As the parent of a child with disabilities, it’s very easy to get wrapped up in our own issues and challenges. Understandable. After all, we deal with those issues and challenges daily. Doctors. Insurance companies. Government bureaucrats. School administrators. Respite care. The list goes on.
But occasionally we get a reminder that there are worse possibilities, and there are people who must face those possibilities. Last week came one of those reminders when friends of ours lost their special needs child. Like our child, he had multiple disabilities, but unlike ours, he was a medically fragile boy. Over the years, his medical issues became more serious, demanding more and more of his parents’ time and energy, reaching the point where they had to take shifts at night to maintain vigilant observation of his conditions.
Last month he was back in the hospital, and it was determined that they had to make a decision to either let him go or maintain a further deteriorating quality of life for him. They made the difficult decision that all of us hope we never have to make. Before the week was out, he was gone. Through the years, they did their utmost to assure him of the best life possible, but in the end, medical issues were just too overwhelming.
Yes, we have challenges with our child. But to date, none of them have been life threatening. We continue to enjoy the small moments of accomplishment and the occasional smile we can elicit from him. Caring for him and attending to his quality of life continues to provide significant focus for our lives.
We are challenged, but that means that life is going on. and compared to the loss experienced by our friends, our challenges pale. Positive experiences, however small, become more important. It’s a different perspective that we need to keep in mind if we start to feel sorry for ourselves.