The luxury of choice

I recently told a friend, who happens to be a former colleague, that I watch House for professional development. She laughed. Nevertheless, it's true-- my training focused on the molecular level, and not until my current job did I need to know much about organismal, particularly human, biology.  Medical story lines on the show are pretty well researched, and they make interesting and weird connections-- all pluses in my book. But the real reason I can watch the show in that particular way is the writing. No, not because it's that good, or because they place all the clues out in the open. No, it's because they are forced to write the episodes starting from a medical scenario. 

What that means is that while they can and do develop the characters of the doctors on the show to reveal facets of personality or elements of background, to fill in the dimensions, to make them believable, at least to a degree, they have far less flexibility with the patients. If the patient in episode N needs to collapse unexpectedly in the opening sequence, pee blood right before the first commercial break, go into v-fib seven minutes later, fail to respond to the first several treatments House was sure were going to work, lie about something or other, and finally recover or die with enough time to spare to give some  screen time to the storylines about doctors' personal lives, well, that just doesn't leave much room for dramatic  and believable character development, does it? Which suits me just fine. If I don't buy the patient as a real character, I can concentrate on the medical aspects. So yes, professional development. With a side of ahem... eye candy, as my sister calls them.

One teeny tiny complication there-- they do develop their doctors as characters. Which is normally a good thing in a TV show. Completely messes with my frame of reference, though, when they make one of their own a patient. Can even make me cry when they then kill her. Yes, the season finale. Very well done episode, wherein they try and fail to save the life of one of their former colleagues who is also the newish girlfriend of the title character's best friend.

Tears show up for me a lot these days. Any report about collapsed schools in China is guaranteed to make my eyes water. Music can get me to well up, and I won't even watch some movies that I expect to be upsetting. And yet, over the last week I watched over a season of House on DVDs (thanks, sis), learned a bunch of new stuff, made some cool connections with the things I learned over this past semester, but didn't cry once.  I cried over that season finale, though. Couldn't articulate why. So I watched the second half again. Brilliant move, I know. But my need to know what was affecting me so much was greater than my need not to be affected again. I guess I can be analytical like that.

The second time I saw it, I knew right away. It was the dying doctor. Not that she was dying, but that she was making a choice, and articulating that choice. Her boyfriend asking her why is she not angry, why is she ok with dying. Because, she says, that is not the last emotion I want to experience.

She was dying. There was no way out. No choice, it seems. But she found something she had control over, and she made a choice. And the reason it made me sad, profoundly, deeply, for days after, is that I realized not everyone gets to make choices.

One of the things I try to do in my parenting, one of the things I articulate for my daughter is the issue of choice, of responsibility, of consequences.  Most choices children make are not of great consequence. You can choose to wear X or Y today. You can have this or that for dinner. But slowly, as they grow, so do their choices, and the consequences of those choices. Watching my daughter make increasingly more weighty choices has been one of the subtle pleasures of parenting.

I have appreciated for a long time,  from the very beginning, actually, that after A died, we did have some choices.  I chose to start the induction that same night, and to eventually accept pain relief, even though I wouldn't have likely for a live birth. We chose to name him, to hold him, to take pictures, to follow our doctor's recommendation and ask for the autopsy. We chose things after that too. Telling Monkey the truth, but not taking her to the funeral. Leaning on our friends, but not letting them come to the funeral either. Going back to work when each of us did. Many, many choices.

What I didn't appreciate, the way I never looked at this before was that making choices is yet another thing my son never got to do, will never get to do.  Babies have preferences, but no choices. His entire human existence passed, and he had no control of it, he never got to choose. I don't know what the last thing he experienced was. I do know he didn't get to choose it.

Maybe I am nitpicking. There are so many things that our babies won't get to do, so why am I focusing on this? My son also never drew a breath, but that thought has never made me sad for days on end. What is it about choice that makes it so fundamental to me, a loss in its own right? Perhaps it's all about what choice means to me. Autonomy, ownership, even avoidance of guilt. Because to me making a thoughtful choice means making the right choice.

I know that not everyone feels this way about having choices. I know people who hate having them, hate having to make them. So this is what I wanted to ask you today-- how do you feel about choices? Are they a cornerstone of human experience or a giant cosmic torture?

Two clicks is all it takes

This will be short and sweet. Wordpress layout designers apparently blog about only happy shiny things. I deduce that because on their statistics page they label the day you got the most visits on your blog as, and I kid you not, The Best Day Ever. So Allison at Our Own Creation has to stare at her stat page defining the day she lost her daughter, Zoë, weeks after losing her son Lennox, as the best day ever. Every single day. Right.

We can change that. With a click. Two clicks, actually. One to go to Our Own Creation, and one to click through from there to the blog Allison was keeping for Zoë. Two clicks is all it takes to make every day from now on suck a little less for this one bereaved family. Two clicks before 8pm Eastern time tomorrow, Thursday, May 29th. Please.

New post from Janis  below this. 

the dimension of time

What will it be like, remembering, or, forgetting, in a space vacuum of time?

What does time help us measure? How does it help us cope, or does the awareness of time aggravate our experiences?

++++++++++

This past weekend we celebrated dd's seven-year-old birthday. She has been counting down to her special day since last year, double-checking the days on her calendar, counting each square three times over to make sure that indeed there is 57 (or any other number) days left to her birthday, and all that.

I presented her with the Mango cream cake she had requested, sat down and watched the warm glow of the candle flames dancing on her face as she sat and smiled while her father took pictures, and I thought, "I have been a mother for seven years."

Of course, seven year is nothing in the big context of Time. Barely a drop in the ocean. But, it is seven years of my life. The total of my daughter's life. It felt so short, and yet so long. Most of all, it felt incredible.

Of course, I thought of our little Ferdinand. Sadness came into me, as I swallowed my tears and thought, "He would never know how this cake tastes like." He would never eat anything that I bake or cook.

If seven years is barely a drop in the ocean of Time, then, his time, earthside, is barely even an atom. I think this is what kills most bereaved, that brevity. Not enough time. Too short.

So, we turn things around. I changed my way of thinking. I see him as forever and eternal. Always been here and always will be here. Not confined to the form of a baby boy, but an eternal Spirit that is undying and indestructible like the omnipresent dust.

(And then sometimes grieving starts to feel so eternal too.)

Some time ago I was reading a book with dd about how people started to celebrate birthdays. Long, long, long ago, people did not celebrate their birthdays. At least, not commoners like us. Even longer ago, the idea of celebrating a birthday was not even there. Because, long, long ago, people have yet to figure out the concept of time, and how to calculate it. For a long time, they just sat and rubbed their stone tools together, trying to make a fire. If it takes them "five days" to stalk and capture an animal, then it is just whatever it takes to get food; and how long the food fills their stomach is simply how long it does. But as they sat and scratch the earth and figured out fire, they noticed that the weird shiny object in the sky changes shape with a regularity. Earth, moving in a rhythm in silent agreement with the Universe, brought light and darkness, and the moon to humans at regular intervals.

Somehow, between spitting and scratching heads and pondering and fighting and ruminating and making peace, our ancestors found out a way to keep track of time. Calendars came into being and now we all get a way to be on the same page. (At least to a certain degree.) I do not say, "When the half-moon is directly above the oak tree in the far corner of the yard, we can think about having sex." I can plan weeks ahead what to do, when to meet friends, set deadlines for assignments, set goals for whatevers. Knowing that time will unfold regularly and without fail, helps. And sometimes, strangles.

++++++++++

Recently, a friend wrote to ask for pictures of my "three children". He asked what is the name of my youngest and how is life with three kids. It made me keel over.

Because for ten months they had thought and imagined us in bliss, leading a busy and crazy life juggling three kids. But instead we were grieving.

Would it had been easier if he had emailed me one month after the event? Yes.

Would it had been easier if, for some reason we lost touch for ten years and then we met and he asked? Maybe.

Why is ten months so hard?

I don't know.

Maybe because it is two months away from one year. Just two months away from the full cycle of one year, when we would have celebrated his one-year-old birthday.

But I am not exactly sure why.

Why do we sit and count the days and weeks and months like this?

Why do we sit and imagine all the could-have-been's by the days and weeks and months? -- This month he could have been sitting. This month he might be walking already! This month he would be two years old. This month he would be going to school for the first time in his life, etc etc etc.

If we sit in a vacuum of time, would grieving be easier?

If we have no knowledge of how much time had lapsed, would living be easier?

When there exists no more measurements of how long, how short, how fast, how slow, how much, how little, how frequent or how often, would it be easier?

I don't know. Still trying to figure it out.

two solitudes

In that last hour, our hello and goodbye, it was Dave who cried.

I'd never really seen tears well up for him, before.  I haven't since.  Watching him cradle our son as those few salt drops slid onto Finn's blanket was one of the tenderest things I've witnessed, a benediction of fatherhood more fitting, for us, than the baptism we'd rejected.

I didn't cry.  I was too fresh from birth, too present, too amazed by this firstborn boy I hadn't known I'd always wanted, too busy trying to fit a lifetime into the minutes we had.  I sang to him, raw-voiced, petted his dark hair, gazed in wonderment at his tidy, perfect ears, his finger gripping mine.  I told him he was wanted and loved.  I whispered and hushed and said, mama's here...it's okay, little one, don't be afraid.   I knew exactly what was happening, but in that moment - small mercies of shock - it was not happening to me.  It was happening to my child, and just to be present and with him was all the mothering I was ever going to get to do and all my mind could take in.  And so, somehow, I did not cry, me who weeps at car commercials and bristles with indignant tears when the least of my feelings is trod upon.

But later I filled buckets...tears of sorrow and of rage and hopelessness.  After his death was done happening to Finn, it happened to me a thousand times in replay, all the loss and brokenness that did not touch me in the moment crowding in tenfold.  The bright yellow walls of our kitchen, painted in the first days after we returned home, have my tears in their butter hue.  The backsplash of broken tile is a mosaic created of therapeutic sessions, me and a hammer and licensed destruction that kept me, I think, from the siren song of disappearance, of hurting myself.

Dave, though, did not cry again.  He held me, weathered me, all that long summer...and all these years since, in the moments where my bitterness and hurt and grief have burbled up to the surface and unleashed tears and wounded cries.  But this has not been how he has grieved.  His sorrow seems to have no questions, no self-pity.  He went back to work five days later, because he had to and I had already lost my job, and he came home lunchtimes in those early days...mostly, I think, to make sure I wasn't hanging from the rafters. And he answered a multitude of questions about how I was doing and he listened to a multitude of secret stories that came spilling out about others' losses long since unspoken and he came home at night and we sat on the deck and I tried desperately to think of something to say to him but came up silent because I had nothing to offer but lamentations...and sometimes he seemed like a stone that I could only break myself on.

I don't think anyone ever asked me how he was.

And yet even in the worst of it, I knew we were lucky...because there was trust between us, implicit and otherwise unscarred.  Because I knew he tried hard not to judge me for how I grieved, no matter how ugly and exposed our differences made me feel.  Because I knew and did not doubt that he, too, loved our son and missed him and thought of him...even if we weren't able to find ways of speaking that aloud to each other.

But we were still two solitudes, living separate lives for a very long time, hurting - and in ways hurting each other - even while trying to comfort and build.

There is a terrible intimacy in having to share grief with someone.  Even if you both feel it deeply, you almost inevitably will not experience it all in the same ways and at the same time.  And I wonder if there isn't something about grieving that makes some small part of all of us a little like a cat who crawls off to find a corner alone to die in.  The urge for solitude, sanctuary to lick our wounds in in some form or other, seems to be almost a categorical imperative...no matter how we may share ourselves on the internet and even long for commiseration...the reality of mourning in tandem is almost always messy.  Grief exposes too much of us, makes the intimacy of eyes searching ours overwhelming.

Dave and I have come out the other side, three years later.  I can hold his gaze now and look back without flinching, without hiding, without seeing pain there or pain reflected.   There are no other eyes in the world that have shared with me what his have, and we are both healed enough now, in our own separate ways, that the bond doesn't rub raw but honours, commemorates, cements us.  I am grateful for his having been there all along, for not having had to find my way alone.  And yet I know, if I am honest, that we were alone, in the core of ourselves, stumbling along harnessed together by good faith and nothing else for much of that time.  And I catch my breath and think, damn, no wonder divorce rates are so high in the aftermath of loss like this.  And I fear to look deeper than that, because I do not want to feast my eyes upon the scars any longer.

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.