Wednesday, May 31, 2006

On the News

I posted this on Nova's blog, but I want to share it here too. It's a story (video) about another baby that was in CVRU the same time as Nova, well, part of it anyway. It shows Dr. Watts, Dr. Bensky, the OR, and a peek into CVRU too. Dr. Watts is the first doctor (look at his ID Badge, there's a smiley face sticker where his face should be) and the second is Dr. Bensky, he was Nova's cardiologist.

Pontiac, Apprentice, and the AHA

For this week only, Pontiac Motor Division of General Motors is
running an Internet promotion that can benefit the American Heart
Association. This project is being done in conjunction with Pontiac's
sponsorship of The Apprentice television show and was announced just
last night during the first of their two final episodes.

From now until next Tuesday, June 6, anyone can log onto, and click on the button under "Raise the
Roof." Select "The American Heart Association" from the list of
charities and Pontiac will make a $1 donation to The American Heart
Association on your behalf until the full $500,000 has been donated to
the eligible charities. Then the voter will be asked to enter your
contact information which enters the person voting for the chance to
win a new Pontiac G6 convertible and one for The American Heart

(Hat tip to Jamie)


So what's today anyway? Wednesday? OK, so Monday night, I didn't sleep, at all. Tuesday morning I went to the hospital to sit with another woman whose son was going in for surgery. I was nervous, but excited, if that makes sense. I'm glad I went, the mother is a doll, the baby is doing miraculously well, I got to see Dr. Watts actually smile and seem optomistic - Dr. Watts doesn't generally do the whole transparent emotions thing. It was excellent to see, excellent that the baby did so well. They've already extubated him, taken him off a lot of meds, and are talking about having him in a room tomorrow afternoon. A success story it seems. Good to know they're out there, and I'm lucky to have been allowed to be there to see it.

See, losing a child is a real esteem killer. The Erin that lost Alexis is long gone - that happy-go-lucky quick to smile confident woman. I finally got to a point where I could fake it, but I'm just not that same person. When I lost Nova, it had the same effect on my esteem, worse maybe, I don't know. But my reaction to his death has been so vastly different. I think I might find me again some day. I might even feel good again eventually. I sure as hell felt a lot more like me yesterday than I have in a lot of years. So yeah, she was glad I came, thanked me profusely, and I hope I really did help her get through the day, but it helped me too, it was a healing experience that I'd have paid for. I hope to do it again and again.

I went upstairs and saw Kandi, one of my CVRU favorites, and I jokingly said that I needed to get a job up there. She sat down at the computer and emailed me 5 job referrals. I don't know how I'd work out the logistics of getting to Charlotte and back every day since I don't drive, or how I'd manage childcare and whatever with Scott and I both working, but I'd love that job. I'd love it.

Anyway, after being up for 32 hours straight, I passed out on the couch yesterday evening right after dinner. I slept till Terra woke me up at 2:30 a.m. I slept for 8 hours, more than I've slept in many many months. Unfortunately, I was wide awake, and I'm still up: it's now 5:15. Might as well just go ahead and start the day eh?

Well, I didn't, I went back to bed until 9. Sleep is a wonderful thing. I've now slept 12 1/2 hours. Thats' more than I have slept in ... maybe years. Seriously. I'm so sick of insomnia that I'm actually considering making an appointment and getting some sort of sleeping pills or something. If you know me at all, you know that's a major statement coming from a person who avoids taking even Tylenol...

Saturday, May 27, 2006

Tarheel Tavern #66

Heard the Word of

Ah, it's been a while since I hosted the Tarheel Tavern. I've been distracted and busy, and completely incapable of doing it lately, but it's good to be doing it again this weekend. Seems the Tavern has been fading a bit, and participation really waned last week (Sorry Ogre) and in an effort to get people interested again, I'm going to scout out a few posts from NC bloggers, even if they didn't send anything in. Don't get used to it folks, not all hosts will do it, so if you want the extra traffic, you should send in an entry! Now, go forth a-clickin'

We'll start with Ogre, since he hosted last week. He's gone fishin' this weekend, but before he left, he humored my obsession with his car by sending me this post about another tiny cute little thing - I hope it's the next thing he buys. I'd pay to see him in it! That's a mental image to giggle about for a while!

Next up is Bora. Bora's been driving something a bit bigger than Ogre's car, he's been zooming around the blogosphere in The Magic School Bus, looking for all things educational and scientific. He gave me a collection of posts to choose from, and since I do know who Paul Sereno is, I chose this one.

Since I've somehow managed to create a locomotive theme here, our next stop will be with my favorite Outspoken Cyclist, David Barron. He sent in an article about a new pedestrian bridge in Durham. However, I'd really like to include this post he's made there titled "an inconvenient truth" because we need to stop fooling ourselves, and because uncomfortable facts have been so prevalent in my life lately that I thought I'd share some more :)

Speaking of discomforting thoughts, we're off now to visit with Sara, who apparently went on a coffee binge at 2 in the morning and did some deep thinking. Death is an unlikely post-title to find on a blog titled Clothed in Joy, but it's an interesting stream of consciousness post, and leaves you likely to do some 2am thinking of your own.

Though AE at Arse Poetica made some annotations concerning the dead as well, her post is very much about something live and growing. She posts her thoughts, and some beautiful pictures of Chatwood Garden in Historic Hillsborough, NC.

Laurie of ...Slowly She Turned also shares pictures of gardening. Laurie happens to be, by far, the most environmentally conscious people I've ever heard of, going through quite a lot of extra time and effort to stay true to her green ideals. Take her container garden for instance.

Ron at 2 Sides 2 Ron has also posted photographs of his garden. I want everyone to know how insanely jealous I am of his flowers, because they appear to be magical. I don't ever remember reading posts about toiling under the hot sun, pulling weeds and tilling soil. I don't recall ever reading mention of yards of mulch, fertilizer... None of that just picture after picture of beautiful flowering plants, vines, and bushes. I've got to get his secret...

Screwy Hoolie waxed political. He's posted a poll regarding the Schuler/Taylor race. I can't say I'm very interested in politics, but the picture he posted near the end is reason enough to visit him and read. What is that thing!? Creepiest evil-weasel I've ever seen!

Jude of Iddybud took the holiday weekend as an opportunity to touch on her Memorial Day tradition of singing Battle Hymn of the Republic, she also discusses the inspiration for the song's creation, and how those truths no longer seem to apply to present political times.

I'd also like to point out Billy and the Memorial Day post he made, which sums up my personal views on the war, and our troops.

And while we're being political, David Inman at 1492 shares his opinion about the recent FBI raid on William Jefferson' office. It goes to show you that political figures probably shouldn't keep skeletons in their closets.

Waterfall has skeletons at A Sort of Notebook too, but she's not keeping them secret. She's showing them to the world, and you should have a look too.

For me this year, Memorial Day weekend included an attempt to have some fun. There was Food Lion's Speed Street, a local celebration that happens in conjunction with the Coca-Cola 600. I've already posted about the experience here. I am not the only one who made similar observations, and so I'm linking to Protected Virtual Void's humorous account of the festivities.

So there you have it, The thirteen entries of The Tarheel Tavern Volume 2, Issue 14, better known as the Memorial Day Weekend Issue, or TTHT #66. Hope you've enjoyed it, and I hope you've enjoyed it enough to consider hosting it sometime soon. Next week you can find it at Anonymoses, who asks you this week, does your life grow corn? (Sorry, I just couldn't leave it with 13 posts!)

After next week, the host schedule is wide open, so please volunteer to host!

Stepping Out

When you have a child with a serious health problem, you tend to do a lot of research, learn what it is that you and your child are up against. Understanding helps alleviate the fear of the unknown. When you have 2 children born with heart defects that prove to be fatal, not only do you learn about the defect itself, but you want to find the causes, the statistics, everything about it - you crave all the "why"s. Since Nova's diagnosis, birth, hospitalization and death, I have searched out and read more articles, memorized more statistics than I ever cared to know.

Right now, as things stand in our present. 1 in every 100-125 children born in the US will suffer from some form of congenital heart defect. That's approximately 35,000 to 40,000 children each year. Congenital heart defects are the #1 most common birth defect, and the leading cause of defect-related infant death. Around 4000 children die each year from a CHD. Actually, twice as many children die from congenital heart defects than die from all forms of childhood cancer combined, yet, congenital heart defect research receives about 1/5th the funding that pediatric oncology research receives. In the vast majority of cases, the cause is unknown, there are no steps for prevention, and there is no cure. That is the current future of our children.

I want to do my part to change that future. My life has been, as most of you know, deeply impacted by this lack of awareness and research.
In an effort to stop other parents from losing children, I've decided to participate in the Charlotte Metro Heart Walk 2006 on September 16th to support awareness and research of Congenital Heart Defects. I'm aiming to raise $1000 $2000 in donations. If you'd like to support my effort, you can donate online at:

If you're interested in donating, but online donations aren't your cup of tea, you can still help by printing out a donation form from the above link and sending it with a check, directly to them. It isn't required by the AHA, but I'd really appreciate it if you'd put "In Memory of Nova LeClair" in the memo slot.

If donating isn't an option, then please, take a moment to post this link on your blog or webpage, because only through raised awareness can congenital heart defect research get the attention and funds it needs. I want a brighter future for our children, for my children's children, and for yours.

Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.
- Margaret Mead

I am only one; but still I am one. I cannot do everything, but still I can do something. I will not refuse to do the something I can do.
- Helen Keller

3 Days Gross and (Sweat) Staind Tshirts

Well. The thunderstorms finally subsided, they got all the tents and banners put back together, and we loaded up the kids and headed out to Speed Street.

I rarely go to uptown Charlotte and I haven't been to Speed Street in several years, and the last time we went, we only went for the parade, and hung out for the fireworks, none of which involved being near the stages where the concerts were. The event is advertised as a family event, there's even a "Kidz Stage" where the kids could see local mascots and get autographs from Terry LaBonte... But tonight, we went specifically for the concerts.

My observations follow:
One cannot get any where near the stage when pushing a stroller, unless one is willing to risk the life of the child riding in said stroller.

Outdoor concerts that have to be observed from 2 blocks up the street are pointless. The base line was all that really filtered through the crowd noise.

Crowds of rednecks and pseudo-preps who imbibe large quantities of beer, while shouldering and elbowing their way through crowds of thousands on a 90 degree day all smell like funk, and lose all traces of respect and decency, including the most basic human instinct, which would be the desire to protect (or at the very least, avoid inflicting injury upon) small children.

The behavior (and stench) of aforementioned crowds brings out the Mama Bear instinct in me in precisely 1.6 seconds, and it only took that long because for the first 1.3 seconds, we were at the outside edge of the event area, away from said group of reeking assholes.

Drunk men, regardless of size, apparently believe that sweat-soaked back hair is sexy, and simply must remove their shirts to show it off. Their shirts, before removal, all say something brilliantly witty like,

Rock Out
with your
Cock Out!

Drunk women wear too little clothing and entirely too much make-up, and behave much worse than drunk men. They also seem to think that if they press their scantily clad breasts against you, you will move out of their way, even when there's a child-filled stroller in front of you, making it impossible to move.

In other words, we spent a total of $5 for the evening, for parking, and felt that we'd spent too much. We left early, didn't hear anything Staind sang, and had to repeatedly perform superhuman feats of self-restraint. I miss doing grown up things without the kids. More than that, I miss doing the immature things such as public drunkenness and exhibitionism. Next year, I'm getting a babysitter, a miniskirt, 2 tubes of mascara, a waterbra, and some of the strongest deodorant I can find - and I'm gonna friggin' party.

Friday, May 26, 2006


Scott's uncle died three days ago. We just found out this morning. In one of my CHD support groups, another couple just lost a child. Scott hadn't seen his uncle since he was a little kid, and the CHD family are friends of a friend, so I have never spoken to either of them. And yet, in some abstract way, both losses feel personal. In actuality, I suppose it's just that news of those deaths just serve as reminders, but in any case, I'm in a slump today. I haven't worked at all on my CHD financial aid list. Dinner is already cooking, the bathroom is sparkling clean, I've done 4 loads of laundry, and dusted the livingroom.

I've also spent much time in this chair staring at a blank screen because today is one of those words-won't-suffice sorts of days, a day when there seems like a lot to say, and no way to articulate it. Even the least important things feel heavy with undue significance. My head hurts, and I don't know if it's my sinuses protesting the promise of thunderstorms (most likely) or the weight of this funk.

Three Days Grace and Staind are playing a free concert at Speed Week in Uptown Charlotte tonight. We're supposed to go. It doesn't matter to me whether we do or not to be honest. If I go, I probably won't enjoy it. If I don't go, I'll kick myself in the ass for missing it. For now though, I could care less.

Well, kids want me, dinner needs me and the laundry won't finish itself.

Thursday, May 25, 2006

The Shit List

There's a list circulating around the writing neighborhood of the blogosphere lately, a list called The Twenty Worst Agents. I found it at All Kinds of Writing, but apparently, it's also on many other blogs and/or sites.

Seems this list riled some tempers and sparked a bit of controversy, and the threats and legal mumbo-jumbo even cost Absolute Write their hosting (they've moved and are presently transitioning to their new server.)

Funny thing about controversy though, it draws more attention and, for me anyway, makes me more likely to believe the list is completely legitimate (I've seen the lists compiled by miffed writers and offended poets, know what I'm saying?) So, I'm posting a link to the list, where you can also find more links to people who've posted the list.

guilt and unspoken expectations

My mind just can't accomplish the yoga twists that figuring out LOST would require. (It's OK Eve, I'm not going to give any spoilers!) Tonight's episode... damn. That's all I'm saying. Damn. Oh wait, I have one more thing to say about it:

In more important news, my mother was in a car accident today. She wasn't hurt, but her car sure was. I can't figure out exactly how it could have happened though, it's crazy. She was riding down Dickerson Blvd on her way home, and a woman pulled out of a parking lot and t-boned her. I'm trying to figure out how the other driver didn't see Mom right in front of her as she gassed it and slammed into her. And the other driver, being an elderly woman, one of those frail weak looking types, started crying and had the police officers' sympathies. There's no doubt about whose fault it was, even the woman kept saying she didn't see Mom and slammed into her, but it got under Mom's skin that this other woman slammed into her, did major damage to her car (we don't know yet, but we suspect that there might be frame damage) and Ma loves this car, and basically, she stood beside her car while all the officers crowded around the other woman, being all sweet and sympathetic to her. I don't blame her, I'd have been pissed off too.

I know, all that matters is that Mom isn't hurt, but man is she pissed. And her car, wow. The front passenger door has a hole the size of a cantelope, all the way through the door. The only thing that seperates the outside from the inside is some fuzzy stuff, and the interior door liner. The back door isn't quite as bad, but it's bent, and out of whack, and we're not even going to try opening either one, because they're so off-kilter that I doubt they'd close again. The thing that has us worried about frame damage is that the woman hit her in that center support, on the passenger side, and the front fender/bumper area has been moved so that the pieces don't line up properly.

Of course, here starts the insurance beauracracy, so we'll see how it goes.

We made a sandbox for Terra today, a plastic pool with a patched hole, and ten 40lb bags of sand. She thinks she lives at the beach now. If only it were that simple eh? Not only is youth wasted on the young, but most of us don't even remember the best part of it, when anything you could imagine was truth, and everything was new.

I don't remember if I told you all about her reaction to the ocean when we were at the beach. Did I? She was breathless and so excited that she couldn't get the words out... It may very well be the most beautiful moment (other than my children's births) of my life, watching the pure joy and awe in her face. I remember the first time I showed her the moon. She was about 18 months old, and it was a full moon, and the sky was clear, and I bundled her up because it was chilly, and I took her out in the yard and showed it to her. Her reaction was the opposite of her reaction to the sea. She stayed very still and stared at it without saying a word, silenced by amazement, mesmerized. She's going to be like me where those things are concerned. That makes me smile, and makes me worry.
See, not only is youth wasted on the young, but maturing steals so many of those wonderful memories from us - remember when you never doubted the fact that Santa was coming? Remember trying to stay awake, running your tongue across the new hole in your gums, waiting to see the tooth fairy so you could thank her for your shiny new quarter? I don't. Then there's adulthood, which buries us in inhibitions and proper behavior and respectability.

I don't want my children to live like I have, working too hard to survive, always being proper and forever showing the faces that they know society expects. I want them to be the types that sing along with the music in the supermarket if they want to - the ones to run barefoot through summer rain, no matter who's looking. I want them to be happy when they're happy, and secure enough that if they're feeling heartbroken, they don't feel apologetic about it. I've lived my life by the rules of guilt and unspoken expectations. I want my children to break those rules.

Wednesday, May 24, 2006

Yin Yang

Sometimes, bad things have to happen in order to remind you of the good. It is an exercise in contrast. What good is orange without blue, white without black, life without death. It is truly something that I believe, but we've discussed this before. Last night, at 12;34, something terrible happened to me. Something I thought would probably scar me for life. The worst part was that the news of the occurrence was delivered by my husband.

Yesterday evening I took a nap after dinner. I hadn't slept the night before and I was exhausted from that, and from the genetics appointment, so I laid down and slept from about 6:30 to about 9:30. When I woke up, I grabbed some coffee and decided to visit bloglines to see what I'd missed while I was asleep. A lot, apparently. There were 56 new posts. I had been up for about 3 hours when my husband turned to me, the look on his face utterly indescribable, and says to me," Um, wasn't LOST on tonight?"

Ohhhh SHIT! I missed the season finale of LOST!? How the hell did I DO THAT!? I spent all night, and all day cursing the universe, and trying to decide just how I could possibly find someone who'd recorded it. I was angry for HOURS. At some point my mother walked in and I said to her, "Ma, you know what I did last night? I missed LOST!" Her reply was, "Uh, no. It's on tonight Erin."

I was absolutely convinced that I'd missed it, and that today was Thursday. I haven't figured out yet whether Scott was pulling an inordinately evil practical joke on me, or if he too believed that yesterday was Wednesday.

Regardless, it was a quick dose of black and white, and I now have a huge appreciation for the good in life, the good that is called LOST.

Today IS Wednesday, today IS the day LOST is on, and it comes on an hour early, so don' miss it!

Silliness and seriousness

My husband has a chronic case of it, a lifelong case I'm afraid. Laura does too (hers couldn't be helped considering her location and surroundings) and her compulsion is shared by her husband Doug. Then there's Erin, she's been showing signs for quite a while (the signs are less easy to pinpoint with her though - no damn permalinks!) but had an acute attack recently. Last night, I found out that Zilla is also a sufferer. Even Ang, yes, even Ang has it, and brags that she exposes her son to it daily. Laurie has it, it runs in her family, and her area is very supportive.

It's sweeping the nation, and I'm having a relapse. It's not pretty when I get it, and there will inevitably be death, but for me, being in such close proximity to Scott means that I too have been exposed. I resist it, write about it even, but find evidence of it in even the smallest of things.

But eventually the urge becomes irresistible. Sparked by some stimulus (Thanks again Zilla) I become overwhelmed by the need. And so, this weekend I will indulge myself, I will binge. There will be fountains and a waterfall. There will be cupcakes and supernovas and memories, and I'll be happy, and I'll cry, and it will be good.

Tuesday, May 23, 2006

genetics cross linking

"...He asked about gestational illnesses, and environmental factors and medications during the pregnancy. He asked if either Alexis or Nova had been autopsied, or if we'd had tissue samples frozen... Eventually, he got down to business, and surprised me by telling me that he had Alexis' genetic testing results too. We never knew she was tested for anything until after Nova was born, so we'd never gotten any results about her.

Apparently, both children tested ..."
[Read More]

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This week, I'll be hosting the Tarheel Tavern right here at Poetic Acceptance. It's been a while, and I'm out of practice, I haven't even named a theme. So it's a free for all, send me whatever you like by Saturday (5/27) at 9pm, and I'll have the Tavern up Sunday morning.

We always welcome volunteers, and if you'd like to host, email me (or Bora: coturnix1(at)aol(dot)com) and we'll get you set up!


It's 3:15 and I'm still up - and I have to be in Charlotte at 8:15! (Why do they need me there 45 minutes before my appointment anyway?) I can't help it, sleep is an impossible goal right now. I'm a busy woman! OK, OK, I know you guys know that I hardly leave my house, but lately, I'm mentally busy, and have committed myself to several projects of the online variety.

My list of Financial Aid Resources has grown considerably (Thanks Miss V!) and I'm up to 27 states, and 43 hospitals. I'm not far from halfway there! Plus there are a few links that aren't hospital based too, which is even cooler.

And now, now I'm cooking up a new plan for a new project that will probably overwhelm the piss out of me, but I'm really excited about it anyway. And, it's a good thing from several different perspectives, and stands to benefit several people and/or organizations. My mind is working over-time on it. There are lots of ideas with no sort of solidity yet, but my mind is working.

I've become some sort of CHD freak lately, an awareness warrior or some shit. I can't help it, for all the depression and lethargy that Alexis' death left me with, Nova's has filled me with a purpose, a fire. I'll either quench it, or wear myself completely out trying. We shall see.

So anyway, as for the Financial Aid list, there are already several people waiting for me to finish it. Several popular CHD sites, a couple of charity organizations, and even a few hospitals. I'm stoked that other people agree that it's a list that needs to be made and distributed, especially since some of them are in such "high" places. I realize it's been time and labor intensive (OK, web searches, email messages, and telephone calls aren't exactly labor but you get my drift) but it's so worth every minute.

Now, 3:30 am, perfect time for a shower and fresh coffee! See ya.

Monday, May 22, 2006

Another appointment

Well, tomorrow morning at 9am we meet with Dr. Wagstaff up near CMC. He's a clinical geneticist, and will be telling us if there were any genetic abnormalities, chromosomal additions or deletions, any as-of-yet undiagnosed syndromes that Nova suffered from. I feel fairly sure there weren't any, that all the tests will have come back negative. We already know that the DiGeorge testing was negative, and that was the most likely culprit. Had they found any sort of genetic cause for his heart defect, we'd have heard about it while he was in the hospital.

It's a moot point for me though really, with my tubes tied and all. Mostly we're following up on the off-chance that our kids would need to know about anything they found. With five kids, the chances are that I'll have a boatload of grandchildren, and before my kids go conceiving they should be aware of any possible risks. So off we go to another doctor about Nova, 46 days after his death.

He's now been gone for as long as he was hospitalized, a day longer actually.

So. Part of me needs to know what caused his heart defect. Chances are, we'll never know. That's one of the hardest things about CHDs, accepting that no one knows enough to tell me why they happen. I suppose if they were able to point out a genetic link, I'd only wonder what caused the genetic problem to happen. Human nature dictates a need to know, it's part of what separates us from animals: higher learning, a thirst for knowledge.

There will always be more WHYs, and I don't think any of mine will be answered at tomorrow's appointment. And as much as I want to know, as much as I need a reason so I can make sense of it, I also hope, for my children and grandchildren's sake, that there are none to be found in Dr. Wagstaff's charts.

2 o'clock infinity

In this moment, we were infinite

Aside from the obvious tense shift that makes my teeth grit involuntarily, this line makes my toes curl a little bit. I love the paradoxical combination of "were" and "infinite." Don't infinite things remain infinite, by definition? I love the sense of nostalgic sadness in the line, and the way it contrasts with the mood of the picture. It's evocative, without sappy sentimentality. Solid, yet it refers to something completely intangible. The language isn't empty so to speak, but the message is. Brevity at it's finest, poetry at it's purest. Mmm hmmm. Yup. At least, that's how it strikes me at 2am.


I've been told long and often about Ani DiFranco and the wonderful qualities of her music. I remember a conversation years ago in MTC chat, about music and various artists, during which she was recommended. I listened to some stuff (remember when Napster was free? and when Kazaa didn't fry your hard drive?) Anyway, I listened, I liked, I forgot. I do that, shit shuffles off the back edge of my brain at an alarming rate. Mostly, I remember thinking, "She's hot, very hot, even bald.

Over the years, people have burnt CDs of her for me, ranted and raved about how awesome she is. Well, tonight I downloaded about 10 of her songs, since someone mentioned her again last night. Maybe I downloaded the wrong songs or something, but I'm just not all that impressed.

So, I've moved on (back) to Alanis. And yep, I've got pics of her too. I was actually compared to her, a lot, when I was a little younger.

Saturday, May 20, 2006

Twisted indeed ;)

Twisted indeed ;)

So, I haven't listened to much music lately. I used to listen to the radio or a cd all the time. Tonight I got LimeWire cranked up and started downloading, but I was in the mood to hear (older) "girly" music. Alanis, Avril (shut up ok? I love her) Natalie Umbruglia, Nelly Furtado (Still think Nelly is hot as hell by the way)

So I'm listening (after an Alanis marathon) I'm Like A Bird, and I wanted to post the lyrics, because damn it, I adore this song, always have, from the first time I ever heard it, but tonight, it makes me cry:

You're beautiful, that's for sure
You'll never ever fade
You're lovely but it's not for sure
That I won't ever change
And though my love is rare
Though my love is true

I'm like a bird, I only fly away
I don't know where my soul is, I don't know where my home is
(and baby all I need for you to know is)
I'm like a bird, I only fly away
I don't know where my soul is , I don't know where my home is
All I need for you to know is

Your faith in me brings me to tears
Even after all these years
And it pains me so much to tell
That you don't know me that well
And though my love is rare
Though my love is true

I'm like a bird, I only fly away
I don't know where my soul is, I don't know where my home is
(and baby all I need for you to know is)
I'm like a bird, I only fly away
I don't know where my soul is , I don't know where my home is
All I need for you to know is

It's not that I wanna say goodbye
It's just that every time you try to tell me that you love me
Each and every single day I know
I'm going to have to eventually give you away
And though my love is rare
And though my love is true
Hey I'm just scared
That we may fall through

So tonight, I'm blatantly unapologetic for spending some down time, twisting lyrics to suit my own needs, and being weepy. In a while, I'll turn on the Metallica and get over myself. Till then, well... pass the Kleenex will ya?

***Add-on (cuz I dunno how to shut up ;) )***

Most of these are songs I haven't listned to in years, especially Alanis. And her song "Thank You" was never one of my favorites anyway. But this line made me giggle (see, I'm PMS-ing so the moods are swingin folks) bout no longer being masochistic
how bout remembering your divinity
how bout unabashedly bawling your eyes out..."

haha, you said it Alanis.

It's 3 am and I'm a dumbass...

I've added 15 more links to my list of financial aid contacts. If there are 105 hospitals, I only have EIGHTY to go. Good Lord. When you compare how many kids are born with CHDs every year with the fact that only 105 hospitals perform the necessary surgeries, 105 seems like an incredibly small number. When you're compiling the list however, 105 is HUGE!

I have 25 hospitals in 20 states. A decent start for about 16 hours worth of phone and research time. And I had this ridiculously simple idea. Dr. Watts keeps telling me that if there's anything he can do for us, he'd be "happy and honored to do it." Well, by Golly, I'm calling his office on Monday morning and asking him if there's a magical list of all 105 hospitals.

I had this idea, and it was like, DUH! Who would know better than a cardiology surgeon? I mean, am I a dumbass or what?

Friday, May 19, 2006

Good good and good

So most of you read my blog and Nova's both, and are most likely aware of the fact that I've decided to compile a list of agencies and organizations that would be helpful to CHD families in need of financial assistance with their medical bills. Man what a daunting task. I had no idea! According to Dr. Watts, there are 105 hospitals that perform the surgeries, so I'm trying to start out with a list of those 105 facilities.

I've also learned that there are hospitals that, in special cases, perform the surgery for free. Loving that idea, now to find them! And there are still agencies, like The AHA, Easter Seals, United Way, The ARC and such that provide support too, and I've got to get them all listed and contacted. I've been amazed how quickly the list is growing thanks to the help of other CHD parents. I'm making huge strides toward completing it. It may only take weeks, rather than months (as I previously thought) before I get it under control. This makes me very very happy.

In the middle of all my research and under the absolutely wonderful loads of emails I've been getting in reference to this project, I've also been contacted by several people with websites and organizations who'd like to add the list once it's complete. Wonderful! That's the whole point here, to get the list out there so people in the moment so to speak, don't have to do so much work to find what they need - I mean, there's no way I could have done this sort of search while Nova was hospitalized, and frankly, CHD parents shouldn't have to when they're facing down death. Let's be honest, they are. 40,000 kids died from CHDs last year, and that's only a small percentage of the total of CHD babies that were born and treated.

Anyway, that's a soapbox I won't climb (wait, I already did didn't I? heh) I'm just saying I'm busy as hell with it, and already seeing results from it, before it's even close to completion. And on top of that, I've been getting a huge 'bolus dose' of generosity and unity that makes my heart all full and fuzzy.

I spent a good deal of time on the phone today, part of which was with a woman who has twin babies, 16 months old, one of whom has a heart defect. Her life sounds like a wild ride, and mine seems ultra calm in comparison. It was really nice to talk to someone who "gets" what it's like to have a CHD baby, someone who understands the terminology and the issues. Of course, she understands even more than I, because she's living with it in a way I never did. I commend her on the fact that she's got even one shred of sanity left in her!

I also got invited to take a major role in a new publisher, (Promise of Light Publications)a new (affiliated) website/forum, there is talk about a possible reprint of Poetic Acceptance, and an anthologized collection of Haiku and Tanka (so send them to me if you have any you'd like to see in print, and we'll let you know if we can use them!) Plus, I was invited to lunch by two different women, both of whom I met while we were at the hospital with Nova, both of whom I would LOVE to spend time with.

I also (thank you Erin!) received (yesterday) a copy of Bad Twin. For our fellow LOST freaks, you understand and appreciate the magnitude of importance I place on that book. If you don't, well, you aren't really a Lostie!

AND, tonight I made Chicken Cordon Bleu for dinner, and it SO didn't suck! I've never made it before, and was amazed by the simplicity! Man, someday, when I have to impress someone with my (faked) culinary talents, I'll make that. MMM MMM GOOD!

So, I'm feeling good, and beyond hectic (weird sort of euphoria has taken over this evening) and I'm off to play in some HTML. :)

Again and again

I have never been so happy to be wrong, (or to admit that I was wrong,) or so glad that I did something I didn't want to. I just can't believe how much better I feel now that I can be secure in the knowledge that, though they're gone, I did the right thing for my babies. Of course, now I'm crying from relief rather than regret, and I'm really not a fan of tears but these, at least, are 'good' tears. I have a new perspective on life, on the past, a much healthier one.

So, more about yesterday. Before we left Dr. Watts' office (actually we met with him in an exam room, and the whole time we waited, we listened to the baby in the next room over crying) we asked him which nurses were working in CVRU. I know that a disproportionate number of my favorites work nights, but I did ask if Candy was on. He wasn't sure, so he just called over to CVRU and checked. See, great guy that Dr. Watts. Anyway, she was on, as was Jessie and Shawn, so we ran across the breezeway and went up to say hello. It was a little strange. It wasn't a scheduled visit time, and we didn't (obviously) have a patient... We didn't know whether to ring the bell or what. Luckily, Candy came off the elevator behind us as we waited, and she just took us in. Dianne was there too. She had Nova a LOT, especially near the end.

Like I said last night, it was an emotional day, beginning to end. My nerves were raw, my temper was a little short last night. But I am so glad that I went, that I didn't decide to skip it. It was good for me. I learned something that actually, in a way, did change things for me. Part of grief is the guilt, and the doubt, and for me, regret. I really did learn not to feel guilty or responsible for the heart defects, I knew, rationally, that it was not my fault, but I did feel guilty for what they'd each gone through, regretted our decision, and the short lives they'd each had. Though I can't say that it's completely gone, yesterday was perhaps not a "healing" but it was certainly a huge step toward one.

It's funny when you really think about it, grief I mean. It's a selfish emotion. We hurt more for ourselves than anything else I think. I grieve, not so much that Nova is dead, but that he's not here. I mourn his absence from my life, and fill the void with tears. But in that pain, there is a desire to have them back. Of course I want Nova back. But now I realize that, for me to have him back, he would have had to suffer... Well, I wouldn't have wanted that anyway. Again, selfishly, I say this, I wouldn't have wanted him to experience undue pain, but more than that, I would not have had the strength to have watched him die slowly. It would have been an unbearable thing to take (emotional) responsibility for.

Why do you folks read this? I keep repeating myself, simply because I can't quite wrap words around the emotions I'm trying to express. I hope that, somehow, it comes across the way I intend, and not as though I've lost my mind! I go back and read before I post, and it all sounds like repetitious nonsense that is completely unsuccessful in its ability to convey what I'd originally wanted to say... Frustrates me to no end!


The meeting with Dr. Watts was easier, and harder, than I expected. I guess it was just different. I kind of expected him to do most of the talking, and I suppose he thought we'd be asking more questions, so getting started was a little weird. Once we started talking though, it went pretty well. I only asked 3 questions, easy ones really, but we talked with him for, I don't know exactly, about an hour I'd say. He's such a good guy. You know how you meet people, you just get a vibe? Well, he just radiates a humble sort of wholesome feel. I like him. A lot. Even more since we had some time to just talk. And just talk is what we did a lot of the time we were there.

So, what were my questions, right? Like I said, there were only 3. I asked what sort of infection was it that caused the sepsis, because at the time of his death we didn't really know if it was the fungal infection, or something else. It was the fungus. No surprise there really. I suspected as much. I didn't ask if the sudden drastic change in his condition was related to the Angiojet he'd had. I know that they said part of the reason to get rid of the blood clots was to get rid of any possible yeast colonies that might be hiding in them. My gut says there was a colony in that huge clot that was set loose into his bloodstream because of the angiojet drilling into it. Just a hunch, no medical backup there whatsoever, which is why I didn't ask. I, honestly, just don't want to know. If I'd asked and Dr. Watts had said yes, that would have started a pointless spiral of anger and self-doubt.

And while we're talking about self-doubt, my second question for him was, "How long would Nova had lived if we'd decided not to have the surgery?" This was where it got to the "harder" part of this meeting, because this was a question I'd been wanting to ask for years. I'd wondered it inside my head a thousand thousand times. But I'd never said it out loud. Saying it out loud was hard and is where the tears started.

Now let me explain that question, because it's as much about Alexis as it was about Nova. See, she only lived 12 days, and her death was directly related to the surgery, and her body's inability to readjust to the new pathway of her bloodflow. At the time of her surgery, I thought a lot about refusing the surgery, and even more when she died. I always regretted her surgery because I felt we'd have had her longer if we'd refused it.

When they handled Nova's care so much differently simply because they'd learned in the five year interim that the babies have a higher chance of survival if you wait until 3 months of age, I wondered even more about our decision with Alexis. So obviously, even though we never once considered any course of action other than the one we took with Nova, I had to ask.

His answer was not a number. He couldn't say, "Nova would have lived to be 2." What he said was, basically, that it would not have been much longer. That the way his numbers took that dip there a few weeks before the surgery indicated that he wouldn't have done well for very long. He also said, "I know what you're doing, and I don't want you to doubt yourself on that decision." He said he'd had patients who opted against the surgery. He explained that with these babies, the "blue blood" that causes the cyanosis builds up in the system, and causes the blood to thicken, which causes all sorts of other complications. That they live a life that is far from normal or comfortable, they suffer a lot in the end, and die miserable (miserable, miserable, miserable) deaths. He said that if he had to make the decision again, he'd do it again, the same as this time, and hope for fewer non-cardiac complications and infections.

That answered all my questions, removed all doubt, for both of my children's cases. Obviously, things didn't go the way we wanted with either child. That goes without saying. I wish I still had them both, I wish we'd had them longer at least, but not at their expense. I'm just not selfish enough to have ever chosen to make them suffer. I still feel like the last 6 weeks of Nova's life were wasted, lost in a drug induced stupor. I will never be "ok" with the idea that for 6 weeks and 3 days, he was not hugged or snuggled or held, but I wouldn't trade those 45 days, not if I were trading them for days full of pain, misery, or pain for him. I wouldn't wish one moment of pain on him. At least, with the way things happened, he was never hurting. Drugged, unconscious, unaware of our presence, yes, but never was he in pain.

So, thank you Dr. Watts, for putting to rest five years of doubt. It was a huge weight from my shoulders. I don't know how much 5 years of regret weighs, but I walked away from that meeting considerably lighter of spirit.

My 3rd question was completely unrelated to the care we received with either child. I wanted to know how long it had been since he'd done his first heart surgery, fifteen years.

He's gone through 20 years of schooling, and 15 years of experience. He takes each case personally, he truly cares about the kids. He goes every so often to underprivileged countries and performs surgeries (pro-bono no doubt) because, he said, "I get so much out of it." He says when he stops caring, it's time to quit. All of these things are a part of the vibe I mentioned earlier. Each component is intangible, I mean, it isn't hair color, or height, or any physical quality, but you can sense these things about him and they put you at ease, he is implicitly trustworthy, and comfortable, without any effort.

Anyway. It was hard. I cried more than I wanted to, less than I thought I might. The medical questions I had were answered amply, and laid to rest some real issues for me, and erased some major regrets. I try not to have regrets, they're typically useless and unproductive, but sometimes the big stuff manages to wrap a few fingers around my scrawny little throat and threaten to strangle me.

The aftermath has been an emotional sort of night, from one extreme to the other. I vacillated (oscillated even) between angry and weepy, and I don't envy my family's position of "my family" tonight. I didn't make it easy on them. This is another in a run of marathon length posts, for that I apologize. And I have more, but it will wait.

Sorry it took so long to let you guys know how it went. My computer wouldn't connect (highly unusual for cable internet, I'm always friggin connected damnit!) We spent several hours troubleshooting and eventually, after much too long, discovered that it was a bad wire from the router to my PC. Thankfully we had an extra, but you can blame the non-connectivity problems for the ridiculously long post. I couldn't actually post which gave me much too long to babble into MS Works.

Sorry. More later :)

Thursday, May 18, 2006

Deceased Consultation

In less than 2 hours, I'll be at the Sanger Clinic, meeting with Dr. Watts, so that we can ask any questions and he can have the opportunity to explain things we most likely won't even think to ask.

I've been thinking a lot about this appointment the last couple of days. Aiden's mom suggested that I write down my questions. I haven't. Ang suggested that I take a tape recorder so I don't forget the answers. I'm not.

I feel like I need to go to this appointment, but there is absolutely not one ounce of me that wants to. It seems so pointless. Dr. Watts, amazing though he may be, can't answer the questions that really matter, and the questions that he can answer make no difference in the long run, do they?

So why, with the expectations I have, do I feel such an overpowering need to go?

If this appointment had been 3 weeks ago, I'd have skipped it. I nearly called a couple of weeks ago and cancelled it... just a few days after I called to schedule it. Last night I was trying my damnedest to talk myself out of going, and couldn't do it. (Yes, that was an interesting internal dialogue.)

Fuck, I don't know. All I know is that I'm going, that I don't believe I'll learn anything that will do me any good, and that I'll be a fucking wreck afterwards. My hands are already shaking so badly that I'm having a hard time typing.

You'd have to know Dr. Watts to understand how uncomfortable and awkward this is going to be. He's a lot like me, or at least, like the me that the public sees in real life. I don't acknowledge my feelings, I don't cry if I can help it (doubt I'll be able to help it today though) and I am no good at all at accepting condolences or compliments. Dr. Watts is the same way. You'd think the combination would work well for us, but it doesn't really. It's just uncomfortable, with much speechless-making.

Wednesday, May 17, 2006


Read this today
...."and Hispanic groups are flexing political muscle demanding legalization."
Emphasis mine, because frankly, that's the part of this whole situation that bothers me most. It is a sense of entitlement, backed up by the strength of numbers (numbers that should never have had the opportunity to grow as they have - if only we'd have enforced the laws.) It's become a political strong-arming. It pisses me off.

No Lucky Charms

With 5 kids you'd think our cupboards would be full of sugary things. They aren't. There are fiber-filled o's and flakes with raisins, Crispix, Mueslix and such.

Sure, we wake up some days, hoping for something sweet: gooey chocolate, peanut butter balls, pretty pastel marshmallows.

But they all turn to mush once they're wet. Cocoa Pebbles get slimy, Marshmallow Stars melt and smear away, pale, like watercolors, leaving just sticky rainbow residue.

No. We have no Lucky Charms.

It's wiser to wake to something more substantial, more practical, like the unsweetened little baskets of Life.

Tuesday, May 16, 2006

Charleston, 1959

read this, and find the only thing good that comes of death: beautiful painful poetry.

just had a thought

Just had a thought concerning my present (and ever more predominant) mindset...

The force is not with me. I have joined the dark side.

Yeah OK, not the dark side exactly, but sure as hell the hateful side, at least for the night. I think I'm going to go soak in a bubbly-tub and see if I can find that sweet lil Erin y'all all know and love.

Or, hey, I know! Maybe she's hiding in the bottom of the rum bottle. Worth a shot.

A shot, get it? haha shit I slay me.

I Will Not Waste Years

On a completely different subject, one thing I committed myself to today was to not forget this month's support group meeting through the Maeghan and Heidi Heart Foundation. I wasn't completely sure I had the date right. When I checked out the page to see, I saw that they'd be using The One Year Book of Hope as a reference during the meeting. This is one of the books included in The Hope Bag that they sent. I hadn't so much as opened it yet, so I thought I'd better read a bit to at least get a feel for the book, and the philosophy behind it.

From the Introduction I learned that the author had one child, believed to be healthy until after her birth, born with a syndrome that is fatal, 100%. No cure no treatment. They normally live no longer than 6 months. After that experience, they were surprised by a post-vasectomy pregnancy, during which they discovered that this child would also have the same syndrome. The first child was a girl, named Hope. The second was a boy named Gabriel.

OK, so it's different than my situation, but there were enough similarities that my interest was piqued. Maybe this book wouldn't be a crock of misinformed silly advice after all. I mean, I could already, in just 3 pages, identify with the writer...

Yes well, a few more pages proved to me that it was a religious tome laden with scripture and spiritual advice. The sort of writing that tells you that everything is ok, and you're going to be just fine because, even if you don't understand God's plan, His will is perfect, if only you'll have faith and believe in Him.

I emailed Mika and told her that I couldn't make it. I'm afraid they'd start discussing things and praising the Lord and I'd get pissed off (anger comes more and more easily lately) and say something I'd regret. Better to just stay home I think. It isn't that I disagree with their way of grieving or coping. I don't have a problem with the fact that their faith in God gets them through. If that's what works for them, then more power to them. It's just that I don't understand it, cannot apply it to myself or my own experience. In the first few pages it says:
"One of the hardest parts of trusting God with my own experience has been reckoning with the fact that God had the power to make my children healthy, and yet he chose not to. How can I love him and believe he sorrows with me if he had the power to change it, but chose not to?"
p14 The One Year Book of Hope by Nancy Guthrie
Had she answered that question, I doubt I'd have ever put the book down. Instead she cites another author, Rabbi Harold Kushner, When Bad Things Happen to Good People. Apparently his opinion on it (through her interpretation - I have not read Kushner's book) was that
"[Kushner says]...God is not all-powerful. He suggests that God hates suffering but is limited in his power to eliminate it."
p14 The One Year Book of Hope by Nancy Guthrie
Which she obviously disagrees with, refers us to Hebrews 5:7-8.
(Hbr 5:7 Who in the days of his flesh, when he had offered up prayers and supplications with strong crying and tears unto him that was able to save him from death, and was heard in that he feared;
Hbr 5:8 Though he were a Son, yet learned he obedience by the things which he suffered)
All in all, her answer is that God's perfect plan includes suffering and death. That through these things, we would learn to obey Him.

Well, what a cop-out. What a total non-answer. She wrote a 424 page book, and by page 14 I can tell that, other than the snippets of her own experience that are shared throughout the book, this book offers me nothing. Her standpoint is obviously one of "Trust God implicitly. Do not question His will. Follow like a good little sheep and you'll be fine."

It seems to me that religious folks find a way to twist the scriptures to fit whatever the situation may be, mold them to explain (away) any and all pain, fear, or doubt that we experience in life.

Religion, to me, was invented so that man had, alternately, someone for which to blame for evil, and someone to credit for the good, someone to shake their fist at when wronged, someone to offer thanks to in times of plenty.

Personally, I find it more comforting to think that we live in some sort of uncontrolled chaos. Good and bad happen, and to whom is most likely a matter of chance. That seems more sensible than to accept the idea that if I pray hard enough I will have bestowed upon me some mystical cap of knowledge.

Most religions teach that God is a good and loving God, and that if you live your life as a good person, follow the Ten Commandments, believe in Him and His power and His will, then He will protect you from Evil. Only, Evil continues to happen, even to the most righteous of people.

And when Evil happens to you, and that magical answer doesn't come, when the light of Truth doesn't illuminate your plaintive little face, religion wants you to blame yourself, to believe that you are not worthy.

Well fuck that, no Mother deserves to lose two children, and when she does, despite how devout she was, no matter how good she was, regardless of how submissive she has always been to His will, then she damn well does deserve the answer to the question, "Why did you take, not one but two, of my children!?" and the reason we don't get that nugget of understanding is this:


And I will not waste years trying to beg some non-existent answer out of an uncaring ether. I will (eventually) come to terms with the fact that it doesn't matter how badly I need those answers, I will not get them.

Know how I know that? Because how many hundreds of people prayed for Nova? C'mon, all of you raise your hands... you there, in the back... you prayed too, didn't you? All of you, for my little Nova. And how many of you can tell me why he had to die?

I used to believe prayer worked, when I was little. Then I had Alexis, and so many people prayed for her. I know of three churches who had her in their prayer list, and many more who weren't in any of those churches. And it all accomplished nothing, and I realized that nothing I'd ever prayed about had come to pass.

While Nova was alive I relapsed. I prayed, oh how I prayed, day and night - for his survival, for my own strength, for guidance for the doctors and nurses who cared for him - and for answers. And it all accomplished nothing.

Now I remember why I made this post. I won't forget again.


The other day I was asked via email to submit a few poems for an upcoming ezine called Black Magma. In the world of publishing this would be called "being solicited for a submission." That sounds a bit pretentious to me, and I'm embarrassed to have used the phrase before. Heh.

Black Magma's inaugural edition is scheduled for September, though there is no web page to which I can refer you to just yet. There will be, and I will provide linkage.

In my hunt for things to submit, a search that makes me cringe anyway - because it entails sifting through a backlog of old unpublished work - I discovered something, nothing new really, so maybe I should say I was reminded of something about myself.

I have a terrible habit of latching on to a phrase or image, and writing it, and rewriting it, into many poems. It's bad enough that my theme over the years has become one of oppressive sadness. Seems I only write about death and loss, in the garden, where there's a full moon, and hair. I couldn't believe how often I used hair in my poetry. Hair. And gravel too... The resulting effect is that my poetry comes off as unimaginative and recycled. I have plagiarized myself (haha) and thereby siphoned away a vast amount of credibility.

I really have to work on some fresh imagery. I have to find a way to let go of an image once I've written it. And though I doubt it will happen so soon in the wake of my son's death, I need to change the mood and content of my over-all voice. Themes are great for chapbooks, but not so great when they are applied, like a wet wool blanket, to a lifetime of poetry.

Reading my work en mass is nearly enough to drive a person into a deep depression. Once I found five poems that would work, I emailed myself and suggested an anti-depressant. I probably won't take myself up on the advice though. Poets are like that, stubborn, and rather attached to their state of mind, regardless of how disfunctional it may be.

Anyway, I got up this morning with a long list of things to do. One of those things was to find places to make some submissions - to throw myself back into this (whatever "this" is.) I didn't submit a damn thing, but I did remember that several months ago, I was included in Scribe Spirit (issue 2 "Living Arrangements") and the April release of Blue House and I don't remember if I ever posted about either one. Both have been archived and there are now current issues out for both ezines.

Figure this post is long enough? Yeah me too, even though I have more to say. I talk too much, I hear that a lot...

TTHT 5/21

This week, the Tarheel Tavern will be hosted over at Ogre's place. He needs your submissions by... heh, I forget when he said he wants them so click the link and read his post.

OK, Posts need to be received by Saturday night at midnight, and the theme is "joy."

Joy... joy... something tells me that I'll be out of it this week!

FWD: Moms

One of the other mothers at the hospital (Aiden's mom) and I email back and forth sometimes, and sometimes, she sends forwards. I am not a huge fan of fowards to be honest (as you all probably have heard lol) but sometimes you get one that's just too damn cute. Here's the one I got from her a few minutes ago:

Why God made Moms -- BRILLIANT Answers given by 2nd grade school children to the following questions!!

Why did God make mothers?
1. She's the only one who knows where the scotch tape is.
2. Mostly to clean the house.
3. To help us out of there when we were getting born.
How did God make mothers?
1. He used dirt, just like for the rest of us.
2. Magic plus super powers and a lot of stirring
3. God made my Mom just the same like he made me. He just used bigger parts.
What ingredients are mothers made of?
1. God makes mothers out of clouds and angel hair and everything nice in the world and one dab of mean.
2. They had to get their start from men's bones. Then they mostly use string, I think.
Why did God give you Your mother & not some other mom?
1. We're related
2. God knew she likes me a lot more than other people's moms like me.
What kind of little girl was your mom?
1. My mom has always been my mom and none of that other stuff.
2. I don't know because I wasn't there, but my guess would be pretty bossy.
3. They say she used to be nice.
What did mom need to know about dad before she married him?
1. His last name.
2. She had to know his background. Like is he a crook? Does he get drunk on beer?
3. Does he make at least $800 a year? Did he say NO to drugs and YES to chores?
Why did your mom marry your dad?
1. My dad makes the best spaghetti in the world. And my Mom eats a lot.
2. She got too old to do anything else with him.
3. My grandma says that Mom didn't have her thinking cap on.
Who's the boss at your house?
1. Mom doesn't want to be boss, but she has to because dad's such a goof ball.
2. Mom. You can tell by room inspection. She sees the stuff under the bed.
3. I guess Mom is, but only because she has a lot more to do than dad.
What's the difference between moms & dads?
1. Moms work at work and work at home & dads just go to work at work.
2. Moms know how to talk to teachers without scaring them.
3. Dads are taller & stronger, but moms have all the real power 'cause that's who you got to ask if you want to sleep over at your friend's.
4. Moms have magic, they make you feel better without medicine.
What does your mom do in her spare time?
1. Mothers don't do spare time.
2. To hear her tell it, she pays bills all day long.
What would it take to make your mom perfect?
1. On the inside she's already perfect. Outside, I think some kind of plastic surgery.
2. Diet. You know, her hair. I'd diet, maybe blue.
If you could change one thing about your Mom, what would it be?
1. She has this weird thing about me keeping my room clean. I'd get rid of that.
2. I'd make my Mom smarter. Then she would know it was my sister who did it and not me.
3. I would like for her to get rid of those invisible eyes on the back of her head.

Monday, May 15, 2006


I hurt my foot. I don't know how I hurt it, I just know it hurts, like I dropped something on it, only I didn't. *shrugs*

I made gyros for dinner. (That's pronounced yee-row or gyee-row (hardish g in the back of your throat) depending on the dialect of the Greek that's cooking - but NOT ever pronounced jy-row, OK, please? For the love of all food Greek!?) They were so so so good. There is an art to tzatziki sauce, and I'm not telling it. Don't even ask.

It's been a couple of years since I had a gyro, since I was working at The (now non-existent)Southern Times Restaurant. It made me think about work, realize how much I miss working, dealing with people, having my own money, getting out of the house... I do miss Southern Times, and Kay, god she was a nut. I loved her. We swore we'd keep in contact, but we never did. The last time I spoke to her was the day the restaurant closed, the day Terra fractured her skull.

Anyway, where was I?

Oh yeah, missing work. I do miss working. At least, part of me does. I don't miss the aching feet, the sore back, the rude customers, the asshole Greeks I always managed to work for. I don't miss the 14 hour shifts or the tables that didn't leave a tip.

But I do miss the atmosphere of a restaurant, the kick ass adrenaline rush that sets in on say, Friday night at 6 o'clock, or Sunday afternoon around 1 o'clock, but mostly I think I miss feeling productive. I find that my sense of self-esteem begins to plummet when I'm out of work, and after 2 years of being unemployed, well yeah, I don't think I know who I am much anymore.

Oh, I know that isn't completely due to the fact that I've been out of work, I know a lot of it is the blow my self-esteem took from losing Nova. Same thing happened after Alexis. It's just part of the deal I guess. I don't really know how to explain it, I just know it happens.

So I've been mentally tossing around the idea of going back to work. I just don't know if I'm ready. I know I'll love the work, but I also know that waitressing entails dealing with families, and families often come with babies, and I remember what that was like after Alexis.

Maybe I'll try some part time night work doing something else. I'll bet I could get on at Wal-Mart or something like that. Maybe not Wal-Mart. Wow, what the hell was I thinking when I typed that? Anyway, you get the picture - something with less direct-with-other-people's-babies type of duties. We'll see, but it isn't like I'm going out tomorrow to start putting in any applications. Maybe next Tuesday. I have Maddie Wednesday, then the appointment with Dr Watts on Thursday morning, then one with the geneticist the following Monday. Maybe after all of that.

Super Long Post Alert

Mondays: there's something about them isn't there?

Fair warning, this post is interminably long, and full of information most of you won't even give a shit about. Thank me now for the boredom-induced nap you're about to take...

I spent my afternoon on the phone with various offices trying to sort out some red tape and bureaucracy concerning Nova's bills. I most likely will never know the final tally on his bills, but I know that for the month of March and the first 6 days of April, the doctors that visited and cared for him charged a total of $30,500+. That doesn't include medicines or anything, that's just from the various doctors (and even at that, not all of them were even listed) coming and checking on him, reviewing his charts, recommending changes, etc... A total of 21 separate claims (and I know there will be more, he was seen by at least2 doctors a day at the rate of $1261.00 a pop, and that isn't including any of the actual cardiology doctors from the Sanger Clinic) for the month of March.

The problem here is that I am not supposed to be receiving these bills. Medicaid should have covered 100% of those bills. Only, they're denying the claims.

So I called the company that handles the billing for the hospital (Health Services Foundation) and was told that they'd forward it to some sort of Investigations Department, but that I should call the main Medicaid office in Raleigh. I did so, was on hold 26 minutes, and then told that I had called the wrong office (Whaa?!?! Oh hellll no!) So they, thank god, transferred me to the correct person (not the correct department the correct person) who took all of 1 minute and 20 seconds to tell me that the problem was that Nova's primary care physician didn't submit an authorization code - without which, no bill from any physician other than him will be paid. But, all of his bills from December 2 through February 28 were paid, including the 13 days in NICU before he came home, and the most costly of all his bills - the open heart surgery on 2/21.

Anyway, I was supposed to call Health Services Foundation back again, and let them know that all they had to do was call Dr. Erckman's office, get the code, and all should be well.

I call them, and they tell me that I have to call Dr. Erckman and get the code and call Medicaid and give it them. I argue with the guy, because quite frankly, this is all administrative details that I have no business in. These are the things that normally get handled behind the scenes that the patient knows nothing about. You know, the way it was done for the first three months of his life... Besides that, the damn bills are from them, therefore the dispute is actually between Medicaid and Health Services, not me at all (yet.)

Amazing the psychology they utilize to get you to do their work though..."Well Ms Monahan, you need to call their office and insist that they give you the code, because it's their fault that you now have a thirty thousand dollar bill hanging over your head..."

He insists that I make the call and deal with Medicaid myself, so I call and the first thing the woman at Dr. Erckman's office says is, "Why in the world do they have you making the calls!? You shouldn't have to do any of this!"


Well apparently, Dr. Erckman's office was still unaware of the fact that Nova had died, so first there was the prolific sympathies and condolences, at which I immediately started crying, damn it. So then I have to explain the problem, again, for like the sixth time in the last 2 hours... Of course, she tells me that she won't give me the code. Why? Because it's against the law. Thank you Health Services!

Eventually she decided that she'd call both offices with the necessary code, even though each doctor's billing department is supposed to call the primary care physician's office and get this code prior to performing any services...

I have no idea what's going to happen. The whole mess doesn't even make any sense. And to be completely honest, for the time being, I don't care. I suppose I'll get back on the phone in the morning and make sure that the right person got the right codes, but damn.

And Thursday is the appointment with Dr. Watts. I cry just thinking about talking to him, hearing all the details, just seeing Dr. Watts again is going to be hard. He was so wonderful, and I know how badly he feels about what happened, even though none of it was his fault. So no doubt, I'll be useless at that appointment, unable to ask any questions, and unable to remember the answers to the ones that do get answered.

And then I fell down yelling "make it go away!"
~Blue October - Hate Me

Curving (take 2)


"You have seen the swirls
curving round between our secret
in through me, out of you"
~ Duchess, The weather, on Sunday

You were promise, curving
like the round of my belly
as light through crystal,
yellow to green to blue.

You were my secret, spilling
like sand from the bend of my elbow
into the way my hair tickled your face
as I lifted you.

Or was it you that lifted me?

You were hope,
now more than ever beyond grasp,
with a smile too wise to acknowledge death
and recognition in your eyes.

Yes, you were promise
like dew in the boughs of the willow
curving always away.

Badge of Honor?

So, like it or not, I've been labeled, via the loss of another child. After Alexis, I refused the "Angel Baby" addendum in my signatures. Now it's been pluralized, and regardless of my refusal to join the ranks of the "Mommy of Angel Babies" club, it's still how people think of me, how they refer to me in emails sometimes. Like it's a compliment. Well, here's how I see it.

I've spent 5 years, since my daughter's death, being told that I am not to blame. But you see, that's a double edged sword. Blame and credit are synonymous, the only difference being in connotation.

I cannot deny culpability, and take credit. To do so would make me a hypocrite.

So if I say that, for the most part at least, I have accepted that their heart defects, and their resulting deaths, are not my fault - I must also say that there's nothing for which I should take credit.

For that reason, I still refrain from being the proud bearer of the "Mother of an Angel Baby" badge in my signature.

Aside from that - I have to admit that, as comforting as it may be to some, I do not believe that my children are angels (and again, even if they are, it was not my doing...)

I'd like to be able to find some sort of solace in the image of my children playing together, keeping one another company, greeting other family members at the gates when they pass away or being cared for by family members who died in the past... But I can't. Only in my poetry do they do those things.

I am not a very religious person anyway, but that isn't how my beliefs on death or religion work. My background in religion (2 parents that were preachers) states that there were a set number of angels created, and that number never changes. I (as well as all of you I assume) was taught that in Heaven (assuming it actually exists) there is no pain or sadness.

To remember us, those who haven't died - to watch us go through the pain of grief, the difficulties of life, to witness us making poor choices and causing ourselves, and each other, pain... Those things would cause our loved ones pain and sadness wouldn't they? So, no, I don't believe that they're watching over me, guarding or protecting me.

And I sincerely hope that I'm right, because I cannot fathom making my children watch me go through this, knowing it is their deaths that cause me this pain.

I am not the mother of two angel babies.

I am a mother who, twice, has watched her child die, who has had the magic of life ripped from my arms again, who has watched two tiny entombed bodies being lowered into the ground. I am a mother who has had to learn and relearn the devastating permanency of death. So there will never be one of those counters beneath my name that proclaims my status as mother of two children who have died. I can't find anything joyful enough or boast-worthy enough in those experiences to merit a badge of honor.


Haha, how's this for "candid."

Sunday, May 14, 2006


Sheryl came over today, and she has OLD pictures in her wallet. What a hoot. I scanned these so you guys could see that I didn't always look weary and beaten. (Don't even try to argue with me, I can see how time and life have changed me physically, ok?!)

These are my senior pictures. They were taken the summer before my senior year, the summer of 1988. Eighteen years ago. Pre-motherhood. They're the only pictures I've ever had professionally done that I don't hate.

So this sent me on a goosechase for older pictures of myself. You know, to see just when it happened, if there was a magic moment when my age began to show. I can't find it, but here's another picture:

This is a picture of me in the summer of 2000, only 6 years ago. A few months before I got pregnant with Alexis. Man was I toasted, and obviously feeling a bit uninhibited.

I have a lot more old pics but they're hosted on geocities, and my browsing through the files seems to have overloaded my bandwidth limit over there. I'll do some more tomorrow... I might even embarrass myself ;) I've found some doozies. Long hair, short hair, on my head, sunburnt, afro'ed... whew. But I still look so young in all of them. But the crazy thing is, I could count on one hand the pictures I can find of myself since 2001. There just aren't any. I guess that magic moment of aging happened after that summer...

Heard the Word of Blog?

The new edition of the Tar Heel Tavern is up on The Magic School Bus:


Did you know that there was a total solar eclipse this year? I didn't, until tonight. In parts of Africa, Asia and Europe, on March 29th, they were able to view the entire process. I just finished watching a show about it on the Travel Channel. Seems a whole bunch of people traveled half-way around the world to see it. I'd have done it. In a heart beat. You know, if I'd have realized there was a total solar eclipse, and if I'd had the money, and if I hadn't been a little pre-occupied with Nova at the time. yeah, I'd have done it.

You can watch it here (3 min. 25 sec.) Yup, I'd have gone.

There's another coming, Friday, August 1, 2008. Looks like the best place to view it is in Mongolia. In case you want to start planning your trip...

As I was watching the TV, I kept seeing flashes outside. The way my couch sits in relationship to the window, and the angle the house sits in relationship to the road, sometimes the headlights of cars out there shine in and I figured that's what it was. Figured that, that is, until I heard the rumbling. Looks like it's trying to kick up a storm outside. I'd like to say that it woke me up. Unfortunately, I'm not sleeping - not that that's unusual - besides, it isn't even raining yet, just a little bit of rumbling and the ocassional flash of lightning. I doubt this will work itself up into anything loud and violent enough to have woken me up anyway.

Now if the damn dog would just shut up with the barking. Damn.

***Correction: the movie lasts 3 HOURS and 25 minutes (thnx Sheryl!) Fast forward to about the 58 minute mark - that's where the eclipse actually begins.


Nope, no pics of the solar system. The camera just won't take pictures of anything other than perfectly lit, perfectly still subjects. I did download all the pictures off of it though - the last pictures of Nova were on it. I didn't want to lose them if it decided to stop coming on or something. It's bad enough that I lost the ones I did when my pc crashed. Most of them were on the blog, but there were many that weren't. I'm holding on to the hard drive, in case I find someone who can retrieve them for me.

It was hard to look at those pictures on the digital. Things get so hazy so quickly though, they fade, so I'm glad I have them. I posted a couple on his blog, after wrestling with the idea a while. Part of me wants to keep them all to myself. They are evidence of one of the most personal and intimate moments of my life. But I've shared everything else with no reservations, I decided I should do the same with those. Most of them anyway.

Saturday, May 13, 2006


Mother's Day is tomorrow. Don't send me cards, k? thanks.

Kassi's glasses came in today, but not Scott's. That means we went to Rock Hill again today, and we'll have to go back on Monday (or whenever) when his come in. Kassi just couldn't wait for hers, they were falling apart, literally. The new ones are cute, I like them a lot. She's just thrilled to have two pair, two different styles. It's like some sort of fashion miracle or something, like one pair will match certain outfits better than the other... I dunno how she got so girly.

She and I spent most of the day playing god.

Seriously, we created the solar system for a class project. She did the basic research (size and order of the planets) last night, and we went to get the supplies. Now we're covered with paint, and the mess took over my kitchen, spilled out into the yard, colored my grass... Lots of fun. Then she did more research. It isn't due until Friday but she wants to get it done by Monday. All that's left is to figure out the logistics of adding the astroid belt, and the final copies of her index cards.

It's huge. We'll have to take her to school the day she turns it in. She couldn't do it the easy way... It's like a diorama, only fully enclosed with peep holes - the sun lights up and illuminates her galaxy... She has good (grand) ideas, and it came out pretty well, but I'm telling you, it's as big as she is. OK not quite, but damn well close enough.

Maybe I'll get off my ass and take some pics of it. Like I said, it isn't quite done, but close. I need to get the last of the pics off the digital camera anyway. It pretty well died. Flash stopped working, it won't work outside. We bought it for taking pics of Nova, it quit working totally a couple of days after he died. Guess it was just for taking pics of Nova.

why's this funny?

First, I wrote a heartfelt reactionary post to the email I got from a fellow heart mom from CVRU. It turned out, through a stream of consciousness thought process, sounding angry and sarcastic, leaving me to look bitter and hateful.

I saved it as a draft. Maybe sometime I'll revise it - so it matches my true intent.
Then I wrote another post, a random bit of nonsense that said nothing. I deleted it, and went surfing - you know how it is, clicking through cyberspace like a smooth rock on water.

Along the way I found this particular site... It's a good thought really, one intended to preserve the sanctity of marriage, the respectability of sex and of women. I appreciate that they take their stand without aligning themselves with any religious/feminist/political movement. They obviously (according to the "what this site is" and "what this site isn't" links) feel no need to justify, explain, defend or debate their viewpoint or the various reasons for joining their list. They're completely non-confrontational, and considering the volatility of their subject matter, I find that impressive on its own.

Despite that, I have to admit that it made me laugh, a lot. Hard. Really hard. I don't mean to make fun of it, really I don't. It's just funny.

Go have a look.

Friday, May 12, 2006

OK, so my reputation as a stat hound is widely known, and inarguable. So today I was checking my stats and saw that someone from Korea had visited, but the referring page and landing page were both long long strands of Google-d-goop so I clicked on it to see what it was.

Guess what it was?

It was my blog... check it out ...

OK, so it probably thrills me more than it should, but I think it's kind of cool that they bothered to translate me into Korean. I wonder how my poetry translates? Probably turns to gibberish eh? Hope not, hope they actually enjoyed their visit :)


OK, it's 7am, and I am not ready.

See, I woke up at 6:45. Highly unusual for me, but since Terra was asleep on the couch with me when I went to sleep last night, somewhere in my sleeping subconscious, I realized that she wasn't there anymore. I jumped up, a little freaked out, to find her. Found her, in bed with Scott - she never does that, no idea. Then I realized that it was 20 minutes until Kassi and Kory had to get on the bus, and I heard nothing in the house. No, wait... I heard the dryer. WTF? Awwww damn, yup, never did put that last load in the dryer, and it had all of Kassi's school uniform shirts in it.

*smacks self in forehead*

Now Maddie is wide awake from me running around the house, and I'm stuck staying up. Guess I'll go do those damn dishes. Oh hell with that. Guess I'll just drink this coffee first.

Happy friggin' Friday.

just cuz songs

Songs/lyrics that move me, for now - in no particular order
James Blunt - Beautiful Love this video

Natasha Bedingfield - Unwritten G'damn she's hot eh? No, that isn't why I love this song... really... but it doesn't hurt.

Blue October - Hate Me This video disappoints me with it's lack of artistry. A poor attempt at metaphor that comes out as a weak simile.

Blue October - Conversation Via Radio Never seen this video actually, but yeah, good song.

Nine Inch Nails - Only OK, this video includes one of those pin things, love it. Plus, I once had a really weird dream about this song.

Breaking Benjamin - So Cold They just shouldn't show this guy singing. Damn.

Angels and Airwaves - The Adventure Self-explanatory eh?

Nickelback - Photograph The simplicity of the video is perfect for the song's nostalgic mood.

Godsmack - Bleeding Me

Metallica - Bleeding Me

These last 2... same name, completely different theme, and both faves on my LOVE 'EM!" list of bands. Included these 2 songs because of their differences.

Thursday, May 11, 2006


It has been 37 days, 7 hours 22 minutes and I:
wrote a poem,
received Scott's T-shirts for work,
got news that The Lunar Companion will be arriving soon,
got my kitchen sink fixed (it's been basically non-functional, due to some major plumbing damage, for too long to even say,)
found out Erin got her socks (a requested b-day gift)
got final notification that the boys have been approved to receive benefits through Social Security (because their worthless father is on disability)
finished 3 loads of laundry
washed dishes,
cooked dinner (yup, dishes need to be done agin)
cleaned the livingroom
written the biggest part of a (way-late) newsletter
helped Scott build new doors for the storage building turned mower-garage,
and received yet another email that spoke of how Nova's blog touched someone in some way.

Now I'm sitting here, listening to the too-damn-loud-stereo in Tommy's bedroom, waiting for the dryer to buzz so I can fold load 4 and dry load 5, thinking to myself:
"Self, your dumb ass left the washer open so that last load never fucking washed!"

Damn it.


Cafepress is probably the fastest site I've ever seen. The shirts arrived today, and they look great - except that 2 of them are missing the logo from the back side. Leaving me to say this:

Cafepress is not only the fastest site I've ever dealt with, but they also have the most courteous customer service department I've ever had the pleasure of speaking with. No automated computerized bullshit, no snobby operators, no long hold-time. Simple process, apologies for the error, friendly, fast resolution - and I even get to keep the 2 shirts in question, in addition to the 2 new ones they're shipping out in the morning via 2-day air.

And on top of that, the products are high quality, easy to design, and reasonably priced.

This concludes tonight's Cafepress advertisement (pronounced the way the English do, thanks.)

**Oh, I forgot! I got an email today from saying my book had been shipped! Woohoo! I'm so excited about getting it.


First (rough) Draft:

You were promise, curving
like the round of my belly
as light through crystal,
yellow to green to blue.

You were my secret, spilling
like sand from the bend of my elbow
into the way my hair tickled your face
as I lifted you.

Or was it you that lifted me?

You were hope,
now more than ever beyond grasp,
with a smile too wise to acknowledge death
and recognition in your eyes.

Yes, you were promise
like dew in the boughs of the willow
curving always away.

The following poem is the one I posted about that sparked the internal conversation regarding plagiarism, and the poem I've posted above. I've emboldened the nine words that sent my mind on a tangent. As you can see, the poems are vastly different, and address a different subject matter altogether, yet, this poem will never feel like my own because it is so completely the offspring of the weather, on Sunday. The title is linked directly to the poem in its original context at Moontown Cafe.

the weather, on Sunday
by duchess

night air has draped itself around us like an envious world.
but we are
otherwise engaged within

you have seen the swirls
curving round between our secret
in through me
, out of you

for some reason, we had one.

i see another summer from our separate houses:
perfecting the art of being
seemingly present.
living out of windows, listening on
the breeze.

i can still hear your thoughts from this place.

if love were water
i'd be walking on yours.

i'll let you

dress me. undress me.

show me intention and that of the winds.

do not permit me to leave you.

let the weather change your life.

i know you have

been picturing yourself here
above me, below me.
trying to recall just how it is i move

who i am, how i got this way.

the taste of me
at different times of day
in various spots along a vertical drop.

no previous viewings of undilluted me
had ever made someone do those things
let alone be brave enough
to think they could hold me

while on fire and burning.

i want you to grab my hair on Sunday
Monday Tuesday.
pick me up and lay me down- come curve up
this time touch.

i have been picturing you here, inches from
another bite of lower lip.

i hear you locking my strands around your wrist,
close up inside.

so near to my heart, you can feel it
coming for you.