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

Sunday, October 29, 2006

I've been avoiding the blog world. Back when I first discovered blogging, the interactivity of it all was mind-blowing, and utterly addictive. Now though, it frightens me. I know, that sounds weird. But you see, I was doing "so well" that everyone began to believe I was strong and... Well, whatever. Now I feel like I've created this persona that I have to live up to. I don't want to post stuff about how utterly devastated I am for fear of letting people down.

But, I promised myself I'd be honest throughout this process, and I know that in reality that's all anyone expects, so here it comes.

First of all, although I've lost 2 children, and I love Alexis as I would any of my children, the truth is, because Nova's life and death are so recent, they are, for the most part, what is effecting me most profoundly right now. That isn't to say that Alexis no longer effects me, she does and always will. Her death reshaped all that I was and am, and it was the post-Alexis Erin that lost her son. Alexis' effect on me is undeniable, but right now, it is Nova that I most often, and most strongly, grieve.

I feel almost guilty saying so, but it's the truth. I've had 5 years to adjust to the fact that Alexis is gone. I'm still having to remind myself daily that Nova will never come home. It is him that I talk to at night, his blankets I still bury my face in, his medicines that still sit in my kitchen, his clothes in boxes. It is him that I still fleetingly (for just a fraction of a second) worry that the children will wake when they get too loud in the hall outside my bedroom, and its his presence (or rather, the lack thereof) that still keeps me from sleeping in my own bed.

And it is him, and how all things relate to him, or my mourning of his death, that are constantly on my mind. So a few days ago when I received a letter from the cemetery where he and his sister are buried, it was to him that my mind turned immediately.

When I opened the envelope, I read about the candlelight memorial service they'll be having this year, as every other year. They light candles (luminaries, in small bags) in your loved one's memory. People gather there to witness the cemetery speckled with wavering lights, dancing memories.

I knew without giving it much thought that I wouldn't be attending. I've only been to the cemetery once since Alexis' burial, and that was for Nova's funeral. I just can't do it. It is oppressively sad there, and I can't do it. But as I looked over the paper again I noticed the date of the ceremony. December 2nd. Nova's birthday. Of course there's no significance in that. I know that, but I can't help but feel differently. I've been fighting back the tears since I got that letter, sadly grateful tears - grateful because somehow it just feels right that this should be held on his birthday. As if the universe is acknowledging the impact of his life, the importance. It's like rain at a funeral, oddly appropriate.

But more immediately than that is Halloween. Last night we went shopping, the other kids needed their costumes, so it was unavoidable. But I dreaded the going, the rifling through a million costumes. I feared it too - feared seeing the baby costumes that would remind me of the outfit I wasn't buying. You know, the little peapod, the red chili pepper costume, the cowboy in a size 12mo. The ones I'd have oohed and aahed over for Nova's first Halloween.

Everything is a reminder.

I remember the anger after Alexis died. I remember the way it held desperation at bay, and the way that, eventually, it devoured me. After Nova died, I promised myself that I wouldn't succumb to the anger. But now I wish for the anger. Mad is easier than numb.

posted by Erin @ 5:39 PM 3 comments

Friday, October 20, 2006

Nova's birthday - December 2nd

Sagittarius November 23 - December 20
"the Archer" in Latin, called Toxotes in Greek.

The curiosity of Sagittarius is truly insatiable and the mental energy is always alert. Sagittarius is a wonderful teacher and student. Sagittarius loves knowledge, all kinds of people and often sports. Sagittarius is very frank and open with friends and lovers. This is sometimes viewed by others as inconsiderate. Sometimes Sagittarius finds it better not to marry.

Sagittarius says, "I see"

Sagittarius Zodiac Stones
Early Sagittarian (born November 23 - December 5)

Soul stone: any of the tourmalines. Born under this fire sign, you are action-oriented and very lively. Tourmaline gives off an electrical charge when it is warmed and is the ideal stone to match and propel your innate energy.

Power Stone: Amber Wear it or carry it with you for short periods of time. Ancients believed that this fossilized resin trapped the sun.

Heart stone: Chrysocolla This copper-rich crystal contains very intense life vibrancy and is helpful to direct energy in a purposeful manner rather than burn it up (as Sagittarians are prone to do!)
~~~~~~~
Tammy, whom I only know from a Yahoo grief support group called Grieving Hearts, but seriously just LOVE, has had an angel pin designed to commemorate her daughter Zoe. It's a beautiful pin, and has specific symbols that represent things that Zoe loved while she was alive. She emailed us a picture of the pin, and it's so perfectly Zoe. She had it designed by Rosemary's Angels. I'm considering having Rosemary design pins for us as well. The price is ridiculously reasonable.

I'd want 2, of course, on for Alexis and one for Nova. But I found myself trying to decide what I'd want on Nova's pin. One of those things was his birth stone. I'd never even looked up the December birthstone. In my travels, I found the above info about the different stones. Just scanning the info, I saw "Heart Stone" and clicked to see what it was. I really like that stone, and it's 'meaning' and it's the one I'd choose if I were designing the pin. Actually, I've been drawing it out in my head, and on paper, playing with the different components... I'd definitely want Chrysocolla to be the stone used though... Definitely.
~~~~~~~~~
I can't decide what kinds of toys to buy for the CVRU to deliver on his birthday. Any and all suggestions are welcome. I know DVDs for the older kids... cd players with speakers maybe... some children's CDs... but what toys should I get?

posted by Erin @ 8:36 PM 2 comments

I've gotten several emails lately. Some asking if I was OK. If you ask, I'm sorry, but I'm going to be honest. So don't ask unless you're fully prepared for the weeping and whining that are sure to follow. Fair warning. If you ask me how I am, the answer will most likely be "exhausted and broken." (Thank you Terri for putting it so perfectly)

I've also gotten a couple from people who seem wounded that I haven't emailed them, or even replied to their emails to me. I'm sorry for not writing, for not responding, for hurting your feelings. It isn't my intention, and I wish you weren't hurt. But I have to worry about my own feelings right now. Call it selfish if you want, but I have to worry about me more than you. I'm responsible for maintaining some shred of my sanity, no one else can do that for me. And I'm pretty busy doing that. No energy left to worry about much else. I hope that doesn't sound as ungrateful and insensitive to you as it does to me right now. But at the very least, I owe you all the honesty in that statement. I am too exhausted and broken to try to hold any of you up right now. I just hope that you can be ok with that, understand it and not ask it of me. My good friends, those dearest to me, I know they (you) understand, and won't ask me for more than I can give.

I'm doing a lot of posting at unioncountymommies.com. The women there are so so sweet, they're all local and we have events to attend. I need to do that - get out, go places, interact in real life. Oddly, it is partially their lack of direct knowledge of the details that helps, the fact that they weren't there when it was all happening. I go and talk and laugh and joke - without the constant weight of telling the story. I can pretend, for a little while, that it didn't happen. Avoidance.

Don't get me wrong, I've told them, they've read the newspaper stories, and if I fell apart in the middle of the monthly meet -n- greet, with my platter of strawberry crepes in hand, they'd be there to pick me up. But there is a certain allure to the fact that this Erin is the one they know - not the Erin from before. It simplifies things. They aren't sitting around wondering when I'm going to "be my old self again" like so many who've known me long term seem to.

I know my tendency (which is all too evident here in the blog world) is to withdraw and insulate myself. Playdates are doubling as sanity savers, park days are aversion therapy. Strange though, how I'm finding it so helpful to do something I'd have never thought to do before. Not really so strange I guess. Since Nova died, I've been doing all sorts of things I'd have never considered before.

December 2nd would be his 1st birthday. I want to do something to commemorate that, but a party just feels wrong. What I think I'm going to do is go buy toys to donate to the CVRU - crib toys and children's DVDs, for the kids to use in CVRU. I considered doing a toy drive, but I don't think I have the energy. Maybe next year.

It's been nearly one year since I gave birth to him, and most of that year has been without him. There is something inherently wrong with the universe, and lately, I think there is something inherently wrong with me. I feel detached somehow. From reality, from people, from my emotions. I am just empty. Too empty even to cry most days. I worry that I don't cry enough. And then I have a night like last night, when the whole world caves in after everyone goes to bed, and I sob uncontrollably for hours. And then I remember why I don't cry. It's so futile. It's all so damn useless. There is nothing I can do to change things.

It's been 6 months, 2 weeks and 3 days since he died, and I still sit in the dark with his teddy bear wishing I had him back. 6 months, 2 weeks, and 3 days, and he's still gone.

posted by Erin @ 11:59 AM 0 comments

Saturday, October 14, 2006

This is Our Childrens' Memorial Walkway.
It's an area within Frazier Park.

Their dedication stone explains the purpose of this area, but it can't possibly give you any idea just how you feel while you're here. It's hard to remember that you're just a few blocks from Uptown, with its traffic and noise. It's so peaceful here. The walkway is brick, and every other brick or so is dedicated to a lost child, inscribed with a memorial written by the parents or other loved one.

Our block was dedicated yesterday at a ceremony held by CMC and the nurses of the NICU. Jerry and Skip Mudge, of Footprints Ministries, intended to surprise us with it during the ceremony. Unfortunately, we didn't know about the surprise (would have ruined the surprise eh?) and Scott had some last minute customers call and had to work, so we missed the ceremony. Instead, we met with Jerry and Skip today and they showed us our babies' brick. It's twice the size we thought it would be, and wasn't supposed to be installed until December. We had no idea that they intended to have it put in yesterday.

Jerry and Skip gave us the brick for free (it's normally $100) and the man who inscribed the wording is a local man (they're normally sent off to be done.) Jerry said he heard/read our story and offered to do the work for free. She also said it's the only brick the man has ever offered to do for free. That's what my babies do - they touch people, and the generosity they inspire never ceases to amaze me. Having lost two children, I can tell you about the void that's left behind, after their passing. But I can also tell you about the way my heart has been filled to overflowing by the kindnesses of people who've heard our story.

Jerry and Skip can tell you the stories behind each brick. Who it was that died and how, who it was that bought the stone in their name and why... I followed her around as she told the stories of the other children who are memorialized there. I managed not to bawl the entire time, but I was so so touched, so amazed at the stories. There's a brick there for Adam Petty (race car driver, son of driver Kyle Petty) one for Jon Benet Ramsey, one for the 2 sons Susan Smith drown - Michael and Alex Smith. There are benches dedicated to people, there are different areas for different groups - one for the SIDS Alliance of the Carolinas, one for the NICU of CMC, one for Mothers of Murdered Offspring. There are blocks for stillborn infants, for toddlers, children of all ages, including adults - we are all someone's child...

It's a beautiful place - full of life. Just a few feet from children squealing on swings and playground equipment. There was a cheerleading squad practicing, people playing and running and lounging. I will be going there often - that pocket of peacefulness in the middle of all the bustle of Charlotte.... My soul was fed there.

Our Children's Memorial Walkway:
http://www.ocmw.org
Footprints Ministries: http://www.angelfire.com/ny5/footprintsministry/index.html

posted by Erin @ 7:04 PM 0 comments

Wednesday, October 11, 2006

I was asked today, "If you could have stopped aging at any point in your life up to the present, how old would you want to remain?"

I'm really happy with who I am at this point in my life. Especially when it comes to my relationship with my husband. We're in a really good place together, and I wouldn't want to change that at all. I'm also probably in the best place as far as my sense of self is concerned. I'm probably more self-assured now than I've ever been. I like me, and I like 'us' too. For the first time I can ever remember, I'm pretty darn comfortable in my own skin. That's a pretty good feeling. It's also more than a lot of people can say.

But my first reaction was to go back to 2000. Back before my babies started dying.

So in the end, this question, for me, turned out to be more of a choice between having Alexis and Nova back and being in a less desirable place as a person (and frankly, a less desirable person) - or being the wiser person without my babies.

I'm glad it's just a philosophical question and not a real-life choice, because I don't know which I'd choose. Losing them has made me a better wife, a better mother, and frankly, a better person, but I don't know if that would matter to me if I had the chance to have them back.

posted by Erin @ 1:13 PM 0 comments

Monday, October 09, 2006

Tonight they sent me the corrected quilt block, well, a picture of it. I knew they'd have it done quickly. It's beautiful isn't it? I've been assured that he and Alexis' quilt blocks would be on the same quilt. I can't wait to see her block. When the quilt is finished, I'll get a picture of the finished quilt as well, and after that, I intend to have some sort of event that would lend itself to hosting it. It gets expensive to host the quilt, but it's well worth every penny. The quilts have made it possible to raise so much awareness.

Have a heart baby? You can request a quilt block for them by visiting http://www.chdquilt.org/. You can also view the finished quilts there. It's a wonderful thing they do. If you don't have a heart baby, you can always make a donation (it wouldn't hurt my feelings a bit if you were to make a donation in Alexis and/or Nova's name.) The quilt blocks are all made for free for heart families who request a block, but the supplies certainly aren't free. It's only possible thanks to generous donations.

posted by Erin @ 8:42 PM 1 comments

Sunday, October 08, 2006

The Charlotte Observer story is out. It's a two page spread in the Arts & Living section, starting with the front page. The whole front page. You can read it online here.

Thank you Elizabeth for taking so much time over the last few months to read my writings here, and for all the time we spent talking in order to bring this story to fruition. I hope that it is a huge step in raising awareness in our area, and in creating a support network for other families who have been (and continue to be) affected by congenital heart defects.

Whether their children are living or passed, I think it's important that Heart Families know that we are not alone!

(if you feel led to contact me, please feel free to do so at emonahan@carolina.rr.com)

posted by Erin @ 11:30 AM 1 comments

Friday, October 06, 2006

Kassi just got home from school - she's in chorus this year, I remember chorus. I figure she and I are pretty much alike, can't sing all that well, but love the class. I loved chorus, but I don't know how in the world I passed the class with a voice like mine.

Anyway, Kassi's school was really supportive of our family for the Heart Walk. They raised $653 in one day for a kid that had attended their school less than 2 weeks, because they're awesome like that. Seriously.

Now they're asking that I return the favor and support them in their fundraising efforts. They're making it easy (and probably much more successful) by adding a "shop online" feature, which I'm sharing with you. I totally understand if you can't order, because you all pretty well tapped yourselves out donating to the AHA. I know.

Just in case (what with Christmas coming and all) you can view the catalogue and order at the Reader's Digest Home and Gift Collection site. If it asks for the school or organization ID (it shouldn't but...) use the organization finder and choose the Sun Valley Middle School Chorus. Kassi will get the credit, and her school will get the money. I'm thinking hard about ordering the silver fortune cookie. It just looks neat. Plus, well, Christmas is coming, and I'd rather shop online than go out there and do it in real life (I have always despised the craziness of the crowds, and the ridiculous Holiday "sales!") so I'll probably do some Christmas shopping here too.

posted by Erin @ 4:34 PM 0 comments

Wednesday, October 04, 2006

In July I joined a local group called The Mommies Network - it's a national group with an online forum for moms, broken up by geographical areas (as in, I belong to Union county Mommies - all moms that live in the same county as I do.) I joined because I saw myself starting to kind of shut myself up - I never leave the house or do anything or go anywhere. I figured this would be a good way to get out of the house, meet people, and put a stop to my habit of becoming a withdrawn hermit when I'm depressed. We all talk constantly on the forum, but we also get together weekly for playdates for our kids or 'field trips' ot mom's night out stuff... We went to the park last week. There's a brunch in the morning that I'm going to. It's been a pretty good experience, as much as it isn't something I'd normally do. But lately, there's been so much talk about the holidays, and it just makes me want to scream.

I don't want to do Halloween, or Thanksgiving, or Christmas! I know it isn't fair to the other kids, and they're putting together Christmas lists and deciding what to be for Halloween. My husband is talking about how he's looking forward to the Turkey on Thanksgiving. I know I can't realistically just skip the holidays, but GOD how I want to just pretend they aren't coming!

Instead I'm Christmas shopping online, I've bought Terra's Halloween costume, we're planning where to trick or treat and doing all the crap that comes with this season. I wish I could just bury my head under my pillow for the next 3 or 4 months. Just tired of having to do what everyone else needs I guess.

posted by Erin @ 10:46 PM 1 comments