This is a reprint of an essay I wrote a few years ago. Next week I’ll be writing about the choices we make and I’d like to start by sharing this experience.
We’re in a grocery store and my seven-year-old daughter Jessica wants some stickers. Since this is the reward I always give her for being patient while we stock up for the week, I say yes and guide her down the card aisle. Packages of stickers hang from hooks on a corner of the shelf.
She plants herself in the aisle and inspects the stickers. We’ve done this so many times before that you’d think she’d have memorized them all by now. The selection doesn’t change much – there are butterfly stickers and Pooh stickers and flower stickers – but she deliberates carefully as if she has never seen the stickers before.
For all I know, she hasn’t. It’s difficult to know what she thinks or knows or sees or remembers. I do know that making choices is hard for Jessica. Most things are hard for Jessica because she was born with a rare genetic disorder that causes seizures and partial blindness and sensory dysfunction. I don’t even remember all the things the doctors have diagnosed. I stopped listening a long time ago. I find choices hard, too, but that was one choice that wasn’t so very difficult to make.
Jessica has a sunny nature although she can be more stubborn than any mule. Just try to get her to pick out some stickers so we can move along before the frozen French fries thaw.
“You need to pick, honey,” I tell her after I’ve grown bored flipping through the cards on the shelves next to the stickers.
“Hard to choose,” Jessica tells me.
Indeed it is. When she was nine months old the neurosurgeons asked me to choose brain surgery. They wanted to remove most of the left side of her brain to control the seizures. No parent should ever have to make that choice, but that didn’t stop them from forcing me to make it. When the surgery didn’t work, I chose not to sue everyone. When I chose to leave my husband after years of unhappiness in my marriage, he said to me, “I think we would still be together, if not for Jessica.” For all I know, it could be true. But I chose not to blame my daughter for my own failings. Sometimes it is hard to choose. To remain undecided, uncommitted: I wish I had that choice.
Finally, I grow exasperated with Jessica, who stares at the selection of stickers without moving. “Choose!” I command. “If you don’t pick right now, we’re going to leave without any!”
Jessica loses her focus and I wish I had chosen not to make my threat.
“Mama is mad,” she says to me.
She is just learning about emotions and isn’t always confident that she has identified one correctly. She’s not entirely sure what emotions mean, but she knows she doesn’t like it when I’m mad. Her own feelings she keeps to herself. She has an autism-spectrum disorder; I wrote the name of it down somewhere, but the diagnosis isn’t helpful. It doesn’t tell me what to do or how to parent her, how to reach her or quiet her when she’s agitated or keep her from becoming agitated in the first place, how to respond to the cruelty of others who feel threatened by her differences, or how to write my books when I’ve spent the entire day rocking her in my arms. Mostly the doctors give unhelpful diagnoses and I do the best I can, and sometimes wish I had made different choices.
“Mama is mad,” I agree. Jessica doesn’t understand fine shadings like bored, impatient, frustrated. To Jessica, people are mad, or not. “We’ve been standing here for twenty minutes. Let’s go,” I say firmly.
“Want stickers!” she wails.
“Then PICK!” I wail.
“Hard to choose,” she says.
And I start to laugh. Indeed, it is hard to choose – hard to choose to take the next breath when the neurologist says your newborn daughter’s brain is massively deformed; hard to choose to write the next story when everyone rejected the last one; hard to choose to walk away from a marriage to a nice man who never grew up.
Jessica beams when she sees my smile. “Mama not mad,” she says knowingly.
“No,” I say, “Mama’s not mad anymore.” And I give her a big hug. She pushes me away slightly so she can look up into my face.
“Mama picked happy,” she says, wisely.
I glance at her, startled. But she has turned back to the stickers, undecided between Pooh and Mickey Mouse.
Pick happy, I tell myself, turning it over in my mind as if it were a foreign concept. I think of all the joy and all the sorrow I have felt since this child came into my life, and I reflect on the irony that she is the one to teach me the answer to the most important choice of all. Even if otherwise she does find it hard to choose.