Puppies and Cookies are Swell

We visited our local pet store last weekend, Schuyler and I, ostensibly to pick up hamster food for her rescue hamster, Rudy (who only took about a week to transform from emaciated wretch to Jabba the Hutt), but of course, that was only our weak excuse. Rudy had plenty of food. We were there for the puppies.

To clarify, we were there because on most Saturdays, local rescue groups and shelters bring their dogs to this particular pet store to find adoptive homes. Schuyler loves the dogs, she loses her mind for them on most weekends. But this time was special, because one of the puppies was a Schipperke mix. Schuyler’s own beloved Maxie is a Schipperke, so this mix puppy was special to her, familiar like an old friend. His name was PD, and he fell for Schuyler at roughly the same rate that she fell for him. He licked her face franticly, which she thought was wonderful.

When she gets well and truly tickled, Schuyler has an indelicate, braying laugh, like an antique steam engine about to blow a valve. It is, without hesitation or rival, my absolute favorite sound in the world. I don’t hear it as often as I want these days, but I heard it as she sat on the floor playing with PD.

I also heard it later that day when we met a family friend at the bookstore where Julie works, to pick up our rather impressive order of Girl Scout cookies. Schuyler spends a lot of time in her mother’s store, but somehow we never managed to play at the Lego table until last Saturday. Already giddy about the cookies (and really, I was right there with her on that), Schuyler thought the extremely tall and unstable “Daddy Tower” I built was unreasonably funny. Not in and of itself, really, but rather as a thing she could shake and endanger. Falling Lego blocks are loud; a laughing Schuyler even more so. We got looks. We ignored them all.

Saturday was a good day.

My week that followed was complicated by advocacy issues and a crabby internet, and Schuyler’s fell apart with a nasty cold about midway through. We spent two days on the couch, eating cookies and just resting. But the thing is, I loved that time together. I loved it even when her cold became my own.

People talk about the internal world of kids like Schuyler, and hers has certainly opened up in the years since she embraced AAC technology. She’s more transparent than ever, even as her own AAC experience changes and becomes less straightforward than before. Schuyler is more prone to sharing now, more inclined to ask tough questions from time to time. But she can also become a little obsessive when something touches her in a particularly positive way. It’s one of her most endearing traits.

“Do you remember PD?” she asked me repeatedly over the course of the week, at random moments. “He licked my face! I love him.”

In so many ways, Schuyler steps gently on the edges of the world of a typical twelve year-old. And there is no question that she is aware of her differences and her disability. People ask from time to time how I’ll feel when Schuyler reads what I’ve written about her disability over the years. Don’t I know how much she’ll be hurt?

It’s an insulting question, deeply so. Not to me, but to Schuyler. It presumes that she’s not completely aware of how I feel about her disability, or how very much I hate it. She hates it, too, and we’ve had that conversation many times. It also insults her to presume that she can’t handle it. She’s tough enough and clever enough to make her way in the mean world around her, but she will be undone reading the complicated thoughts of her complicated father about her complicated life? Even if I hadn’t been having the same conversation with her that I’ve been having in my writing, and having it all along, she’s still better than that. Smarter, tougher, more realistic.

I’ve not always known what to do with Schuyler or how to help her best, but from the very beginning, I have endeavored to give her two things most of all. Love, and the truth. And I think that any success I’ve had as her father has come directly from that place.

I recently received a disc in the mail from a reporter who did a story on my family shortly after the book came out in February 2008. I hadn’t seen the story since it aired, and it hadn’t been available online for quite some time. We sat down yesterday and watched it with Schuyler, probably for the first time. We were all mesmerized by how much has changed in four years. She was like another child in the report, so small, her hair so red. The same laugh, though.

I’d forgotten most of what was in the piece, so I wasn’t prepared for the moment when the reporter, in describing polymicrogyria, mentioned that it could kill Schuyler. I wasn’t expecting to suddenly face the topic of the Big Bad. I glanced over at Schuyler, and she looked back at me. She wasn’t upset. She looked at me and at Julie with an expression that mirrored every tough talk we’d ever had about her disability, as if we might need some of her strength, which has often been the case. Her face simply said, without drama or morbidity, “I know.”

And yet, it is the innocent Schuyler I cherish the most, even as her often breathtaking naivety worries me deeply. That’s the Schuyler I spent the week with. I think after months of asking us hard questions about her seizures and riding out some scary experiences, this was a week that Schuyler chose to spend with at least one foot firmly planted in a world of face-licking puppies and chocolate-smeared cookie fingers, and a father willing to sit on the couch with her, holding her tightly through endless hours of Phineas & Ferb and pretending that it was me giving comfort to her, rather than the other way around.

Fortunately for me, that’s a fiction that she seems to enjoy, and maybe need, as much as I do. In many ways, perhaps even most ways, Schuyler is unprepared for the world. But I believe she might be closer than she thinks.

In her moments of fear, Schuyler doesn’t always see that. In my moments of fear, neither do I.