I don't want my son to be sick. I don't want my son to suffer. I don't want my son to be different. Unfortunately this is my reality and sooner or later I'll have that conversation with Henry's doctor that I've been dreading. The one where we discuss how much longer Henry has until he needs a transplant.
It is so hard to live your life normally with that looming in the background. So to cope I don't think about it. I give Henry his blood pressure medicine 3 times a day and don't think about it. I take him to his doctors appointments but don't think about it. I've spent too many months not thinking about it. Until now.
We've recently bought our first house and we want to do a photo wall in the living room. In our apartment I had never hung any pictures of Henry up and I never thought about it until now. Tonight I made a plan to look through my hard drive and pick out the pictures for the wall. I found myself looking through all the images of henry in the hospital and throughout his first year and I couldn't keep the tears from streaming down.
I forgot what it was like. Well not really forgot just allowed myself to not think about it until tonight. I only talk about how good he's doing and how far he's come. I don't want to think about the future, the transplant, the sickness, the decline, the reality that is bound to hit me at some point.
2010 was a great year but I'm ready to face 2011 head on. My goal this year is to find some peace with this disease. To not ignore but embrace. I'm taking this blog to a more personal place this year and I hope you all appreciate that and take the year long journey with me.
I'm so sorry for letting this website lay stagnant for so long but I think you all understand. A wonderful NICU nurse once told me that when you have a sick child you go through the 5 stages of grief. She said you need to mourn for the life you thought you would have and accepting the disease and what lies ahead is difficult. She also explained that everyone mourns differently and you can feel a million things all at the same time. I'd like to think I've checked denial off the list but I'm sure at some point I'll come back to it. For now I'll focus on acceptance.
"We must accept life for what it actually is -- a challenge to our quality without which we should never know of what stuff we are made, or grow to our full stature." - Ida R Wylie