I just watched the TV show Miracle Workers for the first time and it really touched home for me because they showed a little boy going through the same surgery that Evan will be facing in the fall. It was amazing how the parents were feeling exactly the same way that I am. It was so heartbreaking to have to watch them give their precious little boy over to the surgery team, not knowing for sure if they would get him back or not. I was wonderful for them to see him for the first time after surgery and see him pink for the first time in his life.
I have been really noticing how out of breath Evan is getting when he does simple things like walk across the room. It is hard for me to see that because it really drives home the fact that he really needs the surgery soon. It is strange to see Harry and Evan in the bath together, because you really notice how blue Evan is and how pink Harry is.
A lot was glossed over in the show about the realities of having a child go through heart surgery. One big thing is when the surgeon said it was rare for kids to die from the surgery. It is not rare and even if they make it through the surgery you will be holding your breath for a long while after because of many complications that can happen.
I was a member of an email list for parents of children with CHD but had to leave it after five children passed away in a matter of months. All of them from complications due to surgery. My heart could just not take it any longer. I ached for the parents as I prayed that nothing like that would happen to my baby.
The only thing that has really kept me going has been my faith. It is something that I have not talked about in depth because it is such a personal thing. I do know that God has blessed me with one of his most special spirits to be my child. I know that Evan's heart defect is a thing of this world. Evan will be resurrected and will have a perfected body in the next life. I know that every day I have him on this earth with me is a blessing, even though some days seem like they are less of a blessing than others. I know that while I have been through the depths of despair, these trials have made me a stronger person with a deeper faith than I would have had if I had not had such a trial. I would not wish this on anyone but I am truly not sad that these things have happened to me. Evan is not sad, so why should I be?