Nova's Heart - 4 months of life, a lifetime of love

Sunday, July 30, 2006

Tshirt re-design

This is the graphic that will be on the Team Nova shirts for the Heart Walk. (Click to enlarge) I've considered adding pictures of Alexis and Nova, but I'm afraid that I'd be unhappy with the quality.

I'm pretty happy with the end product, though I admit I've piddled with it for entirely too long before coming up with this.

So I'm off to Cafepress to add this to a tshirt. Want one? http://www.cafepress.com/erinmonahan

posted by Erin @ 10:14 PM 2 comments

It Isn't Fair!

Tonight, despite the wonderful things that have been happening, I want to kick and scream and stomp my feet and shake my fist at the sky and scream about how unfair it is. It isn't fair, damn it. It's not fair. Thankfully, these moments are short lived, and by morning I'll remember how lucky I am despite it all. Sometimes I lose sight of that, but even when I'm in a tantrum throwing mood, I'm aware on some level of the number of blessings I have to count.

I have gotten several messages through the Yahoo! grief support group I belong to about medical bills that come in after the child's death. The sad reality is that hospitals are businesses, and only rightly so. Regardless of the outcome, there has been much time, effort, expertise and expense put forth in the attempt to save that child's life. They deserve payment, regardless. This isn't a problem I've had, since I got the paperwork snafu straightened out, but it is an issue that many bereaved parents face. All I'm going to say is that if I were to get a bill from CMC or from the Sanger Clinic, I'd bend over backwards to get it paid, I mean, they were all so wonderful to Nova and to us while he was in their care, and have continued to be since his death. I still feel lucky to have gotten to know all the patient reps, nurses and doctors (with the exception of that one whose name I won't mention again.) But when Alexis died (same doctors, same nurses, same hospital) I reacted to my loss very differently. I was angry and bitter, and after her death, I was getting bills... The first of which was nearly $90,000. I remember being outraged and thinking how horrible it was to get those bills. Luckily, again, it was all straightened out, but I did make one not-so-nice phone call that day, which of course ended with me dissolving into tears.

I regret the anger I felt after her death, but I've said it before, and I'll say it again - it saved my life, being angry was the only thing that kept me from blowing my head off. It was absolute rage, or total despair, and luckily, I was angry enough to survive. My point being that I can't blame anyone for being angry after losing a child, it may be their saving grace, and far be it from me to judge them for it.

I have avoided the anger, for the most part, so far, since Nova's death, and I haven't really experienced the need for it the way I did with Alexis. I'm more OK than I was then. That isn't to say I don't get angry. It's hard to read other people's miracle stories, or even the every day success stories sometimes, without being a little jealous, a little resentful. I can't help but wonder just what the factors are that ultimately decide who does and who doesn't take their baby home for the happily ever after. It isn't fair, but I've already said that, haven't I?

When Nova died, someone contacted the funeral home that handled his arrangements and promised to pay the bill in full. Working with that in mind, they did some things they wouldn't normally have done in a situation like ours. They put in a paid obituary (at a price of $80+) and applied for the death certificate for us, and did some small things like that - because they were promised full payment from an outside source, because frankly, when we contacted them, we were completely honest about our financial situation, and the fact that there just wasn't room in our budget for a funeral.

After his death a lot of people sent money... We used it to do a lot of things, like beautiful flowers and we used part to pay our rent because Scott had missed so much work from being at the hospital so much, it wasn't a fortune by any means, but it was a little something, especially considering the funeral arrangements were being paid for.

Well we found out shortly after the funeral that the outside source who had promised that had withdrawn their offer, leaving us with (most of) the unexpected bill, again, and all the "extra" money had been used already. Then we were told by another anonymous person that they'd take care of it, and we stopped worrying again. A couple of weeks ago we got a call from the funeral home, to let us know we still had a fairly good sized balance remaining on our account. Now that, yeah, that made me angry. How can someone, two someones, renege on a promise like that? I mean, what is the point of making a promise like that if you can't follow through. We've now been hit with that bill three times!

So I'm angry about that, but more discouraged and hurt really. I'll probably have to go back to work to pay for it, and then I'll have to work on buying the headstone... Neither of my children have headstones yet. Oddly, that doesn't bother me so much. I can't make myself visit the cemetery anyway. I don't believe that "my children" are there. Sure, their bodies are, but they aren't. Of course I'd love to be able to get headstones, but in my reality, I have 5 living kids that I have to take care of, and my priorities have to reflect that.

It isn't fair, but I also don't feel that gut-wrenching soul-eating anger about it. My babies know I love them and miss them, and I don't think they're very worried about headstones. They leave that for the living to be concerned with.

So what am I rambling about? I'm not really sure. I guess this is one of those decompression posts where I just needed to vent and gripe and be a little whiney, and in no particular direction, on all sorts of subjects. I've vacillated all day from frustrated to weepy to happy to silly to lazy to weepy again.

Blessings #49875 - blogging (so I can pour it all) out, and #49876 - having a family that loves me even when I'm being difficult to love.

posted by Erin @ 1:54 AM 0 comments

Saturday, July 29, 2006

I forgot to mention in my post yesterday that my amazing wonderful unbelievably awesome sister, who has been fundraising on my behalf through her job, brought me a rather large donation yesterday. This was collected one handful of change at a time. She runs a local convenience store and has added a bucket at the counter, where people have been donating their change from their purchases, generally less than a dollar at a time, for a grand total of $152! That means, as soon as I get it deposited into my bank account so that I can donate it, I will have met the $2000 goal. Looks like today is the day to raise that bar again huh?

posted by Erin @ 11:59 AM 0 comments

I have been having those days lately. The crazy mood swing days. One minute I'm great, and the next I'm bawling. The crazy thing is that many of the teary moments have been good, happy tears.

I cried when I found out the newspaper reporter wanted to do our story. All I could think was how many people would get to know Nova and his story through it. You all know my philosophy that we're here to touch people, you all know how important it has become to me to fulfill that purpose for Nova. You've all watched this happen, the SuperNova Phenomenon.

Well, it continues. And it continues to amaze me. Nova is still doing good things, touching people's lives, and making a difference in this world.

See, I emailed the AHA representative that I've been dealing with since I joined the Heart Walk. I wanted to let her know that they intended to have cameras and such there with us the day of the walk. I knew that she'd been doing some much appreciated (and completely unsolicited) networking for me, telling other people about Team Nova, using his story at Team Leader meetings, letting other CHD families know about Team Nova when she spoke with them. I wanted to thank her for that, and ask her to please keep doing it, because I want this story to be a way to increase awareness in our area, and one way I'd like to do that is for there to be a picture in the paper of a large group of CHD participants all together at the Heart Walk. Who better to help me accomplish that than the rep that talks with all new participants? Especially when she's already made it so clear that she's so willing to do that, all on her own!

Well, she of course, because she's an absolute doll, agreed to do exactly that, and shared another story with me... One of the women who was at the Heart Walk Kickoff that we attended asked her specifically to share our story with her team members. She's really been wonderful to us, and I hug her every time I see her. I just love her to bits.

Well, today when she received my letter and found out about the newspaper story, she forwarded it to the media director for the AHA, who proceeded to call me and ask if I'd be interested in "other types of media coverage." As in television. She wanted to know if I'd be interested in doing an interview with a television station!

Of course I'd be interested!

You see what I mean about the SuperNova Phenomenon? I didn't approach anyone for publicity - this is all just part of Nova's presence. He's been such an inspiration, made so much of a difference already, touched so many lives and made such an impact, and I claim absolutely no responsibility, it's all just unfolded in front of me like magic.

His story, his beautiful little spirit has facilitated so much awareness, and so many opportunities.

And so yes, I've smiled and laughed, and I've smiled and cried, and I've just all-out bawled. I am amazed by these developments, overjoyed to be a part of all of this, unbelievably blessed to have had him in my life, and heartbroken to know that I lost such an awesome, powerful little soul.

Losing him left a gaping hole, and that hole gets bigger and bigger as I realize what he's still doing even after he's gone and what a force he'd have been if he'd lived, but by the same token, he's filling that hole up with all that his story is accomplishing.

posted by Erin @ 12:15 AM 2 comments

Friday, July 28, 2006

Have you heard of the Red Paperclip Project? I am not sure of all the details, or even of the motivation, but the basic concept is that someone started with a red paperclip, and a brilliant idea to trade the paper clip for something better, and continue to trade up, until ultimately they ended up with a house. It got a lot of publicity, and from that idea came Money for Old Rope.

Money for Old Rope is a charity trading project, started by Paul, in Manchester England, intended to benefit GUCH. Paul started out with an old piece of rope (hence the name) and has traded up to craft scissors, to an Olympic shirt from the Sydney games to some unannounced autographed mystery item. He plans to continue to trade for an allotted amount of time, and then auction off the final item, donating all proceeds to GUCH.

From the same spirit of generosity comes Heart Kids in Australia. Tim wants to acheive the same thing as Paul, but the trading headquarters will be in Adelaide, South Australia.

I'm very interested in watching as both charity projects progress. I've added a link to each of them in my sidebar, please have a look and spread the word - both are worthy causes to benefit the CHD community worlwide.

posted by Erin @ 9:21 PM 0 comments

Fully

I know it is a trick of
low cloud cover and street lights,
some sort of urban smoke and mirrors,
but it's eerie to see the sky
glow white on a moonless midnight.

There are river rocks in my pocket
onyx, smooth as glass -
silent reminders against my thigh
unlike this heaviness
that hovers over me,
this inexplicable tightness
I can't shake.

I've learned to be comfortable
with my inner idiosyncrasies,
come to appreciate the peace
found in a patch of toadstools
and the sadness in spring.

There is no less beauty
in dying than in life
and I've chosen to love one
on my way to the other.

posted by Erin @ 12:22 AM 0 comments

Wednesday, July 26, 2006

I know I have knitters in my pool of regular readers, and this post is bound to interest you! See this yarn? Drooling yet? (I am, and I don't even knit!) Would you like to have this yarn?

Then you'll want to see Gretchen's amazing wonderful huge-spirited post. She told me she had a plan, she told me a little about it, and I loved the idea, I loved that she had the idea, and now that she's gone and done it, I'm a little bit at a loss as to how to even describe how I feel. Yeah, Erin, speechless. Who'da thunk it. Just click, read, tell Gretchen how awesome she is - and spread the word eh?

I just keep being amazed by how my little man has, and continues to, touch this world and the people in it. And that's the second time I've said that today, so it's been a huge day on the Nova front. An emotional one for me, but in such a heart warming way. I have been made very aware today of how right the things I'm doing are. I'm encouraged and reassured that Nova's purpose is being fulfilled.

posted by Erin @ 2:26 AM 0 comments

Tuesday, July 25, 2006

During our time with Nova, several people emailed me and told me that they'd contacted various news outlets, suggesting that our ongoing experiences would make for a good human interest story. The first contacted The Charlotte Observer via phone from a very far away Midwestern type state, having fallen in love with the story of Nova's angel bear that Ang sent to me. The editor contacted me at the time and said that she would pass along the idea to several reporters who might be interested, but I was never contacted by said reporters.
I was, at a later time, emailed again by another woman who contacted The Charlotte Observer, but at that point, I didn't hear a word that gave me any indication that there was any interest, and so, I assumed there was none and thought no more about it.

This morning I got an email. Guess who? Yep, The Charlotte Observer, and they are very interested in doing a story. As in, we meet with the reporter at a local restaurant on Thursday at noon. I don't know if I'm more excited about having the opportunity to tell Nova and Alexis' stories for the sake of raising awareness, or if I'm more terrified at the concept of having a news crew in my living room! You guys know how weird I am about having people in my house! I mean, it's in horrible shape, and I'm too broke to renovate and redecorate in the next 2 days... But she wants to do an in depth story not only about Nova and Alexis, but of our family and our journey through all of it. I've had a knot in my gut since I read the email. I don't know how to do this. I am a notably un-newsworthy person. She said the last time I was in the newspaper was when I was in a car wreck (the one that freaked me out so badly that I still don't drive...)in 1988.

So, we'll see how this goes. Y'all know me. I can't keep my mouth shut about anything and I'm sure you'll get regular updates. Assuming, of course, that I eventually start breathing again.

posted by Erin @ 2:36 PM 3 comments

Sunday, July 23, 2006

I co-hosted my niece's baby shower yesterday. She'd expecting a little boy, little Tristan. She concieved very close to the time I had Nova. When I found out she was expecting I volunteered to help my sister throw the shower. I was all excited at the time, but after losing Nova, I was a little less than enthusiastic. But I'd been the one to suggest it, and volunteered myself, and when it came time, I couldn't back out. I don't have it in me to back out on my responsibilities and leave someone else hanging. I admit though, I had to work myself up to walking out the door yesterday. I was afraid it would be too hard, that I'd fall apart and ruin the whole thing for my niece, while simultaneously looking like a damned fool. But talk myself into it I did, and I loaded the truck up with enough food to feed an army, and off I went.

I actually enjoyed myself, a lot. I don't get out of the house often, let alone for a day of all girl fun. We chitted and chatted and played silly games and laughed and poked fun of the mom-to-be and at each other and joked and handed out gifts and it was all around good.

There were moments. Tough ones I mean. Like when she pulled out a tiny little pair of socks - blue and white with paw prints. Nova had a pair just like them, I bought a friend of mine a pair similar to them JUST because they were like the ones Nova had. But the bad moments were outnumbered greatly by the good and I ended up being glad I'd done it. Sometimes I just have to push myself to do things because I work them up in my head to be potential disasters.

Of course all hell broke loose at home while I was gone, and the rest of the night was a mess, augmented with glasses of rum and Coke. But it all ended with my husband and I talking on the porch, both feeling a little tipsy and mellow, and watching a thunderstorm whose mood seemed to match our own. It was a great ending to the day.

posted by Erin @ 7:57 PM 1 comments

Saturday, July 22, 2006

How's this for cute? What a beautiful little guy eh? Yeah, Sammy is looking pretty good today, obviously more awake and alert, and my lord look at that smile! For those of you who aren't already reading and sending love (which I think most of my readers are!) go have a look at the little guy, read his story, and send your prayers and warm wishes his way as he recovers from his Glenn, please?

posted by Erin @ 7:22 PM 1 comments

Tuesday, July 18, 2006

The AHA Heart Walk is what I use to fill the void, it has become my baby - it is, as I've said before, the only thing I know to do right now to have some part of him in the practical world that lives on.

I am so emotionally attached to it that when donations stall out (I had two more book orders last night/this morning! YAY!) I take it personally. And I find myself wondering how I'm going to feel after September 16th, when the walk is done, and I don't have that anymore to pour myself into (or to pour into myself really.) I sincerely hope that I find soemthing else to do with myself between now and then, or that I am in a better, less needy place by then.

It's kind of weird thinking about it the way I do though, it's almost like I'm contemplating "Empty Nest Syndrome" or something... if that makes any sense, which I'm sure it doesn't... Well, it does in my head, but my brain is a little twisty lately.

So I heard from my sister last night. She has one of our posters and one of the fliers and has them hung near the register, with a jug, at the store she runs. In a week, 7 days, she's managed to raise $50 just from customers adding their change - she's aiming for $100! How awesome is that? Not just the $50, which I'm obviously thrilled about - but that she's willing to support me that way. She's already made a donation herself, and gotten two of the other local business owners to make donations too. She's been trying to get her boss to donate, but I guess he isn't feeling led to do so. My point is that she's the only member of my family (aside from my husband and kids of course) that has shown any sort of support. My other siblings haven't even acknowledged that I'm doing this.

So anyway, the total above doesn't reflect that $50 (or maybe $100) or the two book orders that just came in because I don't have the $50 - and I can't make online donations for less that $25 (so I have to apply the book order money 4 books at a time) but the actual total right now is $1905 (maybe even $1955!)

posted by Erin @ 12:37 AM 1 comments

Monday, July 17, 2006

I have a tendency only to blog when I'm feeling good, like yesterday. The post inspired by Michael's post was one that came along in the middle of an exceptionally good period of the day. Today though, seems like I've felt the exact opposite. I've spent most of the day trying to avoid everyone, most of the evening in the yard in tears - it's just too hard to explain to the other kids, to see how uncomfortable it makes them when I'm upset. And truthfully, when I'm wallowing, I prefer to do it alone. "Misery loves company" doesn't really apply to me. I'm selfish about it and hoard my misery. And sometimes I just have to remove myself simply because I'm tired of having to "be ok."

One of the hardest parts of losing a child, losing anyone really I guess, is the fact that life goes on around you, even at those times when you really just need everything to stop. Having other kids is hard too, they want their mother. They expect me to know the answer or to cook the meal or to do whatever it is that they need done. You'd think that now would be the time when I'd be cherishing them, but sometimes I find myself holding them at arms length. Sometimes I just want to be Nova's mom, and if I can't be Nova's mom, I don't want to be anybody's mom.

It's almost like I don't trust them... I saw a movie once about a man who found out he was dying, terminal cancer or something, I don't remember. What I remember is that he was angry, and that he used that anger to try to put his family at a distance, as if he could alienate them enough that his death wouldn't hurt them so much. That's almost how I feel, as if I expect them to up and die and if I hold them away, hold myself away, then maybe it won't rip my heart out. Yes, I know it's ridiculous, but I don't see it while I'm doing it, I only see it in retrospect, after they're asleep and I look back on the day.

It's like grieving makes me have dual personalities, like I am two distinct people. The things I said in my post yesterday are 100% my truth, and yet, feeling blessed by Nova's life doesn't make losing him any less painful - if anything, it hurts worse to have lost someone so utterly amazing. And yet, on days like today, when I'm at my lowest, I still feel completely blessed and amazingly lucky to have had him.

The two things seem to be at odds with one another, but somehow, they're not, they coincide perfectly.

posted by Erin @ 11:11 PM 3 comments

Sammy goes in for his second surgery on Wednesday. I've been reading about Sammy for several months now, and he and his family are dear to my heart. Little Sammy is absolutely adorable, and Erika (his Mom) is quite the writer - not too many folks can make a blog post about the smell of poop, and leave the reader smiling!

So Sammy and Erika and her husband will be in my thoughts even more than usual while they're at the hospital, sending warm wishes and positive thoughts.

posted by Erin @ 10:58 PM 1 comments

Saturday, July 15, 2006

Michael, Sophia's daddy, at Wisdom Heart, posted today about the experience of having a heart baby. I have found that, for the most part, parents of children born with a congenital heart defect feel as he does, blessed, enriched, and maybe a bit wiser.

Despite the fact that my babies didn't survive their defects, I agree with him. Alexis' death changed me, not necessarily for the better. I did exactly what he warns a person not to do -I fell into the Why Me trap, and stayed there. Eventually I moved forward enough to allow myself to be changed by her death, but her life was so short that I don't think I allowed myself to learn from it. Rather, with her, I learned from my grief. With Nova though, he lived, he came home, and he was mine - and I am a better person for having allowed myself to learn certain lessons from the trials that he experienced.

I appreciate life more, I know to remind myself daily that life is a fleeting priveledge that might end at any time for any of us, and I have learned that tomorrow is not promised, so if there are things I want to accomplish in life, I'd better do it, now, and like I mean it.

I've also learned to let myself be touched by things that I'd closed myself off from after Alexis died. He used the words "spiritual nakedness" in his post, and it was a phrase I so completely related to - I have learned to be spiritually naked, or rather, I've learned to revel in my spiritual nudity. I want to embrace life and love and I've come to understand that the negative bits of life can be just as enriching as the positive. Sometimes moreso.

He also said, "Having to accept the mortality of my child has laid my awareness wide open." It's like he's reading my mind and doing a much better job of expressing my thoughts. I am so much more aware of everything now than I have ever been in my life. When Nova was alive, I hoped that he'd have surgery, and come home and be perfectly normal. I know that probably would not have been the case. Now, I am sorry that I didn't have the pleasure and honor of being by his side with him through the trials and tribulations that I know he'd have gone through in life if he'd survived.

I did not only lose my child, I lost a life-long teacher, and though I wish he were still here with me, I am thankful to have had him for those 4 months, and to have learned the lessons he did teach me. They are lessons that have and will continue to shape me as a person, and will forever change how I live, how I love, and what I feel.

People think I have suffered. I have. But I also believe that I have been far more blessed through Nova's short life than most people ever will be. I am almost sorry for people who have not had the opportunity to learn the lessons that I have, because I believe that my perception of the world is different than theirs, more open, more, as Michael would say, more "aware."

Early on, I felt guilty that I could feel good in any way right now - I thought I was crazy to be able to find reasons to feel blessed - I felt so selfish to think that there was something positive about my experiences, considering that they have ended as they have. So, thanks Michael, for sharing your thoughts and feelings, and for letting me know that I'm not alone with this thought process.

posted by Erin @ 9:56 PM 3 comments

Thursday, July 13, 2006

I'm making this post to publicly apologize for the size of my mouth and the impetuousness of my brain.

Two people in two days have let me know that things I've said on this blog and my other have been disappointing and hurtful.Apparently, I've posted some comments lately that I did not properly think through and bungled. I've made some dear people feel as though I'm disappointed in them, and that was not my intention, and not at all how I feel.

I have been on the receiving end of such huge doses of love and support, and have absolutely no right to feel disappointed, no reason to feel disappointed in anyone that I've met since Nova was born.

I admit that I get emotionally involved in things, things I can't control. And when those things don't go as I'd hoped, I am often hurt - that is my own shortcoming, a fault in my own personality, that I cannot control my feelings and reactions - and should not in any way reflect on anyone else.

I'm generally better at expressing what's on my mind and in my heart, but lately, I've been doing a poor job of it, and for anyone who has been hurt - those of you who have contacted me in particular (but I don't want to mention your names because that would be wrong, so you know who you are...) I am so sorry for any pain that my words have caused you. Please know that above anything else, I love you, am thankful for you, and feel blessed to have met you and grown to know you.

posted by Erin @ 2:12 PM 0 comments

Yet another example of what happens every day in our country, totally due to a lack of awareness and research funding. Every time I start to get discouraged about meeting the $3000 team goal for the Heart Walk, I hear something like this to light a fire under my ass.

Teen's death result of heart defect
By Gazette News Services

HELENA -- The weekend death of a teenager at Holter Lake was the result of an undetected congenital heart defect, Lewis and Clark County Coroner Mickey Nelson said Tuesday.

Patrick Thomas Kelly, 14, of Helena lost consciousness Saturday evening while riding in a boat after a day of wakeboarding, Sheriff Cheryl Liedle said.

Emergency personnel were called after he stopped breathing.

The Capital High School student died a short time later, despite efforts to revive him by occupants of the boat and emergency medical technicians.

Nelson said he ordered an autopsy to determine the cause of death because it didn't appear to witnesses that the boy had experienced any trauma while recreating at the lake.

And it isn't as rare as you'd like to think... read these?

posted by Erin @ 12:49 PM 0 comments

Tuesday, July 11, 2006

The Heart Walk Kick Off event/meeting for team leaders was this morning. Light breakfast at 7:30 am, followed by speakers and a set program from 8 to 9.

Terra will go to bed in the big bed, she will not stay in the big bed. She's up repeatedly during the night because she wakes up and isn't used to being in there and freaks out. I then have to calm her down, tuck her back in etc...

She was up the last time at 4:55am. I was supposed to be up and in the shower to get ready for the Kick Off by 5:30. Somewhere between 5am and 6:20 (when I actually got up) I had a dream that when I got there, Lauri asked me to get up on stage and talk, tell my story, motivate the crowd etc... I was nervous at first, but once I got started, boy I tore that audience up! I gave a very motivational speech, had them laughing, had them crying, had them eating out of the palm of my hand... Then I woke up.

Obviously I overslept, of course we were late (just a little, missed the first 15 minutes of the "light breakfast" and just had coffee.) But I told Scott about my dream, and he says, "You better hope she asks you to talk, because if she asks me, she can forget it!" (he's PAINFULLY shy) so I tell him how at first I was nervous, but ended up kicking butt. So anyway, I have this strange residual feeling that she's going to ask me to speak, but hey, that's ok, because I've already "rehearsed" right?! (haha)

We walk in and Lauri says, Erin! Scott! I'm SO glad you came! Oh my GOD you cut your HAIR!!!!! (insert small talk and light banter and filling out of name tags, a few introductions, etc...) And she says, "Erin, we've added your story to the line up and what I need you to do is..." (Oh dear GAWD she IS going to ask me to speak!) "...stand up and remain standing while the speaker gives a brief synopsis of your story." (Whew!. We were the last added, therefore the last to be read. The first stories were stories of survivors, each followed by applause. Then us, our story, a public offer of sympathy from the speaker, followed by a long awkward silence. It was pretty weird.

I nearly talked myself out of going to this meeting the other day, because it was so early, then I got the email invite. Then I sort of thought about skipping it again a few days later, then Lauri emailed me to make sure I was coming. Then this morning, when I'd had an hour of sleep and we were going to be late, I damn near backed out again...

I'm SO glad I went! I met someone at the meeting that stands to be the driving force behind some huge steps toward a true CHD support network here in Charlotte area. I'm unbelievably excited about it, and equally as glad to have had the opportunity to meet him and be asked to be a part of his plans.

I just hope that I'm not just getting carried away and letting myself get wrapped up in something that doesn't happen - I tend to do that. I just hope that I can remember that there are things I cannot control, remember not to be hurt by things that shouldn't, and continue to be grateful for the things that already have, and for all the love and support that have already been generously heaped on me.

posted by Erin @ 3:08 PM 3 comments

Monday, July 10, 2006

I just wanted to post and say thank you to all the ANS folks that have found their way here the last few days.
We both appreciate your thoughts and prayers and sympathies. I think it's awesome that you're all being so supportive of Scott with the messages on the board.

posted by Erin @ 8:56 PM 0 comments

Sunday, July 09, 2006

Nova's been gone for a little over 3 months now. Pretty soon we'll reach the point that he'll be gone longer than he was alive. He's already been gone longer than we had him at home. 3 months and I still cry every day. I get up and do the laundry and make dinner and I buy gifts and plan birthday parties (Terra turned 3 today) I bathe kids, and redesign blog templates and I sell books and I do fundraising, and I write poetry and I do 90% of it on auto-pilot, just waiting for this time of night, when they all go to bed.
Then, I look at Nova's pictures, the ones I took while he was home, before he had a scar down his chest, before his stomach was laid open, before he had a colostomy and a tube taped to his face... I didn't see his face without that tube for 45 days before he died, with the exception of the time he was temporarily and unsuccessfully extubated. While he was in the hospital I kept saying how I missed seeing him, and how I couldn't wait until he was off the vent permanently. I just kept telling myself that he needed the ventilator, that I'd see his beautiful face when he was better, stronger, healthier.
I was wrong. I only saw his face, his whole face, untaped and untubed and bare, as he died in my arms, and I will never see it again - so I study the pictures, pictures of the face that was stolen from me by CHD even before he was - and I cry, and I miss him, and sometimes I still sleep with his bear, and yes, even three months and 2 days later, I want him back.
I just want my baby. Doesn't seem like too much for a mother to ask for, but it's the one thing I'll never have.

posted by Erin @ 12:31 AM 3 comments

Saturday, July 08, 2006

There is nothing better than holding a baby to make a person feel like everything is right with the world. What I wouldn't do tonight to be holding Nova, believing that the world made sense.

posted by Erin @ 1:06 AM 0 comments

Thursday, July 06, 2006

Well, you can see that the donations have pretty well hit a plateau. I've only received one donation in the last couple of weeks. So I've devised a plan. I know that most of you only read here, and not at my main blog, and this makes more sense over there, as it's a poetry blog, but I'm going to post about it here too.

A little over a year ago, I was approached by a small press to have a collection of my poetry published in book form. The book was titled Poetic Acceptance and, though less than polished, it was a collection of poems that included many pieces that I wrote in response to losing Alexis. It was published in May of last year, about the time I got pregnant with Nova.

The publishing process turned into a nightmare, one that I still can't seem to be done with. The publisher was less than honest, and I've spent many months trying to get the whole situation settled. I had reconciled myself that I had been cheated, and put it behind me, only to be contacted by email by the publisher again yesterday. In the emails we sent back and forth, I found out that they're still publishing my book (illegally, because the contract has expired, therefore, so have the publisher's publication rights) and that there are copies still being made and sold, and I receive none of that profit...

Long story short, it's been a mess, and despite my efforts to make them make things right, it just continues.

My only choice (since I can't afford to sue them, and it wouldn't be monetarily worth it to do so) is too just forget it and go on. I don't have the energy or motivation to fight the fight right now. I have other more important things on my mind.

But, I wanted to put a positive ending to it, so: I have 16 copies of Poetic Acceptance here at the house. I'm going to sell them at a discounted rate ($8 each + $1 s&h) and donating the sales to the Heart Walk. I know that the AHA site won't accept donations less than $25, and I figure $9 is more manageable, and will -if I sell all copies I have on hand- net another $128 for the Walk.

So if you're interested in buying a copy and supporting me in the Walk, use the Make a Donation button in the right sidebar, send $9 via Paypal, and make sure your mailing addy is included, and I'll send a copy out to you ASAP.

In case you want to read more backstory on the publishing debacle:
[more about the publishing mess]
[the latest from the publisher]
[a little more here]

posted by Erin @ 11:50 AM 0 comments

Looks like Logan's doing pretty well, he's been extubated.

And Sophia is finally out of surgery and having a chance to rest and recuperate after some surgical complications. Sounds like things are going as well as can be expected right now, and I'm just keeping Michael and Pam in my thoughts tonight, that they can rest and find a bit of peace overnight.

For the record, the picture that Michael posted (here) ... man, Sophia is so adorable it hurts isn't she? I just want to hug hug huuuug her every time he posts a new picture. There's something about that girl, something more than I can put a finger on, and I don't give a rodent's rear if that sounds cheesy!

So, I'm keeping both families in my prayers, and sending a huge case of warm fuzzies in Sophia's direction.

posted by Erin @ 11:43 AM 1 comments

Monday, July 03, 2006

Well, I can't change his diapers or change his clothes. I can't give him a bath or wipe baby green beans from his chin. Instead I change his blog layout and clean up the appearance. The blue layout was too blah, the sunset layout, though beautiful, was too dark, this is nice, bright, clean and simple. You know, just perfect for a baby, right?

God I miss him, I miss being his Mom.

posted by Erin @ 5:44 PM 4 comments