Saturday, May 19, 2012

trigger words

today, my trigger words have been pediatric hospice.

pediatric. hospice.

two words that do not belong together. a phrase that brings my mind back to some kind of breaking point. denial? bargaining? torture? comfort? relief? surrender? peace?

whatever happened to goonies never say die? don't we fight until the end and insist on fighting?

the choice was given to me while i was still pregnant. doctors nurses genetic counselors chaplain all nodding heads as i made, what i believed, the best choice. a path of nonviolence. a path of peace. ahimsa.

but the choice has haunted me. even though i'm more than nine months away from my loss, i still play the what if game. it's less torturous now, but still there.

i ask my mom, what if i would have taken a washcloth and wiped his face while he was still alive? made him open his eyes and try to look at me? i wish i could have seen his eyes. she says to me, sweetheart, we don't know if his eyes had even developed. if they were even there. what we did was right.

i ask my midwife, what if we would have suctioned out his mouth and nose and tried to get him to breathe? encouraged him a little bit more? she says to me, sweetheart, that baby needed a lot more support to start breathing. a lot more support. what we did was right.

we made arrangements for nathaniel's body while i was still pregnant. knowing he would likely die (but of course hoping hoping hoping he wouldn't, that he'd fight and breathe and live), we went to the cemetery while my belly was still full of him and made plans. picked out an urn. talked to the balding guy who was about my size and so earnest so earnest so earnest.

i thought that i'd have more peace about this, but i don't. my clinical brain completely understands. my heart absolutely does not.

pediatric. hospice.

making arrangements for nathaniel's body while i was still pregnant.

clocks melting. furniture twisting. time dripping.


  1. Oh sweetheart, So hard to make funeral arrangements while your belly was still full of kicking, wriggling, living baby. There are so many levels of grief.
    Sending love and prayers for peace, cause that's all I can do.

  2. The what ifs I think will haunt some of us forever.One of the big ones for me is after Jack's heart attack -should we have kept going? He went on life support,lost half his face, and eventually ended up in pallitive care dying slowly once again.

    I still have whole days where I am in tears over not just his
    death but the way he died . Still in my head I am always thinking what could I have done to make it better right down to the little things like did I get to hold him enough,did I talk to him enough, did I make the right decisions in his medical care?.It's like the song that never ends.

    I am so sorry;having to come to terms with loss before the baby is even born would be heartwrenching. xo to you and Nathaniel

  3. My heart was literally aching as I read about how you were making arrangements while still carrying your sweet son. Making arrangements in general was impossible-- but to do so while still gestating seems beyond the impossible. I'm sorry for these dang triggers. :/

  4. The second-guessing. I know it too well. We started pediatric hospice care when Elizabeth was 6 weeks old, and I still wonder sometimes, too - what if we had taken more extreme measures to extend her life? What would our/her world look like?

    Wishing you peace with your choices, made under impossible circumstances but with so much love.

  5. I play the what if game too. What if I were rushed to a high risk hospital instead of the maternity ward of a local general hospital that had no specialized equipment or staff to care for a baby Liam's age? What if I screamed and hollered more for them to transfer to the high risk hospital in town to deliver instead of watching the doctors who cared for us for a month give up on my son the way that they did?

    I also feel that the "what ifs" are less torturous now, but I know they'll always be there. I'll always wonder.

    I'm sending peace and love to you Suzanne. It's all so incomprehensible and unfair.

    Remembering Nathaniel always. xx

  6. 'My clinical brain completely understand. My heart absolutely does not.'

    This is a perfect description. After all these years, I am at perfect peace with my decision to let Georgina's life end. And at absolute and total war with it too. Because mothers aren't supposed to give up. Because I will always wonder if only I'd fought harder, if I'd loved her better, had a stronger will. Any number of things. Just maybe she might have lived.

    Some words just weren't meant to go together. Like pediatric and hospice.

    Places where clocks melt and time drips.

  7. Oh wow. Yes the shoulda coulda wouldas. They are so haunting. I was thinking of my mother who found out at 6 months along that my little brother had no kidneys or bladder and that he would die. She carried him the whole way. Gave birth by c-section and he lived for 4 hours. We got to hold him. I was 7. I remember. I know my parents had to make arrangements and think of what to do with his little body whe she was pregnant with him. This must be so painful in a way I don't get because it was not my experience. My loss was sudden and unexpected. My heart hurts for you and the trials of knowing in advance that nathanial would most like ly not survive. Sending a giant hug.

  8. Oh Suzanne. How you must have felt to be making arrangements with Nathaniel still alive inside you. I spent just about 24 hours in my 'regular life' between finding out A had died and being induced to deliver her - making plans for childcare while we were in the hospital, taking E to daycare, picking her up and feeding her supper and putting her to bed before going back to the hospital. It was surreal. It's heartbreaking, what you had to do.

    And oh how I too wish I'd seen my baby's eyes.

  9. My heart doesn't understand any of this, either. And I second-guess myself, too: What could I have done differently that could possibly have changed the outcome? I chase my own tail round and round and round, and then I bite it with sharp guilt.

    Pediatric and hospice are two words that shouldn't ever go together, and they wouldn't in a world that made sense.

    I'm so sorry that you're haunted and tortured by what ifs, and I wish there was some way I could give you peace. One thing I'm sure of, though, is that we anguish over our choices because we have so much love for our babies. So much love.

    Sending hugs to you, my friend, and thinking of your sweet Nathaniel. <3 <3 <3

  10. I'm sorry you had to make any choice at all... This is absolutely heartbreaking to read. I think of how many people must have looked at you and just seen a blooming pregnant woman, without knowing the torment you were going through inside.

    As for the pursuit of peace... if you ever catch it, can you send some my way? I think we all struggle with the what if's, nit picking everything and wondering if one tiny alteration would have lead to one major difference - life rather than death. As you say, my brain knows that the answer is 'probably not' but my heart just doesn't get it.