Lily loves fire: a thought on safety for sibs with disabilities

My sister really likes fire. Yes, still, despite having lost her vision a decade ago. That’s one reason that Chanukah is a relatively big deal in our family: candles, every night for eight nights! With at least one set of Shabbat candles overlapping, because you can’t have an eight-night holiday without a Friday night in there somewhere! And it’s winter, so we might have a fire in the fireplace! Whee!

I was thinking about this last night, the last night of Chanukah, and remembering an event from a long time ago. Lily was in the kitchen, possibly still at the dinner table. Mom and I were cleaning up after the meal – washing dishes, putting away leftovers. All of a sudden, Lily’s sweet little voice started talking about candles. We turned around to find that Lily had navigated to the counter, where the two Friday night candles had been blazing merrily in their candlesticks. Had been. Because Lily was holding one in her hand, and was delightedly commenting on it. We both jumped and grabbed the candle and replaced it and removed Lily from the immediate area, and nobody got hurt and nothing bad happened (the candle didn’t even go out). But we kept the candles a bit further out of reach after that.

This year, our holiday was a bit more scattered than normal. I try to help Lily light candles at least once during every Chanukah – I can be safe with fire, and that lets her participate more fully in the ritual – and we didn’t manage to do that. But Lily still got to sing the blessings and know that we were lighting the candles.

One of the hardest lessons for me to help Lily learn over the years is how to minimize pain, to herself and to others. For years, Lily knew that crying was a response to the stimulus of pinching, which she inflicted on a lot of us (yes, often me) on a regular basis (or tried to), but she didn’t really have a sense that the reason was the victim felt pain. (Which is why I feel it to be my job to help her learn this lesson; she hurt me and I needed her to stop, and preferred to try to get her to understand why. That, and I got in trouble for retaliating. ;-))

I’m not sure Lily had a concept of pain during her young years, for which I am mostly grateful. The first time I remember thinking that this might change was when a nurse needed to draw some blood before an outpatient procedure and – according to my folks, as I was in school at the time – she kept missing the vein. Dad says Lily crawled behind him on the hospital bed when the nurse came back in the room. I was able to invoke this memory a couple of times to get Lily to stop doing something hurtful, and the look of concentration and unhappiness on her face made me realize that she really hadn’t gotten it before. It’s really hard to convince a kid to stop doing something that can hurt them if they don’t have a clear concept of pain. I can’t say that I don’t like watching fires, myself, but I’ve always had a lot of respect for them, because in addition to my connection of pain with fire, I’ve got an extra layer of caution around me for doing just about anything. Some of this is just me, I think, but some of it comes from knowing that I was looking out for Lily when she couldn’t look out for herself, and that nagging feeling that I couldn’t afford to screw up or get hurt when Lily’s needs already took so much of my parents’ time and energy.

I’m glad that Lily’s fondness for fire never got her in trouble, and I’m glad that she can still remember it and participate in Jewish rituals that involve candles. Fire, like any tool (or almost any thing), can be dangerous, but it’s also a good thing to have around when treated properly. Like lighting candles on Chanukah!

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