My head is swimming with information this afternoon. I'm once again faced with making an important medical decision regarding Peter's care. And, although it will be a mutual decision between myself, my husband, and Peter; I know that I will likely have the most influence on what we decide. In our family, I'm the one who takes on the overall care and coordination of Peter's care, handles all the insurance issues (and there are many), and does nearly all the transporting to and from his many appointments. Little brother often rides shotgun at all the clinic visits as well!
We are fortunate to have three excellent craniofacial teams within about an hour of our front door. Being the control freak that I am did not lend itself well to participating in a predetermined “team” that I didn't get to put together. The fact that a doctor different from my choosing might be part of the team that treats Peter did not pass my "Mommy Gut" approval. I wanted Peter to always see the same ENT, the same oral surgeon, the same cranio surgeon, etc., not just who was doing rotation for the month. So, I have created my own group of "Peter Specialists" where, of course, I'm CEO (there’s that control thing again!). This obviously has good and bad points.
Over the years I have gotten better at trusting Peter's specialists, in part because they have all proved themselves more than worthy of being part of "Team Peter." Together we have watched him grow and mature, dealt with his complexities with care and concern, and continued to build a relationship of mutual trust and respect. As Peter gets older, I will try to teach him how to begin taking charge of his own care. I'm guessing there might be a bit of a power struggle though. After all, he is my boy!
We are fortunate to have three excellent craniofacial teams within about an hour of our front door. Being the control freak that I am did not lend itself well to participating in a predetermined “team” that I didn't get to put together. The fact that a doctor different from my choosing might be part of the team that treats Peter did not pass my "Mommy Gut" approval. I wanted Peter to always see the same ENT, the same oral surgeon, the same cranio surgeon, etc., not just who was doing rotation for the month. So, I have created my own group of "Peter Specialists" where, of course, I'm CEO (there’s that control thing again!). This obviously has good and bad points.
Over the years I have gotten better at trusting Peter's specialists, in part because they have all proved themselves more than worthy of being part of "Team Peter." Together we have watched him grow and mature, dealt with his complexities with care and concern, and continued to build a relationship of mutual trust and respect. As Peter gets older, I will try to teach him how to begin taking charge of his own care. I'm guessing there might be a bit of a power struggle though. After all, he is my boy!
We would love to hear your comments! How does your family deal with making tough medical decisions? 
Dede, I too struggle with being the decision maker, and at the same time I wouldn't have it any other way. It is overwhelming to say the least. I know that Tate appreciates this quality in me, and he truly trusts me. I will say, I hadn't thought much about when John is mature enough to contribute to the conversation...I need to start preparing myself now!
ReplyDelete