Explaining loss to my developmentally delayed sister

Have I described Lily as developmentally delayed yet? It’s one of those fancy, clinical-type terms, but it also makes sense. Lily’s cognitive abilities are, for the most part, well behind those of other people her age. And we have suffered a loss that she will not fully be able to understand.

I just found out last night that my grandmother passed away yesterday. She hadn’t been in the best of health for a long time, and I know she wasn’t quite the same after my grandfather’s death over ten years ago. And I accepted a long time ago that my relationship with her was pretty thin, that we could love each other and have good memories but not be all that close in my adulthood. Still, it’s a shock, and I am sad.

Lily loves – loved? – Grandma. What drew tears from me in earnest after hearing the news? Mourning for my sister’s loss. That’s also what happened when Grandpa died; I was steady, at the memorial service, and just lost it when the rabbi mentioned my sister.

It’s very hard to process loss of loved ones because Lily doesn’t get it. The fancy term for it is that she lacks object permanence; basically, if she can’t see it, she isn’t sure that it’s still there. (She does better with items than with people, but even then, she’s not solid.) From school, she learned the language of “present” and “absent,” so people who are not immediately in the room with her are “absent.” There is no “moved away” or “on vacation.” There is no “dead.” For Lily, they all sort of muddle, and they’re all reversible. People are there or they’re not, but they always seem to be able to leave or come back.

I’m sure it doesn’t help that I talk to her on the phone so often and so randomly seem to appear and disappear! 🙂 (Lily anticipates people arriving so enthusiastically that we tend not to tell her that I’ll be coming for a visit until the last minute, if we don’t try to surprise her.)

Grandma’s passing means that Lily and I have no surviving grandparents. I don’t know what this will mean for our future as an extended family. It scares me. It angers me. It’s making it hard to focus on work, or chores. (It may have made this post a little incoherent!) I fear what Lily’s repeated requests to visit Grandma or to talk to her on the phone will do to my mom, again in a redux of what happened when we lost Grandpa. (In this post, I am focusing on our maternal grandparents, with whom we had a somewhat closer relationship than our paternal family.)

I don’t think I actually believe that I have to grieve for both my sister and myself, because she doesn’t really have a full sense of loss. I think it’s more accurate to say that it’s my sister’s loss that makes this all real to me, because I am processing this for myself, but also knowing that I am someone she uses to help her understand and process her world.


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