photo by  Erin Purcell

photo by Erin Purcell

One of my living kids got tested for all sorts of academic and psychological things recently. The reports are back, and the IEP meeting is looming. And I ask myself, what does it all mean? The simple, direct, accurate answer is that we knew there were things about school and about life that were hard for this kid. Now we know why. After the meeting we might even have a functional plan of getting the kid the help that the kid needs. But that is not the entire answer. And it is not, maybe, the answer to the most important question.

Here’s another question: Is this forever? The report suggests compensatory strategies. It tells us what would make functioning easier. But does that mean that the kid will always be like this? Needing this level of support? Someone asked me that, and my instinct was to say no. No, the kid will benefit from the strategies. The kid will get better.

I said that, and then I went to Shabbat morning services. Because we were at a retreat with the community of the K-8 school all my living kids went or go to, and there is a nice array of services all weekend long, organized and led by members of the community (yay my community!).

I went to the ones that are held outside and that make a point of connecting to one’s conception of the divine through melodies, words, nature, and our bodies. And there, in the middle of a sort-of-guided meditation that was meant to get us ready to approach the Amidah (prayer that is the heart of the service), there I faced the more—maybe the most—important question.

I closed my eyes and listened, and then, as instructed, when I was ready, I opened them. I took in our peaceful surroundings. I felt deep gratitude to be able to be in that place at that time—gratitude for being a part of this community, and for having the personal safety that we enjoy and so many others do not. And I also saw the kid’s face. Smiling, joyful, mischievous. Larger than life.

I didn’t even wonder why I was seeing it then, with my eyes open, and not, as one would expect from a proper vision, while my eyes were not busy processing the real world. And the question. What does this change? Does it change anything?

I mean, I could tell that it was an overlay—the face came from my mind, but my mind photoshopped it into my actual surroundings. It was a rather professional job—it felt natural to see it there, but also to know that I wasn’t 'seeing things'. I felt so much tender love for this kid in that moment. I felt myself internalizing and integrating that realization that people talk about, the one that intellectually was mine all along: This is my kid—the same kid today as the day before the report came.

There was another part to that thought. The Kid’s-perfect-as-the-kid-is part. I had to pull on that thread then, and I have been pulling on it since. What, I thought, does 'perfect' mean in this context?

This is obviously who this kid is. We have explanations now, but this is who the kid is. So maybe 'whole'? The kid is whole as the kid is. The things we know now have always been a part of this kid’s whole.

These questions, these answers, they echo.

How do I see my children? Am I giving each their due?

If this kid is whole, if the issues the kid needs support for are an inherent part of the kid, and therefore a part of this whole, is—I found myself thinking as the rabbi invited us to find a personal spot to say the Amidah—is A being dead, his dying before he was born, is that a part of his whole?

One of the strange things about being a babylost parent is how little information we have about these tiny humans whom we love so deeply. The intense desire to be fair to them, the concern that because they won’t speak up for themselves we might shortchange them in some way—isn’t that the very definition of mindfuck? Or of parenting a dead kid. Potato, potah-to.

This isn’t normally a question you ask about a dearly departed. Humans who’ve clocked in some years on this planet leave behind memories of themselves. Good, bad, complicated. To cherish, to come to terms with, to rethink. A didn’t get to do that. So what is his whole?

It feels incredibly unsatisfying that it takes but a minute to list the essential facts and stats about him. I remember saying—to the first shrink that we saw after—that he was perfect, but he was dead. I think I want, I need that 'but'. I don’t want A being dead to count as a part of who he is. Isn’t that why people have such a hard time talking to us about our children, because they intuitively see their deadness as their essence?

A friend once said that A was my pain. No, I said. He’s my son.

It seems, then, that I need the idea of A to stand separately, if not entirely separated, from the idea of his death. And that brings me to the realization that all these years later I’ve found another thing to be sad about. I realize that I do not know what A’s whole is. In excluding his deadness from it, I took a look at it, and realized that it is, and will always be, a black box. I’ve thought and I’ve written about missing getting to know him, and perhaps this is just another way to say the same thing. Or perhaps it is slightly different. Either way, it feels like a door being slammed in my face. Again.

And so I stand outside that door, clutching desperately the only thread I have, the only thing I know for sure—he is my son, and he is loved.


How do you see your child(ren)’s death(s)? Is it a thing apart or is that a part of them?