It's two days after Braden's 13th birthday - and my head is filled with thoughts about his future. Who will he marry? What will he choose as his career? Will he ever learn to clean his room? But 13 years ago today, my thoughts were very different. Will he ever be able to come home with me? Will I ever hear his first word? Will I ever see his bright eyes look into mine again?
Two days after Braden was born his doctor told me that I needed to prepare myself to lose him. He felt that there was not much hope for my newborn baby boy.
It was true, he was very sick. He was born 6 weeks early and had trouble immediately after he came out of me. But when I looked at this 7 pound 1 ounce baby...All I saw was a beautiful boy, who I knew was going to be okay. To me Braden was perfect.
While this doctor was trying to prepare me for the worst, he also knocked any hope I had that he was going to overcome the battle that lay before him. I wasn't ignorant of the fact Braden was struggling....The tubes and ventilator were hard to miss. But what I felt when I saw him and touched his tiny fingers and toes - never filled me with fear.
Braden spent two weeks in the NICU, and obviously did overcome his battle of prematurity. I refused to listen to the doctor, and chose to stand on my own hope for my son. What was my alternative?
Sometimes the medical profession gets lost in its text book terms and doctors forget that they are working with actual people, not just statistics. I have met a handful of doctors who have taken the time to get to know me and my family....and it's THESE doctors who make a real difference.
But it's also our responsibility, as patients, to make a difference for the doctors. To remind them we are human, that we are intellligent, and we do care about our own condition and how its affecting our lives and the lives of our children. To remind them that a Higher Power is in control, and that each patient is a human being, not a diagnosis.
It's our responsibility to stay informed, to question our doctors, and offer respectful yet directed feedback to them, to help them help us, and to help them be better doctors for all of their parents.
It's all a part of Thriving with NF.