Caring for a child with a chronic illness places many demands on a parent. While the practical challenges may be the most exhausting physically, they may not be the hardest part of the experience. In fact, the practical challenges can often be shared with others who want to lend a helping hand which then lightens the burden for the parents.
However, the more demanding challenge may be the emotional side of the situation. When we embark on the journey toward parenthood we tend not to focus on the scary possibilities of what might go wrong during pregnancy, birth or childhood. If we did, we might decide not to have children at all. As parents, we also quickly discover that we have an intense need to protect our children from harm and shield them from unhappiness as much as possible. As I have learned from a woman whose child has severe acid reflux and a host of complicated food allergies, chronic illnesses in children often alter the day to day experience of the child so severely that they are excluded from some of the most anticipated and joyous of activities.
To watch your child have be excluded from normal childhood activities and fun is agonizing, especially when there is little expectation for improvement or change. If you can imagine how it might feel to experience the disappointment of your child missing the baseball or swimming season because of a broken limb, try to then imagine what it would be like to know that they may never be able to participate again and what that might be like for the child to spend “a lifetime” on the sidelines.
The tension of trying to find some way to soften the disappointment or explain why this happened to them can be excruciating. It also takes enormous vigilance on the parent’s part to anticipate the upcoming complications and find workarounds for those situations that might otherwise be extremely agonizing. Despite the emotional distress of the parents, it is essential that they try very hard not to identify so totally with the child’s pain or their own distress that they overlook the need to teach their child how to cope with his or her illness as effectively as possible.
Over the next few weeks, I will focus on some of the disturbing feelings and thoughts that parents often experience and look at ways to neutralize those for the benefit of themselves and their child. Please feel free to comment or send your experiences to be incorporated in the upcoming blogs.