Last week I wrote about the feelings of unfairness, anger, and envy that can be experienced if your child has a chronic illness. These feelings are experienced because most of us believe that children should be exempt from such suffering and we simply cant tolerate the notion that they have to go through pain, discomfort, or inability to participate in important activities. Here you have to be careful not to project or impose your own notions of what this experience is like. No matter how terrible this might seem to you, your perception is colored by your own experiences not necessarily your childs. If you have not experienced such an illness then where do your reactions come from?
Be careful not to unquestioningly accept your own ideas about what this might be like and instead ask yourself where the objective evidence is for your conclusions. This is where you can help yourself and your child tremendously by getting information on the illness from every source available, whether that be written materials, attending a support group, and / or talking directly to someone who has gone through it. You may not only discover that the experience is not as bad as you thought, but you may also discover that there are ways of helping your child view the experience that may help you both.
You can undoubtedly have an enormous positive impact by virtue of helping your child find ways to participate fully in the aspects of life that are most open and available to him. Again, this may be a stretch for you because it may require that you engage in activities that are not among your favorites or in your skill set (e.g. reading, drawing, performing or listening to music). It may also require you to explore totally unknown territory in order to discover what is possible. Once again, this is where time spent with others who are experienced can be so valuable.