I haven’t updated since I posted about Ava’s diagnosis.
Sometimes it still feels fake. Sometimes it still feels like a really cruel joke and someone’s going to jump out from behind a wall and tell me I’m on candid camera. Unfortunately, as much as I wish this were true, it just isn’t.
This isn’t a joke.
I can hope and wish and beg and plead all I wanted, but it doesn’t change the fact that this is now my reality. Try as I may, I can’t change that anymore. Maybe I never could. All of the “could have” “should have” and “would have’s” in the world can’t save me now… No matter how hard I wish they were. Sometimes I wish I was a kid again. Life wasn’t complicated and bad things just didn’t happen… Except, the reality is, bad things DID happen… But children don’t see those things or understand those things.
Ignorance is bliss.
Ava is lucky, in the regard that she has me for a mom. I know it sounds conceited, but biology is my field. It is the subject I have studied and studied for years. I may not be an expert, but I understand more than most people do about it and I don’t need every little term explained to me. She has the benefit of having a mother who is more capable than most of understanding, dissecting and interpreting the things that are affecting her health. This is a positive thing for her, but sometimes I think its negative for me. Maybe if I didn’t understand these things, it wouldn’t hurt so bad, or sting so much. If I could just accept the dumbed down version the doctors use to explain it to those who don’t know, maybe it wouldn’t be so terrifying.
I find myself going back and forth. I know everyone tells me not to feel guilty. Not to feel as though I am to blame, but even if I’m not to blame, I still have guilt. I go back and forth from wanting to hold Ava close and never let her go… To wanting to be as far away from her as possible. I go from sad, and sorry and compassionate… to finding myself saying “I didn’t sign up for this..” or even worse, wishing I had just stopped with two kids, and never experienced this kind of grief. And then I feel worse. What kind of mom thinks like that? I love her more than anything, but even though I love her, it doesn’t make reality’s cruel punch to the face hurt any less.
It can always get worse.
When I wrote my last post, I thought it couldn’t get any worse than it already was. I learned very quickly, it could and it would… Several times.
I just wish I could trade places with her.