Monday, April 07, 2014


Rage.  This is about rage.  I have not posted in over 2 years (another long sordid legal story), and my first post is about rage. 
So if you have better things to do than read about rage, then please go do them now!
I'm not supposed to be filled with rage.  I'm supposed to be filled with love and memories and good feelings.  I'm supposed to be grateful for the short time I had my son.  I'm supposed to revel in the gift which he was to us. 
Make no mistake, he was a gift.  But still, I am filled with rage.
For years I wouldn't allow this rage to surface because I was afraid it would consume me.  Turns out I was more or less correct.  It seeped in, crawling in like the fog on little cat feet.  It oozed in, flooding my mind with muck.  I tried to run, but I was too slow.  I tried to ignore it, but I was too deluded.  I tried to just deal with it, but I want to crawl out of my skin. 
Rage is poison, and I feel like I am being poisoned.  For days now, I have kept almost no food down, as my body reacts to this emotional muck by attempting to purge it.
Sure, I've written about how the medical community at Stanford let us down in every way...I had disappointment and occasional rage at their treatment of Elijah and of me, his mother. 
But this is powerful rage and I can't really escape it, and I don't know how to get it out of me.  I walk around shaking my hands as if I can shake off the rage.  If the rage were just a thin coating of mucus, that might work.  But it isn't working.
'Find another way to deal with this, you're not honoring your son' - A wise and kind friend pointed out.
And I felt a bit filled with rage.  Because if I could choose to never have experienced this feeling, I would have.  We'd all be better off, wouldn't we?
I tried to explain, but it just came off as 'you don't understand if you've never lost a child, wah wah wah'.  I hate pulling out that card when the friend is coming from a place of sincerity.
I want only good memories.  The sparkling ocean behind Elijah's sparkling ocean-blue eyes as I held him up to the sunset on Ke'e Beach in Kauai.  The joy he exuded, the first time I fed him pumpkin pie. The way he would steal his sister's pacifier right out of her mouth if he got close enough. The way his barely visible eyebrows would arc in excitement whenever he saw something shiny.  The way he could sing along in correct pitch with any song, this child who never uttered a word. The way he smelled like cedar and vanilla, his tight white curls releasing their secret perfume upon nuzzling. 
And there are the memories, just as vivid, just as poignant, which I would love to have selectively deleted. The memory of his last moments, as he gasped for air.  The memory of being in the ER, handing my blanket-wrapped son over to a nurse, knowing that she was one human in a chain of people and events, who would make sure his body made it fucking furnace. The way that irony smacked me in the face.
Of driving home with his empty carseat, of coming home to his empty crib, of turning every single picture of him over because all I could see at that moment was him gasping for his last breath. Of walking into a fancy hotel in Maui (where we had gone to wait out and wade through some of the mountain of grief set before us), seeing a koi pond and nearly fainting.  Of running at top speed out of that hotel because the koi fish begging for food looked exactly like my baby begging for air.
So many good memories, so very  many that one can eek out of 13 months and 11 days.
And so many things gone wrong.
The disappointing 'experts' who were entrusted with the care of my son and who couldn't give a rats ass about him.  Okay, let's employ diplomacy to that statement: 'Experts' in their ivory tower who consistently expressed SHOCK over how very DIFFERENT our baby was, yet took no educational interest in him and allowed him to waste away while we waited three months for the privilege to even be seen by the next 'expert'.  Really.  That makes me bitter.  For ten years I have talked to Real Experts (doctors worth my time) about this, and there isn't one who wasn't at least surprised.
And here's one that keeps haunting me this year.  One which I would MUCH RATHER PRETEND NEVER HAPPENED.
But it did.
When I was 28 weeks pregnant, I started having contractions in what we thought was pre-term labor.  I was medi-vacced (most terrifying flight of my life, to this day I have PTSD around helicopters) to a hospital with a higher level NICU. I was put on magnesium sulfate.  This drug made me so sick.  I couldn't see straight, I was vomiting, I couldn't walk or hold a cup, I had a raging migraine, and I thought my hair was on fire.  Seriously, I thought my hair was on fire and kept asking the nurses if they couldn't smell the burning hair.
Meanwhile, my ex was screaming at me that this was all my fault. I still don't understand what he meant, other than the fact that my womb was failing my son and therefore I was failing him?
I sobbed to the nurses and begged them to take me off the mag.  They would look ever so kindly at me and remind me that they would "never, EVER do something to harm my baby".  The more I asked about feeling this poison going into my body, the more they reduced me to a small petulant child protesting an immunization. They assured me it would be for only a week, maximum.
A week passed, then another.  They kept refilling the bags of mag on my IV pole, and I started to number them, to insist the nurses number the bags with a sharpie.
In addition to the magnesium sulfate, my thigh was outfitted with a terbutaline pump. Extra poison in case the first one didn't do the trick.
Another week passed.  I had no doctor; I was a transferred patient at the mercy of the trio of the practicing OBs (all male) at this hospital. I was far from home.  Each doctor seemed to have a different idea of how to proceed, yet none of them appeared to discuss their treatment plan with the others. I was at the mercy of protocol, poor communication, and impulsive decisions.  Nobody would let me go home.  The contractions continued with or without the mag sulfate, but the bags kept coming.  The poison kept dripping in slowly.
As sick as I was, I was not spineless.  I found a voice. 
"What are you doing to my baby?  This is not okay!  I am being poisoned and so is my baby!"  The nurses would fret and reassure.  The doctors would indignantly scold me for my skepticism.  Tsk, tsk, you don't trust's another bag of poison for you!  I didn't quit. I asked and asked and begged for them to pull the IV.  A woman appeared at my door with a wheelchair. "Hop in, we're going for a ride!" she said, cheerfully.  Desperate to see anything other than my own four walls, I complied. We took a little spin on down to the NICU. "See?" 
"See? See what?"
"Well, you don't want to have a baby with a head the size of a tangerine, do you?"
I was confused.  Of course a grapefruit size would be better, right?  But what was her deal?
Over the next few weeks it became clear.  I was feeling pretty out of it, but I still had some of my wits about me.  More bags of mag were administered, more protests and concerns were voiced and fell upon condescending ears.  I would cry. And then that sweet little social worker would appear with my chariot and we would go back to the NICU to remind me how my baby should be born with a head the size of larger, not smaller citrus fruits.
That was it.
Question and protest, have my innocent little hand patted, and then the scare tactic: The NICU.   (What I would later learn is that the NICU is a scary motherfucking place anyway.)
Six weeks I was kept on that nasty drug.  Each week they'd tell me it was the last.  Six weeks = 93 bags of magnesium sulfate which dripped into my body....and Elijah's.  On the last day of week six, they mercifully detached the bag and told me to get ready to have a baby.  Three days later I was discharged, still pregnant.  Three weeks after that, I was induced and Elijah was born. And then that mysterious journey began.
And just 24 hours after he was born, and then transported by ambulance to The NICU at Other Hospital, I was looking over my limp baby in his isolette at yet another strange face: The neonatologist.  As blood and afterbirth dripped down my legs (having become vertical and nervous far too soon after giving birth), he shook his head in confusion, babbled about tests they would run, and words blurred with my vision.  I blurted out, "I was on magnesium sulfate!  Did this happen because of that?  Did I make my baby sick?!"
He quickly assured me that mag was 'safe' and out of my system and Elijah's days after it had been discontinued. 
"But I was on it for SIX WEEKS! It was 93 bags!" I cried.
And then.  His face.  The raised eyebrows, the flicker of shock, tempered by his practiced response of masking.  Masking and protecting, they way they do in the medical world.
This was to become a pattern which would be repeated with every single ''specialist' to cross our paths.  The flicker.  The disbelief.  The covered up response.
My son had every single chromosomal test (deletion included) known at that time and each one came back normal.  Maybe that only means that diagnostic techniques were lacking 11 years ago, and 'normal' is only limited to what we know and don't, what science can diagnose and what it cannot.
Maybe my son would have died early from some undiagnosed genetic disorder.  Maybe he would not have died from bronchitis.  Maybe he would still be alive.
I don't know.  I know I don't.
But I know this.  There are things that nobody knows and nobody ever will.  There are answers I want and will never have. 

And?  I am angry.  I am rageful.
And I am going to allow this, because I simply don't know what else to do. 
I have to find a way to move beyond it, but here I am for now. 

Here is a link about mag sulfate and a more recent study.


tracey becker said...

I cannot judge your rage. In fact, I think I understand the concept of rage, without an end cap to the length of time, more than I can understand how you are able to be positive. And you ARE positive. You are. You are feeling rage and I think it's incredibly normal.

Sending you love. I hope the rage passes and you are able to once again focus on the good memories of your sweet boy...

Kate said...

I think I know a little bit of how you feel. I just discovered last week that that the "completely safe" terbutaline I was given to stop my contractions at 2 days shy of 35 weeks (when they wouldn't have bothered) now has a black box warning against use in pregnant women and is probably the reason for my son's sensory processing disorder. So yeah, you rage all you want.

Felicia said...

You rage, you rage until you can't rage anymore and then rage some more. You know why, because you are his mommy, you went through all that. So, if you need to rage you do it!

Big Hugs.

Ashley said...

I was literally just thinking about you the other day and wondering about your journey. I hear your rage. I witness it. It is powerful, and real, and valid, just like your love for Elijah.

Bree S. said...

I think about you from time to time, and just googled your name tonight... to my surprise, you posted very recently. I am glad to see you back, and glad that you have finally let the rage free.

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RoseRedHoofbeats said...

Hey. I haven't commented in like...not shit eight years, but I happened to just see and if you'd updated. I wanted to say thank you for everything you've written, you've helped me through so much, and your posts about grief and what to do when children die has helped me and many of my friends. I always send them your blog.

I'm so sorry for what happened and how fucking let down you were by your doctors. By his doctors. And your fucking ex.

Rachel Dysart said...

Sometimes I come to this site to remember you. To remember Elijah. If there is a heaven I hope you are holding him in your arms. Thank you for taking a chance to chat with me in Costco 18 years ago and bringing me into your musical universe. RIP sweet lady

Ashley Martin-Hanlon said...

Wait.... I don't understand. Has she died? I...didn't know. Are you sure?

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