“Why did she have to die?” I get this question a lot from my daughter, who has a cognitive disability and some really big questions about death. I have yet to come up with any satisfying answers. If you have any, I’d love to hear from you — there’s a comment section below.
Death and its mysteries never came up during my daughter’s childhood, or even her teenager-hood. We parents with intellectually disabled children face lots of mysteries — IEP’s and 504’s to name a few — but an understanding of death’s finality is delayed, sometimes forever. So you might say that a cognitive disability is some sort of blessing. But the blessing — not a perspective I get carried away with, in case you were wondering — did not last.
Somewhere in her twenties, my daughter started to really “get” death. And to say that she didn’t like what she was getting would be quite the understatement. She’s got a problem with mortality; she doesn’t see the point in it. Her reasoning became clear to me when her grandfather died. Her grief was strong, and I felt overmatched by it. Plus, she had that awful question, “Why did he have to die?” Feeling the lameness of my words even as they came out of my mouth, I said the usual stuff — “Well, he was really old. He was so old that his body was just falling apart and he didn’t feel good anymore and his body just gave out.” But my daughter had a response that just killed me.
“But I still love him,” she said. And that’s when I got it. I realized that she figured that if a human being was still loved, they should not die because somebody still loved them and needed them. That was certainly the case with her beloved Poppy. And here’s the thing: despite her grief, there was something enchanting in this moment. I settled in and pondered awhile; here I was — privileged to see into the kind of “logic” that threads through the synapses of a brain that’s working hard, but differently. Fewer neurons, different connections, but cogitation nonetheless. Whatever was going on in that brain of hers, it was something to behold.
I had to admire her logic. If she was queen of the universe, it would be ruled by love, not physics. Well, why not? It would certainly be a kinder, gentler universe. But her father, in his hopelessly rational way, tried to point out that the universe would get awfully crowded if nobody ever died. Maintaining a modicum of habitable space for the denizens of earth was simply not a compelling need as far as Kate was concerned. It was hardly a winning substitute for love.
So the whole issue of death remains unresolved in our household. And death comes knocking way too often. About a year ago, Kate was peacefully reading the newspaper and I was peacefully loading the dishwasher when she suddenly let out a mournful gasp. “Oh, no! Mom! Not Ruby!” So I ran over to look at the obituaries and there indeed was the sweet face of Ruby, one of Kate’s favorite people at the Assisted Living Center where she occasionally helps out. Another knock, another round of tears and questions.
Now if you’re thinking that I should be hiding the obituary section of the newspaper, you would not be alone; I’ve thought about that, too. And sometimes we do hide parts of the newspaper, especially when a murder is in the headlines. Because, of course, crime is a shocking assault on my daughter’s world order, too. But I’m not prepared to hide the newspaper every day, and she never skips the obituaries. Perhaps this obituary-reading is her way of wrestling with death, her own personally-prescribed de-sensitization treatment. Or maybe I should intervene? Is she just obsessing un-healthily on death (after all, she does have OCD)? If you have thoughts about this, I hope you’ll share them with me.
Fortunately, my daughter has Down Syndrome. Yes, I really said that, and I mean it, too. Because 9 times out of 10 she finds something that delights her in the newspaper. MY theory of the universe is that Down Syndrome seems to give her the ability to quickly hop out of a sad thought and into a jolly one. That’s when I hear a delighted little “Oh!” — and I know that she’s come across her favorite kind of news — a play or musical opening soon, a review of the new “Star Wars” movie, a mention of Broadway’s upcoming Tony Awards show. And if I look up from whatever I’m doing, I see that look of pure joy cross her face, that look I’m lucky enough to know so well. For the moment, death has been beaten back into a corner and life is shining forth in all its glory.
She is a constant, living lesson to me, my daughter. To be able to fully embrace whatever good comes your way, letting it overtake whatever awfulness had been stalking your brain — well, that would be a very good thing. And for me, it might require years of meditation and mindfulness training, but here she is, utterly delighted in this moment, this one. And it’s the reminder I need. I walk outside, heading toward the newspaper and all its horrors, but I’m looking up. There are leaves and sky, right now, this very moment.