Wednesday, February 1, 2006

piss and vinegar

Nova had his cardiologist appointment again on Monday. It's been a weekly trip since he had his second heart cath on the 13th. Every time we go, I spend the hour ride up there chanting inside my head, "Let the numbers be high, the same at least - let the surgery be put off just another week, just one more week." And the whole trip back, I think about the surgery, the inevitability of it. It's like a slide show in my mind - a slide show of all the images of Alexis after the surgery, her funeral, plus the ones I make up in my head about what recovery will be like. I suppose that means I'm hopeful that we'll make it to the recovery process - but trust me, they're unpleasant images at best. A mother just shouldn't have to imagine her child's chest cut open, or drainage tubes or bloody bandages, or ventilators or NG tubes.

Anyway - when we went on Monday, his numbers were virtually unchanged since last week, and Dr Bensky is going to put us on a 2 week schedule. That means that there will only be 2 more visits with him before Nova is 3 months old, and the surgery is imminent. So, good that Nova is doing well enough that the doctor feels comfortable only seeing him bi-weekly again, bad that I've become psychotic enough to see his life in 2 week pre-op increments.

And here's just to show how shallow I am. Every bath time, every outfit change, every time that Nova is shirtless, I find myself looking at his bare little chest and regretting the fact that soon, that perfection will be marred with a scar the entire length of his chest. I wonder what it will look like, if it will be something kids tease him about, something that will turn women off when he's an adult. We're not talking about a little scar here, it'll be huge - I mean, I've seen scars from open heart surgery before, and they're ugly, horribly frighteningly ugly.

And don't give me any shit - I don't want to hear about how after the surgery we'll look at that scar as a reminder to be thankful he made it through or whatever other crap optimism you're brewing inside your head ok? Of course I'll be happy and thankful when he makes it through the surgery, but I won't see that big ugly scar as a good thing, ok? Ever.

OK, enough out of me for now, I'm feeling too pissy today to post anything that won't come off as being just piss and vinegar.


  1. *BIG BEAR HUG* You can say anything you damn well please. You are a mother who loves her child very much and I love you. Just know that!!

  2. I was hit by a car when I was 11. The bumper sliced my right arm from the elbow to three or four inches below my shoulder, so that when the cut was visible, it looked like a hot dog cut open length-wise.

    I am not describing this to further your fears or to be unduly insensitive to what you're going through.

    What I am doing, Erin, is suggesting that if the surgeons or internist that speaks to you after the surgery tell you scars heal, please ask if there is a product such as "Mederma," that you might safely use on little Nova after he begins to heal.

    You ~DO~ get your share of flack for scars in school. Or you learn to brawl.

    I dealt with the latter but should have learned the former, hon.

    Take it from someone who knows firsthand is all I'm really saying.

    'Nuff said.

  3. ((HUGS))

    When I was almost two, I spilt a crockpot of beans on my foot. I've had several skin graphs and other foot-related operations as a result. It's more than 20 years later, and I know it still hurts my mom every time she sees it and every time I have to go to the foot doctor - she feels very guilty. (If only she'd been watching me better, if only she'd put the pot on the counter, etc.) I walk fine, I wear two normal shoes, it's really not a daily issue - it looks weird (like melted skin) and I have some very large scars on my leg and hip area where they took skin - but that's it really. For me, it helped me learn my right from left. It also makes bathing suit buying easy - I get boy shorts (to cover the scars). Surprisingly, kids were never that mean about it. They'd see it and say, "Eww." I'd explain, and they'd get over it quickly. The scars in more personal places made me nervous when I started getting naked with people :) The thing is, though, that none of them cared. There is one graph from my groin area that makes me very insecure, and I got a tattoo near it (and plan to expand it over it soon) to take attention off of it.

    I don't expect that guilt and hurt will ever go away when Nova has that scar across his chest ... and that's fine. You do things in your own time - and sometimes it just doesn't happen.


    On a side note, I was surprised when I read that you didn't go to college. I studied English-Writing in college, and your poetry is terrific - some of the best modern-day stuff I've read. I wrote with the same kids in writing workshops for four years, and the quality of your work far surpasses anything we came up. It's beautiful.

  4. Can see how hard this is. No, let's not kid ourselves. If you're different, you get some level of flack. I'm an adult and when I need to use the wheelchair to go longer distances I still feel odd.

    Good luck to you both!

  5. There's no reason why you should accept that scar as anything other than what it is- unfairness at it's most horrific. No child should ever have to endure such things, nor should any parent ever have to endure the suffering that goes along with it.

    I have no words of encouragement here, E. Only that I love you guys, and you're in my thoughts daily. Even typing that feels insignificant. I'm sorry.

  6. I could point out a potential silver lining (and not get smacked upside the head for it - ha ha), I'd like to offer up the fact that having open-heart surgery at his age should make the scaring much less than it would be with an older person, right? I mean, his little cells are multiplying so fast, I would think he'd heal better at this age? And at least by the time he's old enough to be running around a pool topless with buddies, the purple and pink will have faded to white... Right? Sorry if this is all a load of crap. Just my thoughts.

    Love you, E.

  7. Mary~
    I love you too dear - and I love it when you come by here!

    You haven't said anything that would further my fears - or anything I didn't already know really. It's just that 'brawling' won't really be an option fo rhim, so the only choice he'll have is to put up with the teasing.

    I suppose it's just because I'm 'the Mom' = or maybe it's because my mother taught us by guilt lol, but there's definitely a sense of guilt about it, even though my rational mind knows that there wasn't and isn't anything I can change for him.

    Society is cruel like that - makes us all too aware of our weakness and flaws, and is entirely too short on compassion.

    Ang~ It isn't insignificant... maybe the words are, but the sentiment behind them isn't.

    I don't know exactly what the scar will look like in 20 years, I do know that scar tissue doesn't grow, so it will either be smaller than an adult heart surgery patient, or hideously stretched...

    Another thing to consider is that, from what I've read, because of the healing process the sternum goes through as it knits back together, children who undergo heart surgery tend to get calcium deposits that make visible lumps under their skin.

    I suppose I'm being shallow and ridiculous, but these things bother me - he'll have already gone through so much, and then have to deal with the scars and lumps and teasing along with whatever physical limitations he'll have in the long-term. It just fucking sucks.

    And yes, I'm feeling sorry for myself, and for him, today.

  8. Anonymous1:25 PM

    My brother had open heart surgery as a baby, his scar was ugly and ran across his chest. Now at 35 though, it is hardly noticed. Most likely, as an adult, it won't turn women off, they will want to kiss it and touch it and run their fingertips along it as they become intimate with him. Any woman worthy of him would make love to his scar as she makes love to him.
    Just my two cents worth.