We made another trip to the ACH for Peyton over the weekend. He landed in the hospital on Saturday morning much to his chagrin, but it was a short stay fortunately. After some bowel rest and some TLC he was discharged again yesterday afternoon. He has picked back up where he left off, hardly missing a beat, but there is an undercurrent of anger that he seems to have no control over his health! He is a bit more volatile the last couple days, and has been testing me, all the while apparently trying to remind himself that everything is ok in spite of what keeps happening. I can't imagine what must be going on in his little mind.
I have been writing a post in my mind for a long time to fill you all in on two things: 1 - what we were told by the genetics counselor, and 2 - what it has been like to be in the hospital with Peyton. I cannot find the right words for either, which may provide you with a clue as to the impact of both on my being. There is little that leaves me without words, but both of these have left my mind in a whirl, with no apparent way to bring it to resolution.
The reason I am reminded that I have yet to post these thoughts is that we meet yet again with the genetics specialist tomorrow afternoon. I want him to say everything will be ok and that what happened to Drew was a fluke, but I know better. I want him to be able to say that they have found an incredible cure and that no other children will ever die from this horrible disease again, but I know this is not the time he will say that. I only know that this meeting will remind us that Drew is gone and that there is nothing we can do to bring him back. It will remind me that I want to make sure others don't have to hurt the same way we do, and that I need to find a way to help others get through their experiences. And it will remind me yet again of God's role in my life and that He will never abandon me. How many times I have wondered what it would be like to be able to watch my little Drew play with his big brother and what he would be doing now, but I always find myself returning to reality with both a sigh and with thankfulness that I had the privilege of knowing him. I love you forever Drew.