Growing up dying.......

Growing up dying.....that was the title of the lecture I attended this morning. A 36 year old woman who has survived Cystic Fibrosis (CF) and two double lung transplants came to PCMCs pediatric grand rounds to tell her story. I have been looking forward to hearing her speak since the schedule was released and I was not disappointed. She spoke of spending her youth being different and living in a hospital for months at a time. The amazing part about her is that she never looked at her diagnosis as "a curse" or as being unfair. She always thought that being born with CF was like being given a special power that she was supposed to use to make a difference, and boy did she. This lecture was attended by many physicians, social workers and nurses. She told us of the wisdom her disease has given her, how she was able to appreciate all of the things that many of us take for granted. She also spoke of the disabilities that were imposed on her by well meaning family and caregivers. In early years, she was never disciplined because her mother thought that she would not be alive for long. In later years, she struggled to learn tasks that come second nature to us, she couldn't do something as simple as making rice because she was always "protected" in her bubble. She speaks around the nation, telling her story and challenging healthcare providers to change their ways of providing care, involving families and patients more in their prognosis. It wasn't until her late teens that someone actually sat her down to discuss her prognosis and, of course, this was quite unsettling news. She then spent the next years mourning the loss of things she would never have, but this mourning helped her to move on and make a difference. And now look at her, SHE SURVIVED TWO double lung transplants! As I waited in line to speak with her after the lecture, a surge of emotions washed over me. I was so grateful to this living, breathing woman for giving all of our children a voice. Yes, I am trying to do my part, but in ways, people still just see me as the greiving mother. Today we had another survivor telling her side. She talked of being prepared for life or death, it was the in between that scared her. She discussed how she worried more about her parents than she ever worried about herself. There were times she would even hide her symptoms, thinking that she could ease the pain of her parents. I know this is long, but one last thing that I am very excited about. We all know about DNRs - DO NOT RESUSCITATE- this is a form we fill out for ourselves, our parents and sometimes our children. But this young woman is part of a movement to change that DNR to a AND- ALLOW NATURAL DEATH. I feel like this would be a huge step in the pediatric world, we all want to feel as though we have done all we could for our children and somehow the idea of withholding treatment or NOT RESUSCITATING leaves a sick feeling in all of us.

Also, I spoke at PICU parent hour again today, it was great. Many of the families were heart families, so I was able to relate quite a bit to their situation. We all talked about the struggles of hospital life, but also about making sure to enjoy those moments of joy and love. I was able to talk about Bridger (which I LOVE) and tell a little about our story. Telling it out loud always makes me appreciate everthing that I had and have, I hope that it helped these families realize the blessings in their lives.