful for the kindness of the people who care for my baby.

        I’m thankful that my husband is the kind of man I’d like my son to be.

        I’m thankful that for every moment life is hard there are at least a hundred that it is easy.

        I’m thankful. I’m thankful. I’m thankful. Those are my three things.

 

A Very Merry Half Birthday

A mother counts things.
        The ounces they’ve drank. The inches they’ve grown. Wet diapers. Smelly diapers. How many diapers you have left until you have to buy more diapers. The breaths they take. The minutes until you see them again at the end of the day. The seconds between cries in the night. The hours they’ve been sleeping. The hours they’ve been awake. The hours they’ve been here.
        We’re at 4,536. And counting.

        That’s 189 days. 27 weeks. 6 months, give or take, of Charlie. One half of one year that my boy’s been bouncing around in the world.
        And I can’t believe what an exciting life he has had already. Or that there was ever a life without him. I can’t believe how much there is to count. I can't believe how much we’ve come to count on one another.

Num Num Num Num Num

Most of the baby books I've read say kids can start eating solid foods at anywhere from four to six months old. So now that ol' man Charlie's hit the four-month mark, I thought we'd give this a try with a nice, fresh, organic avocado.
        It went OK. But he appears to have been in that I-DON'T-KNOW-WHETHER-I'M-MORE-HUNGRY-OR-MORE-TIRED state of being (join the club), which isn't prime feeding time, apparently. But it sure is funny.
        Incidentally, he was not this sleepy when we started this process, which means tired beat hungry in the end.
        Oh well.
        (And yes, that is our cat on the dining room table. And yes, I know that's gross.)

Climb Every Mountain

I’ve heard some people say TSC is a “minefield.” Others say “it takes a village.” I’m not ready to dress it in a metaphor just yet. The only thing I can say so far is much less elegant.
        It’s hard. It’s really, really hard.
        We were hoping we might have gotten some resolution with Charlie’s cardiac issues before the neurological ones kicked in. No such luck. So we’ve been waiting a few weeks for a brand new medicine to do its magic. No such luck there, either. So today we add another one and wait some more. Next week, we go back to Boston.
        And since I actually can’t resist a good metaphor, I guess I’d agree with those who’ve told me TSC is a journey. It has definitely been a journey for us so far. And we are climbing every mountain. It would have been nice to get to the bottom of one before we had to scale another, but whaddayagonnado? You’re gonna keep on keepin’ on.
        Meanwhile, Charlie keeps on being Charlie. He just weighed in at the 90% percentile for kids his age. He’s starting to reach for toys and shake rattles. He continues to grab at my hair and glasses. And if you do something really, really stupid, he will laugh at you.
        There’s all of that. And there’s more. Here are a few favorites.

Charlie Swims

Charlie Practices Defense Against the Dark Arts

Charlie Shops at Wal-Mart

Charlie Goes to the Drive-In

Charlie Puts His Foot in His Mouth

And last but not least, Charlie visits Sesame Street, which is love at first sight . . . brought to you by the letter P.

Chico and the Monkey

Oh, what a week we've had. I'll be sure to post some more as soon as I can wrap some words around it.
        Meanwhile, you'll be glad to know Charlie's found someone he can talk to. Really talk to.

And as if That Weren't Enough . . .

In this video, Dad tries to teach him raspberries. And if you look closely, it almost looks like he is humoring us. Which (trust me on this one) is a very advanced social skill.

Rollin' Rollin' Rollin'

So much for tummy time.

Totally Tubular

Three days after birth, Charlie was diagnosed with tuberous sclerosis, or tubular sclerosis, as our first neonatologist called it. (Thank God for Google’s “Did you mean?” function or we’d still be scratching our heads.)
        On the list of diseases I would rather my child not have, this one would be near the top. It’s been known to mess with virtually every major organ system. Its prognosis can be horrifying/terrifying/devastating/you name it. And (see Paragraph 1) no one seems to know very much about what it is, what it does, and what the hell to do about it.
        Then we found someone who does.
        Don’t get me wrong—the Internet is my favorite invention. But it is a junkyard of bad information. And it does not compare to a real, live, human being who happens to know her shit. And who happens to agree that Charlie is the boy genius we think he is. And who also happens to think that with proper medical and developmental attention, he is going to be just fine.
        Yes, we are in for a ride. Some days it may be bumpy. Some days it may scare the bejesus out of us. But we are all buckled up. We know where we want to go. We just may have to take the road less traveled by. And if anyone knows how much all-the-difference that can make, it's Morgan and me.
        The way I see it, and the way our doctor encourages us to see it, is that it's our job to raise a kid full of personality, joy, and wonder. And that particular job will require us to shoo at a few medical annoyances from time to time. But we’ll get really good at it. Like catching flies with chopsticks.
        Long story short: Charlie has TS. But (pardon the cliché) it does not have him.
        He belongs to us.

Firsts

I missed my son’s first hours. His first cries. His first glimpses at the world. He held my husband’s finger, he had his first bath, he dirtied his first diaper . . . and I missed it.
        I try very hard not to take his firsts for granted. And there have been a whole lot of firsts to enjoy.
        Since those first difficult days, Charlie slept his first night in his cradle. He outgrew his first baby clothes. He sat at his first bar. His pigged out at his first barbeque. He rolled over from front to back. He touched his hands together. He flew in his first airplane. He stayed in his first hotel. He kissed his friends and family hello for the very first time.
        And somewhere in between, he smiled.
        And he smiled.
        And he smiled.
        So here’s to firsts. And seconds. And thirds.

Where to Start?

At the very beginning, as the saying goes. And what a beginning it was. 
        Nothing went as we had planned.
        Essentially, it came down to this: Charlie was so eager to get here, his heart was racing. One emergency C-section, seven episodes of supraventricular tachychardia, and twenty-three days of intensive care later, we brought him home.
        And still our plans keep playing tricks on us.

        We had never planned on loving him this much. This hard. This baby. This little beating heart. This little Charles. Charlie. Chuck. Chuckles. Spitz. Fitz. Mr. Spitz. Spitz ’n‘ Fitz. Nut. Nutter. Ginger. Red. Fox. Foxy. Mr. Fox. Mr. Excitement. Mr. Incredible. Mr. Man. And Chico, who his dad hoped would be born on Cinco de Mayo.

        Some things come close enough. And some things you simply cannot plan for.