I know, I know, I haven’t been around. First I was writing, which felt shockingly excellent. Then I got sick, the flu maybe, which sucked. Naturally after I got sick, Art Child got very sick, and the battery for my camera has died, which means no new photos, and before I can blink, weeks have gone by without even considering a post, and a whopping dose of the blues, which means you didn’t want to hear from me anyway. Trust me.
The other day I was web surfing, and came upon what looks to be a reputable writer’s conference that will be here in the city this summer. Sure I haven’t opened the Mess-In-Progress in weeks, I’m not quite sure how I’ll work out the money or the logistics but ooh! I’m considering it. Maybe it will be motivating. Inspiring. Humbling. Humiliating. Yeah, maybe I’ll put that thought to the side for now.
Why am I blogging today? I’m not sure. Maybe because I feel like howling at the universe, but apartment life means no howling allowed. This is not a mom blog, or a special needs parenting blog. I do talk about my kids a fair amount because they’re a huge part of my life, but as I’ve said many times, Mrs Fringe is my spot to be me–all of me; the good, the bad, and the wacky.
I know Jimmy Kimmel did a beautiful job talking about all of this the other day. Heartfelt, honest, a perfect blend of hope and honesty, and I truly thank him for using his platform to talk about families who don’t have millions tuning in to their words, have millions cheering them on and praying for them. Even I teared up as I watched. He had a layer I don’t have anymore, that newness, that shock of how-did-I-get-here?
In parenting, there are moments that make your heart stop. I like to think I’m pretty good in moments of crisis, it’s afterwards, when you have time to think and breathe, when I’ll feel it most. But yeah, there are those moments where no matter that part of your brain is telling you to move, to speak, to take action, to take a breath…the lobe that’s in control in that one moment is frozen. I don’t know about anyone else, but for me, it hasn’t always been a huge crisis that prompts this, it’s the neat and perfect dovetailing of implications, suddenly unavoidable.
“Mom, the dark’s been darker than usual.” My heart, my brain, my fucking everything stopped when I heard that. Of course I needed to hear it, I need to know this, but I don’t want to. For the past several months, we’ve been seeing more specialists and adding meds to deal with the issue that’s come up with Art Child’s eyes. I can and will do everything possible to preserve her vision. We’ve been doing everything possible, knowing the odds are ugly, to say the least. And then I heard that statement. And the next day she came home with a different edition of a book she’s been reading because “the letters are bigger.”
And then I went online and read about the latest round of “How the GOP is trying to kill the citizens of America and torture the most vulnerable.” Excellent. Even better, the individual statements of Reps and 45 supporters saying things like people who live “good lives” and “do things the right way” should pay less than those with pre-existing conditions. As another med-needs-mom friend of mine put it, yeah, if only our fetuses hadn’t been drinking and whoring while in the womb, they wouldn’t have those pre-existing conditions. If you don’t have experience with this stuff, let me say sometimes I think it’s a freaking miracle that the majority of babies are born healthy and neuro-typical, because yes, there are that many things that can and too often do go wrong. Another pro-tip for you, everything is genetic. Everything. And most of us will, at some point, develop something considered a pre-existing condition, because it’s coded into our genes. Or we’ll have an accident that will have lasting repercussions. Or old age.
So on one side we’ve got the people who are totally cool with anyone with treatable health issues dying because they can’t afford health care. On the other side (and sometimes, oddly enough, there’s crossover) there are the people who know they and their family were really lucky with the genetic jackpot, and they say things like, “I don’t know how you do it. You’re a hero. Your child is a hero.” Now, I get the whole hero thing when you’re trying to explain to a very small child who’s ill. “You’re a superhero! You’re going to kick cancer’s butt! Slaying cystic fibrosis! Show those seizures who’s boss!” And I know there are some medical needs parents who find it helpful to think of their children (maybe even themselves, but I haven’t heard that regularly) as heroic in the fight against *insert cause(s) here*. Or they believe they/their children were chosen. I’m too cynical for this, and frankly, it neither makes me feel better nor gives me strength to make the next phone call, agree to the next med that includes “may cause death” in the list of side effects.
I’m a regular old gal. Really. If you walked past me on the street, well, you’d walk past. Normal. Regular. Average. You might notice Art Child because she’s fabulous and beautiful, but that might be my bias talking. You’d probably walk past her too. And my boys. Man boys, who do indeed have ten extra levels of strength, calm, and compassion because they grew up in a house with medical needs. But you’d walk past them. And that’s all okay. I love a good cape, and so does the girl, but I feel no need to slap on a mask and gadget belt. I just don’t want to be a villain, either, for wanting the best possible chance for the best possible outcome for my child.