I read this tidbit from my past while in bed with the boys, last night. ( No, H does not sleep with us. He does come in for about thirty minutes before bed each night). I shared this memory with them and it led to a conversation about why we would cancel for a cold. While Hayd " gets" his heart condition, he sometimes doesn't realize how fragile his system can be. We discussed that and how MAJOR that surgery was. ( He knows all about the near death , awful recovery.)
I looked over to continue chatting with him and he was doing one of his favorite things...rubbing his belly. It is more of a tickling than a rubbing and it has been going on for six and a half years. One of his nurses did this for him when he was recovering and it not only helped with the itching, but relaxed him. He does it quite often. It makes me smile.
This belly rubbing requires him to lift up his shirt. At this point, I was on my side and went for a handful of skinny belly. He is crazy ticklish and thought I was going to tickle him. I began pointing to his many scars( not just the traditional zipper, but from chest tubes, emergency pig tails and an ECMO prep) and told him that I knew where each had come from. They are a road-map of his journey. They are rough looking, bumpy and all over the place. Landmarks of surgeries, procedures and crises. A perfect metaphor for life with a CHD.
I love that we are able to discuss this, but hate that we have it to discuss. I wish with all my might that he'd been born heart healthy, but he has never, ever expressed that himself. I get yanked back into a place of fear, helplessness and despair by certain memories, triggers or belly rubbing. He continues to laugh and smile. I am amazed by his fortitude and in awe of his attitude.
On this day, I choose to be grateful because I am truly blessed to have this amazing boy in my life.
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