I mentioned yesterday that we had an important medical appointment, but what I didn’t mention is that the evening prior, we got a call from the nurse, essentially saying (reading between the lines) that the specialist didn’t think he needed to be involved and our regular pediatrician ought to be able to handle the follow up. It was certainly surprising and frustrating, although after the initial shock and irritation, I realized that what really mattered yesterday were the actual test results and not the specialist’s input – particularly if the results were positive.
But I found myself unwilling – even unable – to let the specialist write us off completely. I asked if we could be rescheduled for next week – in the nicest, most reasonable way I could, because I do strongly believe that being nice will always get you more than being nasty, even when you have a right to be angry. The end result was that we were told we could make an appointment with the nurse practitioner, and maybe the specialist would also see us.
It turns out my instincts were right on. Most of the test results were positive, but there was one negative result that needs to be monitored. By the specialist.
And I realized that, ever since that first night in the ER, when I understood that my job was to be my child’s advocate, that I have had to advocate almost every step of the way. Each time I think my job is pretty much done, something comes up that requires me to take that role again.
What I didn’t realize at first was that being an advocate is exhausting. In retrospect, it should have been obvious. My good friend B. has spent countless hours advocating for her child, who’s been diagnosed as high-functioning autistic. I cheered her on from the sidelines as she cajoled, negotiated, and demanded the plan that was in his best interests, and refused to settle for anything less. And I understood at the time that it was mentally and emotionally exhausting for her to do that.
What I’ve now come to realize is that being an advocate is also a privilege. I love my children so much, and it really is an honor to be able to stand up for them and make sure that they are getting the absolute best care possible. I wouldn’t trade my role for anything!