After that first phone call the next few weeks I spoke a few more times with the doctors. They told me again the same information as before, but I didn’t care, I waited my whole life to hear what they were telling me and I would listen as many times as they wanted to tell me. I think that’s mainly because the first time I talked with them it all felt like a dream and it took a few times talking to the doctors for me to realize “ok yes this is really happening”.
The first time we had a group discussion with me, the assistant and a few of the doctors as they talked to me, I kept telling them “if you need anything from me, I’m 100% in!”. The doctors explained about tests that they would like to do and that they’d like to talk with me and get more information from me, I kept saying “ok I’ll do it, I’m in”. At one point they told me to think about it, to which my response was “I’ve had 29 years of thinking about it and I always said that if this ever happened I would do whatever I could do to help, so I’m all in!”.
After talking with the doctors and discussing my medical history, most of which they knew of from this blog, I realized something, I know my medical history like its the back of my hand. I’ve grown up “studying” my life, I tried to absorb as much information regarding my surgeries and what doctors have told me, so when these doctors asked me questions, I started to realize at just how quickly and how much information had been absorbed. They seemed pretty impressed too that I didn’t have to consult my medical records that much, some things I did, but for the major things, I would tell them “yes that happened” or “yes I have that”. I know its my life, and of course I should know all of this information, but it was as they were talking to me that I realized just how into it I was to confirm everything, to finally have someone or something to compare my life too. It was an amazing feeling to finally have that opportunity to start to share all of this with others.
Since having started this process with the doctors, I have learned that not only have the doctors been reading my blog to learn more, but also these other families have found my blog and have been reading my posts.
Finally my blog has become the platform that I hoped it would, this is just the beginning to a very exciting adventure!