From the Gut
I read Deborah Davis’ Empty Cradle, Broken Heart: Surviving the Death of Your Baby about 4-6 weeks after Maddy died. I found it . . . redundant. I guess it was nice knowing I didn’t exist in a void, but confirming that I’d be feeling . . . exactly what I was feeling? Thanks? I guess?
But there was a gem in there that helped me significantly, and rolls around in my head to this day. I’m sorry I can’t quote it verbatim because I sent off my book to another grieving mom, but it went something like this: it’s actually a good thing that the major decisions we make during the time from hell are made while we’re sleep deprived and loopy and trying to juggle a million different balls and exhausted from crying because that way, they come from the gut. Davis suggests that it’s a good thing we don’t over-think the major decisions, and that instead, because of our circumstances, they come from somewhere subconscious rather than based on intellectual reasoning.
If I remember correctly, Davis used this statement in the context of removing life support from a child. But I really think this sentiment applies to a lot of decisions we made under duress, no matter the specific details around your baby’s death.
We did in fact make the decision to remove Maddy from life support. But it wasn’t even a decision, really, certainly not one that keeps me up at night. She didn’t have a nervous system to speak of, her heart was only beating thanks to machines, and she was fed through tubes. At six days, she was given a prognosis of 48 hours -- on the machines. And after seeing her almost crash (on the machines), twice, surrounded by strangers, we decided that if nothing else, we wanted her to go peacefully and in our arms. The decision here was really what kind of death we wanted for her, not whether to grant it for her or not. And I’m more than positive we made the right choice given our grim options.
But we made some other decisions that week: we moved her to Children’s Hospital from Delivery hospital, where we were told that they might be able to offer us more in terms of a diagnosis. This was by no means a life-saving measure, and our only hold-up on this particular decision was whether Children’s would honor our wishes and not take life-saving measures when we didn’t want them. We were a bit leery of the bright and shiny technology, but they were more than sympathetic and accommodating. We decided other things too: to have the nurses take pictures. Not to have Bella see her. (It was a bit complicated anyway, since Bella wasn’t feeling well to begin with. But we didn’t force the issue.) To name her our first choice of girl’s names even though at that point we finally named her on day two we knew she would die. To take footprints. To swaddle her for her death instead of dress her. To have her cremated. We didn’t have a service.
I think an outsider might look at these “decisions” and analyze, but wait – if you were that mentally exhausted, don’t you think the doctors and nurses and family were somehow guiding you? Leading you on? Making your decisions for you? Putting words in your mouth? Last year in group therapy I met a woman who told of a scene when her extremely ill two-year old (he lived to a week shy of his third birthday) crashed at the hospital, with her in the room. The lights flashed, the bag went on, CPR administered, and the line kept steadily flat. For a good few minutes. Her son had been sick since a month after his birth, his prognosis was grim. The doctor looked at her with his arms in the air and the knowing look, the look that says, “I think this is (finally) it.” And she said, without hesitating, “Keep trying. It’s not time.” And they worked, and a few minutes later, the line started bouncing, and her son zoomed back. And she bought a few more months with him.
For some reason this story comforted me greatly. She went with her gut, and she was right. And when I told her my story of my decision to remove Maddy from life support, she said I was her hero – that she couldn’t imagine being faced with that option and having to make a decision. But you did, I said, you did. You did in the face of doctors telling you it probably wasn’t the right one. We both did. From our hearts, our guts, and we don’t question them. We were both right.
I’m not entirely comfortable with all of my decisions, especially not having a memorial service. I just couldn’t. I couldn’t for the life of me think of anything to do that seemed remotely appropriate, anything to say. I was so angry and tired and heartbroken it just sounded like salt in a wound and following a script that I didn’t want to be a part of. It didn’t sound like “closure,” and it didn’t seem like nearly enough for what this poor little girl went through. And sometimes I regret that we did nothing – that I should have done something to remember, no matter how painful. Sometimes I wonder if it would’ve made any difference in how some of our family behaves if they had been forced to acknowledge in a public forum that she was here and living and now she was dead and gone.
But, know what? I really think I made that decision for a reason. It was my gut talking. It’s what flew out of my mouth when I was asked, and what I felt in my disoriented, barely vertical state. And I think my mind was trying to tell me something about my limitations, and what I could handle at the time, and ultimately what was right for me. For all of us.
I’ve seen women here and elsewhere struggling with the weight of their decisions already made: to terminate pregnancies in the face of mind-blowing devastation for their babies, or themselves. To name their dead children, or not. Whether they held their children long enough, or didn’t hold them at all. Whether they agreed to autopsies. Whether they had services. Whether they should’ve cremated/buried, or vice versa. And as I told the commenter, I think given the extraordinarily shitty circumstances and the mental capacity we have at those moments, these decisions are made from our guts for a reason. I don’t like to acknowledge the tiny voices from within because it sounds like I subscribe to teh Crazy, but let’s face it, there are voices that protect and warn: don’t touch that, it’s hot. Don’t go that way. Change lanes, now. And sometimes, as a parent, that’s the only way to make the tough decisions: to listen to the tiny voices emitted from the heart, not the mind.
I recognize fully that some of us were not given decisions to make; that medical personnel or family intruded and made them for us. And I find that deplorable, and I’m so sorry if that happened to you. That’s certainly a subject for another post. But for those of you were given choices, which really weren’t – choices where A was heartbreaking and B was downright shitty – it’s probably best that they were made in the heat of the moment, while you may have been in a hazy drug-induced coma, or on your umpteenth night of no sleep, or after crying your brains out for 12 hours straight. And now we simply have to breathe through them and recognize that our subconscious was probably trying to tell us something.
Easier said than done, I know. Easier said than done.
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Hmmm...maybe my problem (one of them, anyway) is that I'm congenitally incapable of making decisions with anything other than my hyperactive brain. I don't think I *have* gut feelings. Or if I do, they're generally wrong.
There's some kind of peace to be found by thinking this way... thanks tash.
Tash,
Your post is beautiful, but unfortunately strangely, strangely timely. We just got word that our neighbors have to remove their two-and-a-half year old daughter from life support today. The story is terrible. The couple is young and religious and was at church this past weekend with their child. While there, the young girl choked on an apple and was deprived of oxygen to the extent that the MRI shows no brain activity. At church, eating an apple. My husband and I can barely speak at the thought of two more grieving souls inhabiting the planet today. Two-and-a-half years with their daughter before she passes--it's more than brutal. My heart goes out to them. Sadly, it is a reminder that those of us whose physical connections to our babies ended early in their life--or even before they were born--have been spared some even more fantastically cruel feelings of pain, despair, and (i can't even find a word to finish the sentence and match the level of sadness i'm talking about).
Sometimes the voices creep in and question me, make me defend the choices we made while in the hospital (autopsy or not, hold or not, cremation or not, etc), but I typically push them away. What good is it to question it after the fact anyways, gut decision or no? It just serves to make you more miserable and you can't change the outcome no matter how much energy you put into it.
I had a teacher in college who explained to us the concept of: You do the best you can with what you have (based around a long drawn out discussion regarding children forgiving parents for abuse... but thats another discussion altogether). This has been a motto I hold close. Especially in this. Did we handle things "right?" Yes - we did because in the midst of this anguish and pain, we did the best we could with the choices we had.
We went with our gut, because our heads were full of snot... :)
I like this explanation. Although I have never articulated it in quite this way, I think that is a version of what I finally came to myself. I once wrote a blog post about the difference between action vs. acceptance. I realized that in the heat of the moment, relying on nothing other then my instincts, I felt the call to acceptance, not action. I continue to pray that came from somewhere other than myself... and that it was right.
I love that quote (even if it's not verbatim), and I so agree with this post. There were so many decisions that I made while in a hazy, drug-induced, half-asleep, coma-like state that when I look back, where the absolutely best decisions for us. If I had been more awake, actully realizing what was going on around me, I would have second-guessed myself, or felt pressured from outside sources to possibly make difference choices.
Only moments after our daughter was born, I was holding her and I told my husband her name. I don't ever remember even thinking about it or weighing all the dozens of possible names that we had discussed during the previous 8 months. I didn't think to even ask him if it was okay, or if he liked the name. It just came out, and it was "from the gut." And it's absolutely perfect.
Powerful post. Thank you for sharing this story with us.
Thank you for this post. It just rings so true. I have questioned so many of the decisions we made - his name, his unmarked grave, even when we chose for me to be induced. All the decisions/choices were from the gut. Were they the right decisons? Who knows. What can possibly be right or wrong when it comes to deciding these things about our children?? Thank you again for posting this.
i've wondered, since, about some of this too. for us, there was no 'decision' made to hold him as he died, it was simply the only option we considered, an imperative that we never discussed...just something we both needed and wanted badly and luckily were on the same page about. but the decision to cremate rather than bury, to have no marker, all these still sit with me...neither comfortable nor uncomfortable. i think most of us muddle our way through this not only exhausted and in heartache but also just in very unfamiliar territory - few of us have models from which we can make decisions in the way we might if it were a parent dying instead of a child. and let's face it, it's an odd position to be in...outside the norm no matter what you decide.
and in the end, i'm okay with the choices we made even if some of them were essentially decisions of omission. recently, a Children's Memorial Park was opened in our province, and you can plant a tree there, with a permanent plaque. someday, when our living child/ren are old enough, i think we may do that as a family, and scatter some of his remaining ashes there as well. it wasn't an option three years ago. and so i am just as glad we waited, though i never knew what we were waiting for.
I often wonder about the decisions we made - both the Big One and all the smaller ones. I wasn't hazy with drugs or sleep-deprived but I was in a state of shock. This post gave me a measure of comfort that hopefully my gut came through for me and told me to do the right thing.
There's a part of me that will always wonder, though.
That was definitely not one of my fav books. And like Niobe, I don't have any gut feelings. I feel as if all decisions made then was by my sub-conscious, or some ghost of me that was standing next to me through it all. During my pregnancy I read a chapter in a book about stillbirths and the decisions to be made after. That helped me make the decisions I guess.... and maybe I did have a gut feeling when I read that chapter...
Great post as always, Tash.
Not a fan of that book, although I know many have been comforted by it.
I made a lot of decisions. I really feel I came to them in a semi-comatose state. I was physically present in those moments after his death and birth, but emotionally I was somewhere else - denial, maybe. I wish I had been given more direction in those hours and days after C's death. I wish they had suggested things to me - like bathing him or inviting family to come by or taking skin-to-skin photos with him. I did not fully understand how important these things would be for me. In retrospect, there are a lot of decisions I didn't make because I didn't know they were options. It's those things I regret the most now.
I too wasn't particularly helped by that book. I don't remember if anyone asked us if we wanted to see or hold Natan, just that we did. I do know we didn't want the memory box at first, but since it was created I had to take it. I couldn't think of it being thrown out. And now I'm usually glad to have it although it has given me something to be anxious over if there were ever a fire.
But the other decisions, burial, funeral, the rabbi and cantor made those for us. I chose a poem to be read and we picked the marker. I've never been anything but ok with those decisions.
Before that, though, end of life decisions. I guess I did make it. The doctor came in and told us resuscitation was failing, should they continue. And I said, "stop, he's already gone." I knew it, and there's never been any reason to doubt whether that non-decision was correct because I knew, I guess from the gut, the moment he died. I've never for even the tiniest instant had to doubt that.
I have regrets but I also believe in trusting that inner voice. It helps to reflect and see that our gut instincts were the right ones.
I have that book, but haven't read it. My sister got it for me at some book sale about a year ago, but at that point I was already hooked up with my very own Dr.Blogs, so I felt like it can sit around and wait for me. It's still waiting.
Gut decisions. Interesting. I thought some of the decisions I made were more because I had read a couple of bereaved mothers before, and some of the things they said stuck with me. I think maybe they informed my gut, since the decisions feel so organic to me now. The only one I still question is not bringing a better camera or not having photographers come in. And yet I have to say that I don't think I would've been comfortable with a stranger in the room... so I am still leaning towards "right choice." Except that when I go to look at the pictures these days, there are so very few of them...
The thing that is amazing to me even now is that at the time I predicted some decisions we were making to be right for the moment, but that they will require explanations, and maybe even apologies later on. The two sanding out is not having Monkey see A and not taking her to the funeral. I thought, thought, that the explanations and apologies would have to happen when she is much more grown, but we have already had to explain, and I know will have to keep explaining, and one day we will have to apologize.
I have so many regrets that I don't even know where to start. Frankly, an autopsy was not a gut decision for me. I had to be convinced. And I sort of felt bullied. But I guess I am glad it was done, although I cringe when I really think about what they do in one. It sort of haunts me, actually. Even though she was dead, I feel like I destroyed my beautiful little girl. Now I kind of wish I went with my gut.
never read the book but am a firm believer in the gut instinct. but still there are always questions/issues to ponder and fret about later, to re-consider with regret. but I think the above poster is right, you do the best with what you have at the time. there are always things that could have been done differently that we now second-guess, but that doesn't make it right at the time. interesting post.
That book was helpful for me, if for only one reason: the sentence in ALL CAPS that said "you did the best you could at the time." Despite the fact that all my supporters were saying the exact same thing, something about seeing it in print, in all capitals, somehow made it something I finally could begin to accept (after weeks or more of blaming and berating myself).
In my worse moments (like these days), I still struggle with accepting some of the decisions we made. Or, perhaps, I am still struggling with accepting why we had to make any of tbose choices in the first place.
Thank you for this. I have gone over in my mind a million times that day when I sent the nurse who held my dying daughter away because I saw her dark red head poking out of the blanket and it scared the shit out of me. My mom called out, "I'll hold her" and she rocked her and sang her out of this world, but I will always feel like I made the wrong decision and failed my baby. God, this is hell, even after 5 years.
I've been sitting here trying to think of what to say, and nothing seems right.
I worry that because society has so little experience with pg loss and perinatal loss that our instincts may not be the best thing to follow. Yes, maybe we have no choice, and we certainly do do the best we can, but I also know of many many women who refused to see their babies or take photos and they regretted it later.Sometimes years and years later, and many of them ended up having serious breakdowns.You can recreate a funeral service or pick a name later, but you can't redo some things.
So yes, sometimes we need to take the advice we get from social workers and nurses and other people, even if it sounds wrong, because sometimes people who have been there before know better, and they are good people to rely on and get help from and do whatever we're told to.
I loved this post tash.
now that the initial shock of my neighbor's story has started to settle in, i wanted to respond to this post as it relates to me, b/c i've been thinking about it all day. besides the ultimate decision to terminate our pregnancy which i made at least a hundred times, then changed my mind, and made again, there were so many other decisions leading up to that that i actually cherish. decisions that led to moments of tenderness in my life that i will never forget. some of them are as follows: the decision to post on a website for families afflicted with our babies disease--which led to almost a hundred heartfelt responses i so appreciated reading; the decision to call my great uncle, a pediatrician, and ask his opinion, as a doctor, a father, and a grandfather--which led to tons of calls from him throughout the days and weeks leading up to our decision to see how we were doing; the decision to visit with our rabbi--who cried with us as we told her our story and who shared with us about her five unsuccessful attempts at ivf; and then there was the one on Fri. Mar. 14 to skip out on our first scheduled termination. that was all gut. that decision led to the most peaceful day, up on the mountaintop, with me, my husband and our baby. we pretended nothing was wrong that day. it was our last, beautiful day with her. thanks, tash, for making me think about some of the decisions and their outcomes that i had previously forgotten to remember.
I made the decision for the doctors to stop working on my son.
I beat myself up all the time wondering if I made the right call.
I liked this book, quite a bit, specifically because it confirmed what I was feeling: and this five years ago when I had no blogs, and no friends or acquaintances who could confirm that I was not going out of my mind.
I, too, second guess, and I do try to trust that there must have been some reason why we made the choices we did. The thing I second guess the most is why we chose to say goodbye to our Charlotte when we did, only six hours after her birth. We were told we could have as much time as we wanted, to keep her ovenight, but I was so afraid of her seeming dead, of her getting cold. Suddenly about 6 hours after she died I was struck with this terrifying fear of having to say goodbye, and we did it ten minutes later. Now I look back and dream of holding her in my sleep, of curling her between us in the double bed that we slept in alone that night, and I wonder why we did that. She was there, in the building, downstairs, alone, while we cried together in the bed. Why would we do that?
I try not to wonder. Instead I try to believe that I was overwhelmed, exhausted, grief stricken, and made the choice that worked for me on that day. I didn't second guess the choice that day, or even the next day or week. It's only now, as I look back. So I try to trust it was the right choice.
What I wouldn't give, though, for one more hour.
I totally agree. I have regrets, but I have always told myself that we made the best decisions we could with the information you have at the time. That said -- I think parents in these situations are so completely shell-shocked. It's a whole new world they're entering -- & they need information and guidance from the professionals & caregivers who have been down this road with other patients. They know what the various options are in each situation, & what (generally) has helped & what has not.
For example, in my own situation, I did opt to see & hold my daughter -- after being told by the social worker that we could see her, and that most parents found it helpful to have those memories later. But I didn't unwrap her. I didn't even think to do it. They handed me this little bundle of blankets, with a tiny red face peeking out, & I just stared & stared at that little face.It didn't even occur to me that I could or should open the blankets & see the rest of her, count her fingers & toes, as I no doubt would have immediately done with a living baby. A gentle question from the nurse, "Would you like me to unwrap her for you?" might have signalled to me this was possible and even OK to do.
I know of parents who were told the hospital would "take care" of their baby's remains for them -- not realizing that meant their child would be buried in a common, anonymous grave, or disposed of along with other "medical waste," depending on how far along the pregnancy was.
I always recommend "Empty Cradle" to newly bereaved parents. It helped me a lot after my daughter's stillbirth. Of course, the Internet was not so developed back then...!
I need to add to this what happened after I did send away to my mother's arms. Katie died, and then I held her, and her father held her, and we said a prayer over her with the priest. We put her in the isolette and I did look at her. She was the most perfect, tiny thing I have ever seen.We had her cremated and held a memorial service on a cold blue day in March. Her urn was impossibly tiny. I held on for dear life to my husband as I said goodbye. I just needed to say that.
I too had to take my child off life support and I know it was right, like you said.."in my gut." Fact is, no mother should ever HAVE to make those kinds of decisions. So I reach out to you and applaud you simply for the fact that you did it. You were forced to make those decisions and you made it through. I often think that there is nothing more cruel in nature than to have to make that kind of decision. I wish people would understand....we weren't given many choices. So what you do decide, can't be wrong.
I have the book. It helped. A lot. At the time I had no idea that anything that I was feeling, had been felt by anyone else. I felt absolutely on my own.
We struggled with the decision but we don't regret it. In the end it was simply a decision about how she went; comfortable and in our arms, or venitlated and struggling. I didn't want her to die but I didn't want her to suffer anymore.
Wow, Tash. I have finally found someone and somewhere that UNDERSTANDS! What a relief.