the mustard seed presentation

Way back in 1990, three of us agreed to do a presentation at the TASH (Association for the Severely Handicapped) Conference in Chicago. I’d done a lot of presentations but this one was different. All three of us had been the parents of kids with severe disabilities, and all three of those kids had died. That was basically what our presentation would be about, three sad stories.

Diane’s story was probably the saddest of all. Laura, her daughter had severe and multiple disabilities, and Laura had been her primary caregiver for her entire life. Then Diane got breast cancer and her doctor wanted to do surgery right away, but there was no one to take care of Laura, so Diane couldn’t go to the hospital, as her own health deteriorated. Her doctor kept threatening her that she would die and that there would be no one to take care of her daughter, so eventually she put Laura in a nursing home for a few weeks while she had her surgery and got through the initial stages of recovery. Laura died in the nursing home, and Diane felt like she had failed her. It took her years to get over the worst of those feelings. Now she was working disability rights advocacy and her was ready to talk about what had happened.

Sandra was another devoted mother. She talked about carrying her daughter, Alexis,  around all day and getting so used to doing things with crossed arms as she held her daughter that she still did things that way after Alexis passed away. 

Now, there was about six months between the time that we agreed to do the presentation and the time that we actually had to do it. A lot can happen in six months. Here is what happened to us.

First, Diane’s Cancer came back. It was in her spine and her brain, and she was dying. At first she was determined to come to the conference in Chicago and speak, but as the time got closer, things got worse. She was still alive, but just barely when the day finally arrived.

Second, during those same six months, Sandra was diagnosed with breast cancer. I took this as good reason for us to cancel. Sandra refused. Somehow, she felt a bond with Diane and felt that canceling would be letting her down. So, having had her surgery a few weeks before, she set out for the windy city. (Sandra went on to have a a lot of good years after that before her cancer returned and she died)

Third, half-way through those six months my son David was born. At first, he seemed like he might have only some minor difficulties, but by the time we set out for Chicago it was becoming clear that he, too, had a severe disability, entirely unrelated to the condition that had affected and eventually taken the life of my daughter Ananta. 

We had been given a Saturday morning, 8AM timeslot, for our presentation, and I was hoping that between the time and the topic, no one would show up to hear us. I was amazed that the room was packed. So, I introduced Sandra and she started to talk but soon she was sobbing too hard to continue, so I took over, but soon I was crying, too, and Sandra took over, and we went back and forth for the entire presentation like that. Before long, we realized many of the people in the audience, maybe even most, were crying, too. 

When I talked to them later, I realized that most of them had lost a child or had some other great sorrow in their lives. The rest must have wondered what the hell was going on.

It was a lot like the parable of the mustard seed from the life of Buddha. A woman comes to him with a dead baby in her arms, and she asks him if he can heal the baby. He tells her YES, but says to do so, she must bring him a mustard seed that comes from a house that has not known the sorrow of death, and so she goes from house to house trying to get such a seed. She returns and says that she was unable to find a mustard seed from such a house, and then she accepts that her baby is dead. 

So, I guess that is the way that it is. Most people will experience some real sadness in their lives. May be that is okay, and maybe in some way our lives are richer because of it. May be that’s what Shakespeare meant by “it’s better by far to have loved and lost…”  Our attempts at making the world perfect just seem to undermine our ability to see the beauty of our imperfect world.

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