Lately I’ve been wondering what the hell I thought I was doing, going and having kids.
One with Asperger’s, ADHD and crippling anxiety and one with god only knows what; some fucked up, funky disease that doctors can’t identify after two years of trying to figure it out.
What was I thinking?
I’ve thought about writing here so many times over the last several months but the chaos in my life has left me feeling muted. I’ve felt like I just can’t get the words out, and who the hell wants to hear them, anyway? Who the hell wants to hear my sob story, the details of my anxious son and my sick daughter and my sleepless, teeth-clenching nights — but then again, who the hell is reading this blog, anyway? At some point it occurred to me that maybe getting it out might make me feel better. Might make me feel a little bit lighter.
Because I’ve been feeling awfully heavy lately.
Things with Max got real shitty there for a while. His anxiety skyrocketed. He thought his sister was going to die. He thought Barn and I were going to die. He couldn’t be alone, at all, ever, and so on, and so forth. He’s doing better now, thanks to an amazing team at school and some great community supports. (Thank you, amazing school team. Thank you, great community supports.)
Victoria is a different story entirely. Her situation has continued on, and although it’s starting to gain a bit of momentum within the medical community now, she continues to be unwell and is, on a whole, not getting much better. We see a list of doctors longer than my arm that are
conveniently located in two different cities — the driving back and forth is what exhausts me the most, I think. She was diagnosed with a rare disease about a month ago, but there is still a whole other component of her illness being investigated, which is perplexing doctors because she is presenting with symptoms consistent with a different disease that isn’t usually seen in pediatrics. I am trying to have patience, and faith in the doctors who are working the case, but really, I just want to know what is wrong with my daughter.
I just want this to be over for her.
I want her to be better.
I want her to have a normal life.
I wish this wasn’t happening to her.
I wish I could do something to stop this.
But I can’t.