I just pulled out an old notebook to make a To-Do list for myself, and came across notes from a conversation that I had with Christian's pediatrician very early on in his diagnosis. I can tell my handwriting is shaky, and if I close my eyes, I can actually hear her saying these words:
"He has fluid in his ear"
"He has positive signs that he is hearing"
So, instead of just throwing that page out or just flipping it over, I started to cry. And then, almost instinctively, I opened my laptop to blog about it. This blog started as a way for me to share my feelings, especially during my grieving process, then morphed into a place where we chronicled our journey with Christian. And here I am, almost 3 years later, still needing to write about my sadness.
I don't think this sadness will ever truly disappear, and I don't expect it to. It comes and goes, visiting me at bath time when his CI flashes it's "off" light as it sits on the ledge, and Christian's world is silent. Sometimes it comes at 3:30am when he wakes up from a nightmare, and the only way I can comfort him in the darkness is with a touch of my hand and my breath on his cheek. It's always there, most of the time hidden by all the laughter, songs, and words that fill our world. I fight it everyday, being proactive, fighting for Christian, celebrating who he is, and doing whatever I can for him to succeed.