Good Talking

Someone made a negative remark about cremation yesterday in a TV show I was watching. That the family was just tossing away their loved one and burning them up. But we really couldn’t bear to think of Sarah outside the house without us in some cemetery by herself. She never wanted to spend a single night away from us. Not to go on camp overnights to Hershey Park or Six Flags, or to respite care at Jill’s House, which a lot of her friends really enjoyed and looked forward to, because it was like a resort for special needs kids. She just never wanted to be away from us at all, not for one single night.

So how could we leave her in a grave, somewhere else, among strangers? How could I sleep at night thinking my little girl might be too hot, or too cold, or getting snowed on? She is always with us now in her purple urn/box in the living room, always a part of things, at the center, the way she liked.

She did not like it if Max and I went off to the kitchen to have a private conversation without her or talked about adult subjects too much in front of her. Yes, she was spoiled, and our whole life was Sarah-centric. Sometimes we would tell her “Mommy and Daddy are allowed to talk about grown-up things for a few minutes” but it was hard. We didn’t enforce any sense of space or boundaries for her the way an ordinary kid is taught not to interrupt their parents. For one thing, she was always praised for any attempt at communication — words, using her speech device, calling out to us. “Good talking Sarah!” we would say. Did you hear that? She said Mama! She said You Stop on her talker! So how could we tell her not to interrupt us or call out to us?

We were used to having our conversations either when Sarah was at school, or via text, or in the evening after Sarah went to bed. Before Sarah died, I did not go to bed at 7:30 in the evening like I do now and wake up at 3, so there was more time for Max and me. I can’t say this was optimal, that we always communicated perfectly. But we were a good team.

Now we have a lot of time to talk, but I’m not always sure what to talk about. Max is supposed to have surgery on his back next week. It’s day surgery. We are also supposed to go to a Compassionate Friends meeting, and there is the informational meeting for Kennedy-Krieger therapeutic foster care sometime in the mix too. I don’t talk openly about my fears about these events because, well, it’s just too frightening. I suppose more death is my number one fear, followed by getting invested in people and then just losing them.