A Reflection by Dick Sobsey
I thought that I was ready to talk about it. After all, it had been 20 years since that snowy December night when I watched my daughter Ananta’s life slip away in small Connecticut hospital. Diane and Sandy had lost their daughters a lot more recently, and if they felt ready to talk about it publicly, I thought that I was, too. We all thought there was an important point to be made about what it is like for a parent who loses a severely disabled child, and the annual conference of The Association for Persons with Severe Handicaps seemed like the right place to tell it. So seven months before the 1990 conference, we submitted a proposal called, “The mustard seed: Parents of children who died speak out.”
Diane’s story Before telling what happened in the next seven months, I need to say something about Diane’s story. Diane and her family lived in the southwest corner of Pennsylvania. Her daughter, Laura, was about 12 when I met her and Laura had multiple severe disabilities. Diane had cared for her daughter for those 12 years without ever leaving her side for more than a few hours at a time. Then, Diane was diagnosed with cancer, and the doctors wanted to do surgery right away. Unfortunately, there was no one to care for Laura, and Diane would not leave her daughter. Repeatedly, her doctors warned her that waiting could be fatal, but the only available option for Laura was nursing home. Diane resisted and refused surgery for months. The doctors tried to make it as plain as possible, “if you do not have this surgery soon, you will not survive, and then there will be no one to look after Laura.”
So, with no alternative Diane took Laura to the nursing home and went to have her surgery. Diane survived her surgery, but sadly Laura did not. Laura passed away during her short stay in the nursing home. In time, Diane got on with her life. She got a job in an advocacy agency, fighting for the rights of children and adults like Laura, and now after years had gone by she felt ready to talk about the circumstances of her daughter’s death.
Seven months The months between submitting our proposal and giving our presentation were marked by two horrific events. Diane who had been cancer free for years collapsed at work. Tests showed that cancer was now in her spine and brain. Nevertheless, Diane was determined to make it through the remaining months and tell her story with us at the conference. As the date of the conference drawing closer, however, there was no escaping the fact that she was terminally ill and would not be leaving her hospital bed to join us for the presentation. I was shaken and unsure about whether we should cancel, but Sandy was more determined than ever. She insisted, ” we have to do this for Diane,” and there was nothing more that I could say to change her mind. Then catastrophe struck again. Within a few weeks Sandra told me that she too had been diagnosed with cancer and required immediate surgery.
As far as I was concerned, that was it. Now there was no way that we would do the presentation, but Sandra would not hear of it. She was determined to have her surgery start chemotherapy, and fly to Chicago to do the presentation, and so, that is exactly what we did.
Normally, I would be disappointed to find out that our presentation had been assigned to 8 AM Saturday morning. It pretty much guarantees an empty room. There already had been two full days of presentations, and it was a safe bet that most conference goers are content to sleep in. This time, however, I was actually hoping for an empty room because I was not sure we could go through with it. When Saturday morning rolled around, however, I was shocked to find that the session was packed.
I quickly and awkwardly explained whey Laura was not there, introduced Sandy, and turned things over to her. Tears were already in her eyes when she started to talk, and within a few minutes, she was crying too hard for her words to be understood. It was my turn to take over and bring things down to earth. For a minute or two, I believed that I could do it, but when I thought about Laura and Sandy, I started to cry, too, and Sandra had to come back to take over for me. We took turns like that for the full 45 minutes of our talk. We both cried through the whole thing, and when I managed to look out at the audience, most of them were crying, too.
I guess in some ways it was a disaster, but in another way it wasn’t. After talking to some of the people who showed up that day, I realized how many of them showed up because they had lost children of their own. Coincidentally, that is exactly the point of the Buddhist parable of the Mustard Seed for which we had named this presentation— that everyone’s life is touched with tragedy, and that is okay. I don’t think we said anything profound, and I am not sure how much of our message really got across, but sometimes tears are better than words.
We really only had a few things that we needed to say, and those things came out in an article we published later. Laura passed away shortly after the conference. Sandy had a number of good years of remission before she too lost her battle with cancer. By the time I retired, I had given almost 500 conference presentations, but this was by far the most memorable. It was by far the most painful and probably the best,
If you are interested, here are the the things that we were trying to say that day.
1. Most parents who have children with severe disabilities do experience sorrow and sadness, but what parents feel for their child with a disability is not grief. It is only when one loses a child that that one learns what grief truly is.
2. Anticipating something is not the same as being prepared for it. No matter how many times they tell you your child will die, it hurts just as much as if you had never been warned.
3. Never tell the grieving parent of a deceased child who had a severe disability that it “must be a relief” because it does not feel at all like that and those words just rub salt in the wound.
4. The loss of any loved child is equally painful for all parents, but the parents of children with severe disabilities may actually have greater challenges adjusting to the loss, because so much of their time, energy, and identity was taken up by caring for their child that they have more difficulty finding meaning in their lives when that child is gone.
Chomicki, S., Sobsey, D., Sauvageot, D., & Wilgosh, L. (1995). Surviving the loss of a child with a disability: Is loss the end of chronic sorrow? Three case studies.Physical Disabilities: Education & Related Services, 13 (2), 17-30.