"Am I smarter than Max?" she asks.
"Max is smart, too," I tell her.
"How is he smart?" Sabrina wants to know. "He can't talk!"
"Yes," I tell her, "he can talk. He just does it in his own way."
Pause.
"Remember we've talked about the condition Max has? Do you remember what it's called?" I ask.
Sabrina doesn't remember.
"It's called cerebral palsy, and it affects how your muscles work," I explain. "There are muscles all over your body. Your tongue has muscles, too. And when you have cerebral palsy, sometimes your tongue can't quite move to make certain sounds. That's why Max has trouble saying 'p's' an 'b's' and other sounds."
"He says 'Daddy' very well!" Sabrina notes.
"Yes, he does!" I say (and hold back from pointing out that he says "Mommy" pretty darn well, too).
"If his muscles don't always work well, you have muscles in your eyes, so why can he blink OK?" she asks.
I am continuously bowled over by this child's questions.
"Certain muscles in his body work better than others," I offer, and she nods.
And then:
"OK, I have a question that's sort of about this but not! You know how if there is ever an emergency I should call 911? What happens if you and Max are home?"
At first, I'm not quite sure what she's getting at. And then it dawns on me.
"You want to know what happens if Max needs to call 911 because something happened to me?" I ask.
Sabrina nods.
Another pause, and my heart is hurting just a bit. "Well, Max doesn't yet know to call 911, but he will soon. Because he's smart," I say. "And you don't need to worry, because nothing will happen to me."
And that's that, and she goes to sleep, and then of course I replay the conversation in my head for the rest of the night. Did I say the right thing? Should I have brought up more? Did she absorb it? Did she sense how much I struggled to give answers?
These conversations are so important to me. I know Sabrina is increasingly processing what it means to be a kid with special needs, and what it means to be the sister of a kid with special needs, too (she's come a long way since she used to describe Max as "He needs special needs!"). And I want to make sure she's getting a clear message and really understanding.
I usually let the conversations happen organically, and I never force anything. They often crop up at bedtime, or when Sabrina and I are out and we see a kid with special needs. At times, I've gotten choked up, especially when we talk about Max's birth. It remains my biggest tender spot.
I fell asleep thinking that I did the best I could—my usual approach toward raising a kid with special needs.
