Yesterday was our first time to visit this Pediatric Gastro Intestinal (GI) doctor in Santa Barbara . He had a very clean, updated office that he shared with other kid doctors. The left side was for pediatric oncology patients and the right side GI. I was thankful to be visiting the right side. Going to a place like this is depressing to me. It floods some bad memories of when my son was critcally ill. I try to ignore, supress and forget them. But when I re-enter this medical world they come flying at me like tiny, sharp darts and I am weak. I am forced to recall the unsettling reality of how unfair life can be.
When Lucas was on the verge of getting a tracheotomy and eventually a home ventilator my friend Pat visited us at UCLA. She happened to be there at the time I was "invited" to go see the 18 month old four beds down that was living on a home ventilator. While Pat Stayed near Lucas' bed, I walked down to meet this little dark haired beauty. She was lying there connected to this big, loud machine that was pluggged into her neck. It looked abnormal and ugly. I stared, trying to crack a fake smile to hide my shock. I raged inside thinking that it was okay for her to live this way, but not my child! I shlumped my way back to Pat and melted into the chair next to her. I put my head on her shoulder and started to cry. Slow tears of sadness and anger. All I could bring myself to say was "It isn't fair, it just isn't fair". Pat quietly agreed and told me something that has stuck with me. "Fare is what you pay to get on the bus."
Those were unpleasant words to hear, but ones that I needed to start ingesting. Yes, it is unfair that my 6 month old son was ventilator bound after two open heart surgeries. I was about to go through it whether I embraced it or not. That day I started aborbing the fact that "fair" doesn't exist in this world. Some children have heavy medical loads to carry on their small backs and others are untouched. That was the tiny, sharp, dart that piereced me while I sat in the waiting room.