Monday, April 29, 2013

9 Years

Last week was the 9th anniversary of Connor's diagnosis. I usually don't remember it until after the fact, as it's followed by my sister-in-law's birthday and my best friend's birthday. Then I remember. I remember taking him for his EEG, not realizing that test was going to send the train of my life off onto a siderail course I could never have anticipated. I wrote a piece on that day almost 2 years ago. It's long so I won't put it here but it details the day. I read it often. I don't want to forget what the beginning was like. It is good for me to see, all these years later, that we were scared adults in an ocean of long, scary words and questionable longevity, and see where we are now. We are stronger because he is. We are a larger family because we believed we could be.

I had a check-up today with one of Connor's specialists today. Really, we only see him once a year, and every time, he makes a point of saying how hard he can see that we all work in this family towards the best possible outcomes for Connor.

He's a good doctor. I am glad to know him, even as I am angry that we need to. I am glad that he believes in us. We were referred to him to work on feeding and aspiration issues. The idea came up in 2008 to install a feeding tube in his abdomen. We were against it. This doctor is too. In 2013, Connor has had a feeding tube for exactly no days ever.

Leaving his office, I was struck by a thought while I raced him to the car through the rain. They can tell me he's going to die as an infant. They can tell me he has to have a feeding tube. They can tell me many things. It doesn't matter. They can't have Connor. He's mine, and he fights like we do, and we are never, ever giving up fighting for him. Never.

No comments: