Valhoma

There’s no word in our culture to describe the unique status of a parent who has lost a child to early death, the way we would say ‘widow’ or widower about a bereaved spouse, or orphan about a child with dead parents. A few months ago as I was cruising the Death and Grief Internet, (not to be confused with the dark web), I came across an article that is trying to make the Sanskrit word “Vilomah” happen for us.

According to joincake.com (9/14/22), “Karla Holloway, a James B. Duke professor of English at Duke University, coined the term after suffering the loss of a child and discovering that there was no word that gave meaning to a parent whose child has died.”

I’ve tried my best to remember Vilomah but I always seem to think of it as Valhomah, sort of like a combination of Valhalla, the Viking afterworld, and some sort of metastisizing tumor. It’s not a very appealing word, all due respect to Sanskrit to which all Indo-European languages seem to owe a great debt. Although I feel a bit like Regina from Mean Girls telling Gretchen that Fetch isn’t going to happen, I don’t think I’m going to go with it. Maybe any word would be unappealing that describes this state of being.

This week we gave away some of Sarah’s large medical equipment to a family that really needed it. Our insurance was always good and we were able to get durable medical equipment to support her. Another family needed her Rifton Tram, which is a sort of small medical forklift that you can use inside your house to help assist with moving a child from room to room who cannot walk or stand unassisted. Sarah had a Rifton Tram at school and she could use it as a “stander” when doing art or other such things (it’s important for kids like her to stand so they can lay down calcium on their hips), and there was one at her weekly physical therapy too. So we got together the various letters of medical necessity and so forth and asked our insurer to pre-approve one for her at home. Of course, we got turned down the first few times but within two years we had the Tram.

I can’t say after that we used it a great deal. It was cumbersome and it took up a lot of room and time in our small house. We also had an established routine for Sarah’s transfers using her stroller wheelchair in which we pretended it was an airplane or a train and I think she didn’t want to give that up, and neither did we. Anyway, we really didn’t do much with the Rifton Tram so it didn’t make me anxious to ask Becky, Sarah’s physical therapist, if she had another family that needed it that we could pass it on to.

It’s so hard to think of giving away Sarah’s wheelchairs right now, or her speech-generating device with eye-gaze. They feel like parts of her body. Especially her talker. There are so many bits and pieces of her personality on there. The page of knock-knock jokes that she loved to torture us with. All the games she loved to play. I don’t know if I will ever be ready to let go of those things. Or to change her room.

Right now there are 3 or 4 dead balloons in her room. Sarah loved large mylar balloons and she had a trio of Happy Birthday ones leftover from my husband’s birthday a few weeks before her death, and then Max got her one when I was away in the shape of a watermelon slice that says “Sweet Summer.” I guess someday we will have to do something with them.