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.