Be the Change

Multiple degenerative diseases, kidney transplant, wheelchair, death, divorce, anything else? In the days that followed that January appointment in 1999, my husband and I clung to whatever hope we could find to get us through the day. We thought maybe Michael’s case would be different. Maybe we misunderstood the information. Maybe Michael would experience a miracle. During those initial weeks of anger, sadness, acceptance and then reality it was disappointing to us that no one from the clinic called to follow up. I just assumed that someone would call asking how’s it going, do you have any questions or simply how are you coping with the fact that we just told you that your son has a disease that will most likely end his life in the next few years. Even as we left the appointment that day I remember the only person left in the waiting room was a cleaning lady dusting and arranging the magazines. Although I was fully aware that she was from housekeeping, I had this urge to say to her, can YOU tell me how we are going to get through all of this?

In the years that followed that infamous appointment, those things that we contemplated initially did come true. Michael’s case was very different. Consistently he stumped medical staff by his unique symptoms and rare diagnosis but equally he amazed everyone with his courage, strong will and determination. Everyday we experienced a miracle. Michael himself was the miracle, teaching all of us to love and serve in a whole new way. We became the family who challenged doctors, nurses, clinics, emergency rooms and hospitals to support us not just medically but emotionally, embracing these basic truths. We were a family with a son named Michael who had SIOD. However, first and foremost we were still a family and our son still wanted to be just a boy doing all the things boys do. Often when I looked at Michael's doctors and nurses I thought: You will need to enter into a relationship with us in order to care for us effectively. SIOD will not own us, it will not define us, and it will not break us. We will not be just one more statistic. That truth spoke out loud again, many times, is now the foundation for Be the Change.