Thursday, June 8, 2017

Calling It A Night

Today it was hard to shake some bad juju.

I was really upset by something that was not my personal problem. Normally, I don't let other people's issues, or other people live in my head rent free.

But for the past day, I've been unable to shake my upset about a person that I know peripherally who had a very disabled son that passed away. This particular parent never mistreated the child, but was never terribly hands-on with the child. The child was always farmed out to a caregiver that I believe loved him more than his own mother. So while the biological mother was never abusive, she seemed to have been unloving. There was always sort of an indifferent, benign but cold tolerance to having a disabled child.

I happened upon this person's Facebook profile (really by accident, I saw that we had a mutual friend) and I noticed that there wasn't a single photograph of the disabled, now deceased child. There were lots of vanity pictures, and pictures of the other children but not a single one of the deceased child, not a single one, G-d rest his soul. The parent looked really happy, radiant, and it was like the child had been erased off the face of the earth, like he had never existed.

I cannot really explain how my heart has been aching over this. As I say, I am fully aware on a rational level that this is not my friend or relative, not my problem and therefore should not be my concern. But my heart is really heavy. I did cry a few tears over this.

Then, earlier this evening, we had another iPad calamity in my household as my own special needs son dropped the iPad, glass down, right from the second floor onto the hardwood main floor. It apparently wasn't in the "right" place, so he wanted it out of the "wrong" place. I'm not upset at all about the money that it will cost to fix it. The upsetting thing is that he doesn't understand what he did, he didn't have the capacity to know not to do such a thing. I'm really struggling with that. This is my journey of grief. Waning for the most part, imperceptible at other times and then acutely painful, heavy and sad at others.

Later this same evening, while doing the dishes, I broke a glass. In Jewish tradition, when you break a glass or dish, you say "Mazel Tov", literally 'good fortune', the idea being that whew-it's just a thing and not a person that suffered. I reminded myself of this, muttered Mazel Tov under my breath and went to fix myself a cup of tea with fresh mint. I should have poured a stronger libation, but I've never been a drinker. I've always been more of a "fooder" and a schmoozer.

This day needs to be put to bed with all of its highlights and low moments. It is darkest before the dawn, but part of the darkness of disability parenting is (grudgingly) accepting the reality of the situation, and in my case, the inevitability-barring an unforeseen miracle-that my disabled child will never be independent in any way. It's a very, tough pill to swallow. That my nest will never be empty remains one of the big questions and challenges of my life, as I try to remind myself to ask not 'why me and my child' but rather 'why not me and my child' and double up my efforts to trust in G-d, and his plans and his reasons for ours really is not to wonder why.