On the afternoon of Sunday, January 8, I sent a PM to a few people entitled
“My Absence, Amended.” It read:
The following has nothing to do with my absence so far:
This morning, my teenaged son unexpectedly passed away.
Under the circumstances, my absence may be extended.
I had a lot of long conversations with a few friends on PM in the next couple of weeks. Frankly, a lot of those conversations had overlapping content because, of course, the same things were on my mind as I spoke to different people. After this PM to Lezlie, aka L in the Southeast, she suggested that when the time came I base a post on it. I’d forgotten that suggestion. I had drafted a post, didn’t like it, came back to my PM’s and came across this one, at which point I realized the best thing might be to just post it as is. I was considering asking her permission; then I came across her reply containing the suggestion and that sealed it. This PM was written Jan. 18. The initial “Thank you” is for her checking up on me. She was far from alone in that respect and I am grateful for the support I received and continue to receive. (A tree grows in Tidewater.)
The text is unedited except that sometimes in PM’s I sign off with my real name, which I did in this case. The quote that follows the sign-off came from my drafted and ultimately rejected post – that part I kept. What follows that quote is newer.
I appreciate being checked on. A couple from OS do, mainly women. I needed a different sort of help from someone else who offered on OS, some technical advice of a sort, and got it today in a phone conversation. It's the second phone conversation I've ever had with someone on OS. Not the same person as the first one was with.
Shiva, the initial mourning period, ended last night. Blew out the big candle. Don't have to find ten Jewish adults every day for a quorum (minyan) for the mourning prayer (mourners' Kaddish) now, once a week is fine. That the candle was burning lower bothered me in midweek but not by the time it came time to blow it out. I get that it doesn't really signify all that much.
People have brought tons of food. A lot of people have been supportive in a lot of ways. More than I expected. Particularly the guys I play with and their wives.
Not as sad as I expected in general. Miss the kid but don't miss his CP. Disoriented, though.
Now new details. Death certificates. Dealing with insurance issues. Uy.
We don't, as Jews, do flowers, but some still come. My daughter loves them. I'm glad not too many, though.
I can talk about the death easily without it hurting, including recounting the details. I can't, however, watch the music video without it hurting a lot.
I've been sort of emotionally detached all my life. Sometimes it helps. Sometimes it just keeps me from cutting loose. Now it's probably more of a positive than a negative. I wouldn't exactly be elated at the moment anyway, but I probably would be more devastated.
It's been amazing me how many people are affected by this death and how heavily. People cry who didn't know him very well; some cry who didn't know him at all but their spouses knew him a little. There's something about this that reaches people. I'm not completely sure I get it. My wife theorizes that it has to do with our confronting two fears so many parents have: the fear of having a kid with a disability and the fear of losing a child. Done both now. As I remarked to God a day or two after this happened: I'd like the testing to stop now, please.
I hear a lot about what good parents we were to him, me in particular because I handled his physical needs and my helping him was so visible. A Christian husband of a Jewish woman who works at Temple (the husband also works there, as a security guard - he has Secret Service experience) asked me when I'd be up for Sainthood. I said We don't do that. He goes Yeah, you'd have to go up the street. (Catholic church there.) I have two reactions to all that stuff:
1. I've heard so many times "I couldn't do what you do." (Am I repeating myself? I don't know who I've said what to over the last week or so.) Really? If you had a kid with a severe disability who could communicate with you, what do you think you'd do? My guess is that we're all selling ourselves short, they in terms of their capabilities and me in terms of I may still be doing this to an unusual extent (or at least did until the Eighth).
2. My wife said something interesting to me. She said "they don't know the half of it." She's right. It wasn't easier than it looked, it was actually harder, in part because they didn't see the emotionally difficult stuff and in part because it didn't stop for as long as he was awake. Harder, but I think more generally possible than they assume.
I get so much sympathy that sometimes I feel a little like an imposter but, really, I did lose my son, and my life did revolve largely around him, and I did love him intensely. But I don't feel like screaming all the time. The manifestations of this are curious.
Again, sorry if I repeat myself here. I might be, I might not. I don't know. Mostly cerebral palsy was a gigantic negative. (A quick note here: In case you're unfamiliar with CP, it's not a disease and it's not progressive, it's basically a brain injury or lack of oxygen in utero, during birth, or immediately afterward. Think James Brady in utero.) There were a couple of positive aspects it brought my life, and I'm not including the parking privileges. One is that I got to see the good side of a lot of people, which isn't what I expected when we first figured out what was going on with him. I was taunted a lot as a kid, but I lived in greater New York where that was par for the course. I expected it to happen to him and it hardly ever did. People were protective. But that's not the big one.
The big one was the physical relationship. When you have a little boy, you pick him up, you hug him, you kiss him, you tell him you love him, and he does all those things to you. Then he gets older and all that goes out the window. Except it didn't. I picked him up several times a day, so I held him. I wasn't self-conscious about kissing him, telling him I loved him, anything like that, and he wasn't self-conscious about it either. He'd ask me for a hug if he wanted one. He was very demonstrative. That really was a plus. Not all the physical contact was fun; fighting the spasticity while getting him into a shirt or jacket could be unbelievably frustrating, sometimes resulting in ripped seams. There was a lot of that stuff. But some was.
Most of the rest involved the typical plusses and minuses of raising a kid. Most of it. There was also the fact that he was constantly around adults, so he was way more comfortable with them than with peers, with whom his interactions were mostly very limited and mostly supervised by default. That was both frustrating and safe because we knew he wasn't getting into trouble we didn't know about. We always knew.
CP was strange in another way no one takes into account:
It's not only a difference in abilities, it's also a resultant difference in experiences. This showed up in all sorts of weird ways. How do you explain Slippery to a kid who's never slipped? or slush to a kid who's never walked through it? There's a probability exercise in math class about some girl throwing ten paper planes around a room and tracking where they land, but this makes no sense to a kid who's never thrown a paper plane and so who doesn't understand that they all land in different places because of air currents. Or one of the weirdest of all: The day a teacher came up with a lighthearted fantasy assignment for the class: Imagine what it would be like to be left home alone for a week. Jonah turned to his PCA (Personal Care Assistant is what I think it stands for, basically it means aide) and says "I'd be screwed." Oops. Hey, you trying to traumatize my kid??
And on and on. Checking in can get you an earful these days.
Oseh shalom bimromav, hu ya’aseh shalom aleinu, v’al kol Yisrael, v’imru Amein.
May the One who causes peace to reign in the high heavens cause peace to reign among us and all Israel and let us say: Amen.
Last line of the Mourners’ Kaddish
(the Hebrew only).
At ours, the one we attended at a Jewish old age home,
typically sung as a duet by our service leader
with congregational participation
and me at the piano, where I still am most Fridays,
next to the space where my kid’s noisy wheelchair used to be,
as he drove
in fits and starts
toward the Ark.