Life is full of personal tragedies. Events that bring great sadness and intense grief are inevitable. Those who have experienced them often discover the anniversary phenomenon. When the event was a death, this may occur on the anniversary of the death, or it may be on the person's birthday.
Julia Grace was born on June 5, 1989. So today she would have been 24 years old. That is how I have thought about it every year. She was little past three months of age when she died. Sudden infant death syndrome (SIDS) is surely one of the most wrenching things that can happen to a family. Parents blame themselves, or each other. The sense of loss is overwhelming.
I have never thought of myself as an emotionally open or demonstrative person. Before that day in September, I think I had not cried since I was a small boy. But Julia's death began a period of many months during which there did not pass a single day on which I did not, at some point, find myself in tears.
Donna, my wife, blamed herself. I knew that was a normal reaction. I devoted a lot of time and effort to trying to convince her that it was not her fault. At the very least, I wanted her to know that I held her blameless. SIDS has torn apart many married couples. That would not happen to us. She sought counseling and found a support group. It seemed to help. And she read books. When Bad Things Happen to Good People, by Rabbi Harold Kushner, was very good. And When Mourning Comes: A Book of Comfort for the Grieving, by William Silverman and Kenneth Cinnamon, also offered some insight and solace.
I briefly perused the books. The support group was not for me. I didn't want to talk about it. Not about the death, not about my feelings. I was not shutting out the event or pretending the grief wasn't there. I just didn't want to talk about it. I would look inward. Introspection was my nature. I would wrestle this demon on my own. I knew that every time I pinned it, it would get back up. I also knew that it would eventually realize it could not destroy my inner peace, and it would give up.
I was wrong. It has never given up. It comes around every June 5th to remind me how I felt that day when we found Julia Grace in her crib, motionless, not breathing, with a slightly dusky color. She had not been ill in any way. She was an extraordinarily pleasant infant. She was easy to care for, fussed little, cried less. Other infants, including her older sister Diana, could be fussy and cranky even when they were entirely well. Diana didn't sleep through the night until I don't know when, but it seems it was long after that should have happened. And she was a bit colicky. Not Julia. She was placid. When she wasn't happy, she frowned.
Donna and I couldn't help finding this amusing. It was just part of the whole package. A very pleasant baby who let us know, on the infrequent occasions when she was out of sorts, with a frown. No screaming. No fussing. Just a frown.
I read a lot about SIDS. I found a research neonatologist, Robert Guthrie, who could tell me what was known about the syndrome. There was (and still is) much more unknown than certain. I invited Dr. Guthrie to the small town where I was practicing emergency medicine at the time to give a lecture on the subject for the hospital's medical staff, most of whom knew as little as I did about it. They all came, even the ones whose medical specialties would never bring them into contact with SIDS babies or grieving parents. I thought it was because they were interested. Only over the subsequent years did I realize they were there to show their sympathy with my sense of loss.
I learned about how people don't know what to say. I was very fortunate, though, in that I was surrounded by people with enough insight to know it didn't matter what they said. All they had to do was ask, "How are you doing?" I would talk if I wanted to, and they would listen, and they knew that was the right thing to do. Mostly I just said the pain was diminishing very gradually, and I was hopeful that eventually life would get back to normal.
Equally fortunate was the absence of people foolish enough to say, "I know how you feel." Because no one does, unless there is truly a shared experience. And I guess that's what support groups are for. But I didn't care about talking to people who really did know how I felt. I was entirely satisfied just to know that my friends cared about how I felt, even if they couldn't fully understand it.
Always one to try to look on the positive side of things, I must say that was quite a challenge. I was quite sure there was no positive side, no redeeming virtue to this event in my life that I would have given anything to have been spared. And then I found myself talking to a mother whose young infant had just died of SIDS. Found at home, EMS summoned, resuscitative efforts unsuccessful, as they almost always are. And this young woman was beside herself with grief.
I knew how she felt. What were the odds? How likely was it that the doctor at the hospital to which her lifeless infant was taken would really know what she was going through? I knew she wouldn't remember much of what I said to her that day. So I focused on just two things. First, I told her mothers blame themselves, and it was important for her to know it hadn't happened because of anything she had done or failed to do. Second, I said it was important for her to know it hadn't happened because she was being punished for not being a good enough mother or for anything she may have done in her life that she regretted. And I told her if she wanted to talk to someone who could give her medical information about SIDS and also understood what she was going through, she could call me. Then I called her pediatrician and set in motion the series of events that must follow any sudden, unexpected death. I hoped the medical examiner would be as caring and respectful as the one who had investigated Julia's death.
Over the years since, this scene has been replayed too many times, although the incidence of SIDS in the United States has declined by about 50% since then. The teaching of parents to put infants to sleep on their backs may be playing a role, although that, too, is incompletely understood.
Shared experience makes the difference between sympathy and empathy. As I look back over the last 24 years, I still would give anything not to have had the experience that enables me to feel genuine empathy with grieving parents. But I cannot change that, and so I will make the most of it by using it to help others when I can.
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