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.
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.
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.
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