In 1983, our first child Tara Elan, died at the age of 11 months, from Spinal Muscular Atrophy (SMA Type1), otherwise known as Werdnig-Hoffman syndrome.
In 1984, our fourth child Tyler Sydney, died at 14 months from the same disease. Our two middle surviving daughters are healthy.

The phenomenon of child loss is not talked about much. And this is understandable. But it deserves a re-visit once in a while to remind the world that there are silent mourners all around us, parents who go to work, and go to the mall, or to the cottage, or to visit relatives in far away places – and remain true to their inner feelings all the while. The burden of loss goes undetected by most other people. Parents learn along the way that the walls of pain get further apart and less thick…but they never go away. There are always ‘triggers’ that force moments of sadness, tears perhaps, and desires to be alone. Smells, mental images, situations in everyday life, all may trigger strong emotional feelings or display. The ‘beehive’ of emotions parents feel may contain denial, anger, shame, guilt, despair, detachment or futility.

Some researchers say men and women grieve differently by nature; that is, that they inherit a genetic disposition that results, in circumstances of loss, in quite different behaviour. Men, for example, hold in their emotions, keep busy, and try to ‘fix’ things to make their and their partner’s lives better. They may experience more guilt about things they should have done to prevent or prolong the loss.Women show more outward emotion, and form tight supportive networks with close friends and relatives, and perhaps save the clothes or toys or other items that once belonged to their son or daughter. Both parents may feel inadequacy and shame as well.

Another argument is that all these grieving and coping differences between men and women are acquired through socialization, within their own families and communities as they grow to adulthood. Or, as I suspect, it may be a combination of nature and nurture in the bereavement process that predicts normal trajectories of coping.

Coping may have negative consequences. Hypertrophied grief, in which the parent cannot escape intense prolonged emotions and which interferes with the ability to carry on with home and work, usually requires professional intervention. Inhibited grief, in which the parent cannot show or feel any emotion, and develops an outward ‘mask’ of flat affect, may similarly require professional help. Finally, drug and alcohol dependency may emerge as a coping strategy for some parents, which may set up a reciprocal relationship between depression and alcohol/drug abuse, giving the person the false belief that one prevents the other.

Employers often make the mistake of thinking the employee who has experienced the death of a child will be able to get back to normal work in a matter of weeks. Colleagues at work may also not know how to react when Bill or Sandra return to work from an extended period away. Financial loss may accompany the child loss experience, thus contributing further to the anxiety or stress of day to day living.

And Grandparents will grieve along with the parents, with similar feelings of guilt, numbness, denial, etc. People forget that Grandparents also have these feelings and need to develop effective coping mechanisms.

Coping effectively requires that the pain of child loss be experienced. Movement to a workable resolution will not occur, until the walls of pain have been adequately felt and dealt with. Family, close friends, support groups, clergy, nurses and physicians – are examples of persons parents should maintain close to them. Crying, wailing, sobbing, clinging – are all normal parts of grieving. And people close to you should understand that.

Things you do not say to a grieving parent are things like “I know how you feel”, or “You can always have another child”, or “You’ll get over it”. Or, if he’s a man, “Keep a stiff upper lip”. No one but the grieving parent knows how he/she feels.

Which leads into the next social issue of the bond between mother and father. Divorce rates in urban areas in Canada due to the loss of a child approach 70% within five years. One complicating factor is that each parent may be grieving at a different ‘rate’ towards resolution. This may cause over time communications to break down. Because sexuality can be drastically affected between parents by a child’s death, couples may separate or divorce without actually knowing the underlying reasons why. Unless this is pointed out to them by a professional grief counselor for example, divorce may occur and yet both partners still inwardly love each other. Of course, if separation is “nasty, brutish and short”, love may diminish abruptly. You may still remain in contact however, for the sake of other children.

Children dying is the wrong order of life. The norm is for parents or Grandparents to die first. The coping process from loss of any kind has been experienced probably for hundreds of thousands of years. Is is not new. But it is new for first-time child-loss parents. From anguish that can be prolonged, to a functional return to a ‘normal’ life, complete with happy moments and new adventures, coping continues but never disappears. If you are spending moments with a child-loss parent, and he/she suddenly bursts into tears or slowly withdraws into their own space for a while, remember that hugs work miracles, and also soothing words that don’t judge.

I once felt down and really cheated in 1984, until I saw a mother of not one, or two, but of four sons she lost in WWII, and who, at the age of about 80, laid four wreaths in their memory at the national Remembrance Day service in Ottawa. Then it really hit me. I wasn’t at all alone. Nowhere near it. I asked myself “How has she survived all this time, having lost four sons?” What stamina. What courage. What love and devotion. Some day I would like to meet her.

Meanwhile, the day after my son died, I sat down against the wall in his room, and for some reason wrote a poem:

Tyler, My son

He has shown me love,

He has taught me the value

   Of tears and laughter, and peace of mind.

He has stood out as a measure, strong

   Against my failings.

He has made me sense the crucial need

   For friendship and common purpose – even among strangers.

He has clarified the imperative of individuality,

   In an often mechanistic, controlling society.

He has played out a symphony written by another’s hand,

   Yet received a standing ovation.

He has learned about our world with the calculated interest

   Of a visiting inspector,

And now takes with him the knowledge that

   We are not so great;

   We do not have all the answers;

But that we are capable of compassion. We can be moved by crisis

   To help others, however clumsy the attempt may prove to be.

He sat with me on the grass, he saw the bugs and the birds,

   And stared with me at the clouds.

We have wandered and wondered together.

There are no losers, he says,

   At journey’s end.

But we must pick up the pen, the torch, or the shovel,

   And carry on.

In Tyler’s memory, this I now do.