Pinocchio

The first time he colored because he wanted to, age 5

I was talking to a friend of mine recently whose son (and one of my closest friends) died from leukemia 14 years ago. She compassionately compared our challenges with William to their struggles with their son during his long illness. Honestly, she didn't have to do that. I sometimes feel like I've lost my little boy, but she LOST her little boy. I think I was talking about the fact that we commute an hour and a half every day for his therapy, and often, three hours a day. She reacted to it as most people do--whoa, that must be stressful. I know that it is, in my head. But it's just kind of life for us at this point, and I said so. Then she said something I'll never forget.

"We sort of normalize things, don't we?"

She went on to tell me about how she used to spare her son a lot of hospital time (and stays in the hospital were, in his mind, not much short of torture) by begging for training from the medical professionals on staff. She treated her own son at their home, kept medical equipment there, and went through a long, complicated process of sterilizing the room and all equipment in order to do it all safely. I gaped at her. "How did you do all that?" I blurted. "You normalize it," she repeated. And we nodded at each other. You do what you have to do for your kids. Occasionally, you catch a glimpse of how *not* normal this lifestyle is, but mostly, you put your head down and you do what you gotta do. Because the alternative is to bear more suffering than you can endure. And then, one day, you look back on it and you say...I was f*$%ing nuts.

It is this way--normalized--that I have lived for about three years. I mean, you see the moments, on this blog, when I break out of that normal for a minute and I go, "WHAT THE CRAP, GUYS." But lately, I've had a really, really hard time staying "normal."

A few things happened. It started with a normal Saturday, me going about my business, cleaning up my bedroom, I think, and Will playing with William and Sammy in the next room. I heard William saying something to his dad over and over, but I'm used to that. It was in the background and I didn't think much of it. I tuned in. "Want see snowflake," he said. Again and again and again. "Want snowflake!" he simplified, trying to be clearer. Will had no idea what he meant, so he tried his usual, "can you point to it, buddy?" and "hey, let's play with this fire truck," but, no dice. William persisted.

Then I heard silence. Then,

"Holy crap. Maura, you need to see this."

"Hang on," I called back, and finished putting away whatever armful of stuff I had going. See, everything's still normal. I know the rhythm of these things. I did expect something interesting, even thrilling. But I was not ready for what I walked in on.

Will pointed to the kids' chest of drawers. Nora had decorated her drawers with stickers. Christmas stickers (she did this back in July, of course). They were the kind that have a rounded clear surface...like it looks like a candy cane with a dewdrop on it. Will pointed to one of William's drawers. All of the snowflakes had been collected there, and William was requesting the final snowflake on Nora's drawer, so Daddy would see him move it, so he could show him his collection.

For a kid who has never shown interest in anything but food, vehicles, and a stuffed lobster, this was very, very big. And ever since that happened, I've been really emotional about our little guy, and I honestly could not figure out what to pin it on. I mean, why now?

Then, a few days ago, I was pushing my cart through Kroger and stumbled upon one of those obnoxious bins in the middle of the aisle that stands as tall as your kids, stuffed full of cheap toys. I don't know why (because seriously, I never do this), but I looked at a bin full of toy dinosaurs and I thought, aww, it'd be fun to bring a little treat home for the kids. And then I froze. Staring down at no fewer than 30 different varieties of dinosaurs, I had no idea what my son would like. My six year old son. I don't know what he likes. I don't know what catches his eye and makes him go, "huh--cool," or what things he wants to try or what he wants to be when he grows up or what he thinks he's good at. That's why I felt so upset about the snowflakes. I didn't know that he liked stickers. Or snowflakes. I still don't know what caught his eye about those.

And that's how you find yourself devastated by a stupid sale bin at Kroger.

I'd been treating William like Pinocchio. Like he's a beautiful, perfect little pet, who I wish and wish and wish were real. But he is real. He might not move or act like a real boy, but he is one. He's always been one, deep inside. I just don't get to see it. And because of that, I don't get to know it.

Finally, the other day when I was wiping up the table, I pulled William's chair out to wipe it down (that boy knows how to make a proper mess, seriously), and something shiny caught my eye.

A snowflake sticker.

I picked it up and looked at it for a little while. What does he like about these?, I wondered for the hundredth time. Is it that they're shiny? Smooth? He likes winter? Or Christmas? Maybe he just likes that it's round? Or it looks wet but it's not?

I don't know. I don't know if I'm ever gonna know. So I stuck it to a picture frame right next to the sink so I could see it every day. Maybe he'd find it someday and put it with his collection. In the meantime, I'll remember.

He's not Pinocchio. He's a real boy.