Sunday, April 30, 2006

It's all coming back to me now

The three hour trip back from Cherry Grove/Myrtle Beach seemed longer than the 13 hour drive back from Troy because I was leaving the place I love most on this earth.

The weather was great Friday (we arrived about 1:30) but Saturday and Sunday were only in the mid 60's with lots of wind. Like, 30mph sustained wind. Ever been out on a long ass pier in wind like that? MAN it was chilly. We wore sweatshirts most of the time, and actually had to turn the heat on this morning.

We spent a lot of time out on the beach though, and the kids actually went in the water on Friday and Saturday - crazy fools. They had fun though, even though they were purple, with chattering teeth, and covered with goosebumps. We all came home with red noses and sand in our pants.

Today after we checked out of the house we went out on the beach for a few hours before heading home and had a real blast looking for shells and building sandcastles. We had crackers in the van, and there was this one seagull Kassi was trying to 'pet.' I sent Kory to get the crackers and we ended up with about 100 seagulls fighting for crackers. We finally got them comfortable enough to eat out of our hands. Scott took several pictures of it, I hope they come out when we have them developed. (Remember, the digital is screwed and won't take outdoor pics, so we're back to FILM for god's sake.) The best part was when Kory got peed on, seriously. OK, he thinks it was pee, but birds don't pee do they? I think it was water off the bird's beak, but we haven't told him any different ;)

However the pictures turn out, I have to say it was my favorite part of the whole weekend. But, when I post the pictures you guys have to remember that the wind was blowing at 30 mph, and not make any wise cracks about our hair. Next time we go, I'm shaving my head and wearing a ball cap, I swear!

The house was about a block off the ocean, and at night, after the kids went to bed, you could sit on the balcony and listen to the waves crash. So we sat out there, drinking coffee, staring at the stars, being very quiet, and listening to the waves crash in the distance. That was pretty damn nice too.

I had hoped to go out to the beach in the evenings, by myself and do some writing, but there just wasn't time for it. That's ok though, I wrote some, in my head, the whole time we were there, so I'm sure I'll have something to post soon.

It was good, I managed not to cry the whole time, though I have to admit that I had my moments. The worst of it was coming home. Driving back into Monroe. I guess some part of me hoped that it would all be "better" when we got home, but it's all still here. Silly really, it was there too, it's not like you can just leave it somewhere and wait for it to go away.

I thought a lot about that concept while we were there, trying to decide if I'd even want it to go away if I had the choice. I think I'd keep it, hold on to the grief. As much as it hurts, to wish it away would be like wishing I'd never had him, denying how much he meant to me.

It wouldn't seem fair to do that, not in my head anyway.

Friday, April 28, 2006


Bye! We're off to the beach.
Keep happy Sunshine (anti-rain) wishes for me.
Be back Sunday evening, have a good weekend guys.


I sit here for hours, staring at this computer like there's some chance that all of my questions will be magically answered through the screen, if I just sit quietly for long enough.

The Maeghan and Heidi Heart Foundation sends out what they call Hope Bags to all the grieving parents they know of. I didn't meet Mika until after Nova was admitted for his surgery, but she sent me a Hope Bag for Alexis right after we met. It's a tiny glass angel and some grief support books in a satchel/hand bag that one of the founders makes by hand. Since I got one for Alexis just a few months ago, I didn't really expect to get one for Nova's death, but I did today. I never cracked any of the books in the first one, but tonight I opened one from Nova's called "Morning Will Come" and learned something. I realized that I don't -at least right now- want to hear anyone else's story, especially when they dress it up in scriptures that all contradict one another.

There's another book in there called "Please Mommy Don't Cry." I can't even look at it, thinking that Nova wouldn't want me to cry does something to my insides that I can't quite explain. But it's almost like whoever wrote it thinks I shouldn't cry, and is trying to make me feel guilty for feeling the way I do. I'm sure the book itself isn't like that, but between the title, and the picture on the cover... I just can't make myself read it.

Shit, I can't seem to make myself do anything more than sit here and stare at this screen, waiting for the mysteries of the universe to solve themselves on the Google homepage.

Thursday, April 27, 2006

Weather Report(s)

Google Weather

Yahoo Weather

Gotta love it when two different websites have such differing opinions on the weather. Not that it matters really, if we get thunderstorms, I'll love every minute of them. If it's sunny and gorgeous, that's wonderful too. I mean the water temperature is going to be a little on the cool side for much swimming anyway. I'd just like to know which it's going to be.

Anyway. We're leaving in the morning, we'll be back Sunday evening some time.

No Day at the Beach

No Day at the Beach

I can see them,
dancing in the distance -
a sea-kelp forest
in the ocean of silence
where I tread.

They are:
grace and artistry,
words I cannot speak,

poetry that I wish
would entangle itself around me,

and immerse me in beauty

Wednesday, April 26, 2006

The Death Certificate

I got his death certificate in the mail today. Such a cold and impersonal document to mark the passing of such a beautiful soul.

He deserves more, more than a few slots filled in according to governmental protocol, he deserved more than 4 months and 4 days.

It just wasn't enough.

A meme

I was reading over at Goofy J's place and saw that she'd done a meme. I rarely do them, especially if I'm tagged, but this one - well... Maybe I just needed a distraction.
I am:
  • Tired of being strong.
  • Glad I have friends & family who love me enough to allow me to be weak.

  • I want:
  • Peace - in my mind, and in my life
  • A maid

  • I wish:
  • Life was less complicated
  • I lived at the beach

  • I hate:
  • Ignorance
  • Most "-isms"
  • Cold weather

  • I miss:
  • The obvious
  • The smell of Lilacs
  • spontaneity

  • I fear:
  • Spiders
  • Horses
  • The dark
  • Train whistles at night
  • That the people I love don't really know how much I love them

  • I hear:
  • Voices in my head as I'm falling asleep
  • The voice of calm when the wind roars through the pine trees
  • The innocence in my children's voices growing away

  • I wonder:
  • Why people choose American Idol over LOST
  • Why people still live anywhere with harsh winters, like Buffalo NY
  • Why people choose to be miserable and angry

  • I regret:
  • Having regrets

  • I am not:
  • A good cook
  • A redneck (though I do hate shoes, and speak with a drawl)
  • The person I hoped I'd become

  • I dance:
  • In the car
  • In the shower
  • With Terra in the yard

  • I sing:
  • Only if someone's life depends on it, which isn't often.

  • I cry:
  • At movies
  • At commercials
  • At songs
  • Alone

  • I'm not always:
  • The sharpest tool in the shed
  • Very friendly, especially in the morning

  • I make with my hands:
  • Meatloaf
  • Flowers die, so I make Scott take care of them.

  • I write:
  • Words on paper to make the full feel empty
  • Words on paper to make the empty feel full.

  • I confuse:
  • Most anyone I talk to
  • My kids, on purpose

  • I need:
  • Things I can never have
  • 30 minutes to wake up in the morning before I can function
  • To get my GED

  • I should:
  • Quit smoking again
  • Stop cussing
  • Learn to drive

  • I start:
  • To worry when my kids are 3 seconds late
  • To call people, but hang up
  • Laundry, then leave it in the dryer for hours

  • I finish:
  • 2 pots or more of coffee a day
  • Poems, when they finally tell me how they end
  • Scott's sentences

  • I tag:
  • Absolutely no one.
  • Angels

    I just got a huge box of these. I sell them through my grief support site. They're really pretty cute, you put your child's picture where the face goes. I have one of Alexis, and one with Nova's picture in it too.

    Normally they sell for $9.95 plus shipping, but I'm running out of room to store them, so I'm marking them down to $7.95 and offering free shipping. All profit goes into the fund to help parents who, like me, lose a child and have trouble paying for the burial.

    (Paypal is having issues so email me if you can't use the button)


    Having a child (or 2) die makes things complicated on so many levels.

    I just got an email from Scott's sister. She wants to have a t-shirt printed for their mom for mother's day with all the grandkids' names printed on it. I have burdened my children with oddly spelled names, and she wanted to make sure she spells them right on the shirt - so she asked for the spelling of their names.

    No problem, except that I don't know whether to send 5 kids' names, or 7. If I send 5, then I feel like I've failed to acknowledge Alexis and Nova - plus if she wants to add their names, now she has to write back and ask for them specifically, which is bound to be uncomfortable. If I list all 7, then I feel like I'll make her feel obligated to add them, which is, again, an uncomfortable situation. I don't know how to reply.

    How many children do I have? Am I still Alexis and Nova's Mommy?

    Tuesday, April 25, 2006

    waxing philosophical - or losing my mind

    There has been so much death this spring. There are so many just in the circle of blogs I surf, that I've got to use 2 hands to count them all.

    Maybe God, or Nature or whatever, believes that the buds and blooms and colors and sunshine will assuage the pain - paint it over, like white-washing a dirty fence.

    It isn't really working for me, dunno about the rest of you. But it has managed continually remind me to remember what's important, to appreciate every minute of every day, to make the most of life, whatever your situation may be. I want to learn to embrace things in a way I've never managed to before - at the risk of sounding horribly cliche, I want to live life to the fullest.

    I am, in some ways, trying to re-order my priorities. I go outside and play with the kids more, get angry less, and understand that every opportunity I pass up may have been something unexpected and wonderful - even if it was something I was dreading (like talking to the new neighbor-lady yesterday - she's an odd bird, and I have been avoiding even looking in that direction, but seeing the smile on her face when I walked up to her and started just chit-chatting, well, I was glad I decided to go over.) I'm feeling more philosophical, like every damn thing is significant. I find myself wishing my life were video taped 24/7 lest I miss some sweet amazing thing one of the kids might say or do.

    I want to hug everyone and let them know they count, that in the unknown scheme of life, they are important. I feel oddly connected - to people I once didn't connect with at all, and even to people I don't know. There is something bigger, something greater - and I'm a part of it.

    If only I could understand how, or why...

    Randy's Obituary

    Randy A. LeClair, 32
    PITTSTOWN - Randy A. LeClair, 32 of Tamarac Road, died on Sunday at his residence, surrounded by his loving family. He had been under the care of Community Hospice of Rensselaer County.
    Born in Troy on March 7, 1974, he was the son of Constance LeClair of Troy and the late Robert LeClair Sr. who died in 2005.
    A graduate of Troy High School, Randy worked at Warren Tire in Waterford and at the time of his death he was employed by Sealy Inc. in Green Island.
    He was a volunteer for the Peck Hose Co. in Waterford and the Waterford Emergency Team. Randy was a member of the West Stephentown Baptist Church.
    He enjoyed fixing automobiles.
    Survivors include his fiancee, Jacqueline C. Duval, with whom he resided; his mother and stepfather, Constance LeClair and William Piche of Troy; his children, Randy LeClair Jr. of Cohoes and Jenna M. LeClair of Pittstown; his stepchildren, Kristin Duval of Pittstown and Brian and Krystal Charron of Cohoes; his siblings, Linda Washington of Ballston Spa, Theresa LeClair of Troy, Tina LeClair of Whitehall, Robert LeClair, Jr. of Waterford, Scott LeClair of North Carolina and Christine Piche of Troy; along with many nieces and nephews.
    Funeral services will be on Thursday morning at 11 from Parker Bros. Memorial, 2013 Broadway, Watervliet, where Rev. Trygve Tomlinson will officiate. Interment will follow in Elmwood Cemetery in Troy.
    Relatives and friends are invited to the funeral home on Wednesday from 4 to 7 p.m. for visitation.
    Memorial contributions may be made to the Jenna M. LeClair Educational Fund in care of the funeral home.
    For directions and guest book, please visit:

    Testing testing

    I hate my voice.
    I think that is probably the basis for my hesitancy about talking to people on the phone; I despise the sound of my voice when recorded or transmitted over any electronic device. I refuse to leave voice mail messages, I have never made a recording of my voice for use on the web. The nurses in the hospital suggested that we make recordings to play for Nova while we weren't there. I couldn't do it because I couldn't stand the thought of him having to listen to the sound of my recorded voice for any length of time.

    I don't mind my speaking voice in person. As a matter of fact, I never even give it a thought when I'm talking to someone sitting beside me, but the idea of other people hearing my voice via some electronic device really makes me cringe. I am insanely jealous of people with beautiful voices.

    So I've called the ODEO number at least ten times, with every intention of reading the last poem I posted. I keep hanging up on it. I can't seem to make myself speak into the phone. It's a shame. It's also something I really need to get over, because I believe that it really does add something to a piece to hear it read in the author's own voice, with the proper emphasis and tone...

    Spring in the Weathered Garden

    Spring in this Weathered Garden

    The mulch is bleached, but the plants -
    the plants are tie-dyed.
    Green and yellow sunshine faces hover
    over the ashen hue of weathered woodchips.

    Even weeds -mostly weeds really-
    thrive on the remains of an autumn that,
    turned to something else,
    no longer lives in color.

    They, like me, refuse to sleep
    in the presence of memory,
    with riches sucked away by
    the coming and going of the sun.

    Monday, April 24, 2006


    ODEO sure looks like a neat thing. Wonder if I can work up the nerve to make audio posts? As if I have anything to say.


    Just a little (too much)

    I have completely given up on all the thousands of things I normally do. I'm a huge fan of bloglines for keeping up with my favorite blogs - I logged on a bit ago and there were 71 new posts. SEVENTY ONE! That's about the same number of loads of laundry I brought back from New York, and roughly the same number of phone calls and emails I have to catch up on. Plus, I only have a few days and we're off again! Yes, we're off to that beach trip we can definitely not afford now that we went to Troy, but fuck it, I'm not willing to lose the money I spent on the reservations because I'll lose the whole amount anyway, because the chances of the place getting re-rented in the next 3 days is damn near null. I may as well go if I'm going to lose the money anyway, right?

    (This is where you all agree with me ok? Because I NEED to go to the beach right now, just as badly as I need the air I'm breathing, trust me...)

    Of course, we'll be there Friday afternoon through Sunday afternoon, and the weather is not exactly kids-at-the-beach friendly. But I don't really care.

    New York was good, but it was also hard, and I'm really looking forward to some serious down-time, away

    safe and sound

    We're baaaa-aaack! Thanks for checking my mail and feeding the mutt.

    We stayed a couple of extra days, since we so rarely get to New York for Scott to visit his family. He's been up a few times in the last few years, but not enough, and the family all got together and had a big cookout and then there was his Aunt's birthday party on Saturday, so we stuck around for some of the fun stuff to help lighten up after the funeral. To be honest, I think Scott's mom just needed him around for a while, and we obliged her quite happily.

    The drive up was pretty uneventful, except the van broke down before we left Monroe (haha, that's a whole other blog post for later) and it rained for the first 2 hours each way. But the kids were exceptionally well behaved, at least for the trip up. We won't discuss the drive home, k?

    As for the stay... Well, Troy, New York and Monroe, North Carolina may as well be on different planets, so it took a little adjusting for me. Everything is so far away in Troy, no matter where you are, you drive 20 minutes to get where you want to go. Here, man, it's like 5 minutes to anywhere we normally go, and anything we typically need. His family is so great though, I mean, just really great people, and I think I enjoyed myself as much as Scott did. And just between us, I was a little worried since they hadn't seen me in several years. I ought to just get it through my head that I worry too much.

    You see, I haven't been to Troy since Bren was a baby - he's about to be 9. I've had 3 children and lost 2 of them since my last visit. Scott's been, but for various reasons, I haven't been able to go with him the last several times. I was a little worried that they thought I hadn't come because I was stuck up or something. The truth is, I adore his family, and I'm a little jealous of how close they all are. My family isn't exactly the big-family-cookout-for-the-hell-of-it kind of family.

    Anyway, I've got a week's worth of catching up to do. More later.

    Tuesday, April 18, 2006

    My absence is nothing to be concerned about... I haven't lost my mind, been institutionalized, or decided to let this blog grind to a halt.

    We'll be making the trip to Troy, NY (12 - 16 hrs, via conversion van, with 5 kids... God help us) for Randy's funeral. We'll be out of town until Friday evening. I doubt I'll have time to do much blogging while we're there, so there probably won't be anything new here until the 21st or 22nd.

    Meanwhile, someone please feed and water the dog and check our mail please. And in the event of another storm, please check to see that the patio furniture is still secured.

    Wish me well, pray that no one goes on a rampage in the van during the trip, and that the van makes it there and back with no troubles... it is a 1992 afterall!

    Because I can

    OK, to offset all the earlier crap as much as possible:

    Today's mail also included a very sweet card and a Guardian Angel pin that I love - both from a woman I've only met since Nova.

    The dryer died, but we were lucky enough that we had a "spare" (Ma's dryer from her house before she moved in here) that I had forgotten about. Therefore, we didn't go without, my clothes aren't mildewing in a pile somewhere, and by the grace of God, I avoided the whole Laundromat scene, which I HATE.

    The $7500.00 doctor bill is most likely a paperwork error, because all of that doctor's charges were covered before.

    Dinner was excellent, well worth the wet clothes (which can be dried). And the shoe full of water was funny damn it, even at the time.

    The rain came with thunder and lightning, which thrill me, you all know that.

    The bill for Nova's funeral is already set up on a do-able payment plan, and will be just fine.

    My house is slap full of all sorts of chocolate stuff, which will, at least temporarily, mollify any other complaints I may have.

    There is a new poem written for Nova to add to his Book of Memories (See most recent previous entry RE; cafe cafe.)

    I discovered the Google personalized home page, which totally kicks major ass - and it can come with Tetris, which is the second coolest game of all time!

    The worst part still is finding a way to make it to Randy's funeral, and that's mostly workable too. So I'll devote my considerable intelligence and Easter-Bunny-fueled energies to tackling that problem, because frankly, I can do things - one at a time - when I remember to do things that way!

    Monday, April 17, 2006

    cafe' cafe': Attempt to Mark the Death of a Child

    cafe' cafe': Attempt to Mark the Death of a Child


    Rainy Days and Mondays...

    Today was both, in the worst sense of the phrase. First, we received a phone call from the funeral home to come up and sign a new contract because the fellow who usually does the contracts was out of town when we were planning the funeral... We knew we'd have to do this, but I just didn't want to go back there, if you know what I mean. So I the appointment to go in at 3:30 to do that, and took some clothes out of the dryer, to start the next load.

    Well, when I turned it on, it just growled at me and refused to function. We had an element replaced in it about a year ago, and it appears that the guy who did that failed to re-install a rather important grommet. It's been squeaky lately, but we didn't think much of it. Apparently, the squeak was because the drum was off-kilter because of the missing grommet. Now the hole where the grommet belongs is oblong, notched out, and chewed to hell and twice the size it should be. There's no fixing it.. Well, we could fix it, but it would cost as much, if not more, than just replacing it. It served us well for the last 8 years, but it was one of those super-sized dryers that held like 2 loads at a time with no problem. I'm going to miss it.

    OK, so we head out the door to the funeral home at 3 and the storms they had been promising hit. You know, the type of torrential rainstorm that completely obstructs your view beyond the windshield, complete with 80mph gusts of wind, thunder and lightning. Of course, there's no drive through in the funeral home, so we arrived outside his office drenched to the bone. We shook off like the couple of ratty dogs we are and went in... to be told that we owed $538.00 more than we'd previously thought.

    We signed the papers (what are you going to do, refuse to pay it? Dispute the charges? It's our son's funeral arrangements!) and headed back into the waterlogged outdoors... Of course, the only way for me to get back into the van was through an ankle deep puddle just outside the passenger door.

    Then had to stop at the grocery store for an integral dinner ingredient - repeat the above shower, twice. Then come home and read today's mail - including a bill for over $7500.00 that is supposed to be paid by the insurance, but was apparently denied... No way to know anything for sure, because our mail arrives after all business offices close.

    In between and around and through all of this, we're trying to figure the logistics of a mid-week trip to New York for Randy's wake on Wednesday night, and funeral on Thursday. I do not in any way relish 14 hours in a van with 5 children, particularly Terra... God help us. And the concept of the funeral itself intimidates me, I'll probably cry more there than I did at Nova's - for Scott mostly, who lost his son and his baby brother in less than 2 weeks, and for Randy's wife too, and that baby girl that just lost her Daddy, and for Scott's mother too, who just lost her youngest son...

    And this concludes my bitchfest for Monday, April 17th.

    Thank you Tammi!

    This is a huge thank you to Tammi. I needed something to make me smile, this did, in a huge way!

    Sunday, April 16, 2006


    "When love is lost, do not bow your head in sadness; instead keep your head up high and gaze at the stars for that is where your broken heart has been sent to heal."
    ~ Unknown

    Surely the stars are images of love.
    ~ Philip James Bailey

    The sad and solemn night
    Hath yet her multitude of cheerful fires;
    The glorious host of light
    Walks the dark hemisphere till she retires;
    All through her silent watches, gliding slow,
    Her constellations come, and climb the heavens, and go.
    ~ William Cullen Bryant

    Now twilight lets her curtain down And pins it with a star.
    ~ Lord John Campbell

    irises again

    Irises Again

    There are irises again,
    full blooms on proud stalks
    that tower above the rest.

    Hostas are intimidated into smallness
    beneath their burgundy glare, I am not.

    Last season, perhaps,
    but this winter delivered
    heaven in a basket; spring
    was the definition of fear.

    For four months I held death at bay
    with wishes, limp fingers, and gauze.

    So there are irises again.
    What have irises got on me
    after a losses like those?

    Admittedly, this needs huge amounts of refinement. I just wanted to get something out there to prove to myself that at least the poetic ideas still exist, even if a bit dimmer than I'd like.

    easter 2006

    I'd like to say Happy Easter, but I'm not going to. It's been 10 days since Nova's death, and Scott just got the call telling him that his brother Randy passed away this afternoon.

    I'm trying to conjur the sweet picture of my babies with their Uncle Randy. Maybe they're having an Easter Egg hunt as we speak.

    American Heart Association

    Cross posted from Nova's Blog:
    When I decided to start this Blog, chronicalling the trials and triumphs we'd experience during Nova's life, I had no idea that there were other heart families out there doing the same. I never expected to meet so many wonderful people, or to have so many of them (you) become such a part of my daily life. I have been amazed, repeatedly, by the strength and compassion I've found in all of you.

    One of the members of this circle, Michael, of Wisdom Heart, has recently found out that his daughter Sophia would be going in for surgery. My heart goes out to them. I know it was not the news they'd hoped to hear, and as parents, we all know how frightening it is when our child faces open heart surgery.

    I also know that there's nothing I can do to lighten their emotional burden right now.

    In March he announced that he'd be walking in the American Heart Association Heart Walk in Kansas City, and was taking donations to support the AHA. Lately our small circle of Heart Families has amazed me with the amount of generosity that is shown when one of us is having a difficult time. Today, I tried in a small way to return that generosity and made a donation in Nova's name.

    I'd like to encourage each of you to do the same, and show Michael, his wife Patty, and their beautiful daughter Sophia, that we're here for them right now.
    I made this post earlier on Nova's blog. Later I realized that Michael had made a thank you post, and I was replying to it. See, I made that donation to Michael's cause in Nova's name, because I realized halfway to Walmart, halfway through a mental list of Easter basket fixings, that mentally, I was shopping for 6, but would only be buying for 5. I gave that money to Michael's cause in lieu of Nova's "Easter basket."

    Now for the weird, but totally true, part:
    The word verification strand for my reply to his thank you post was "dxmort" - in doctorese/Latin... Dx means diagnosed, and Mort is the Latin root word for dead. I don't think there was any better way of getting validation for making that donation.

    Nova didn't need that basket - he's gone. But other children do need that money for research, to save other babies' lives. Without it, thousands of mothers will have children born with Congenital Heart Defects, children who, like Nova will be unnecessarily dxmort.

    Saturday, April 15, 2006

    And the dead tree

    And the dead tree gives no shelter, the cricket no relief.
    The dry stone no sound of water.

    T.S. Elliot - The Wasteland


    I didn't realize until this afternoon that I hadn't yet explained what happened to Nova - how he went from doing so well, to doing so poorly in such a short period of time. Eventually, we'll make an appointment with Dr. Watts so he can answer any final questions we might have. But here's the basics.

    What killed Nova was actually an infection. He'd had others, including the yeast infection, but this time it was something far more serious, and turned into a condition called sepsis. He was gone before we even knew what sort of infection it was, or where it originated, but what matters is that sepsis results in shock, which basically means that the body refuses to pump blood to the extremities in order to keep critical blood flow to the core organs. This causes a major drop in blood pressure, basically, the heart continues to beat, but the blood goes nowhere. Not even to the brain.

    Nova was brain dead. We had the choice to either wait for his heart to stop beating on its own, or to unplug the ventilator. Either way, Nova was already gone, the only organ that was functioning was his heart. Ironic, isn't it?

    We didn't see any point in letting it go on, this false sense of life that really isn't life. So we spent a little time with him, told him how much we loved him and how proud we were of how hard he'd fought. Then they removed the tubes and IV's and removed the ventilator, and I held him and rocked him until his heart stopped. We stayed with him for a while afterward, I don't really know how long - I just couldn't make myself put him down and leave him, knowing it was the last time I'd see him.

    It was hard, but it felt better than making him go on, lifeless, for our own reasons. To do that felt selfish. I take comfort in knowing I was with him when he died. He loved to be held and snuggled close, and he hadn't been able to be held in six weeks. It was just right that he died in my arms.

    Nasa News

    Scientists have formed a theory explaining a phenomena I've been seeing lately. It seems that when a star goes supernova and dies, there is a cloud of debris left in the wake of the explosion. Gravity then causes this dust to collect, and a new planet is (or, can be)formed.

    Yup, no surprise to me. I've watched as all of you have gathered and become a new world for me, all because of Nova's death. It's been quite a stellar thing to experience.

    Friday, April 14, 2006

    A day

    I've been surfing incessantly today, looking at the cost of accommodations at the beach. It's ridiculous when you have a family our size, because we need 2 rooms just to have enough beds. In all my searching I discovered that it would be cheaper to rent a beach house or condo. I'm not going to quote any numbers, because they damn near choked me, and I don't really want to do that to you guys... But it should give you an idea of what I've been looking at. And hell, I haven't even been looking at the good high dollar places! I don't know how people do it. But that's ok, we'll make it happen. We deserve it, and we'll make it happen.

    A weird thing happened today. We have a glass-top table on the back patio. We've had it for a couple of years and we use it a lot. It's one of my favorite places to be on spring mornings and summer nights, especially nights like tonight, when the breeze is warm and the moon is full, and I want to be, not alone necessarily, but in a quiet place. Anyway, this afternoon, I was sitting at the kitchen table talking to Ma, Terra was sleeping, Tommy and Kory were fishing with their uncle, and Kassi and Bren were out playing on the swings and stuff. It was blissfully peaceful, and unusually quiet, when I hear this horrible crashing noise outside.

    I knew immediately that it was the table, and had visions of the two of them horseplaying in the yard and someone getting knocked through the table and sliced to bits. Panicked, I ran through the house, expecting the worst. My mind went through this instantaneous refresher course on first aid, and I was fully prepared for a hospital trip by the time I made it to the back door, where I found my table in a million tiny little pieces in a pile under the metal frame, and not a kid in sight. OK, no blood, this is good... Now where are the kids and who do I need to beat for destroying my table? (It's amazing how fast a mother's mind can switch gears!) Well come to find out, it spontaneously exploded for no reason whatsoever...

    Actually, best I can tell, what happened was that the wind was blowing today, and apparently, a gust picked up the sunshade/umbrella and then died down and dropped it, ramming the pointed metal end into the table and shattering it. It looked like crushed ice, not one shard was more than about 1/2" in any direction. The table started out at about 5' x 3'. It ended up filling a heavy-duty garbage bag.

    So the younger 3 were a little upset that the boys got to spend the day with their uncle. Scott worked all day of course, so there wasn't a lot I could do to balance the scales for them. We spent a lot of time in the yard playing and getting filthy. I weeded the garden for a while - pushed Terra on the swing a LOT. She says, "Higher! Higher! Up Up da sky where baby Nova lives!" It eats me alive every time. She's also told me that 'Dolphalin' is a baby bird, flying in the clouds... Childhood is so pure, so honest, and beautiful... Sometimes it is too bright to look directly into, too sweet to hear without covering your ears.

    We went to DQ tonight, just Scott and I and the 3 that were home all day. The night was warm with a cool breeze and we sat outside Terra hasn't exactly mastered a cone yet, but she has mastered the art of entertainment. She kept one couple who sat inside pretty amused by trying to tell them all about her chocolate ice cream through the plate glass window. Bren amused himself by watching the green syrup disappear in those strange negative-space puddles that form when you drink a slushy, and Kassi, well, I think she was just hoping to nab the attention of some cute boys. Much to her chagrin, there were none.

    We had fun, it was nice, and relatively peaceful without Tommy and Kory nipping at each other. But it was time to go when a woman carried in a baby boy who was about 6 months old. It was just all I could handle.

    Someone that I "met" fairly recently through another website emailed me today. We never really got well acquainted because shortly after I joined that site, I found out that Nova had the heart defect, and just stopped going anywhere much online. She and I have been emailing back and forth lately, she's such a sweetheart. Today she asked what I thought of having a star named after Alexis and Nova. I never thought of it before, and I really like the idea. Of course, between that conversation, and that gorgeous full moon out there, I found myself staring at the sky tonight.

    The big dipper was right above my house, full of nothing, and pouring it out over my roof. A big sticky scoop of darkness that smelled like baby powder and tasted of memories, and for a minute, just a second really, I wondered if he's eating well.

    How he loved his bottles...

    Uncle Randy -

    The last few weeks have been so overwhelming. Nova was all we could concentrate on, and really still is. But I know that many of you had been reading because of my posts about Scott's brother Randy, who had leukemia and was waiting to get a marrow transplant. It was another story that evoked so much response from so many of my readers and friends, that I feel guilty for being so remiss in updating you all about him.

    Randy was in and out of remission several times. They'd done blood typing on the entire family to try to find a family match - the best case scenario is to find a sibling match. Unfortunately, none of the siblings were a close enough match and they searched the marrow bank. There, they found 5 perfect matches, which is nothing short of a miracle. They planned the trip to Boston for his transplant and Randy went back to the doctor for some final bloodwork. The bloodwork showed that he was out of remission again.

    About 3 weeks ago, the doctors told the family that there's nothing more they can do for Randy. He is living his final weeks of life, with the biggest part of his family at his side. His wife has decided to stay home with him and spend as much time with him as she can. She says he has good days and bad days, but is actually handling it pretty well. He's planning his own funeral arrangements - something I can't even begin to comprehend.

    With that knowledge in mind, Scott had to call his mother last week and tell her about Nova's passing. He didn't want to do it, didn't want to burden them with more than they're already dealing with. They made the same choice for Randy, and didn't tell him right away.

    I got an email from Randy's wife this morning. I want to share the part that I still, hours later, have stuck in my throat.
    "I wanted so badly to call you but I was at a loss for words. We didn’t tell Randy right away, he had a few rough days, but when he asked I was honest. He wanted to know if we heard from you and how Nova was doing..."

    "I told Randy that he needed to look out for Nova up there and he said he will."

    Thursday, April 13, 2006


    I find a lot of writings in the blogosphere that express my thoughts in a more eloquent way than I can muster. Tonight I found a post about expectations, and interpretations. In other words, acceptance. Well worth the read, if you've got the time to devote to being properly introspective, and the energy to change your life by way of changing your mind.

    replies and repayments

    New posts are down below, this one is going to float awhile so it gets seen

    There are so many posts for and about Nova. Songs, poems, thoughts, prayers... So many that I am struggling to keep up with finding them, let alone reading them or replying to them. I want to post a link to each of them, and I know I'll never be able to find them all again. Technorati says there are 9 links from 8 sites, but that is only a fraction of them.

    So if you've posted something about Nova and our story, please please PLEASE email me the link to it, I'd like to do a sort of scrap book, both an online version, and an offline version, to keep with his things.

    Also, for those of you (many) generous souls who have made a donation in Nova's name, (If I haven't contacted you personally, I apologize, things have been so hectic - and there are SO many of you! I've just gotten lost totally as to who I've thanked and who I haven't!) please email me your home address or your paypal info, so that I know how I can repay you. I'm afraid most of the paypal donations came in without any snail-mail addresses, and I don't want to miss anyone who needs me to repay them.

    MAIL ME!!!

    And now, I think I'm going to try to catch up on the email - you're all such wonderful friends, and there is MUCH email to be replied to!


    It has been nearly five years since I last stepped into that magical place where sand and ocean meet. I was pregnant with Alexis and I got up at 5am to video tape the sunrise. I sat with a cup of coffee on a wooden bench, smelling life and describing it all to her, waiting to record the birth of the day. It was foggy and the sunrise was grey and slow, lacking the vibrant colors I had hoped for.

    Just a few months later I lost her. And I haven't been back since.

    I think it's time. There is something almost religious about the ocean for me, something about it that makes me ache with a spiritual fullness, makes me feel alive and in love with the world. Everything makes sense there, everything fits.

    I need things to fit, I need to feel full. I want to fall asleep to the sounds of the ocean, and wake up to the smell of it. I want to sit on that bench again, at sunrise, and pretend that Nova's there with me. Just the two of us, watching the sun rise.


    Surely Nova's story isn't over, is it? I know that his impact on our world continues. I can't bear to think otherwise. So I'm going to continue to post about the things that prove that his tiny little fingers are still shaping this world in some way.

    Today, I got an email from one of Nova's nurses. It brought tears to my eyes, and showed me another way that he left his mark. I'm posting it here, to share it with all of you who became so involved with his story, and with our family.

    I just visited your website for the first time. I have to tell you that I think you and your family are very special people. When work called to tell me that at that very moment Nova was passing away in your arms, I was at once sad that I couldn't be there and happy that I wasn't. I thought I wouldn't have anything to say to you. I thought how ironic that after you, Scott, and I had spent hours talking (well mostly you and I) that I wouldn't have anything to say. But at the funeral, I did not feel uncomfortable at all talking with you.

    Nova's funeral was the first child's funeral I've ever been to and it was very difficult. But I am so glad I came. As nurses guarding over your children, I think it is important to see the whole story. What happens after you all leave CVRU, no matter what the outcome. But it also adds perspective to my life outside of nursing.

    I feel very privileged to have been able to share in Nova's life with you. I loved Nova. I loved taking care of Nova. It would be awful to say that some children are not special, but some touch us, as nurses, in ways unexplainable. It is not by chance that you came to have favorite nurses. It is because we felt something special for Nova. People always ask me if I have to remain detached in order to do my job. But I feel just the opposite. I have to be able to become attached to some in order to do my job.

    I will never forget Nova, you, or your family. I think that you all are so much more than meets the eye. I read the part of your website that said people offered an ear to listen but you wouldn't know what to say. Well, I don't believe that. You are truly gifted in the way of words. And I want to make sure you know that on any given night of the week, or even the weekend, you can call CVRU and talk to any of us. And you can call me personally as well. My number is XXX-XXX-XXXX. And you don't have to have anything earth shattering to say. I promise.

    You and your family will be in all my prayers

    one year ago

    Reposted from Wednesday, April 06, 2005

    Death and Resurrection

    I begin a journey through hell,
    clench my jaw, gnaw on the intangible.
    Lucid fires lick my lips and burn
    the words from my mouth and I,
    I must reconstitute them from
    my ashen tongue, with blood
    and wishful thinking.

    I scribe them then in scrawled lines
    from the jagged tips of my battered teeth --
    forged, as steel,with desolate flame
    and frigid liquid realization.

    It is my daily death and resurrection,
    immortalized in ink, indelible,
    unforgotten in the scars on my fingertips.

    posted by Erin Monahan @ 3:05 AM 0 comments

    Wednesday, April 12, 2006


    There's something I should say, but I don't know what. A poem I should write maybe... I don't know. This whole thing has been so full of everything, and I feel so empty despite the wonderful things that have happened.

    It is a craving - I remember it... Finding myself in front of the refrigerator, or staring blankly into the cabinet, no idea how long I'd been there, but knowing, again and again, that what I wanted so desperately wasn't in there.

    I have been so lucky, so loved, so much a part of some inexplicable miracle, and I'm glad of it. It has been much easier to survive, and will undoubtedly be much easier to bear. But that is not to say that I am not terribly unspeakably empty, broken, and craving.

    I have laughed and smiled more in the last few days than any grieving mother has the right to. I don't regret a moment of it. Nor do I deny that I just cried over the ending bit of LOST because I want my magic island, my miracle cure, my fat and naked baby - wrapped in sand and rocking in a cradle of branches on the beach, backdropped by all the sappy cliches of crashing waves, and the night sky draped behind us like Elvis painted on velvet.

    Is it a little crazy to be jealous of fictional characters in a weekly drama? Probably, but I've done very little in the way of defending my sanity over the years, especially the last 5. I know I lost my mind after Alexis died, I don't know if I ever "got it back" so to speak. I think I just managed to become functional, in spite of it all. Now... Well, now I wonder if I haven't completely lost it, maybe I just haven't realized it yet, the insane don't ever know they're insane, do they?

    I have received a load of email, offering to listen if I want to talk. I appreciate them, every one. But what am I supposed to do? Call someone up out of the blue and say, "Ok, I want to talk..." Do I start the conversation with something "Hi! How you doing!?" I mean, what is there to say really? We all understand the futility of words, my call would only serve to make someone else uncomfortable. I understand myself enough to know that I'd never cry, it isn't allowed, I don't do it, I can't do it, not with an audience. I don't want to talk anyway. Conversation isn't what I want. What I want is for this all to be unreal, undone, over.

    But you see, this isn't something that will ever be over. There is no audible click that signifies the moment when you're done. There isn't a party with confetti and balloons and much rejoicing when you've paid your penance, there is no door prize. Grieving is never done. It is a journey that seems to have no real destination. Somewhere, some time, I read a saying, one that seemed perfectly valid at the time. It said "Grief is a journey from loss, through pain, to healing."

    Now it sounds like the directions that Map gives Dora. Loss, Pain, HEALING! Loss pain, HEALING! Swiper no swiping! Oh maaaaaan... How utterly ridiculous it sounds now. What does "healed" mean exactly?

    It is something I once thought I was. Or maybe something I tried to convince myself that I had achieved. Now, it is something I wonder if I'll ever be.

    Giving life after his death

    I had briefly mentioned an email I received a few days ago from the mother of a 21 year man who was addicted to drugs. I had been waiting for her permission to post her actual email. I got her reply this morning, and I'm absolutely overjoyed that she consented. I truly feel that each of us has a purpose in life, a reason, a goal to fulfill - to change someone, to touch them, to better them in some way, or to leave them open to some way to better themselves.

    I think that this letter may mean more to me than any other I've ever received in my ten years of being online, because it exemplifies the power of the struggle Nova experienced, and how much he has and still is impacting our world.

    He was such an amazing little guy. I miss him so very much, but if his passing has saved this woman the same pain I'm feeling over losing my son, then his life was well lived indeed.

    I've changed the son's name, and omitted hers, for the sake of their privacy.

    ----- Original Message -----
    Sent: Monday, April 10, 2006 8:54 AM
    Subject: Nova

    Hi Erin, I just wanted to thank you for being the kind of Mom you are. Because you shared your abiding love for Nova with us all through your writings on the net, he indeed touched lives in unexpected ways and places. I have to tell you the way Nova's life affected my 21 yr old son's life, because it's nothing short of a miracle.

    Jack is a drug addict, pacified these past 8 months on daily methadone doses to curb a 4 year self destruct, hammering every drug imaginable. Of course this beats strolling the streets for just any ole drug to inject, but as you know, it too is an opiate rendering many of the same side effects as any opiate. It's a 'ball and chain' and all the other cliches' used to describe addictions.

    I shared your post stories about Nova's daily struggles with Jack. He was humiliated to learn a little baby boy on the East coast, through no choice of his own, had to have some of the same drugs he's abused by choice. John enters a rehab on Good Friday, April 14, miraculously inspired by Nova's suffering and death.

    Nova had a voice because of you, Erin and his courage will be heard and respected far beyond those hospital walls if you will please keep writing.

    This story was also a part of Nova's eulogy, and will forever be a part of my memory of the miracle that is Nova.

    just a few

    Ang talks to Nova

    Erin posts a memorial (but I can't find the permalink, so scroll.)

    Mary and and her husband Juan take a few moments here and here for Nova

    Laura is touched by Nova too.

    Mike commemorates our friendship, Nova's funeral, and much more.

    James writes a poem or two for Nova.

    Nova on the Women's Self Esteem boards

    Kriss shows her support for Nova

    Erika talks about Nova (and man have people followed her link!)

    Michael's post about Nova's passing

    Julia dedicates this poem to Nova

    Martin references a poem in memory of Nova

    Vickie writes a poem for Nova

    Drawing on Words posted a Poem for Nova...

    A Poem written by Chelsea for Nova, and more here

    and one that Shyloh dedicated to Nova.

    The Walsh Family breaks the news and says a prayer.

    Waterfall posts Logan's Song for Nova.

    Billy helps me say goodbye

    Cicero sends his condolences.

    Mandie says a prayer

    Carla shares her thoughts - and they spread to the comments here.

    Nova (and Alexis) makes a cameo on Blogher.

    Tuesday, April 11, 2006


    It's been a very long 12 hours since I woke up. I'm tired and a little empty, but I wanted to write down all the names of the funeral attendees.

    Scott, myself and the kids. (obviously)
    My mother
    Sheryl and Jerry (sis and bro in law)
    April (my niece)
    Noelle (sister)
    John (brother)
    Trish and Rodney (my best friend/sister and her husband)
    Tiffany, Shanda, and Mel (3 of Nova's nurses)
    Mika and Gina (Maeghan and Heidi Heart Foundation founders)
    Mika's mother whose name escapes me.
    Arlen (the preacher)
    Garren and Peggy Dean (landlord)
    Mr. Trull (funeral director)
    Mrs. Deese (Works for Lakeland Memorial)

    Shanda, Tiffany and Mel are 3 of my favorite people in the world. Jane is another nurse who I love dearly, sent her thoughts and love - she worked 12 hours last night, and had to work 12 tonight, so she couldn't make it. I think I might call her in a few minutes. (Ha, I stopped midpost and called her. I adore her, she's wonderful!)

    It meant so much to me that they came. The nurses were his family for those 6 weeks, and I love them. There were others that I'd hoped could make it... but I'm sure that most of them were either working, or just getting off of work. I know that they were there in spririt.

    There were flowers from Eve (Eve, it was gorgeous, seriously honey, beautiful) Trish, Jimmy (Sheryl's boss - another breathtaking arrangement) and The Maeghan and Heidi Heart Foundation. I wish I could save them all forever.

    I wish I'd have had a tape recorder to tape the eulogy Arlen gave. He pointed out the meaning of his nickname "Nova" and the scriptures and overall message were really beautiful. He is one of those people, one who just exudes love and acceptance and faith and an unspoken power that just radiates through you when you're near him.

    Mika's sister sent enough food to feed the neighborhood. Seriously. And it wasn't fried chicken, which is the official comfort food in the south, and boy was I glad! It was spaghetti and salad and garlic bread and 3 deserts and enough sweet tea to drown our sorrows... and it was damn good, let me tell you.

    We came home, and my family came with us, and we gorged ourselves and had a lot of chaotic conversation, what with 6 kids in the house. Noelle picked up her daughter on the way over, and she's 3... Terra and Maddie had an absolute blast together. It was nice, and loud, and a little crazy, but all in a nice family togetherness sort of way.

    After the family left, we went to get some balloons. 8 heart shaped ones, one for each of us. We wrote secret notes to Nova on little cards that we tied to the ribbons, and we took them out in the yard and set them free. Yes, I do know that Nova will never read them, but it gives the kids something tangible to do, something that they can use to say their goodbyes, since we had no viewing and they hadn't seen him in so long.

    All the kids' balloons soared - mine and Scott's got tangled in a tree. We refused to go inside until they came loose, so we lit a fire in the firepit and spent some quiet time together, an impromptu campfire night, sans marshmallows. My balloon eventually came free, but Scotts never did, so we took a star shaped balloon from one of the flower arrangements and he did it again. Now that one, it flew forever, and we watched it until it disappeared.

    All in all, it was a beautiful day. It wasn't somber and depressing at all. There were a lot of smiles and laughes and love and conversation and hugs. Some tears, sure, but it was more about appreciating the gift of his life than anything else.

    I'd have rather the family came for that homecoming party I was planning, but all in all, this was good.

    Our digital camera refuses to take outside pictures anymore, it just comes out all white no matter how we set the settings, so we used a regular camera. There are pictures of the casket and flowers, pictures of the balloons, but I have to get them developed tomorrow, and when I do, we'll scan them and share.

    Monday, April 10, 2006


    Let me say this, and be clear - funerals are not for the dead; they are for the living.

    There is a certain arrogance in our humanity that convinces us that the dead are listening to our insignificant words of sympathy and grief, a sadistic need to watch as the casket is lowered into the ground, a selfish desire to take that final opportunity to say the things we didn't, to attempt to assuage our guilt or emphasize our love.

    Nova is gone.

    The emptiness of my arms is all the convincing I need. He can no longer hear my tears or declarations of love, but for four months and four days he knew that he was loved beyond expression. Every moment he was in my arms, from his first breath, we adored him, and he was comfortable in that knowledge because we showed him.

    He isn't looming somewhere above or below us waiting for us to say the things we never did, but should have, he isn't expecting some too-late apology for wrongs we perceive that we have committed against him.

    And he is not the empty lifeless form inside a 36" box waiting to be swallowed by the earth. He is not.

    He is the magnetic force that has brought together hundreds of people he never met. He is an indescribable energy that changed people's lives, touched people's hearts, brought tears to innumerable eyes. He is the reason I received a note from the mother of a 21 year old man in a state Nova never even heard of - an email to thank me for changing her son's life by telling Nova's story.

    He is the beautiful face and courageous heart that touched people in ways I can't even explain - he is the stimulus that brought about a generosity of spirit that I have never before experienced.

    I will always miss him, I am left missing a part of me that can never be replaced, aching for another moment to hold him, smell him, feel him against me in the quiet of night.

    I will also live feeling a sense of pride in what he accomplished in so short a time, blessed by having had the chance to see his beautiful smile and know it was for me. And I will always feel honored to have carried him inside of me, honored to have given birth to the phenomena that is Nova.

    friends like all of you

    I've been doing a lousy job of keeping up with replying to your comments. I'm sorry. I want to say again though, thank you all so much. So many people I've never met have said that they'll be at the funeral in thought and spirit... I'll be honored to know you're all there, in whatever capacity, physical or mental. I am such a lucky woman to have friends like all of you.

    my heart

    A Poem written for Nova:
    Thank you Chelsea
    white dwarf implosion and the supernova

    can you feel
    the rings of saturn
    on your fingers?

    the impositious reaching
    of a life
    built from strung-together

    stars hang
    in a spring's bleeding

    the coronal aura of
    your very existence.

    in that family's universe
    you were integral,

    you were a world.

    in a sunset's
    dying blush,
    we feel the warm breath
    of your dissolving
    on our skin.

    just a link

    Today I set you free
    to be who you need to be
    Our paths crossed
    In a magical place

    It was the perfect choice
    But your heart was too fragile
    Our destination was not meant to be

    Day by day, reflections
    Of us in shattered glass
    This is a place I can never return
    Our destiny was never meant to be

    Poems of love will now fade
    Trails of tears will be distant
    In the oasis two soul mates
    Stand with faces silent

    The thunder of forgotten dreams
    Will now sound throughout infinite
    May you be at peace
    Under a gossamer sky
    And fly on the wings of an angel
    Throughout your journey

    Sunday, April 9, 2006

    Donovan "Nova" Zane LeClair

    click to read full sized

    Mr. Whaley (sp?) at McEwen Funeral Home wrote up the obituary. He was pretty impressed with the fact that so many people have gotten so involved in Nova's life, especially in the online world. (I'm not sure what he meant when he said "internet pay chain" ...) He told us that he's been blessed through his experience with us, and our experiences. All I know is that I'm so impressed with how peronally he has taken our son's arrangements. He's been wonderful.

    He called earlier today to tell me that he had Nova ready and that if we'd like to come spend some time with him, we could. We declined. I held him as he died. We said our goodbyes, let him know how proud we were of him and how brave we thought he was. Now I want to remember him as the baby in this picture. I just couldn't go back and see him the way he looked after he died.

    a moment of


    the last three days have not begun with my usual habit of silently reciting my children's names...

    Terra doesn't realize that Nova is gone...
      I haven't the slightest idea how to explain it to her...
    that no matter what I say or how I try to rationalize, none of this makes any sense.

    once the funeral is over, there is nothing to keep me busy or keep me sane...
      I am not this strong.
    he was really and truly my last child...
      and I will never bury my face in his fat little neck and smell him again.


    I love you Erin. Thank you so much for this beautiful new layout to pay tribute to Alexis and Nova. It's is beautiful, and so very fitting. Only you would have been able to make something that so perfectly speaks to what I'm feeling.


    I am just sadistic enough to keep staring at that picture, knowing that looking at it rips my guts out.

    I just got an email from the mother of the baby next to Nova in CVRU. It was the first time in days something felt "normal" or at least, familiar. The hospital, and everyone there, and all the noises and the smells and the damned schedule of coming and going and counting time in 2 hour increments so I could see him again... it was my routine, my reality. This, this being home, without Nova, without a trip to the hospital to make, or a phone call to make... it's just wrong. And I can't, or haven't yet, adjusted.

    I don't want to adjust. I want my Nova back.

    So I just stare at that picture and choke back the selfish tears for another lifetime of wishes and dreams that will never come true. And there's nothing I can do about it, there's nothing to be done.

    Saturday, April 8, 2006


    There will be a simple graveside service at 11:00 am on Tuesday morning at Lakeland Memorial in Monroe. McEwen Funeral services are handling the arrangements. We don't know yet who will officiate, we've been trying to contact Arlen Smith from New Covenant in Matthews. Unfortunately, we haven't had any luck there, and will have to start looking for an alternate before time runs out and we find ourselves preacherless. I don't belong to a church, so I don't even know where to begin. Arlen spoke at Alexis' funeral, and I'd hoped to have him do Nova's as well. I suppose we'll see what heppens, but I guess tomorrow, I'll have to start doing something.

    The flowers are taken care of. We picked a simple all white spread for the casket. Choosing them was actually one of the hardest things I've had to do so far. There are catalogues of pictures of different arrangements on caskets to show how they look. It's difficult to say out loud, "It's only a 36" casket so we don't need a full sized arrangement..."

    We haven't picked a headstone yet, but that can wait a while I suppose. To be honest, I just don't think I'm ready to choose headstones, fonts, styles, shapes, colors. It all seems a little clinical/technical... like I'm building a webpage and picking templates and background colors. No, just not ready to do it today. Maybe Monday.

    His obituary is basic, with a picture. This one.
    because it's my favorite. I cropped it so he wasn't all naked and hanging out, but he's definitely being "Nova" looking right at you, all strong and sparkly. The Nova we had home, the one we loved so dearly.

    It's supposed to be 72 degrees and sunny Tuesday. We couldn't ask for more perfect weather. I'm sure the ceremony will be beautiful, but the truth is, I dread it. I'd almost rather skip it all together, but that isn't fair to him. So it's open to whomever would like to attend. I know my landlord will be there, we saw him today to pay the rent. And of course my family will all be there. Some of my friends, and maybe Scott's friends too, even though they're really more like business associates. Mika is coming. I don't know how she'll do it. Her daughter was the same age when she passed away, it's bound to bring up memories. Scott's family won't make it I'm sure. They're all in New York, and pretty well tied up with Randy, who is arranging his own funeral. Scott's mother just cried and cried that she couldn't come. That poor woman. I can't imagine her life right now.

    I don't even know who else might come, I won't be surprised if there are a lot of people there. I still have to call CMC/CVRU and let them know where and when it is. Have I explained how much I hate using the phone? I think I have... and man have I done some serious time on the phone these last couple of days. Most of it with people I don't even know, or barely know. But I've had some really nice conversations too, so I won't complain. Wait, I guess I already did huh? OK, so I shouldn't complain.


    I don't know what to do with this. Or with myself. I have to keep reminding myself that I don't have to call the hospital and check on him.

    There is no instruction manual for losing a child, no right or wrong to grief or loss, but I almost feel guilty tonight. The tears dried up when the stream of visitors and phone calls started. Everything now is just quiet. Too quiet.

    I want you all to know how much the outpouring of support has meant to us. How much it means to know that Nova had the opportunity to touch so many people. Anyone who knows me knows that my philosophy has always been that we were all put on this earth to touch people, to leave them somehow better, or at least open to something better. Alexis never had that opportunity. Her 12 short days of life and her relative anonymity didn't allow for it.

    But Nova managed to touch so many people's lives, so many people followed his story and loved him, and so many people mourn for him right now. He was special, and not only to us. We are so grateful that you all cared and were effected by his life. That through you he was allowed to fulfill his purpose.

    He was so beautiful. I am indescribably lost without him.

    Friday, April 7, 2006

    Thank you

    My house has been full of people, my phone has rung off the hook and somewhere along the way, I hit this weird numb auto-pilot. I'm just oddly calm. I know that part of it is exhaustion, but I have to admit that a big part of it must be all of you praying for us and all the thoughts and wishes and support.

    So many of you have donated. I'm in awe of the amount of love and caring that you've all shown. Everything that we needed has been provided for, and more - thanks to you and friends and family.

    Thank you all so much. I can't even begin to put words to my appreciation.


    I don't want to do this. I don't want to have to do this. But I'm doing it anyway.

    The funeral home is allowing us to set up a payment plan, the cemetery however, will not. They want $775 up front before they will bury Nova. I'm not big on begging, but for Nova, I'll beg.

    The good news is, they've decided to start another row in Baby Land, and bury him in the same area as Alexis. I don't know why that means so much to me - my rational mind knows it doesn't matter, but I really want him to be near his sister. Now he will be.

    For any of you who do decide to donate, I will do my absolute best to repay you, I already owe so many, and it will take me a while to pay, but I'll do it. The button is in my sidebar.
    The poem/quote posted below was sent to me by one of Scott's friends. I didn't know who it was at first, but letely I've been getting a lot of mail from people whose names I don't recognize. But Scotty recognized the name in my inbox as a friend from his NASCAR sims racing league. I had no idea any of them read my blog. It's good to know he has friends that have read along and support him. God knows it has made all the difference in the world for me to know that all of you were reading and supporting me. I hope you all know how much we appreciate it.

    I'm off now, to deal with the ugly business of funeral arrangements and burial plots, and trust me, it's definitely a business, and a lucrative one at that. It sickens me to think about all the people who will profit from my son's death - the same people who profitted from my daughter's. We're using the same funeral home and cemetery. It isn't that I resent them exactly - they do their jobs, and it's a job that needs to be done. I just wish I could do this without signing payment plans and thinking about just how much money they'll be making.

    Alexis is buried in an area called Baby Land. I wanted to have Nova there too, but Baby Land is full. There's no room for him there. It makes me sad that he can't be with his sister. It makes me feel like he's going to be alone.
    There is a sacredness in tears.
    They are not the mark of weakness,
    but of power.
    They speak more eloquently
    than 10,000 tongues.
    They are the messengers
    of overwhelming grief,
    of deep contrition,
    and of unspeakable love.

    - Washington Irving

    Thursday, April 6, 2006


    Nova died in my arms at 4:23 this afternoon.

    We love you little man. You fought hard, you made us proud. I don't know what to do without you.

    phone consent x 28561057

    The hospital called for telephone consent for a few things today. They want to run a new central line so they can remove the Broviac line. I guess they're still convinced that the yeast is growing in the Broviac line. I'm a little concerned about them taking it out - a regular central line only lasts a week-ish before they have to remove it. If they're wrong about the yeast in the Broviac, and the yeast doesn't clear up after they remove it, then they'll continue to really have a hard time getting a new central in when this new one goes south. But they have to take the Broviac out in case the yeast IS in it, because they'll never get rid of the yeast if it's colonizing in the line and they leave it in.

    They put him back on Dopamine this morning too. That's a development I'm particularly unhappy about. Apparently his urine output has been way down, indicating the possibility of those renal problems I've been so worried about (a side effect of IV antifungal drugs) but they're trying the Dopamine in hopes that the kidneys just need more blood flow. Dopamine increases blood pressure, and therefore should help if it's a blood supply problem rather than renal problems.

    I'm also hoping that it isn't linked to the blood in his urine that we were seeing after the angiojet. They say that blood in the urine is actually a fairly common after effect of the angiojet, so hopefully it's unrelated and doesn't serve as evidence of kidney damage...

    Christ, I know that all of this is a working science. I understand that each patient is different, that how they tolerate/react to each procedure is different. Everything has a certain element of the unknown involved with it, but the unknowns are what drive me the craziest. I want them to be able to say, with assuredness, that "this" is what we're going to do, and "this" is what's going to happen. And if something happens, I want them to be able to say "this" is what caused it, and "this" is what will fix it. That isn't going to happen, but it's what I want to happen!

    Wednesday, April 5, 2006


    The sunset tonight was gorgeous. I mean gorgeous. Too I've been in too much pain to really enjoy it. Migraines. One for me, one for Kory. He had the added blessing of puke. It was lovely. Nothing like a sweaty puking teenager lying listlessly across a waiting room couch - yeah, his hit on the way there, or I'd have put him to bed and left him home. Wish I could have put my head to bed and left it home. I'm in hell, just for the record.

    One of my 2 favorite Patient Reps worked her last night tonight. Don't know who will replace her. CMC better hope to God that Joan doesn't quit too. Joan and Michelle keep the joint running, poor Joan. Hope Michelle's replacement is damn good.

    Nova is doing well - they re-re-re-inserted the right chest tube. It's been in and out and in and out and now it's in again, but he needed it. It drained off 71 mls in the first few minutes. (Again, 30 mls in an ounce, so nearly 2 1/2 ounces of fluid.) His black eye looks much better. He's still a little swollen, but not too bad. He looks really good actually. They've added another antifungal to his Rx cocktail - that's 3 antifungals, simultaneously. They started the tube feeds back up at 10am this morning - he's up to 8 mls an hour - he was at 12 mls an hour before yesterday's procedure. It sort of scares me to believe that he's really doing ok now, part of me is still holding its breath waiting for the next complication to come up. God help me, please let there be no more complications.

    Have I told you guys about the kids from Uganda? Samaritan's Purse sponsored two children from Uganda to come to the US and have open heart surgery at CMC. Dr. Watts does a couple of kids a year through this sort of program. It doesn't surprise me, it's just the sort of thing I'd think Dr. Watts would do. Amazing isn't he?

    LOST kicked ass tonight didn't it? I watched through my fingers as I held my head and begged for mercy. I missed the first half but I just had to watch the rest, despite my head. I thought they were going to kill Hurley off, and I was going to be pissed off in a major way. I can't figure out exactly where they're going with this new plot line, but it's sure better than killing him off.

    OK, I just can't type any more. I'm going to go lay down.


    There are a lot of things going through my mind right now about the hospital, about our experiences with Nova, but with the people there too. I'm too tired to really explain it all right now, but I did want to say that, as difficult as this has been, it has, in some ways, sort of restored my faith in mankind.

    Trials such as ours, and those of others in the hospital, serve as a sort of glue that bonds people together - people you'd never expect to see sharing time - like the middle-aged woman and the 14 yr old boy in the corner, knitting together, or the homosexual man and the new mother discussing four-wheelers and horses, or the daughter whose father is dying, and the mother whose son isn't, sharing a cup of coffee...

    Pretty amazing sometimes.


    Tuesday, April 4, 2006


    Man, what a day it was. They called for him at ten, but didn't start till nearly noon, then they told us 4 - 5 hours, but only took like 1 1/2. We thought they started, we thought they'd be half done, then they had just started, then it was hours to go, then -poof- all of a sudden they were done.

    This morning, I was cussing people (under my breath of course, mostly... but that's a different post all together.) This afternoon I was skipping down the hospital hall.

    They told us we'd get to see him somewhere around 2:15 or so, but we didn't actually get to see him until nearly 4. And frankly, he looked like hell. He has a black eye, blood in his urine, and he's swollen again (which is what caused the black eye) but he's beautiful. Every mother falls in love with their baby at birth, I just keep falling in love with him. He's beautiful, even when he looks like he lost a fight with Mike Tyson. I am reminded (all too often) to appreciate every minute with him.

    Anyway, the urine in the blood is because of the high doses of blood thinners he was on last night, but nothing to be concerned about, the swelling is normal, the black eye is because of the swelling and the position he was in during the procedure, as the swelling began. Nothing to be overly concerned about at all.

    Here's his "Nova" hat, on his pretty little head, at 4pm. If you look really hard you can tell that his left eye is black, and swollen shut. Looks like he went 13 rounds with Dr. "Magic Fingers" Stern... but hey, he won ;)

    Good News!

    We went up to see him at 10:00 this morning, and at 10:10 the cath lab called to say they were ready for him. We assumed (silly silly us) that he'd be going back then, but they actually didn't start the procedure until 11:52. We'd been told that it would take 4-5 hours to complete the procedure.

    Dr. Stern came in a few minutes ago at at about 1:30 to say he was done, that there were no complications, he tolerated it well, and we'll get to see him about 2:15.

    I'm going to start calling Dr. Stern "Magic Fingers" or something. Nova just likes him. I told him that from this point forward he's got to do whatever Nova needs done, because he does so well for him. He said he'd be glad to. :)

    We haven't seen him yet - I can't wait!

    -------> I was so excited that I left out the detail! The blood clot was 4 cm in length, and blocked something like 90% of the SVC - Dr. Stern cleared 80% of the blockage, and thinks that the blood thinners will be able to eat away the rest of it. He also said that he was "very concerned" about the possibility of major complications, but that Nova "didn't turn a hair" and sailed right through it.

    I was honestly so relieved that I thought I was going to be sick. I was more worried with this procedure than anything else he's had done.

    Monday, April 3, 2006


    Nova had another CT scan today to assess how much the blood thinners had reduced the size of the blood clot in his superior vena cava (SVC). The blood thinners have made no difference at all, and the SVC is nearly completely blocked. This means that there is very little room in the vein for the blood to flow through from his head and arms back to his heart.

    Tomorrow he goes in for an Angiojet cath to try to clear the SVC. This is sort of like sand blasting away the blood clot and sucking out all the bits. If it works with no complications, it will be a wonderful thing. There is a chance that the clot will come loose and travel to his lung, which would kill him. And there is the chance that the clot is too hardened for the procedure to work, which leaves us with the only remaining option, which is to go back to surgery, and basically we'd start all over again where we were 6 weeks ago.

    And here we are again, the thing that saves him might kill him, and there is no choice but to do it. I don't know how much more he can take. I don't know how much more any of us can take.

    He goes in for the procedure at around 11 in the morning. I have no idea how long it will take. I'm praying that it is successful, uncomplicated, and that he tolerates it as well as last weeks balloon cath.

    They also saw, via the CT scan, that the veins in his groin, on both sides (femoral veins) are completely blocked. There is nothing they can do to correct that. They tell me that the blood finds other smaller veins to travel back to the heart and that those veins being blocked isn't as serious as it would seem. The major problem with these veins being blocked is that they can no longer be used for future heart catheterizations, and we know he'll need future caths. They'll have to resort to using the vein in his neck (external jugular - the one they used last week) to do tomorrow's cath, and future caths. Unfortunately, the more you use a vein, the more likely it is that the vein will deteriorate and become unusable/blocked. Eventually, they may have to use the vein from his liver.

    I love the nurses in CVRU, the doctors are wonderful. I love Dr. Watts, and Dr Stern is amazing too. I have been blessed with every one of them, and am grateful to Joan and Michelle (Patient Reps) for how helpful and sweet they have been to us.

    I'm sick of them all, I'm sick of this ride. I'm sick of bad news and hearing the words "devastating" and "catastrophic" and "death" used in reference to my son.

    This is tonight.
    I saw a hat on another heart baby's site that said "I'm a Miracle" that came with a matching onesie. It was adorable, and I fell in love but I can't afford $26 for the set, so I hit eBay and had one made for him. $4. There's no matching onesie, but he can't wear any clothes right now anyway. Her name is Colleen, and she's wonderful. As soon as she read his story, she rushed the order, and included an extra hat for free that has his name embroidered on it. If you need personalized baby hats, she's the one you should talk to. We didn't get pictures of the "Nova" hat, but it's seriously cute - the hat has multicolored stars all over it, and his name on the folded part. Unfortunately, getting this one on him and taking the picture pretty well ticked him off, so we'll get pics of him in the other tomorrow morning.

    4/3/06 #1

    So this morning I called the hospital and asked again about the yeast culture and the confusion about the positive/negative results that the nurse told me about yesterday. Apparently, the nurse during the day was wrong. There have been no negative culture results. He still has the yeast infection.

    I don't know why she told us that yesterday, it isn't as though we were even asking about it, she just volunteered the information out of the blue. I'm pissed off and disappointed, and I feel like an ass because I told Dr. Watts that it had come back negative, and it wasn't.

    Now we're back to worrying about having to remove the Broviac, which can't be done until they can get another line in. He hasn't done well with keeping an IV, and getting rid of the Broviac is a major deal because of that. And of course, there's still the concern about where the yeast may be colonizing, or where it may start colonizing, such as in his heart...

    Anyway, Dianne said he's tolerating the tube feeds well, and they hope to have him off of the IV nutrition (it's called TPN) by 8 o'clock tonight. They're taking him back to do another CT scan to check the blood clots in his Vena Cava, and as always, running more cultures.

    I'm so upset about the yeast infection, and the nurse telling me something that wasn't so. I can't even put into words how angry and confused and frustrated I am about it.

    Sunday, April 2, 2006


    In the Shade

    I have never needed anything
    without knowing I needed it,
    not until today. Not until
    the mourning dove sang
    in the shade of the cherry tree
    and the pink tulle clusters danced
    in time. I fell in love
    with the way her cheeks shimmered
    grey to pink with each note.

    She wore spring like rouge and
    painted grief beautiful -
    a miracle I found
    in a hospital parking lot.

    6 weeks


    So the day nurse (whose name escapes me right now) said the yeast culture was negative, that they'd run another culture to make sure it was a true negative, not some weird false result. OK, great - but I didn't ask WHEN they'd run the second culture. So at 8pm I asked the night nurse, Vivian - and she said that the she hadn't seen any negative result on the yeast, that the paperwork she had still said positive! But the paper she showed me was from 3/31, so I'm thinking she wasn't looking at the most recent results.

    That better be the deal, because I'm going to be highly pissed if there was never a negative result!

    Anyway, yeast aside, he looks great! Everything is still going in the right direction, and there's every indication that we're on a positive trend. Thank God, I mean, he's been through enough already!

    I had the audacity to ask today if they thought maybe he'd be home for his 5-month "birthday" and I was told that maybe I should shoot for celebrating that in PICU or in his own room, and maybe he'd hit 6 months at home...

    So, basically, another month. Sheesh!
    OK, I know, I know, but I'm feeling impatient today! Tomorrow is the 6 week mark!

    Happy four months old!!!

    Well, the good news (and perhaps his gift for his 4 month b-day) of the day is:

    The latest culture for the yeast came back negative!!
    They'll run another culture to make sure it wasn't a false negative, but it looks like we've beaten the yeast. That is extremely good news. I am so relieved! That means that a lot of complications (such as having to remove the Broviac central) aren't an issue anymore!

    He's done pretty well for the 2 hour stints that he's been off the narcotics while the AmBisome runs. They'll leave him on that for several weeks even now that he's negative for yeast, as a prophylactic treatment (to prevent it from coming back - and I don't want to hear one joke about rubbers either!)

    So we go back up in 20 minutes, and I'm going to run outside and enjoy this gorgeous day, and it is gorgeous!

    4 months old today

    I have things I need to be doing. I have some updates I need to make to, and lately I've received several submissions for the anthology that I need to read through and reply to. I have some things I need to look into for the Maeghan and Heidi Foundation. I've been trying to find a local printer that would give them a cut on printing/copying costs, but I haven't really been able to find anything. (Any ideas are welcome on that one folks!) I'm also still hoping to get some baby socks to donate, but I plan to do something about that when I finally see some of that Social Security money from my ex's disability. We'll be getting a pretty good chunk the first month, so I can do something. Not as much as I'd like, but still.

    What I wish I was doing is writing. I won't claim writer's block, because it's mostly just a lack of time, energy, and self-discipline. I've had hundreds of 'sparks' in the last several weeks, but never at a time when I could (or felt like) writing them down and making them into something more.

    Seeing as it's 1 in the morning and Terra is wide awake and refusing to go back to sleep, maybe I'll spend some time writing tonight. Probably not, I'm just brain-tired and hoping she goes back to sleep soon, or I may just pass out right here at the computer.

    Nova is 4 months old today. I was filling out paperwork for his Medicaid, and it asked if anyone was temporarily living outside the home, and I thought to myself, yeah, he is. I'll bet that he still will be for his 5-month birthday too. I'm sick of the whole damn thing. I want my baby to be well. I want to bring him home. I want to be awake at 1 in the morning because he needs me, not because I'm missing him.

    Ha, it isn't 1am, it's actually 2am - I haven't changed the clocks yet. Just what I need - to lose another hour of sleep.

    I've been pissy and whiney all night, weepy about everything. Thanks to all the hell going on in CVRU tonight, I feel like I didn't really spend any time with him... I only get 2 visits a day as it is, and got kicked out during one. I'm glad tomorrow is Sunday, we spend most of the day there on Sundays. I wish he'd get well enough to get to his own room so I could spend more time with him. I think we're planning on having a party when he comes home, but I'm not all that sure it would be a good idea. I just don't know what his special needs are going to be when he comes home, or if I'll be able to adjust to doing all of it with a house full of people. We'll see, it isn't as if it's going to be any time soon anyway.

    Another month, another month... They don't even discuss his coming home anymore, there's just no way to predict it with the way things have gone, all the complications he's had, and that god damned yeast infection that won't go away.

    Christ. I swore I was going to post about something other than Nova. Even had myself half-convinced before I started typing that I was going to post a poem, or some facsimile thereof. Ha. Nope.

    Saturday, April 1, 2006


    The guy 2 beds down coded while we were visiting at 6. I didn't want to see any of it so I went to the other side of the crib so my back was to him. They, of course, asked us to leave, but let me tell ya, it ain't a pretty thing. Then they couldn't find any of the family members, the wife wasn't even answering her cell phone. They managed to keep him going, or rather get him going again, and he was "ok" at 8, but I could have done without that experience tonight. And the guy with the artificial pump waiting for the transplant passed away sometime today.

    I sure do like the good days better - and there are more good days than there are days like these last 2. I'm glad that most of our 40 day stay has been more positive. It creates a really difficult atmosphere in CVRU when they lose someone. I mean, I've talked plenty about what amazing people those nurses are, and how involved they get - so I'm sure it effects them on a certain personal level too.

    But despite all that went on around him, Nova is doing pretty well still. The biggest news of the day is that they lost the IV in his arm. Back down to just the Broviac central line, which they really want to get rid of as soon as they can. Doesn't look like that's going to happen though. He's slightly swollen today, nothing major. The day nurse said he was awake and looking around quite a bit, but he was asleep while we were with him. And they decided against giving him the AmBisone simultaneously with the Versed and Morphine, which means that while the AmBisone is running (it takes 2 hours to transfuse) he's off the narcs completely. While he was off the narcs, he wasn't showing any withdrawal symptoms, and was still calm and perfectly fine. I won't delude myself into thinking he won't have withdrawals, we already know he'll probably have to be on Methadone to kick the addiction, but it was good to know he didn't have any problems today.

    They did switch the blood thinner from Heparin to... Crap I forget the name of the new one... Anyway, the new one is safer for long term use. They want to get the blood clots taken care of as quickly as they can because they feel that each clot is at this point probably a tiny little yeast colony, and colonies are resistant to the antifungals. The yeast "hides" in the clots, or, that's how Dr. Timmons put it anyway. He's so sweet - and he's a fan of the Easy Button, which can only mean good things about him right?

    There's still considerable drainage from his chest tubes, and until that's taken care of, they won't consider extubating him - so we'll be trying to be patient about that. I'm really concerned about feeding problems when we finally get him off the vent. I suppose I should worry more about the fluid, the yeast, the fact that there's still some bloody residual in his lungs from the lung perforation, and the other issues for now, and not so much about extubation, but it's something that does concern me.

    Oh, they're upping his tube feeds 2 mls every 8 hours... Hopefully he'll tolerate that and do well with it. The more he can get nutritionally, the stronger he should get. Recovery time, according to one of the various doctors and nurses we spoke to, is in direct ratio with the level of nutrition the child receives. Makes sense on one hand, but then, he's been getting IV nutrition all along, so I'm not sure I completely understand. I'm just glad he's getting some food in his belly. He's barely eaten for nearly 6 weeks.

    Anyway, overall, a good report.