Lesson about caring...

When we started our journey in this "medical world", we began to find how difficult it is to navigate when you don't have an M.D. behind your name. We were fortunate to have the most wonderful OB/GYN and we still love her dearly. I remember the day she brought in a neonatologist to meet us before Little C was born. I liked him. He seemed nice. I kept thinking, do we get to meet more so we have an option? Well, you don't really get an option when your baby is born early. Strange huh? We spend tons of time seeking out the right peditrician and the right dentist, but when it really really matters, you get what you what get. I have to say, we were very fortunate. We had a group of 4 neos and we loved 3 of them. Not bad. The entire 7 months, Little C lived in the NICU, we counted on them to take care of him, save him. During that process, a bond was formed- a bond between patient and physician. This bond has allowed us to be part of every decision for our child. It has also helped us see how important having the right doctors in your life is. Over the past week, my love and faith for the team that did Little C's transplant has been tested and somewhat damaged. We never wanted transplant for him. It was the result of an error and necessary to save his life. We were not given the opportunity to shop around for transplant centers. Again, we got what we got. A big pill to swallow and something I continue to struggle with. I remember the first day the Transplant team can into my room. I didn't feel a connection with any of them. More of anger that they dare suggest he needed new organs. I remember using every once of strength I had, not to cry in front of them- a sure sign of weakness. I was determined not to let them see me sweat! As Little C worsened and transplant was straight ahead, I knew this was our new team and I needed them more than they needed me. The morning of his transplant, balling, and unsure if I would ever see my son alive again, I begged them to save him, begged them to bring him back to me. begged them to make him better. No pride, no face of braveness. Just pleading. This past week, I began to beg again. Beg them to help us cure this latest aliment. But this time, we have a connection and I loved them. This time, I had faith they too wanted to help us. I thought this time, we were all on the same team. After living in "their house" for 8 months, I thought we were friends. All the hugs, all the shared tears. I learned this week that, as the mom of a very special little boy, I needed to believe they loved him as much as I do. We have so many doctors here at home that tell me everyday that they love him, that they are willing to do anything to help us and to discover that the people who saved his life don't feel that way is devastating. I will never look at them the same. Our main GI doctor here at home said this week with tears in his eyes- "they have emotionally disconnected from him". Have you seen him? Have you seen those eyes? How could we be just a number to them? How could they not remember how special that day was. The day he came back pink and with fresh chance at a new life? When do physicians learn not to care? Maybe they have to to keep their sanity. It has been a real eye opener to me. I thought they felt the same way about us that we felt about them. I was wrong. I am angry, angry that they don't love him anymore. Angry I have to fight to make them help me. Mostly, I hope this past week doesn't make me weary of my other physicians. I am blessed to have docs who truly do love us and want everything for Little C. I will focus on their love and continue to fight everyday for my little boy.