Update 5/24 :  I spoke with the mom who is referenced in this story about what happened. She is a friend, and a lovely person, and I don’t fault her for this. Kids say what they say–my own included! My purpose in telling this story wasn’t to demonize anyone, but just to share another ALS experience.

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The little girl was asking me a question, but I couldn’t hear her over the noise of the playground. I leaned around Scarlett’s head and asked the girl–a 6-year-old who lives in our neighborhood–to repeat herself, but it took a few tries before her question was audible. When I could finally understand what she was saying–and she was speaking pretty loudly by that point–what I heard was “Does Scarlett know that you’re going to die soon?”

There are a lot of possible answers to that question, but the first thing that came out of my mouth was “Oh honey, I’m not going to die soon.”

She persisted. “My mom says that you’re going to die soon.”

“Well,” I said firmly. “I’m not.” And then I must have said something else, but I absolutely don’t know what it was, and suddenly we were wheeling off to another section of the park.

“Why did she say that?” Scarlett asked me quietly.

I myself was wondering the same thing. My initial reaction was that the question had felt mean. Does Scarlett know? Well, Scarlett’s standing right here, so…

But after I thought about it a little more, I concluded that the kid is six. Even though these girls often seem older, speaking the language of exasperated teenagers with orbiting eyeballs, they are just children. Curiosity and tactlessness are their dialect right now.

It’s worth sharing here that Scarlett is well aware of what ALS does and what it means. Our conversations have changed over the years based upon her ability to understand, so at first we just talked about how I was getting weak. But now she knows that I have lost friends to the disease, and she knows that it will cut my life short unless we are able to find effective treatments.

She also knows that I don’t want to die, that I will do anything to stay with her, and that we are working hard to make that happen. She knows, as I do, that no one can be certain of what the future holds. That said, we’ve been very honest about my prognosis. ALS is a terminal illness. But I’ve had the disease for at least five years, and I’m doing OK. I don’t think I’m going to die soon.

Still, the question at the playground rocked us both. That night she couldn’t sleep. I asked her if she wanted to talk about what her friend had said. This time her question was, “Why did her mom say that about you?”

We talked about it for a little while, not too long. I wasn’t exactly sure what to say, but I did my best. Privately, I could imagine numerous scenarios, none of which involved anything other than an innocent desire to explain a situation to a child in an honest way.

“Is Scarlett’s mom going to die?” The girl might have asked. And maybe her mom just said yes. The conversation continues in my mind. “Does Scarlett know that?” the daughter wonders. “I don’t know,” her mother tells her.

But I highly doubt she follows that up with, “Why don’t you ask next time you see them together?”

Kids ask me about my disease all the time. At a recent soccer practice, one girl came up to me and said “I’m sorry that you’re in a wheelchair. What happened to you?” That prompted a nice chat. But the questions aren’t always going to be so easy, or phrased so politely. At the moment, I’m just glad I was there when this particular question was asked. I know I won’t always be around when Scarlett faces curiosity about my ALS. She’s going to have to navigate some difficult discussions on her own. My goal is to provide her with the tools to do it.

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