It has been a week since we decided to schedule surgery with Dr. Genecov. The night I wrote the blog post about our decision I had butterflies in my stomach as I hit "Publish Post." I was so worried about whether or not we had made the right decision, and telling everyone made it feel so permanent- even more so than scheduling the surgery!
One week later, J.P. and I are both at peace with our decision. It is a decision no parent should have to make, but we feel we are doing what is best for Ben.
I wanted to share a message that I got from a mom whose son had "the big surgery." Her message made me feel so thankful that we had other options, and that we decided to do the limited CVR procedure. Here is what she said to me:
I believe whole heartedly in your decision and if this had been an option for my son I would have done it in a heartbeat. For days after his surgery I kept silently killing myself with the question of "how could I have done this to my baby?" Granted, now he is healed, but I do believe they remember pain. Also, one of the key points my doctor told us was that there was still a risk with the full CVR of having to go back and "tweak things" so to speak. GO BACK... Never. As for the scar that stretches from ear to ear, I was just talking to my husband the other night about it when I realized "what if he starts going prematurely bald?" I know that is a silly thing to worry about, but it's a worry none the less. I know this may make me sound like a horrible mom, but I will never do this to my baby again. I am glad that I was able to help him lead a more "normal" looking life, but seeing my baby helplessly in pain was just horrible. This is an honest reply about the procedure... I wish that the smaller procedure had even been an option. I remember when this whole thing started for us; I was thinking all we would have to do was helmet therapy, which was totally doable. Your little Ben is just
adorable! I love your blog and I will be following your story all the way
Another conversation that made me feel so much better about our decision was with my Papa. I told him that I was concerned about whether we had made the right decision, and he told me that it was not about whether or not we made the "right" decision; it was that we were making the "best" decision. He told me to have confidence in our decision going forward. It's impossible for us to know today whether we are doing the "right" thing, but I know that we are doing what we believe is best for Ben.
We have received an overwhelming amount of support over the last week. Thank you for all of the wonderful words of encouragement and prayers. Keep them coming- the next 2 weeks are going to be the hardest!