Zero to Hero: Or Not

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.

 

8 comments

  1. I was raised to love, forgive, and turn the other cheek when somebody wrongs me. I got over the religion, and I got over that attitude, too. All it took was a childhood of abuse, and then having a beautiful, perfect child who later developed a chronic, scary medical condition. I know that there are those who want us to “be patient,” “wait and see what happens,” “give him a chance.” No. We don’t have time for that shit. We need help now. We don’t have time to waste, and I really resent all the extra worry that’s being caused by all this repeal/replace bullshit. Just get it over with…rip off the band-aid, so we can get on with dying. #buti’mnotbitter

    Liked by 1 person

    1. Yes, yes, yes!!! We don’t have time for this shit. It isn’t theoretical for us, it’s here and now. Dealing with the day to day realities of a child with med needs is more than enough, adding in health insurance scares/worries that we thought were resolved is a nightmare. A living, breathing, waking nightmare every damned day.

      Liked by 1 person

  2. Ooohhh*

    That’s the sound of air pushed from my lungs from that punch-in-the-gut post, which was tough for me to read and not just because of the content.

    I feel for you, Mrs Fringe, and for my sister with her own special needs child, and for anybody raising a special needs child, or any child. What world is this where one’s dear and precious child is ill and one’s government chooses party over responsibility, playing loose and free with the health and well-being of its citizens, especially its most vulnerable.

    Actually, this affects almost every one of us, in some way or another. To hear that the GOP is willing to hack and slash the Affordable Care Act, to make backroom deals while hanging onto their own Obamacare coverage, is despicable, deplorable, unbelievable, unconscionable. When did we,the people, become pawns in their political game, or worse, throwaways? When did we, the people, decide that as long as we get ours, the hell with everybody else?

    As of this moment, the legislature has yet to vote on this latest, ram-it-down-our-throats version of Trumpcare or whatever they call it. They can call it whatever they want, swear on the Bible how fair it is and how great it will be, celebrate how much it will preserve states’ rights. They can sugarcoat the hell out this latest ‘repeal and replace’, but a turd is a turd is a turd, and this one’s going to be real damn tough to swallow.

    Liked by 1 person

    1. Thank you, kk. When I first read your response, the vote had just passed the house and there were no constructive words coming from my mouth. This does/will effect all of us–except for members of Congress and their staff. Throwaways is a perfect word for this anything but perfect bill.

      Like

Join the Discussion

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s