Saturday, June 27, 2009

A matter of words

Note: After writing this post (which I considered deleting, but decided to keep since my writing here has been so infrequent) I went to check out Glow in the Woods and discovered a lovely award had been handed to a person who had written about this much more eloquently, and from personal experience. So you should really go there, but read this if you must (and I'm sorry to apron-wring).

Sometimes the words that we use to describe the situations we find ourselves in are simply not adequate. For me, the word that has always nagged at me is "accident". This is, by common medical terms (although not technical terms), what killed my daughter, an accident. When we describe the cord accident, the act by which the blood flow is randomly cut off by an inconveniently positioned limb, kink in the cord, or sudden increase in pressure, we are using the same word that we would choose to describe a glass of milk dropped on a tile floor, or a car sideswiping a mailbox and scraping or denting its passenger door. For the latter two, we spend a few minutes with a mop, a broom, a hammer, a can of paint. For the first, we spend a lifetime of longing, remorse, and disbelief. It seems unlikely that the same word should describe all three events. But there is no replacement. We are simply asked to consider the context.

I was asked once by a reader to wonder about another word which to me carries much more gravity than my own example of the word accident. Her gripe was with the word "choice", as in, "The family made the choice to take their baby off of life support." Where, she wondered, is the choice in this? How can we use a word that, in the context of our daily life, usually refers to a decision made between two things that are both realistic options? If I make the choice to get a portobello mushroom sandwich, how do I then make the choice to terminate a pregnancy to save my own life?
So maybe we don't use that word, I thought. Maybe I would use the word "decision", rather than choice, as this word connotes more of an image of a family pondering deeply the impacts of both options, and coming to a more thoughtful conclusion.
But still, but still. This is neither choice, nor decision. When a person is bound to make any sort of decision that ends with the death of a well-loved, deeply wanted baby, this is something completely different and cannot be put on the same plane of existence with anything else. (I speak not from experience, obviously, but from the position of awe and horror in watching others in this position). I can only imagine that when families find themselves in such a place, the arrived at conclusion is because there simply IS no choice, there is no decision to make, there is only one rational, compassionate, road to take, and somehow they summon up the courage to take that road.

And I can tell you, what I simply cannot fathom is having that courage. Does it come with time? With suffering? Because I feel simply quite sure that I would have done anything, anything to keep my baby with me, even make a decision that with my 20/20 hindsight I would now not approve of. Not to exclude those non-babylost readers out there, but I truly do not believe that somebody who has not had a baby die can even conjure up an approximation of the absolute desperation that one feels when a baby dies, or is forecast to die. The soul of the mother simply leaps from the body, willing and able to do absolutely anything to make that baby live. I simply cannot imagine mixing rational thought into this biological drive to save the baby.

But some people have to stop, reel in their soul, and watch their baby's soul float into the space around them. Then, somehow, they let it go, they let it go. In the situations I am talking about, it is always for the right reasons. And yet they live with the guilt, the "decision", forever. Even though it was, by no means, a choice.

I cannot imagine. The "choice" was made for me, and I am grateful for that. Which means it really wasn't a choice, because who would choose that?

So what would you call it?


Rixa said...

I don't know of a good word...but the midwife I used for my son's pregnancy and birth lost her third child. It was a HBA2C, her baby was breech, and her midwives abandoned her the day before she went into labor. A day after he was born (nothing at all during the labor or birth to indicate anything wrong, he just never started breathing, and it turned out after an extensiv autopsy that he had suffered some major oxygen deprivation at a few points earlier during her pregnancy) they "decided" to take him off life support, as he essentially had no brain activity. On top of all of this, she was charged with manslaughter and had to go on trial (which is why they had the autopsy done; they were able to prove that his death was essentially inevitable). So I don't know--I think just with the words we use to describe what labor feels like, we can never come close to what the reality is.

Hope's Mama said...

I don't know what we call it, but what I do know is Carol, you sell yourself short, for this is also an incredible piece of writing, just as the post you mentioned is.
I don't think choice fits. And it is certainly a choice I hope I never, ever have to make. I can honestly tell you right now I don't know what I'd chose, as I don't believe you could possibly know until you were faced with the "decision". That is what infuriates me about this whole debate, that some of the most outspoken have never even walked in the shoes. Hopefully, they never will.
Accident is a funny one for me, too. Hope's death doesn't really fit with that term, so we don't really know what it was. It was a mistake, that's for sure. Mistakes made by me, by the midwives, by the universe at large. But like with accident, we can often fix mistakes. Spelling mistakes we can correct. If we don't, we can learn from them and make sure we don't make the same mistake again. And I guess that's what I'm hoping happens for me this time - that the same mistakes aren't made. That those responsible, including myself, learnt from those mistakes so we can do better this time. I don't know though, I just wish both our first born baby girls were here. They should be here. Accidents and mistakes do happen, but they should not happen when it involves our unborn children.

Anonymous said...

Minutes after my son Oliver was born, with my wife still being stitched up on the table next to him, I was told by the doctor that I might want to "choose" to have them stop trying to save him. It was clear from the get-go that Oliver was in severe distress (unlike his twin brother Charlie who was also at great risk being born at 24 weeks). I was in such a state of shock I didn't even respond and they kept working on him. Later, when my wife was conscious they spoke to us again, telling us about Oliver's catastrophic neurological damage (no activity at all and none of his systems were working), and we agreed to make that "decision" since it seemed the best option for HIM. In the end, we didn't really have to. His heart rate started plummeting twelve hours after he was born. He was dying and we agreed to let them unplug his poor battered body from everything so that we could hold him in our arms as he died. Not that the semantics matter regarding such a sad, horrible moment, but I do favor "decision" over "choice." We've also had such discussions with doctors about our son Charles who has two brain bleeds. They explained that some parents make the "choice" to end life support while their babies are still on ventilators because of the range of possible disabilities. One clueless doctor suggested doing it sooner rather than later "before we bonded" and warned us that we might miss our "window of opportunity" with the ventilator. Nine weeks later our son is up to 3 lbs. 5 oz. (from 1 lb. 4 oz.) and is happily off the ventilator. We couldn't be happier that the window has closed on THAT "choice." Yours is a fascinating post and I agree that no one can really anticipate that horrific decision until they're standing there facing it.

Heather said...

The day my daughter was born there were a list of "choices" to make. There was no time for googling or dwelling, we simply had to go with our gut. In that way, they weren't really choices at all, there were no other options.

It's all awful, any way you look at it.

Aimee said...

Thank you, Carol, for a wonderful post...and now maybe we can make up some words.... Of course all the words I would make up have (shall we say) "choice words" as part of them!

kris said...

My dear, you are one of the last people who should ever apron-wring. As always, your words have a beauty and a gravity beyond description.

"But some people have to stop, reel in their soul, and watch their baby's soul float into the space around them."

Thank you.

loribeth said...

Really interesting post. I too struggle with the whole concept of "choice" in difficult situations. I have never had to make a choice/decision like the one you describe -- but I have (according to some) "chosen" to live "childfree" (after infertility & loss). I have problems with that terminology... I understand that "childLESS" sounds "less" & slightly pathetic; however, "childFREE" implies that children are a burden I am happy to be free of, which is not the case (although there are some who do feel this way). As for the idea that I chose this life... I suppose it's true, in that I did not choose to continue infertility treatments, or to adopt. But as I've said to many people, "Some choice...." :p

Erika P said...

I'm delurking to say thank you so much for this beautifully written, thoughtful post. I found your blog through Glow in the Woods and have been reading for a couple weeks now. I also live in Western Mass, in Ashfield. I have one living child, had a miscarriage at 13 weeks in April 08, and am now pregnant again and faced with one of these "decisions." That is what we're calling it - and, as I keep telling people, it is by far the most difficult decision I've ever had to make.

My placenta isn't functioning well, the amniotic fluid is extremely low, and the baby is severely growth restricted. I'm at 27 weeks now, but the baby is more the size of a 20 or 21 weeker, about 350 grams. The doctors keep offering to deliver her and do what they can for her in the NICU, and babies that tiny can sometimes survive if born, but the outcomes are often not good. The ventilator tube might not even fit. A neonatologist I spoke to said that 500 grams is a cutoff of sorts, a break-even point where the good outcomes begin to outweigh the bad. We've decided that delivering her is just too risky and so we're just waiting to see if she can hang in there and get bigger. However, an ultrasound a week ago showed the placental function is getting worse, and we're not optimistic. The most likely outcome is the baby will only survive another couple of weeks in utero.

Now I don't know how to end this comment - I've typed several things and deleted them. I guess I will just this is where I am right now. Not knowing exactly how this situation will turn out, hoping I've picked the right one of two bad alternatives.

Erika P said...

And here's another one of these word conundrums...At the end of my last comment, I say I hope I made the "right" decision, but there are no right or wrong answers here. I used to think that mothers just knew what was right for their families, and for the most part I still do, but...this situation is just hard.

Charlotte's Mama said...

Erika P... my friend
I am so sorry for your predicament and I will hope that somehow things sort themselves out... could one EVER abandon hope?
Should you revisit here to read comments (and I hope you do!) I urge you to come to my other website so you can come and meet the other babylost mamas in this area... we convene in Northampton and I would love to meet you. Send me an e-mail and we'll connect.

Aleina said...

As the author of said post, I can say that you certainly did the topic justice as well. It has taken me so long to work out how I feel about our experience well enough to put it into words, and that post was really just the tip of the iceberg. You are right: When a person is bound to make any sort of decision that ends with the death of a well-loved, deeply wanted baby, this is something completely different and cannot be put on the same plane of existence with anything else.

And where does the strength come from? I have no idea. It just does, somehow. It is a horrible internal fight between your save-the-baby instincts and your logical mind, and you do just have to let go of all of it, because there is no other way.

On a completely unrelated note, I have been reading your blog for awhile now, but don't think I have ever commented. I just want to say thank you for writing. In the early days after my loss, you often had the words for what I was feeling even when I did not.

Erika P said...

Many thanks, Carol. I'll email you - and I see from the next post that you're at your family's camp, so enjoy your vacation and we'll connect when you have email access.

And no, I haven't given up hope - you are right that I can't.

And, Aleina, your post was beautiful and moving too and made me feel less alone - and I'll go back to your blog and tell you that.