Loving and losing

The other day one of those supposedly inspirational quotes popped up on my Google+ page, among the many well and truly inspirational stories that populate it on the daily basis. The real inspirational stories are there because I am subscribed to a bunch of science-related feeds. Just recently, there was a story of recreating martian clouds in a giant lab structure on Earth, one about using a small 3D printer to print objects of any size through the use of an ingenious after-printing folding technology (no, really!), and one about a new discovery in astronomy that implies that life on planets outside the solar system is a lot more likely than we previously thought. Oh, and right above the inspirational quote, one about a possible vaccine against malaria. You know, malaria, disease that killed about 660 thousand people in 2010 alone, most of them children under 5 years old. Inspiring, no?-- to think that some day soon we may take that 660, 000 right down to 0.

And then there was the quote. Because for some reason Google likes to throw me those little nuggets of Hot on... Perhaps it is worried that I'd miss the really important stuff, what with my tragically unhip collection of subscriptions. Anyway, the quote. It was by a woman I haven't heard of before, though she is supposedly fairly well-known, Barbara De Angelis. "You never lose by loving. You always lose by holding back." it said, accompanied by a picture of an intertwined couple looking like clothes are about to start flying, if you know what I mean. 

It chafes me, the quote. At first I think it's the carefree couple in the illustration that is making the quote profoundly one-dimensional. And while it certainly does that, maybe that's not the whole story, since I can't seem to mentally walk away from this one-- the quote and the post keep bugging me. So I keep thinking about it. So maybe it's the absolutism of the quote itself, the lack of gray zones. Is it really true that you just can't lose by loving? What about an abused spouse-- shouldn't they be pulling back, walking away no matter if they still love their abuser? Or how about a teenage crush? Or, you know, those budding feelings at any age-- can you really never lose by plunging right in?

But eventually I realize that my internal issue is not about the intricacies of intimate relationships. It's about-- DUH-- me feeling like, again, the babylost, the childlost, the grieving, are cropped out of the conversation that is meant to be had. Our situations, our stories are not hallmarky enough for short quotes. Our stories illuminate what is, sometimes, really risked, by loving. Imagine for a second the same quote accompanying a picture of a small grave marker, a tiny coffin, or those impossibly small hand or footprints many of us have. Instead of wise, doesn't the quote suddenly sound cruel? Or, at least, impossibly sad?

Look, my personal blog's title, a quote from Sarah McLachlan, is the promise to not fear love. I think about that too, together with the quote, and wonder why the quote bothers me so much. And I come to think that perhaps it's because the quote makes it seem so plain and easy and obvious when it's none of those things. It's an impossible choice even when it feels like it's not a choice at all. We chose to try again, knowing what we can lose, again. Or we try again because not trying feels worse than trying, even knowing what we can lose, again. Or we chose to not try because we know what we could lose, again. Or the choice is made for us, and we are left to pick up the pieces. And no matter whether there's another round, no matter how the next round shakes out, a child, or children, we love is-- are-- still dead. We still love them, and they are still dead. And it's impossible for me to say that we haven't lost.

I've said for a long time, that I see grief as a mirror image of love. We grieve because we love them. We grieve because there's nothing else to do. So does it follow that if we didn't love them, or didn't love them as much, we wouldn't grieve (as much)? A friend has been known to occasionally pine for a lobotomy-- a way to forget the whole thing, pregnancy and on. I see the appeal, I do, though I can't, even this many years later, want it for myself. It used to drive me batty that nobody but us knew A, that he just doesn't matter to most people. It doesn't hurt as much anymore, this particular part, but I still can't wish for the memories to go-- it feels like wishing to diminish what little is left of him in this world. Of course, I realize that this is circular reasoning. It hurts me that he is invisible to most. With a hypothetical lobotomy I wouldn't remember, and so it wouldn't matter. I know, but I still can't wish for it.

All of this is theoretical, though. In this universe times moves in one direction, and sometime in our past, a child, or children, died. And now we are here, having loved them, still loving them. We are here and they are not, and we still love them, but have we not lost? Could we have avoided losing, or maybe lost less by holding back? Theoretical again, I know. Except our experiences inform our choices going forward. Which is why I called my blog what I did-- it was a note to self, writ large. I tried to be prudent, to hold back for a while, and I do think it helped keep me sane in the early months of the next pregnancy. But eventually I leaped. And I got lucky-- that son lived. He almost didn't, but he did.

I think this is why the quote bothers me so-- it makes a hard choice seem easy and it promises a reward that is nobody's to promise. Choosing to love is hard. And nobody, but nobody can say what will happen if you do. Choosing not to love, not loving, is often also hard. The choice takes your breath away. Sometimes, you make the choice despite yourself. Sometimes, you don't get one. Life is messy, and heartbreaking, and beautiful. And too complicated for simplistic prescriptions.

How do you feel about the quote? Do you agree with me or do you think I am overreacting? Or tell us about another quote that may seem innocuous to others, but bothered you because of your babylost experience. 

Blank stares, crickets and tumbleweeds

Recently a friend of mine posted news announcing her third pregnancy on that social media site I sometimes wonder why I joined.  It was a witty, read-between-the-lines kind of announcement that is commonplace in the land of non-baby loss folk.  It is not announcement any of us who have ever had to make the other, darker kind of pregnancy announcement (The baby died.  I’m not pregnant anymore) are apt to make anymore for a subsequent pregnancy.  With my daughter I did not clue anyone into the fact that I was pregnant until I was about 18 weeks along.  There was no formal announcement I just sort of stopped denying what people already had suspected for awhile.  I waited that long not because I was afraid that she was going to die like her brother, although in fact I was pretty sure that was exactly what was going to happen.  Rather it was because I did not have the emotional capacity to deal with the proclamations of “This time everything is going to be fine,” or “Try not to worry, it isn’t good for the baby,” by well-meaning people.  Turns out I got them anyway so it ended up not really accomplishing anything. 

Had George been born with a healthy heart and not three months early he would roughly be the same age as that of my newly thrice-pregnant friend’s eldest child.  As much as I would love to say that after three years of navigating the world of baby-loss I’ve risen above comparing my life to others I can’t.  It is just not possible for me to look at this friend’s life and not draw comparisons to my own.  She has a three year old doing those things that three-year olds tend to do.  I have a baby; dead for three years, not doing those things three year olds tend to do.  She has a second baby and a third on the way.  I am struggling to get pregnant and stay that way long enough to bring home a second living baby.   I think about her and imagine that my life could have looked very similar to hers if only fate had favored me in the same way it had favored her.  I think about her and envy the relative confidence she likely possess that her current pregnancy will have the same result as her previous two did.  I don’t have any confidence that any future pregnancy I may or may not have will result in a living baby. 

A year ago I was in a place where her announcement wouldn’t have been much more than a tiny blip on my radar.  Back then it was fairly easy to have a conversation about pregnancy without white knuckling through the entire thing.  I had also mostly stopped mentally reprimanding pregnant women for complaining about trivial things like swollen ankles and nighttime trips to the bathroom.  If a friend wanted to tell me about her birth plan I was mostly fine with it.  Sure!  Let's do it!  Let's talk about playlists and birthing balls and the evils of medical intervention.  I was a champion!  I was a fortress! I was a pillar of support!  

Two miscarriages later and I’m not feeling so enthusiastic about being a champion or a fortress or a pillar of support anymore.   All I’ve been able to muster in words of encouragement for my friend on her most recent pregnancy is a simple “congrats” to add to the multitude of other congratulatory responses she’s received.   I wish her the best, I really do, I just don’t want to talk about or otherwise be around it, that’s all.   So should she ever want to talk to me about birth plans and swollen ankles and nighttime trips to the bathroom, for now it’s going to be nothing but blank stares, crickets and tumbleweeds. 

How do you feel about your friends' pregnancies?  Has your opinion about thier pregnancies and/or your comfort level with them changed over time?  Do you feel guilty about the way they make you feel?  Have you been made to feel guilty about the way they make you feel?  

suit and tie

We did not commemorate Roxy’s death at the time with a ceremony. We did not have a funeral. We did not have a memorial. The theory at the time was that there was nothing for anyone to remember. Roxy had died before she made memories for anyone we might have invited. Most of the folks wouldn’t have even seen her. We surmised the ceremony would have been to support us, and we felt nothing like planning anything. We felt like lying on our backs. We felt like lying down until we didn’t exist. Until nothing at all existed. In short, at the time, it was easier not to.

I continue to address the devastating mental and emotional fallout from losing Roxy, and will until I die I’m sure. During a recent session addressing my ongoing severe anxiety issues, my psychiatrist said “it’s interesting that you felt such a deep connection to Roxy, considering you never got to really know her.” My blood quickened and heated at this. My eyes narrowed. I informed him that love had poured into and out of me the moment my first child, Mason, was born, right at his first cry. It was like a river, and that river didn't wait until we "got to know each other." That same river washed all over me when Roxy didn’t cry, I told him. I do know her. I know her terribly, terribly well.

As the calendars have changed numbers but continued to provide little actual space between our now and our then, the fact that we didn’t have some sort of real ceremony for Roxy bothers me. It is a regret. This song is about her death, and about our ascent to the maternity ward where Terra would deliver her. It is also about this regret that we never acknowledged to the world in a ceremonial way that we lost a daughter. We lost someone we knew and know deep in our marrow. My blood knows her. My skin. I was wearing a tshirt when I met her. I should have worn a suit and tie.

To the second floor we climb
Down a fluorescent hallway we glide
And I should have worn a suit and tie
Yeah I should have worn a suit and tie
Jenny said she’d walk us down
She fumbled with her silver bracelet
And I could not quite hear the sound
And I could not quite picture us making it
And there’s only so much time
Yeah there’s only so much left
Sometimes love is all you get
I asked a doctor where to stand
What should I do with my hands?
Well my baby never cries
And I should have worn a suit and tie
And there’s only so much time
Yeah there’s only so much left
Sometimes love is all you get
Sometimes love is all you get

Did you have a memorial service or some sort of ceremony for your child? If not, is that something you regret?

the scbu legacy

There is a boy on my lap, ten months old, and he's been gasping for breath all evening and the antibiotics that should be helping are making a red rash creep up his cheeks. It's getting harder to breathe now and I'm looking at him and I know what the doctor - kind, understanding - is going to say next.

"I think we need to admit him."

I'm all on my own with a million screaming voices in my head and I don't know how to help him - or me - and a tear splashes down on his face.

I'm always raining tears on my boys.

And then she says:

"He will be okay."

Beat. Follows Beat. Follows Beat.

I look up and I can feel the look that I give her.

"I've been told that before."

Flatly.

Don't tell me this will be okay. You know nothing. You people can't save my boys. I don't believe you.

***

There is a boy on his lap, ten days old, and he's arching and gasping and the room has stilled to a horror struck silence. He's been stable - doing better -  but suddenly the world has dissolved and a hiccuping gulp for air has become a desperate grapple for life and he's suddenly all ours, our responsibility and I can see that he's dying and it's going to be unbearable, painful, the cruelest and worst possible ending.

The antibiotics that should be saving him are doing nothing and no one knows why.

I know what she's going to say next. Kind, understanding.

"I think it's time to make a decision. If you wait, there won't be a decision to make."

Beep. Follows Beep. Follows Beep.

Damn monitors. Damn wires. Damn tubes that came between us and didn't save him. I don't know what to do to help him. Or me.

And then I do.

I look up and I can feel the look that I give her.

"Do it. One last chance. Only one. Give him till tomorrow to try to live."

Don't tell me this will be okay. I've been telling you for ten days that this won't be okay. And you can't save him. You don't know why, but you can't save him.

And I'm all alone, all night, with a boy who said no to his one last chance and who chose to give up on breathing and chose to reject the help that all the medics who wanted to save him offered and who left me, with a million voices screaming in my head, with the knowledge that I let him go because that was all the mothering I could give him. That was all the kindness I could offer. That was for the best, for him, for all of us.

***

We don't talk about the SCBU days. We don't talk about how the rhythmic beep of a monitor still sends us into silent meltdown. We don't talk about how each illness, erroneous blood test, each new health problem for our girls and rainbow boy forces us to silently confront the reality that our child died and when we needed them, the doctors couldn't save him. Didn't know. Can do so many brilliant things but couldn't save a little boy who lacked the fight to live. We don't talk about how one doctor said he would do well, that 24 hours later we crashed as another spelt out what 'do well' might mean for a boy who didn't want to suck. We don't talk about the peak as he opened his eyes and began to respond or the pit of despair that hauled us down as something inexplicable tore him away from us again. When our subsequent child is - repeatedly - admitted to hospital with breathing problems (and lives, I grant you) I go alone to care for him. Alone beats the companionship in terror of the SCBU parent bedside journey.

Just waiting for the balloon to go up. Just waiting for the hammer to fall.

Three years on, we do not let ourselves look at Freddie's 11 days and acknowledge how easily it could all happen again. And that means we do not look at his life at all.

***

They couldn't save him. They didn't know. And so how can we ever believe  in "it will be okay" ever again?

How has the loss of your child changed your feelings to illness since? How has it altered your parenting to subsequent or other children? Are you stronger or weaker in crisis since? Do you see death lurking around every corner or do you thumb your nose at it? And if you experienced a SCBU (NICU) journey, what is it's legacy in your life since?

Community Voices: An Open Call for Submissions

This fall, Glow in the Woods will start a series called Community Voices where we publish readers’ voices. We are asking for short submissions of no more than 250 words. There are three topics for Community Voices that we will be publishing over the next six months. For each theme, we will feature several selected voices together in one or two longer posts. 

Please read the FAQ here.