Groundhog Day

You know that movie "Groundhog Day?" That's what grief is like. You have to do the same thing over and over. You get through one day only to wake up and realize that you have to do it all again. You think you're tired of hearing me go on and on about Nova? Try living it.

And today is such a perfect day to feel the way I feel today. It's wet and bleak - raining without storming, light but not bright, just grey and crappy and long. These are the days I fight the urge to go the hell back to bed.

Thank you Rich

Just when things seem like they're going well, something happens to screw things up. Seems Scott's computer has contracted the Amish Virus and won't boot up.

Thanks Rich.

I'm gonna be on TV!

I'm gonna be on TV!

I just got done doing a television interview with Lenise Ligon from WBTV! She was interviewing me about my involvement with the American Heart Association's Heart Walk on the 16th. Not only will I be on, but they had Terra model the team shirts, so she's going to be on TV too!

It'll be on WBTV News at 7pm Thursday, and again on Friday morning somewhere between 5 and 7am in case any of my local readers want to take a peek at my adorable little girl!

Certifiable

The shirts came in today! Woo Hoo! They look awesome! I'm so happy they came and now I don't have to worry about them anymore! *whew!* Thank you Cafepress! You ROCK! They're so pretty, and so very very valuable to me, that I can barely bear to unfold one. Lord I hope I don't get anything on mine!

In other news, it looks like my telephone service (and cable and internet) are being screwy. Time Warner is having "issues" apparently. Issues that cause things like my IP address (and Trish's) is showing up as a California IP, my phone doesn't always ring when someone calls me, and my voice mail is on the blink. And apparently, these issues have been going on, unbeknownst to me, for days.

My phone rang at 7:30 this morning and, being still sound asleep, I didn't get to it before it went through to voice mail. So I check the messages, and there are all sorts of messages that weren't there before, from people who called yesterday - only the phone never rang when they called. The same thing happened yesterday, only guess what message was there? A message from the reporter that didn't show up... only the message was left on Friday, and it didn't 'go through' until yesterday!

We can call off the search teams now, the reporter is fine, and actually did call to reschedule, only Time Warner decided that I didn't need to know that, for two days.

I won't do the interview with her until the 22nd. But bright and early tomorrow morning the film crew for WBTV will be here. I'm absolutely terrified of it, but I'll get through it just fine.

Right?

Good lord what have I gotten myself into? Trish? You will pay for this. Bawk bawk my ass bitch. You.will.pay. Haha, you know I love ya, but damn! For the rest of you who don't know wtf I'm talking about, I fully intended to say no to WBTV, not because it isn't a great opportunity, because it is, but television and I just don't go together. My dearest friend in the world talked me into saying yes (she threatened to give me hell and squawk like a chicken every time we talked if I didn't do this interview) and so, I'm doing the interview - and she now laughs at me every time we talk (hahaha I made ya doooo it, I made ya doooo it.) I'm now on the hunt for any media outlets that would be interested in doing a spot on children with special needs. I mean, it's a cause that could use more attention, and I think Trish is just the one to tell that story...

I've taken to obsessing about the ticker at the Kintera/AHA site. The event goal is $1.2 mil. Right now it's at $800 thousand and some change. I check it hourly. I even took to writing down the totals so I could calculate the hourly average donations. In order to reach the $1.2 mil, there has to be an average hourly donation rate of $1941.75 from now till 7am Saturday morning. Think that's doable? Yeah, probably.

I'm a ball of nerves right now. I should be cleaning or something. But I'm not.

And Erin? They are Dalmation Mollies, and one of them is pregnant, and I'm fighting the urge to go get another tank, just for her. I am feeling this unbearable urge to save her babies. I know, it isn't natural damn it, but I'm not so keen on 'Nature's order' lately. For chrissake, I'm considering saving some baby fish. I'm officially certifiable now.

An Introduction

This is my son Nova.

He was born December 2, 2005 with
a Congenital Heart Defect.

When he was just 11 weeks old, he underwent open heart surgery to correct his defect. He spent eight hours in surgery, on the heart/lung machine, while the surgeon repaired his malformed heart.

Over the next six weeks there were several complications additional surgeries, and other procedures. Sadly, despite the doctors' diligent efforts, he passed away in my arms on April 6, 2006. He was just 4 months and 4 days old.

We are obviously devastated. He simply couldn't overcome the odds against him. He was a beautiful boy, so strong, and so inspirational. He was just learning how to smile, just discovering that he could laugh. I miss him desperately every day. And you see, Nova was not the only child that Congenital Heart Defects have taken from me. His sister Alexis (pictured on the right) died of a similar heart defect nearly 5 years ago.

People tend to believe that my losses are unusual, but they're wrong.
People think that Congenital Heart Defects are rare. They aren't.
Congenital Heart Defects are the nation's leading cause of defect-related infant death, and the most common of all birth defects. Nearly 40,000 children will be born with a cardiac defect this year, as many as 4000 of them will die. But doctors often can't tell parents about what causes these defects, or how to prevent them. There just hasn't been enough research, and unfortunately, there isn't enough funding to back the necessary research projects on this subject.

In an effort to change that, and to help other parents avoid the same devastating losses I have experienced, I've dedicated myself to raising awareness, and funds through The American Heart Association.

On September 16, 2006, there is a fundraising event called the Charlotte-Metro Heart Walk. It's designed to raise funds and awareness simultaneously by hosting thousands of walkers on a three mile course through uptown Charlotte. Funds go to cardiac research.

It is important to me that Nova not be defined by his death, but by the number of people who are touched by his short life. For that reason, I've created "Team Nova" and joined The Heart Walk in September. I’d like to invite you to help me give meaning to his 4 months on this earth by joining me in my fight against Congenital Heart Defects. My personal goal is $1000 $2000 $3000 so please, visit my "Team Nova" web page at

http://heartwalk.kintera.org/charlottenc/novasheart

and make a donation. That can be done either online through the website, or by printing a donation form from the website and sending a donation via postal mail to the address listed on the form.

If making a donation isn't an option for you, please, take a moment to post a link to this post on your blog or website, or tell someone you know who might be interested. Raising awareness is just as important as raising funds. As long as CHDs are unknown to the community, the lack of funding will continue to be an issue.

Tarheel Tavern

Heard the Word of
Blog?

Billy the Blogging Poet has done it again, and quicker than most! Guess all that flying he's doing is doing him some good ;)

The Book Meme

I've been tagged with the book meme. Rain said that she'd tagged me and that, though everyone else's participation was required, mine was optional. Well of course because I didn't have to play, I had to play! I have to play not just once, but twice, so here it goes!

Grown Up Version:
1) A book that changed my life: Actually, I think there have been several. The first was actually a children's book, that was actually a single poem formatted as a child's book and illustrated. It was the poem "Fog" by Carl Sandburg. I loved it so much that I fell asleep with it every night for years. That one book/poem is what I credit for my love of poetry and writing.

2) A book that I've read more than once: I rarely read a book more than once, but I'm rereading "Another Roadside Attraction" by Tom Robbins right now.

3) A book I'd take to a deserted island: My thesaurus. I'm pretty addicted.

4) A book that made me laugh: Don't Stand Too Close to a Naked Man - Tim Allen & all of Tom Robbins' books.

5) A book that made me cry: I don't read tear-jerker books (or, see #8)

6) A book I wish had been would hurry up and get written: For a couple years my answer would have been "Dark Tower" of the Gunslinger Series by Stephen King. Now that it's been written (with the most horrible ending EVER) I can't think of any others I'm waiting for.

7) A book that should never have been written: Poetic Acceptance

8) A book I'm currently reading: Slowly, and when I can handle it, I'm reading "The One Year Book of Hope" -Nancy Guthrie and "ABC's of Healthy Grieving" -Harold Ivan Smith & Steven L. Jeffers, and like I said above, I'm rereading "Another Roadside Attraction"

9) A book I'm planning to read I've procrastinated finishing: "The Coming Judgement of Nations" -Grant R. Jeffrey. It's just too steeped in religious jargon, and mathematics. So much so that I've been trying to read it for years, and probably will never finish it.

And the kid's version:
1) A book that changed my life: See #1 above.


2) A book that I've read more than once: "Goodnight Moon." Each of my children has owned their own copy, and I've read it so many times that I can recite it from memory. It's just a great kid's book. Also, "Guess How Much I Love You."

3) A book I'd take to a deserted island: A book of Adlibs. Surely that's years of fun!

4) A book that made me laugh: Stoo Hample's Book of Bad Manners. Any book that begins with a picture of a little girl eating boogers and ends with a little boy mooning someone is funny stuff.

5) A book that made me cry: Love You Forever (I'll love you forever, I'll like you for always, as long as I'm living, my baby you'll be...") and "Water Bugs & Dragonflies: Explaining Death to Young Children" - a gift to Terra from E2

6) A book I wish had been would hurry up and get written: I'm not waiting for the release of any new children's books...

7) A book that should never have been written: "Help! Mom! There Are Liberals Under My Bed!" By Katherine DeBrecht and "Why Mommy Is A Democrat" by Jeremy Zilber. (Thank you Michael for pointing these out to me! You're right, they're horrible!)

8) A book I'm currently reading: "Butterfly Eyes" This is a new one we got very recently, from the Observer reporter. It's a wonderful book, alternating between poetry and short stories - the illustrations are beautiful, not the typical cartoon style of children's illustartion. But Terra hasn't been in the mood to sit still long enough to read this all the way through yet.

9) A book I'm planning to read I've procrastinated finishing: "Please Mommy Don't Cry." This isn't actually a children's book, it's a book for grieving mothers, but it's written from the deceased child's point of view, looks like a children's book, and is illustrated much like a children's book would be. I can't make it through it just yet.

the race is on!

I got up early and dusted and vacuumed and got everyone dressed, Scott went to work. I obsessed about things like putting the clean dishes away and you know, the little stuff I'd see that needed to be done before the reporter arrived. I got everything done and blogged a bit, then worried that there were things that weren't done, and went back to cleaning things that were already clean. All this nervous energy (and frustraton over the geneticist's findings) had me wired and feeling like I was rushing around like crazy.

So when the reporter didn't show up at 4, I said something to Scott, who said that after I spoke to her one the phone the other day, I told him that she'd be here today at six, not 4. OK, I don't doubt it. I should have written it down because I really don't remember things very well lately.

So anyway, now realizing that she's supposed to be here at 6, I figure it's time to cook up a speed dinner. Begin cooking at 4:25, we were eating by 5, done and cleaned up by 5:45, and hurriedly waiting for the reporter again. Yes, hurriedly.

Well, it's 8:03 and she isn't here yet.

She didn't show up. But it isn't bad enough to be a no show, she's also a no call. I tried to call her, thinking hell, knowing me, I got the damn day confused too, wtf do I know!? (No not really, I'm positive about the day lol) Anyway, I called her and got her voice mail at work. Still no call back.

Those of you who know me know that I've spent 2 days screwing up the guts to do this, you know I've been a nervous wreck contemplating what I'd say, how I'd answer certain questions, and worrying that if there were pictures taken, I'd be making some horrible face in each of them. I've been doing all of the above for 2 days, for nothing.

Pffft.

So, I'm thinking it's pretty damn unusual for a reporter to contact a person, request an interview, and then blow it off, so now that I'm over the nerves and past the irritation, I am concerned that maybe something happened. I'm concerned, not because she didn't show (because shit happens you know?) but because she didn't call. I mean, that's just weird, right?

So.

But hey, I did my hair and put on make-up and got 'kinda' dressed up. Anyone want to babysit for me so Scott and I can go out on a date while I look pretty? Oh, wait, it's race night - never mind.

Isn't happening

In 2 hours the Charlotte Weekly reporter will be here, and here I sit, blogging. Heh. Guess I'm not too damn nervous.

Nova's been gone over 5 months now, and I just got the genetics results in the mail. Sure, we'd already gone to talk to Dr. Wagstaff, but getting the paperwork is just... Different.

The results are a sort of summary of their findings for both Alexis and Nova. They put Alexis' last name as Monahan. I hate it when they do that. She never came home from the hospital and because of that, and her very young age, she was always pretty much called "baby girl Monahan." Like she never deserved her own name.

Basically, all it says - in doctorese, is that neither of them were positive for 22q 11.2 (a.k.a. DiGeorge Syndrome) Apparently the Chromosome analysis and 22q 11.2 FISH deletion analysis were normal on Alexis, and Nova had further testing, a chromosome analysis, the 22q11.2 FISH deletion analysis and a subtelometric probe FISH analysis (I don't even know what this 'subtelometric' is, or what FISH stands for) and all three were negative.

There is no reason for my children to have had their heart defects because:

The only currently known cause of familial pulmonic atresia with ventricular septal defect is 22q11.2 deletion, which was not present in either Donovan or Alexis. I am only aware of one report of pulmonic atresia in parent and child. Nothing is known about the possible genetic basis of recurrence of pulmonic atresia with ventricular septal defect in siblings. I have tried to determine if research studies were being carried out on families that have had two or more children with this congenital heart defect, but I have not been able to find any research projects looking at this question.

That was hard enough to know before they died, harder to hear after they died, and unbelievably frustrating to see in print.

The only good news in the letter was that the geneticist believes that if we were to have another child, we'd have a 25% chance of the same thing happening again. That's considerably lower than the 40% he quoted at the appointment in May (or was it June? Who knows.) So Yay! We have a one in four chance of having another heart baby. Glad I got my tubes tied, even though I still cry about the fact that I can never have another baby.

At least he was sweet enough to add that he was

"...sure that this has been very difficult for Ms. Monahan and Mr. LeClair to have two children pass away from the same severe heart defect. I assured them that the cardiac problems in Alexis and Donovan were clearly not caused by anything that either of the parents ate, drank, smoked or were exposed to either prior to or during the pregnancies. I think that the risk of similar cardiac problems in children born to any of their other children or other relatives is very low.
I enjoyed meeting with Ms Monahan and Mr LeClair. I encourage them to contact us with any further questions.

No point in contacting them, they can't answer my questions. It must be frustrating to be a geneticist in a situation like ours. There just aren't any answers, not until there can be more research, which obviously isn't happening...

Ass Kickin'

These are the numbers for the whole team. As you can see, not everyone hit their $200 goal, but as a team we far surpassed the goal!


I even got an email congratulating me on meeting my personal goal. You guys should have all gotten one of those, lord knows it was all of you that met my goal! Wish I could give each of you a big hug!

I ordered the team t-shirts on the 4th, they were supposed to be shipped out on the 6th, they still weren't shipped as of noon today. There is SO little time left, I started to freak out and called cafepress.com's customer service #. Seems there's a glitch in their system that made it so the order didn't actually get logged! But, because cafepress has the most awesome customer service, they expedited the order, shipped it this afternoon with upgraded shipping (1-2 day I believe they said) and deducted all shipping charges! Yay Cafepress!

Brendon came home with another donation today, from one of his teachers. She trusted him with a $20 bill, right in his pocket, no 'security precautions' at all. That's trust eh? That'll show up in his account probably Monday.

I have an interview with Charlotte Weekly tomorrow at 4pm. An interview with WBTV (local tv station) on Tuesday, possibly another interview with the Charlotte Observer reporter one day this coming week (though I won't swear she'll need to see me in person again before the story comes out) and The Observer's photographers will be at the Heart Walk on Saturday. I'm so freakin famous that I'm feeling the need for a sports car and plastic surgery! Yeah, whatever.