Thursday, February 10, 2011

Unlocking the Secrets

The last couple of days have left me a bundle of raw and exposed nerve endings, with a number of things hitting them and sending a jangling shot through my being.

It started with a request from my colleague, who may become my boss if all goes well. She needed a volunteer for our division to be the designated coordinator for March of Dimes. My workplace hosts one of the biggest walks in the nation, and there is a lot of tie-in and work to make it happen and so they require a volunteer from every division.

She asked me for multiple reasons; she knows that I support MoD, that we donate in Gabriel's name every year, that I've offered to do whatever I can to assist her during the transition and to help her look good to get the job permanently. I hesitated, but ultimately agreed, though I didn't much want to. In the course of this, I ended up sitting down briefly with our division communications coordinator, who is new. When she thanked me for helping, I told her that I supported MoD in my son's name, because he was born prematurely and died shortly after his birth.

She didn't know. Which is fine. I never said. A year ago, it would have fallen out of my mouth in the firs five minutes. Now . . . I don't hide the fact - I wear jewelry with his name on it, his name is at my desk, his footprints and birthdate posted in plain view when you walk into my office. But it's not how I choose to identify myself at work. What ripped open a wound was not telling her the story - I do it so often that I've got the relevant details worked out into a kind of 3 minute story. I know even how to phrase it and what inflections to use to best disarm people and give them a polite out from the conversation or the chance to ask more if they life. What set me on edge was when she immediately seized on the idea of promoting MoD participation by using my story.

I get it - it humanizes prematurity, it highlights that loss still happens in this day and age, it reminds people that those we see regularly are as affected by premature birth and sometimes death as Those People To Whom Such Things Happen Elsewhere.

But oh. OH! did it cut me open. I'm still not sure I fully understand it. Part of it was the way she approached it, which was just . . . tone-deaf. Part of it was a natural revulsion to the feeling of emotional blackmail I was beginning to have. Part of it was the instinctive protection of Gabriel, of his story, of anything related to him, when we have so little and it is so precious.

And, I'm realizing, part of it was the ambivalence I feel about the idea of prematurity. There is no question that what caused Gabriel's death was being born too soon, being born prematurely. He was born alive, he died because his lungs were too immature to work properly (all his systems were too immature to work properly). He was too tiny and undeveloped to have any hope of the sort of miracles that MoD has made possible with their extensive sponsoring of research and transmission of knowledge. I have no problem with saying that he was born prematurely - because he was.

But to identify myself as the mother of a premature baby is a step I hesitate to take. Semantics, I suppose, given what I wrote above. But I tend to think of prematurity and equate it with medical intervention, with the attempt to save the baby's life, with NICU and consultations, with neural scans and feeding tubes and anxiety, and the spectre of death or disability constantly looming at your side. I think of preemies and think of babies that had a chance - however slim - of life that Gabe didn't have. I think of NICU parents and a whole world of pain that I never dreamed of: wondering if there is any hope, what the future holds; balancing your own physical needs of sleep and food and showering and time away from all the pressure against the real fear that this may be all the time you have in the world with your child. My pain doesn't touch that, and to put myself out there in a way that represents my pain as the same is something I hesitate to do.

It's not that my pain is less valid for being different from that nightmare. There is a different pain in laboring in a bed while knowing with all certainty that you are killing your child by this failure of your body that you cannot control. There is a bitterness in knowing that all our parenting happened in about 20 minutes and wondering what was more important - keeping him warm or touching him. There is the pain of begging to be given our son while he was still alive, knowing we had only minutes, of knowing he was left alone on a tray for some of that precious minutes. That is a nightmare that NICU parents didn't have, and neither of our experiences are lesser or greater for being different in their paths to sorrow or joy.

But I know how it feels to have your sacred pain dismissed or diminished by a comparison. To have it belittled or demeaned by a well meaning person trying to sympathize who, really, can't. I do not, emphatically do not, wish to do that in saying that my child was born prematurely and died shortly after. I'm merely trying to say concisely and understandably what happened, and I don't think anyone has a problem. But to participate in a campaign in the way I've been asked. . . I fear that may cross a line.

It's true that I received information from March of Dimes when I was pregnant and bleeding that pushed me towards asking more questions (just not the right ones, apparently), and again for information on neural tube defects. It's true that cervical incompetence is the biggest cause for second trimester losses, and that MoD works to get information out about that as much as anything else they do. It's true that many people only know of NICU miracles and that medicine has advanced to such a point that very young babies are being saved and death isn't talked about, despite being the biggest killer of babies in America. It's true that I have been willing to freely share our story, for the right things - education, understanding, explanation. But this . . . feels fraudulent and manipulative to me.

So I don't know what I'll do, really. I do know that even getting to this point, where I've picked it apart this much has both helped and hurt - rather like cleaning out a gaping wound, I suppose and stitching it closed without anesthetic. Necessary, steps towards clean healing and avoiding infection, but painful in itself.

* * *

On those lines, because of the melancholic direction of my thoughts and the edge I feel I've been walking along the past two days, I'm hyper aware of nuances in a way I've not been for awhile. This is especially true of music. Chris at Glow recently wrote about how music helped him cope with his loss and how listening to music, even familiar stuff, through the filter of loss opened up a whole new level to him. Songs and lyrics and snippets took on whole new meanings, even lives of their own.

It's been going on all day for me. I've been on an enormous Oasis/Noel Gallagher acoustic kick in the past month or so. I was catching up on tedium today that's been shunted aside in the series of crises that popped up over the last week or so, and popped on Noel Gallagher's live acoustic set "The Dreams We Have As Children" and becoming acquainted with the stuff I didn't really know well. I've been playing Slide Away about 3-4x a day for about 6 weeks, so that was on the playlist. Then I became delighted with Fade Away and Talk Tonight and The Importance of Being Idle and then. . . then. Don't Go Away punched me in the gut and my eyes filled with tears and my heart seized up.

Now look, I personally think that Noel Gallagher is one of the best songwriters out there, at least lyrically. His stuff is fantastic, open-ended, poignant, has the ability to make people in wildly differing situations feel as if this song is speaking directly to them. Slide Away is such a song, Wonderwall is close as well. Don't Go Away is another.

A cold and frosty morning there's not a lot to say
About the things caught in my mind
And as the day was dawning my plane flew away
With all the things caught in my mind

And I wanna be there when you're coming down
And I wanna be there when you hit the ground

So don't go away
Say what you say
Say that you'll stay
Forever and a day
In the time of my life
Cos I need more time
Yes I need more time just to make things right

Damn my situation and the games I have to play
With all the things caught in my mind
Damn my education I can't find the words to say
With all the things caught in my mind

And I wanna be there when you're coming down
And I wanna be there when you hit the ground

So don't go away
Say what you say
Say that you'll stay
Forever and a day
In the time of my life
Cos I need more time
Yes I need more time just to make things right

Me and you what's going on?
All we seem to know is how to show
The feelings that are wrong

So don't go away
Say what you say
Say that you'll stay
Forever and a day
In the time of my life
Cos I need more time
Yes I need more time just to make things right

And don't go away
Say what you say
Say that you'll stay
Forever and a day
In the time of my life
Cos I need more time
Yes I need more time just to make things right

Yes I need more time just to make things right
Yes I need more time just to make things right
So don't go away


It's a wonderful broken pleading that can't be answered. Begging for something that is likely impossible - but there is a touch of hope in there too. . .

But those lines . . . "Say that you'll stay/Forever and a day/In the time of my life/Cos I need more time/Yes I need more time just to make things right" God, how have I wished for that, thought back to that moment I slipped into that hospital bed, remembered how I felt in the radiology room, when the resident told me he was fine and to hold on to that hope, when the attending told me there was none. All I needed was more time. A few more weeks to make him viable for medical intervention, a few more days to hope, a few more hours to prepare, a few more minutes with him alive. And no matter how I could have begged or pleaded with him or a deaf god not to go away to stay . . . it was never in our hands.

And so, I felt tears in my eyes, and pain in my heart and wondered how long it will be before that stops happening, and wonder if I want that or fear it. Eighteen months clearly is not enough, even if life seems normal in between those moments. This happens and I am forcibly reminded of what I am and how I've changed.

Damn my education. After eighteen months I still can't yet find the fucking words to say with all the things caught up in my mind.

3 comments:

Kittybits said...

It feels like the right words to me. Thank you. And (hug)

B said...

you write such amazing posts and all i can think of to say is that i'm here and that's i'm reading and what you say makes such perfect, heartbreaking sense.

tash just posted that four years still feels surprisingly short. eighteen months is nothing hon. nothing at all.

xxx

bkb said...

Many hugs. Your words are beautiful. Another song for you
http://www.youtube.com/watch?v=KSoF1fVvC7k