lacuna
A few days ago, I called the hospital and asked if they had pictures of the twins. I’m not really sure why. I’ve always been very clear that I didn’t want pictures, that I didn’t want the blankets they’d been wrapped in or the tiny clothes they’d worn. I can’t explain -- not even to myself -- what it was that I was looking for.
The nurse who answered the phone was very nice. She asked when the twins had been born and I told her that, while I didn’t know the exact date, it had been in October of last year. She asked if they had been admitted to the NICU and I said that one of them had been stillborn. As for the other twin, I told the nurse that I just wasn’t sure. I’d been under anesthesia, unconscious, for all four hours of her life, so I didn’t know whether they had tried to help her breathe and hooked her up to the NICU’s tubes and wires, or whether it had been obvious from the first that there was nothing to be done. “But the pictures,” I asked again, “Were there any pictures?” Of course, there were pictures, said the nurse. There were always pictures. And, she said, there would be a memory box, filled with everything that the twins had touched, with hand prints and footprints..
The nurse said that she’d let me know as soon as she found them , but it was a different nurse who called the next day. She asked me the same questions: When had the twins been born? Had they been admitted to the NICU? She asked me when I had been discharged from the hospital and how to spell my last name. “Maybe there aren’t any pictures,” I said and told her how, a month or so after the twins had been born, I had left a message asking the hospital to destroy everything. “Oh, no,” said the nurse, “We wouldn’t do that.”
The next morning, I got a call from someone who told me she was a social worker at the hospital. She said that she’d looked at all the records. She said that she’d looked at everything, that she’d looked very carefully, but that there were no pictures and no memory boxes. That there never had been any pictures or memory boxes. She said she was sorry. She said it was very unusual. She said that it wasn’t hospital policy. She said that it wasn’t the standard of care. And I told her that it was all right. Since I hadn’t been sure that I wanted them anyway, I was glad that it had happened to me and not to some other mother who might been foundered under the weight of this new, unlooked for, loss.
I didn’t think about it all that much until last night, when I read a post by Lori. To say it’s haunting really doesn’t do it justice. You’ll have to read it for yourself, but it describes a moment of grace that came to her just before the birth and death of her own twins. As I read the words on the screen, I felt the rise of a choking tide of jealousy. Why had I been cheated? Where was my grace, my sign of G-d’s presence? And then it occurred to me that perhaps I’d gotten my miracle after all. Maybe fate or chance or whoever takes care of these things had arranged for my twins to slip in and out of this world so quickly and so easily, that they’d left nothing tangible behind.
42 comments:
I disagree with the conclusion you draw from this, although I admire your attempt to look on the bright side.
The hospital blew it. Pure and simple. While it's true that accidents happen, I would expect them less often in the world of the NICU.
I wonder whether someone took you seriously when you called and asked that everything be destroyed?
You are a GOOD person, niobe, and you deserve what the rest of us deserve. No more, but also -- no less.
xxoo
I agree with Slouching Mom, completely.
And I am sorry, so sorry that there are no pictures of the twins.
They changed you, tangibly. This blog is tangible in the way that your words impact us, and, I hope, you.
The hospital blew it. Again. And all I got is that completely inadequate "I am sorry." But I am.
I have to say that I'm really surprised -- shocked almost -- at everyone's reaction. I was thinking that this was a good thing.
I, for one, prefer an ending such as this. Yes, the hospital screwed up. However, in my need to make everything black and white the fact that there was a box in existence that held these things of my dead babies is decidedly gray. Sometimes I think so much and so hard about the gray things that I wish that a decision would be made by someone else so that I didn't have to think about them anymore. It is agonizing. So, I personally can see why this mistake would be a blessing to some. Because it takes the burden of thinking about it away. The decision of whether or not to look in the box was made by someone else. There would be no torture of the gray.
I am disappointed the hospital messed up. You deserved to see the pictures even if it wasn't until now.
You seem to be taking it well though. I am glad you are able to.
If the hospital called you tomorrow and said they had located the photos and memory boxes, how would you feel? I know that they question is impossible to answer since we never know what we'll say or do in the "what if" events in our lives.
It's easy to be misinterpreted when it comes to expressing emotions that run so deep and hidden even to ourselves. I think I understand why its a good thing. Those items can prevent us from looking forward if we are always returning to the closet to brush off the dust, even if we don't open it.
You have an answer to your question. That is definitely good.
I think Cate and DD have it exactly right. If I believed in signs, it would seem like a very good sign, an indication that I was going in the right direction, that everything was going to be all right.
Like Slouching Mom, I admire your wish to see this as a good thing, as a blessing. And, for all I know, maybe you're right. But what troubles me is the undertone of "better it happened to me, rather than to someone who deserves better." What happened can't be fixed, and perhaps it's unhelpful to get angry or upset about it. But it's still not fair to yourself to feel that it's somehow more okay for bad things to happen to you than to other people.
I think that the hospital should have something for you, but I'm glad that it's okay that they don't. In thinking about this though, I'm forced to the conclusion that the twins did leave something tangible behind in this story, in the words that you put here on this page. It's filtered through you, but tangible nevertheless.
You have described your time after the birth of your twins as being very hazy. Is it possible a relative got the memory box and hasn't told you until she gets some indication you want it?
They sent the memory box home with us. I have only opened it once and I honestly don't know if it is good to have or not. There is no life left of our son, what is a blanket that only held him briefly? Still, there are times I want to open it because I think it says what color eyes he had. Now that he is the only mutually genetic child Brad and I will ever have, I wonder more what kind of child we might have made.
Take care Niobe. The world is full of wonder- good and bad. I don't think there is a reason your life has unfolded the way it has. We can only take what we have and try to make the best of it.
Well, for me, this certainly puts yesterday's post in a clearer light. And I find it really heartbreaking that when you were ready to ask about the memory box, it wasn't there. I'm glad you're ok with it though.
Although I totally agree that the hospital really f'd up big time (I have a feeling someone new on the job took your pervious phone call seriously), I guess I'm in the camp that it happened, and if you're looking for reasons that you need to take this act in as well. For some reason I'm also swimming with the notion that you don't know the date for sure, and a post from way way back about not being able to name your twins. All of this taken together is very ephemeral, but perhaps now in this particular place for you, ephemeral in a good way. Everything about them seems slippery, hard to grasp, etc. My husband sometimes said to Maddy "you weren't meant for this world," and I guess that's replaying in my head here too even more so. Not sure where this is leading. Rambly comment over.
I think it is a blessing. Your post made me cry though.
I love the word Lacuna. A good one to choose.
I'm sorry it wasn't there, but I'm glad you're okay.
Be strong.
Have a good weekend.
xxx
After what you wrote about the hospital before, I am glad that they were so kind and caring (that should be normal, I know). I also understand that you are relieved you don't have to make the decision of whether you want to see their pictures or not.
This post reminded me of these verses:
A strong and heavy wind was rending the mountains and crushing rocks before the LORD--but the LORD was not in the wind. After the wind there was an earthquake--but the LORD was not in the earthquake.
After the earthquake there was fire--but the LORD was not in the fire. After the fire there was a tiny whispering sound.
It takes a prophet to hear God in the "tiny whispering sound." But to find him in the lacuna, in absence - that is something else.
I once received a phone call from a patient wanting to know the same about pictures of a stillborn baby. At the time, she, and more so, the father, had been adamant that they did not want pictures, though they did spend time holding her.
I felt horrible that we did not have any, and usually we try to convince people to do this (and most do), because it seems that almost everyone wants them later. It is possible that they didn't take any, if you requested that at the time.
Holy Shit.
No, Niobe, it's not okay. We've talked about this enough that I know that if you called, then there was some part of you that did want to see, to look, or at least to know that there would be some oppurtunity in the future to look.
And these total utter fuckups have taken that choice away.
I know you are trying to make the best of this situation, and you are probably wondering why I'm reacting so vehemently, but I have spoken to enough Doctors and Nurses to know that this is not just a minor digression of hospital policy, but firing and lawsuit territory. I know cases where medical staff have been hauled up in front of their licensing boards over this.
Maybe you would never ever want to look at pictures or a memory box, but that isn't their decision, it's yours.
Actually the more I think about this, the more I wonder just what the hell is really going on behind the scenes? How many lawyers & risk management staff were consulted before they called you back.
At minimum, the twin that lived would've had a medical file of their own, since they are considered a patient if they independantly take a breath. So they did exist, and there IS tangible proof.
Something is wrong here with the hospital's story, very very wrong. You have a right to feel cheated and angry and jealous. You can feel that way without having to alter it, to smooth it, to make it acceptable in some way.
You have no idea how desperately I want to come down there and take a flamethrower to that hospital right now....I'm sorry, I just can't help it.
I think you do believe in signs, or magical thinking, and that you've received a sign - and that it was the right sign for you.
That said, the hospital did screw up.
I seem to agree with Aurelia again.
Why can't you ever catch a break? Jesus.
Oh Niobe... I don't know how to respond to this mainly because I hate to think of myself as the cause of a moment of pain for you. The funny thing is, I did think about that when I wrote that story. I did worry about the impact it might have on someone who felt grace passed them by, at a time they needed it most.
I hope that this latest information really does bring you peace, and isn't a source of new pain. You and I often seem to see the world through very different lenses, but I still find your view beautiful, fascinating and at times, poignant. I wish nothing but the very best for you.
I don't even know what to write, Niobe.
I'm angry that they didn't have the photos and the memory box for you--regardless of what you said you wanted at the time. That being said, I only looked at my twins' photos, when I was putting surviorgirl's things in the trunk. BUT...that was my choice. That's the part that upsets me. The choice was taken from you. Maybe it would have helped to see the photos, or maybe it would have made it worse? I don't know. You don't know.
As a former L and D nurse, I agree with Aurelia. That is complete and utter crap. It's inexcusable. Period.
That said, your post made me weep. You write such beautiful words with such stunning nobility. I am so, so sorry that the hospital did this to you and your family.
I'll send you some love, but truthfully I'd rather send some ass-kicking to the hospital.
I was very touched by this post (and many you write) and also by the heartfelt comments.
I know you often think you view the world differently than others, but I really understood your perspective. While I have not suffered such a loss as yours, I think I would be equally unsure if I would have wanted the memory box. There are things many people feel are important for remembering that I do not. But I do think it is a tragedy that the choice was taken from you by the hospital.
Maybe your moment of grace was not at the time of their birth and loss, but now at this time of reflection. Maybe g-d's presence is here now in your words. In sharing your profound experience with others. In helping us all be better. And that IS tangible.
Hugs niobe.
Oh Niobe, I guess it would be a sort of relief not to have to make that decision. For me, when they gave us the memory box, I just thought, "how can I have memories when she didn't live outside the womb?" It seemed a little fake. Now I have realized that to me, when I am doubting whether she ever really existed, I look, and there is the lock of hair and her footprint. Surely they wouldn't have just made those up, right?
maybe imagining them in your mind's eye is better. in your mind you can see them as sweet little babies and not look at empty blankets and surreal pictures. but i don't know, really.
i don't know what is right. or what the best thing to say is. i, like everyone else, just want you to find peace and happiness.
This is a very, very hard post to comment on - beautiful and heart-breaking and haunting and sad.
Meg pretty much wrote my feelings. For me, I need it to be MY choice to look or not. In fact, I hardly open M's box, (though I do have photos of him in our living room)but it is there,if I so choose. I don't want someone else to choose for me.
So, while I am glad you are able to see this as a good thing, I still think the choice should be yours, not the hospitals. I do think though, that they messed up. It sounds as though they have a certain system or protocol and for whatever reason it didn't get followed here. Not good.
Also, your twins did leave something tangible behind, they left you.
(freaking blogger just ate my comment...)
The crux was, in my mind it is a good thing. I have 2 boxes that sit in a cupboard (one for each set of twins), behind a door that is never opened, and contain photos of my babies in death, blankets, foot and handprints - things I don't need, nor do I particularly want.
that being said, yes the hospital did fuck up royally - but that cannot be changed now. This is just how it is, and how it is meant to be.
x
I am glad that perhaps you found a way that grace has touched your life... it's important that it speaks to you.
If this is the thought that brings you peace- then enjoy the quiet. ~Hugs~
I feel so conflicted. I admire your mettle and sheer ... practicality. I admire your grit in finding a way to move forward. I think it's good that you found a way to think about this that doesn't send you down the street hissing at everyone or straight to bar to go on a bender.
Yet for you to dismiss the hospital's lapse so quickly makes me realize how terrible your hospital experience truly was. Because in no way I view what they did on their end as ok. Even the hospital didn't think that, if they had a social worker call you back.
Although I can't really put myself in your place, I think I would be more inclined to think of this like you have chosen to.
I'm sorry you no longer have the choice of viewing their things, but I'm glad you feel some peace about the choice that was made for you, that you feel that it somehow fits with your worldview.
Unless the other comments have you ass-kicking mad now, that is. Because that's okay, too.
i think i might have felt a certain sense of peace about it too. sort of a meant-to-be, i wasn't sure if i should look anyway, now i don't have to decide feeling. but there's something wrong with the fact that you didn't get a choice.
seems like that decision was suppossed to be part of your process, but maybe the fact that you're okay with it means you've graduated that step of the process anyway? that would be a good thing. if the sense of peace comes from not having to take that step and being allowed to delay progress, that might feel comforting but not be so great for you in the long run.
i dunno, i tend to overanalyze these things. i guess ultimately feeling at peace with any part of this is a good place to be.
I would have great difficulty making sense of this new sort of loss in your life. You've been through so much already, it was reasonable to search for tangible souvenirs of their brief time with the world.
You may find grace, but please don't feel you have to put a positive spin on all of this.
I am just so sorry for all you've been through, Niobe.
Niobe,
Sorry for chiming in so late. It has taken a while to figure out how to say what I want to say.
I'm am sorry the hospital was so unsupportive. From what I've read, the memory box is just one piece of how your caregivers failed to care for you. However, if you want some sort of tangible "proof" your twins were here on this Earth, you might try asking to talk to your L&D nurse, and ask what she remembers. I ran into ours a couple of years after......she remembered much in vivid detail.
I, too, have felt jealous of others' more positive experiences in loosing their babes (how odd it is to admit to something like that!) most notably for me a chance to hold them while they were still alive, and say goodbye. I try to put it into some perspective, though, of what other people in my life DIDN'T get -- college girlfriends who have looked, unsuccessfully for love, and never found it (we are all close to 40, now) friends who have never been able to get pg, women who have kids, but must work so hard, they never get to really raise them, women in other countries whose children die so frequently due to lack of medical care. Because of my job, I am surrounded so much by "have nots", and so it is easier to be reminded that there is no shortage of people in this world dealt a crappy hand, it is just that their pain and struggles frequently are invisible to society. This does not make me less sad over my losses, but it does curb jealousy.
I just hope that the love all those here who replied to you is evidence of His presence. You sure deserve to feel it
sarai
Niobe I am so sorry this happened.
As someone who has spent a significant amount of time taking the pictures and made the molds for the memory boxes, I am completely horrified that someone did not do so for you.
Although maybe for you, this is the best way for it to be. Perhaps the day to day life without a box on a shelf is your best case scenario.
Niobe, i've been thinking about this post for two days, and i still don't know what to say. except...i am so sorry that there was nothing when you were ready to look and glad that you are able to see that absence as grace, as a good sign, and relieved that you don't have to decide and angry - on your uninvited behalf - that you don't get to decide, and awed by your capacity to hear the the voice of God in the lacuna, as B&P said so much better.
mostly, i just wanted to say that this has been on my mind for two days. that i care.
I also don't know what to say or really what to make of it. But reading this just made me very sad....that's all i can say about that. Thinking of you...
I'm really sorry Niobe. I also said no to photos in the hospital. Much later I had them check the records three times to be sure they didn't have them. After all it was standard procedure to have them. I felt so empty almost as if they had been taken away from me to know they hadn't or no longer existed.
Thanks for the link to another beautiful post.
I loved that movie with such a fierceness when I saw it in the theatre, but cannot ever bring myself to watch it again. Some experiences cannot be relived.
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