Today I went through some of my old blog entries from a few years ago. I must say it's now a little difficult to read my blog entries from before Abby's (and Carter's) official HL diagnosis, because I seemed so happy and niave. It's bitter-sweet to enjoy the pictures and memories and growth of my babies, but the "now" me is saying, oh, just wait and see. Your life is going to be turned upside down. And then I read this post and every emotion came flooding back to me. I will never forget that day.
And in a few weeks, we might possibly have to go through that again. We know the odds are pretty good that he could have Pendred Syndrome. We are going to be okay and at peace with whatever the outcome is going to be. But it doesn't matter how much we've prepared ourselves for the red "referred" slip to come back after his HL newborn screen. If it happens, those emotions are going to come flooding back again: the worry, doubt, sadness, and acceptance that our child is going to struggle with this for the rest of his life.
And in a way, I feel like some of the joy of having a baby has been stripped away from me. Everyone expects a healthy, beautiful newborn because they have no reason to think otherwise. But for us, we can't just enjoy the moment, because we know it's possible that our child won't be "normal."
This kid's going to be okay if he has hearing loss. He is being born into a family and a community that understands it and knows what to do. The resources at our disposal are phenominal and we will give him the best care possible. And we will love him no less and maybe even more because of his special needs. But as every parent that has a child with a disability knows, it still doesn't change that moment when you first know . No matter your past experience, it is still terrifying.
