One of the weirdest feelings that I can try and explain is the wanting of a positive test result. On the outside, it sounds horrible. Why would any parent want to hear that their child has something potentially life altering? It sounds crazy even saying it out loud.
As parents, we devote our lives to the safety and protection of our children. We run them into the doctors for every little concern we have, just to hear that we are doing everything a good and diligent mother should be doing. We seek to be validated on the choices we are making. But as a parent, you know when something is really wrong and you get worried. So why on earth would we want to hear anything other than everything is going to be fine?
When we were awaiting test results for Retts syndrome, our neurologist ordered an MRI. When the MRI test results came back normal, I wasn't surprised. Every test had come back normal and not providing any new information. It was just another test that I had put my baby through.
My mom asked if she could be happy? I thought, what a funny question, but I knew where it came from: A loving mom who is trying to watch her words around an ultra-sensitive daughter.
I told her, yes of course...feel however you want to feel but allow me the same. My immediate reaction to this phone call was "now what?" not "oh I am so happy," but rather what is our next step. I felt slightly happy but mostly sad. Sad that the vicious cycle of ideas is not yet over.
Getting a name, looking it up, crying, convincing myself that she does AND doesn't have it...waiting 2-8 weeks and hearing that everything is normal. With a name...that cycle stops. Not that things will miraculously get better, but we can move forward faster. No more blood tests and no more weekly doctors appointments.
I am not scared to hear what they tell me. I already know something isn't the way it should be. I am more scared that they have nothing to tell me at all. I know this may be hard to understand but the truth is that not having a name doesn't make it any less real and having a name doesn't change if she has it or not.