Sometimes I wonder what Celia would’ve looked like as she aged. Would her hair have maintained its cursive-like curls, her lips preserved their pillowy Jolie likeness? She’ll never develop wrinkles or gray hair. But her disease hasn’t rendered her in shades of black and white; she’s still just as vibrant as ever in this world full of color. In fact, when I focus on her, it’s the things around her that become dull and blurry.
I do like to swim. Andy even awarded me the title of the “fastest Betz in water.” I was really fast, when I was fourteen. But those were twenty-five meter races. I barely had to pause to breathe, the distance was so short. And now, I do lazy laps at the in-laws' pool, if I’m feeling energetic.
And, I do not ride a bike. Once, during high school, Andy’s family took me with them to Snowshoe, during the off season. We rented bikes (meaning they paid for me to borrow a bike) and started off along a trail. Except the trail was made of boulders, in my book. And I couldn’t do it. I didn’t like it. Growing up on the farm, I used four-wheelers and golf carts to get around, and I wasn’t a seasoned bike-rider. So while the rest of the Betz family rode on, I quit and went back to where we started (it was still within view because I didn't ride very far because, like I’ve indicated, I am not a bike rider). Instead, I spent the day in the creek. As I've mentioned, I do like the water.
All this to say, I couldn’t do what Mandy is doing. I couldn’t run or swim or bike one mile, let alone one hundred forty. In one day! I couldn't do it. But she can. And she will, in one month, do it for Celia. And we will be forever grateful.
Celia's pictured here in one of several positioners we brought home, on loan, from the medical equipment store. Once we've determined what makes her most comfortable, we'll be able to make a purchase using money Mandy has raised for Celia. Money many of you, our blog readers, have generously shared. Again, we will be forever grateful.
Although occasionally we lose sight of the simple, joyful things, in general the four of us are fairly proficient cupcakers. Sometimes, none of us gets dressed till well after noon. We spend time together on blankets on the floor, babies, parents, dog, playing with toys and with each other. We stroll to the library, or to the local ice cream shop, once we've gotten dressed, of course. We nap together in the backyard hammock. We sing along, uninhibited, to the radio, or make up songs of our own. We sip sweet sun tea, steeped on the back deck, and fill the mantle and the windowsills with flowers dunked in mason jars and old soda bottles.
In fact, now that I think about it, perusing People Magazine might even qualify as cupcaking, too.
How do you cupcake?
Obviously, the blog will feature Celia. She’s one epic baby. She’s nothing short of sunshine. She's pure goodness, crystallized. She, in my opinion, deserves to be chronicled in song and legend for centuries to come. Perhaps this blog will suffice.
I know I don't need to explain myself, but it feels good to do just that. We still use pictures of Celia in the header, and the title usually shows her name. It's not that we're neglecting Tucker, that his story is any less significant than hers. It's just that hers will likely end sooner, that we won't get to share pictures of her for years to come. At some point, sadly, we'll run out.
So, if the blog seems Celia-heavy, if we're not doing a good job balancing photos and quips of both kids, that's fine. For now, it's still her show. She is epic, and we want to chronicle everything we can, while we still have the chance...
His inability to hold a decent phone conversation for more than a minute and the way he puts my glass in the dishwasher before I’ve had two sips to drink may drive me up the wall, but so many other things more than make up for these minor shortfalls. On some kind of stealth mission, he snuck in a back door and quietly entered my heart. I’d been guarding it. I slammed the door in his face countless times when he was courting my mom. He didn’t seem to mind. I ruined (inadvertently, I swear) his microwave with fingernail polish remover shortly after we moved into his house. He edged nearer with fast forgiveness. He took me to Broadway and bought me a stereo, and showtunes to play on it. He crept closer with generosity. And now that he holds a place there, it’s his forever.
My dad, and step-dad, aren’t the only men in my life any more, but they sure rank up there as two of my favorites.
I read an interesting analogy recently: As a child might ask why he has to eat his vegetables, adults sometimes wonder why they have to go through certain things. Just like vegetables help bodies grow strong, so too, the analogy implied, should our experiences…
Is that what we’re doing, what this is all about, building strength? Really, we have strengthened some muscles – physically, emotionally, spiritually. But it’s hard to understand, hard to accept as something necessary. There are other families who have faced similar challenges, role models for us, our Popeyes. And people tell us all the time things like "God doesn't give you more than you can handle" and implore us to recognize that there's something to learn from all this, that we'll be stronger because of it. True, maybe. But maybe we've had our fill of vegetables, maybe we feel like the local CSA has delivered way more than we can ever manage to eat.
Someone else once said experience is what you get when you don’t get what you wanted. Like the three lone brussel sprouts left on your plate. We didn't want Batten Disease. But we do want Celia. We'd pick her every time. She is, unmistakably, the cream of the crop.
boy, noun - a noise with dirt on it
I am a confessed clean freak. Seriously. We don't wear shoes in our house, I chase Colby's hair around with a Swiffer all day and wipe off the kitchen counters after breakfast, lunch and dinner. And I'm not a big fan of noise. I'm always turning down the volume on the television, dialing the radio knob lower, asking kids to use their inside voices...
Lately, Tucker is covered with spitup, and occasionally his diaper leaks. He cries, loudly, a fair bit, and coos frequently. And I understand that these things, the dirt and the noise, will only be amplified in months and years to come. And I really can't wait.JEB
What might not be so obvious is how this disease slowly attacks the parents, too. It has brought out the worst in me. I'm irritable, callous, and impatient. Sometimes I'm not nice to my wife. I get mad at my dog for barking when the mail comes. Cruelest of all is the pain I get in the pit of my soul after I lose it... when I realize that someday she won't be here.
I pray for patience. I pray for peace. And some nights the only thing I pray for is that we all get some sleep.
I’m a cautious driver. I buckle her in and look both ways and stick to the speed limit. Still, lipopigments build up in her body’s tissues. I do alright in the kitchen. I make decent, well-balanced meals, and I feed her local and organic when I can. Still, lipopigments build up in her body’s tissues. I am a teacher. I know that reading and signing and talking and singing are important, and I do those things routinely. Still, lipopigments build up in her body’s tissues.
I am not a neuroscientist. Or a gifted researcher. I am not a magician or a miracle worker. Even if I were a wrestler, I couldn't take them down. No matter what I do, lipopigments build up in her body's tissues.
All this makes me think I'd better buy stock in boxes of tissues...