don't hold me and burn me

"What, honey, what did you say?"

"Mom, I don't want you to hold me and burn me."

We were in a thrift store. Me and my two living children. I was sifting through the racks, tired from desperation. I needed to find something I can fit into. Something that could accomodate my flabby post-birth body and my swollen grief. Then I heard my younger daughter, then four, say those words--

"Please do not hold me and burn me."

I had to ask her to repeat a few times because I was not sure what she was talking about.

And then suddenly, under that fluorescent lighting of the store and amidst the smell of pre-owned clothing I suddenly realized what she was talking about.

Of course.

They were with us when we looked at Ferdinand and held him for the last time, before his cremation. She saw me holding him, pressing his hard, frozen body wrapped in a blanket against my chest, saying goodbye. We sang to him together, in that little tiny room without any windows. Then, we drove behind the car of the mortuary guy to the crematorium and they saw him being put in a container and then we said goodbye one more time, and he was cremated.

She was afraid that as my child, I will do the same to her- hold her and then burn her.

I cannot even begin to tell you the feelings that coursed through my body upon the realization. How I held on to the shopping cart to stop myself crumbling to pieces and then leaned over and hugged her and assured her that of course, I would not do that. I told her that we had to cremate her little brother because he was dead.

::

Children and death. It seems they deal with it with grace and ease, and then it seems they get all tangled up in the concept and get confused.

My daughter was four then. Not having witnessed the process of death with her own eyes, death was a very abstract concept to her. While we immediately treated Ferdinand's death in an honest and factual manner, she did not understand it. When they came to the hospital to see him after his birth, his battered body wrapped up in a blanket, with an oversized cap pulled over his head, all to make him appear as "normal" as possible, she asked me to show her his hand, the rest of his head, and she asked if he has a tongue. Since she did not see him alive, ever, she did not understand why he is dead. What makes him dead? Will he still have a tongue, a hand, a head?

Then, I guess as she tried to figure it all out in her head, she asked me, weeks after, to not hold her and burn her.

What keeled me was the thought that she felt that I had the power over her. I could hold her and burn her, if I wish to. Except of course, that was not the case. I was also afraid that she thought that I killed her baby brother. I held him and burned him, reduced him to but a small bag of ashes. I spent the days after telling her over and over again that we did not know why Ferdinand died, but he did, and after a person die, there are different ways of dealing with the body, and cremation was what we chose.

:::

Now, she is a few months shy of becoming six. I think she sort of gets it now. She asks about whether I will bake a cake for Ferdinand this year, as we did last year. She talks about him being dead but still close to us. She no longer asks that I not hold her and burn her. Recently they both had to draw some pictures of our family as they fill in a family tree. She drew her brother just like any other "normal" person she would draw, while her older sister drew him with wings, the way she always envisions him- flying in the sky above us.

::

I wish there is an easier way to explain death to children, but it is really so abstract. And another difficult thing to deal with after our baby has died. We read some books about death after Ferdinand died, but I think the one we liked the most and found the most comfort in was the book Lifetimes. It explains about life, living and death in easily understood terms, and at times I find solace, comfort and strength in these ideas. Not always, but at least, some times.

How about you? Did you have to explain death to younger children, or to children of friends and family? How did you do it? What reactions did you get? What made you keel? Was there anything out of children's mouth that had comforted you? Do you have a book you can recommend for children to talk about death?

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.

The Rule of Thirds

“Keep in mind the rule of thirds:  one-third of your friends will be supportive of your need to mourn, one-third will make you feel worse, and one-third will neither help nor hinder."

--From Alan D. Wolfelt, Healing A Parent’s Grieving Heart:  100 Practical Ideas After Your Child Dies

A good friend who lost her husband very suddenly to a brain tumor in ’04 sent me this book last year after Maddy died.  She liked the “Spouse” version, and being cut of a similar cynical edgy sports-lovin’ foul-mouthed cloth as I, thought I might appreciate Child version.  I did, it’s the griefbook I appreciated most, and still find myself picking it up a year later.  One thing I really like about this book is that every page is a topic with a few bullet points, so you can open it randomly and discover something, and if something sits wrong on a particular day you can just flip to the next page and see if that feels better.  (Or put it down, and pick it up months later.  I find it to be rather timeless that way.)  No need to sit and feel like you need a few hours to go through something linear.  I also like that, for-all-intents-and-purposes, it’s genderless and can be applied equally to a husband or wife -- and let’s face it, very little out there on this subject can be.

I'm sure I read this particular passage long ago, during the first pass, but wish it had stuck.  It did not.  And so I am constantly amazed at those thirds who fall at the ends of the spectrum, the ones who surprise me with their understanding and kindness, and the ones who floor me with their inability to show even a modicum of compassion.  The other surprise for me was that this “third rule” included family.

Let’s start with the innocuous middle third.  There will always be those who will treat your life-altering experience as a vacation:  you were gone for a while, you came back, maybe shared some pictures and stories, people mingled around the water cooler for a few days to follow up, and then it got dropped and life moved on.  At some times I’m a bit taken aback at what appears to be complete ignorance (“Did I tell you?  You do know that my kid died, right?”) and yet 30 seconds later am so fucking relieved to be deeply involved in a conversation about how maybe I should pay attention to the  Penguins in the playoffs this year.  Aback that they wouldn’t say anything, relieved that they said nothing, all the while rather pleased that they don’t view me as some bad jinxy hex that needs avoided altogether (although I may be missing some crucifix and garlic waving when I turn to leave).  And frankly I’m at the point where I’m rather pleased that I can go places and talk to people WHO KNOW about things like books and dogs and whether the Steelers did right in the draft (another quarterback?  really?).

I’m constantly surprised by the bookends.  I’m blessed to have some very good friends and family in my life that I knew would be supportive, and they are, but I’m always so impressed by how much.  These are people who have such grace, they make it seem so effortless to say the right thing at exactly the right time.   I end up thanking them, they are just so meaningful and classy, and they look at me as though I’m thanking them for breathing or combing their hair – they simply can’t understand what it is they’re doing that warrants praise when it is simply how they are.  And I realize:  I probably wouldn’t be one of these people if I were on the other side of this mess.  I’d be tongue-tied, never knowing what to say, not horribly sure of my own emotional sanity, and probably wind up in the innocuous middle chatting about the NFL draft.  

But I know I give thanks, and am so surprised by the outpouring of kindness, because of the other end of the spectrum where people shock me with their unsympathetic cruelty.  I don’t think in a million years I would’ve thought that someone could turn my baby dying against me, but indeed, some have.  If someone had told me the day after Maddy died that friends and (gasp) family would not just behave awkwardly around us but actually treat us poorly I would’ve scoffed.  No way.  People are not that stupid and cruel, are they?  (are they?)

Um, yes, gentle reader, they are.  It really began in earnest around six months after.  And suddenly  people began leaving signs in fluorescent paint:  enough.  Stop.  You’re wallowing.  Party poopers.  Isn’t it time to move on?  How dare you suck the life out of someone else’s joyful event.  Don’t want to call me?  Well, two can play at the game.  Apparently six months is about the time when the people of little patience move into that end of the spectrum, and begin a not-too-subtle dance of pushing you, hurrying you, belittling you, ignoring you.  I think it dawns on others, if you’ve ignored them for this long for other reasons (say, they have children that would’ve been the age of your deadone and they haven’t been horribly involved anyway, staying in the middle third for so long), that you’re avoiding them.  No, you’re angry at them.  They develop a complete psychosis about how you must feel about them, without them asking you.  And if you’re unlucky, someday they’ll dump it on you – like one of my neighbors did.

Perhaps most surprising and upsetting to me was that family fell into this category of the “make you feel worse” third.  I should add a disclaimer here that I do have a couple family members – one who I assumed would handle the situation poorly given past experience, and another who had a baby shortly after who we ceased contact with – who have flabbergasted me with their solid appearance in the front end of the spectrum.  They are patient, articulate, compassionate, and the latter even defends us against the detractors despite the fact that we haven’t seen them much since the birth of their son.   But to think your own flesh and blood would grow tired of your grief -- tire of hearing of their relative!  Maddy!  Don’t you miss her too? --  impatiently try and hustle you along through the alleged grief steps (“They must be in that anger phase”), wonder if you’d ever snap out of it.   And then do things like fail to show up at a memorial service for your daughter after promising they’d be there, refuse to answer your calls (even on holidays) after telling them they were disappointed, and as Julia so eloquently put it a few days ago:  refuse to check their shit at the door.  It’s not about them, none of this.

I’m torn; while I’m relieved to look around the blogverse and realize other people’s families let them down too and we’re not the only dysfunction to arise from the ashes of a deadbaby, I’m also saddened that it seems to be such a pattern.  There’s a dissertation to be written here, about the pressures such tragedies put on extended families and how they deal with them long term.   Are they more invested in our happiness than our friends, neighbors and coworkers?  Or does the law of averages simply say that a third of the people you run with, no matter their relation to you, will fall over there, off the edge into a pit of selfishness and denial and ignorance?

But when they get me down, I flip over and revel in the wonderful part of the spectrum again, and wonder why it is that everyone isn’t wired like that.  I would like to think behaving that way is human.  It’s clearly not.

No words

I have no words for you. No words.

I imagined I might be more eloquent, having experienced the loss of my baby. But no, I have not become more eloquent. I know that pain of loss; I understand that yearning, but I still have no words. Not for you.

I overflowed with words after F died, and I poured them into my journal, then my blog. So many things to say, so many words fighting to get out of my head, wanting to be transformed from sounds to black words on the blank screen. So I wrote, and wrote, and wrote…

I thought I would have filled a whole bulging notebook by now, of things I can say to comfort. To let you know that you are not alone. That our children are always remembered, held in this bond forged by loss and love. That crying is ok, and that anger and profanity is fine.

I thought, I could fill in that pause for you, when you stop to search, to grope for that word that will speak your pain. I thought, I could make an outline for you, make a shape, and show you, "Yeah, it looks just like this." But no, I have tried and failed. I am still trying to find that edge, so I can feel around it, so I can frame it and really look at it and study it. 

I thought, as a thread in this quilt of grief and pain, words would just come to me. I would so flawlessly express the ache that every heart wishes to articulate. But, that is not the case.

I thought I would have a magic balm made of soothing words, that once applied, will take away your tears. That will at least the pain in your heart ameliorate. That can make hurt go away, at least for a little while. And to calm that throbbing heart that stings with pain.

But no, I have no words to put into that balm.

I thought by now I have mastered those ingredients of that special recipe of sad soup, that once drank, will course through your body and gather all those pain and sorrow, and then the soup, saturated with sadness, will sweat through your pores and vanish into thin air. So perhaps for a night you sleep in peace, forgetting mournfulness and grief for a few hours. And then, in your dreams, you will hear a song, sang with sweet words of knowing, to soothe that ravaged heart and sore body.

But no, I have no words. Not for that sad song; not even for a card.

I thought, after I have spent so much time banging on my keyboard, looking for the letters and stringing together words to express my own grief and angst, that I can just open my mouth and let my words reach across and touch you. To form a protective shroud around you to comfort you and bring you some light.

But no, I have no words.

Everything I can think of is either lame, stupid or plain clumsy. Everything I can think of comes out wrong once I type them. Everything I can think of, however much heartfelt, is not going to take away any pain or grief or hurt.

I have no words. No words at all.

I can only think of you, and your babies and children. I can only work hard to believe that because they are loved, they are in us, with us, and will never ever be forgotten. In this special space of bereaved and loss, our lost little ones have a special place. I see them. I do believe in my heart, deeply and desperately, that they are here, so close yet so far.

But I am sorry, I have no words.

Only when I read Sukie Mille’s book did I understand this. I have been writing before F was born, and after he died. I wrote and wrote, spewing out pages after pages of words. Only after I read her book did I realize that it was because there is no language for the discussion of a child’s death that I had to search so hard for words, to find that pulse that throbs in agony for being unspeakable.