Chronic Sorrow

Losses are an integral part of chronic illness and disability. The term chronic sorrow,can be described as  "long-term periodic sadness" when you experience ongoing times of grief.   I know that it happens to us as we try to raise our son or daughter with PWS in a world that doesn't seem to notice or care.  It can also happen to our sons and daughters too, as they travel life's uneasy path.  They too, experience sadness for themselves as they see contemporaries fulfilling their lives in ways our kids can never do.

Chronic sorrow can hit you at any time without warning; it doesn't need  prompts or reminders, although these are around us all the time; it can just well up inside and make you feel vulnerable, alone, misunderstood, and cause sudden and intense grief.  Often it is cyclic and occurs when another son or daughter or just a random child you see, surpasses the ability of your child with PWS and you realise that no matter how hard you try, you cannot cure your child.

Having said that, I am not for one moment, not for a milli-second, saying you should ever stop trying to help and support your child, learn as much as you can about PWS, advocate, teach others, and never stop hoping and working towards a better understanding and even a cure.  What I am saying is that it is ok to grieve, ok to accept that grief doesn't ever go away, and ok to be kind to yourself when it hits.  I hope that the following article helps.

Chronic Sorrow is a term coined by sociologist Simon Olshanshy to describe the long-term reaction of parents who have a child with a disability. This pervasive reaction is often not recognized or understood by those around the parents--professionals, family and friends. These feelings of chronic sorrow are normal and to be expected and accepted, given the life-long implications for the family and child. 
Many factors can affect the intensity and exhibition of chronic sorrow: the parent's personalities, the severity of the disability, the nature of the disability and the adequacy of support and services provided. 

Chronic sorrow does not mean that the parents don't love or feel pride in their child. These feelings, and many other feelings, exist alongside the sadness. It is as if many threads are woven side by side, bright and dark, in the fabric of the parent's lives. They co-exist; they do not blend into one color, or feeling.  

Because ours is such a "can do" society, there is pressure on parents to quickly put their feelings of sadness away or deny them. Parents are told to "think positively" and "to get on with your lives." They are told that God has "selected" them to receive this special child because they are such strong people.  

These kinds of comments, while well meant, deny the validity or parental long-term grieving. The discomfort of observing pain in those we care about can be part of the reason for such comments from others. 

Grieving, however, is a process that takes time, often years. It's a prickly bush that one must go through, not jump over. However, there are ways to support the process of grieving. Most parents find support in a community of people who understand because they, too have lived the experience. It is lonely to be the only family on the block with a child with a disability. Being part of a support group or organization helps to combat feelings of isolation. 

Engaging in personal activities that do not center on the family member with a disability can help increase feelings of competency and self-worth. Counselling, especially at times of significant stressful milestones, can be useful. 

Chronic sorrow becomes a permanent part of the personality structure of most parents who have a child with a disability. It's a normal response. Its thread narrows and widens depending on life situations; most often it is accepted with courage. And, although permanent, if is not the dominant force in interactions with our children.  
The dominant forces are love and feelings of connectedness to them.  

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The article comes from the Hydrocephalus Association Newsletter, Spring 1998, page 9, and was originally adapted from Meeting Ground, a publication of the Courage Center and is used with the stipulation that the original source be credited. 
For more information on the Hydrocephalus Association: 
870 Market Street # 955 San Francisco, California 94102  
            (415) 732-7040        
Website http://neurosurgery.mgh.harvard.edu/ha   
Email: hydroassoc@aol.com  

Men & Grief

While we've been on the topic of grief recently, I was reminded of an article about men and grief that  I once asked for to go into our newsletter many years ago now.  I wanted to know why some fathers grieved differently from mothers and why men grieved differently from women.  Bear in mind this was a while ago, and I'm quite sure that, generationally, things have shifted significantly.  But if they haven't, for you, then maybe this might help.  You will also notice that in this story diagnosis had been late, as it still can be in many countries and there was no help with feeding.  This family really struggled.

"I had been looking forward to the birth of our first child. For months I had been fascinated by her movements insider her mother; at the beginning little flutterings and then as the months passed, stronger, more vigorous movements. It was exactly what one would expect of a strong, healthy baby.

I was present at my daughter's birth, an experience that defied words All stories and all films that had the birth of a child in them made much of the initial birth cry. I was absolutely unprepared for our experience: she arrived without a sound. I have a clear picture of the doctor holding her up, her little mouth shaped like a cry — but there was no sound. I am unable to describe what came over me at that moment — words like shock, disbelief, do not even hint at what I felt.

My overriding reaction was what I can only call resignation; whatever would be would be and I had no power whatever to change any of it. I was devoid of feeling. That stayed with me for moths. The only thing that broke through my lack of emotion in those early days was a kind of subdued elation when our little girl would actually swallow milk from an eye-dropper which was the only way we could feed her. Eventually our efforts weren't enough and she had to be tube fed at hospital.

At work I was an automaton. I have little recall as to whether I was happy or sad, warm or cold; I had no appetite. I used to enjoy a drink. I never tasted the stuff from this time for months afterwards!

As the hospital testing continued to determine what the condition might be, I became aware how differently my partner was responding. She saw all tests as a challenge. I was indifferent to the various tests and as each eliminated this or that possibility she saw all these as major victories. The diagnosis at this stage was benign hypotonia.

I was conscious that I was unsupportive. My partner's hopes were constantly undermined by my scepticism, actively negative and yet, I could not break out of the "what will be, will be" mindset. While my wife wanted to talk about progress and development and testing, I just wanted to be left to myself. I had closed off — little outside myself held any interest. I "escaped" into Wilber Smith.

A friend was a good listener, but I could only share at a superficial level. Talking was not helping as the overriding feature of "all this talk will not change anything" undermined any chance of healing.

The second stage was marked by my waking one day and noticing the sun was shining. I felt warm for the first time in months. This time pin-pointed another stage: anger. Wild mood swings, optimism (that our little girl would be "normal," that she would outgrow this strange condition) followed by depression caused by the uncertainty of what the condition would mean long term. I cried more now — most nights. Sleep was full of curious dreams and I would wake up exhausted. But there was less of "what will be, will be." By now our little girl was drawing me more and more into her life. I felt I was able to share more of my partner's hopes. The future seemed much less fixed.

Eventually our daughter's strange condition was diagnosed as PWS. It took me a long time to accept this. I read all I could about this syndrome — the information coming from my partner's research; a book here, a paper there, an article somewhere else. After a time I noticed a shift in what I was feeling. The crippling resignation had given way to a hope that what was now, did not have to be in the future. My wife was already planning counter measures for our daughter to run against the classic symptoms — extra help for learning, exercises to firm up the little muscles, games to keep her stimulated.

Sometimes it seems a long time ago; more often it feels like yesterday. A kind of emotional evenness came when she was five and a wholeness at seven. The anniversary is still hard, but my partner eases me through it each year.
Yes, we men do cope with grief differently. Education should enable us to cope better."