This will be the sixth and final entry on this topic. Caring for a child with a chronic illness takes a level of commitment and courage that few parents may anticipate. In addition to being a caregiver you must also be an advocate. It is in that role that you may find yourself face to face with others who demonstrate some of our least desirable characteristics as human beings .indifference, intolerance, prejudice, and unwillingness to think outside the box for the sake of a sick child. We often demonize the things that we dont understand and run from them instead of opening ourselves to the possibility of a greater level of awareness and comprehension.
It is also essential to remember that you and your child are living right on the very edge of the medical professions ability to understand and often beyond its ability to respond effectively. You may find yourself feeling guilty for the long list of questions that you bring to the doctor when your child has a visit. Or, you may feel embarrassed to ask for yet another specialist referral or second opinion about some matter for which your childs doctor simply has no answers. It is also in this same frustrating set of conditions that you are the least likely to have lots of surplus energy to be assertive or put up a fight. It is sometimes far easier to settle for the doctors conclusion that there is nothing else that can be done. In fact, if you dont accept that conclusion you may be considered to be in denial about the reality of your childs illness. Or as some parents have found out very painfully, they themselves may be punished for pushing too hard, asking too many questions, or knowing too much because theyve been researching everything they can find written about their childs illness.
Nonetheless, it is critical to keep pushing and stretching yourself, the community, and the medical profession to reach for new understanding and new approaches. Those efforts are not just for the sake of your child but for all the children with chronic conditions. Every eye that is opened may now be able to see the next child differently enough to change his circumstances. Every discovery made emboldens the next explorer to go just a step farther than the last.