Tuesday, October 9, 2012

Day 9: Special Place


A beach close to home. September 2012

 The beach. Any beach. The ocean has always been soothing to me and it's even more healing now than before. Part of me wishes I could move to a beach. Maybe Puerto Rico or St. Thomas. If only...

Trunk Bay, St. John, USVI. May 2007.

Monday, October 8, 2012

Day 8: Jewelry

Top: necklace given to me by my friend Monica, the front says Always in my Heart and the back says Elliot. it also has a set of footprints and his birthstone,
Bottom left: Mother's ring given to me by my dad, it says Elliot on the left and has his birthdate on the right and has his birthstone in the center.
Bottom center and left are what they should look like if I had a real camera.

Sunday, October 7, 2012

Day 7: What to Say

I get that it's hard to know what to say. If in doubt, these work for me. It is better to say something than to say nothing. Ignoring someone's pain only makes it worse.

Saturday, October 6, 2012

Day 6: Things Not to Say

Maybe someone thinks these things are helpful, but certainly not me. I'd like to think that if there is a God, his plan doesn't involve killing my son. Yes, if he had to die, then it would be wonderful for Elliot to be in heaven. If there is a heaven, I know he is there. But don't say that to a grieving mother. All I want is for him to still be here with me.

Thursday, October 4, 2012

Day 4: Most Treasured Items

My most treasured things are my memories of Elliot. His soft skin. Chubby legs and arms. Huge feet! The weight of his warm, heavy body on my chest. That new baby smell. How I felt the first time I saw him and the first time I held him.

My most treasured items are the tangible things that remind us of Elliot. The beautiful photos we have, his frog and anything else he touched or wore, and the molds of his feet (thanks to the awesome NICU staff). Also, the scrap book pages the NICU staff made for us.

Wednesday, October 3, 2012

Day 3: After Loss Self Portrait

I have been nervous about sharing this photo, but I think it is so powerful and full of emotion. This is after Elliot's donation surgery. Our last goodbye.

Tuesday, October 2, 2012

Day 2: Before Loss Self Portrait

Andy took this photo while I was in labor with Elliot. Obviously early on, before the real pain started. This is the last photo of the old me.

Monday, October 1, 2012

Day 1: Sunrise

The moon setting at sunrise on October 1, 2012.
Sorry for the grainy camera phone photo.

Capture your Grief 2012

The wonderful Cary Marie has designed a photo challenge for the loss community to commemorate Pregnancy and Infant Loss Awareness Month. I'm not doing it in the official-share-your-photos-with-everyone Facebook event. So I'll share them with everyone via the blog. Here is the list:
http://carlymarieprojectheal.com/2012/09/capture-your-grief-this-october-2012-for-pregnancy-infant-loss-awareness-month.html

Tuesday, September 4, 2012

Sunday, August 19, 2012

Day of Hope

"...August 19th is about honouring and remembering the lives of babies and children that could not stay with us. By doing this we are speaking out about the death of babies and children.

August 19th is a day to break down the walls of society that keep pregnancy, infant and child loss a hush hush subject. People view the death of a baby as just a sad thing that happened. These babies that die are not sad things that happen. They are people, much loved and wanted children. They are brothers, sisters, nieces, nephews, grandsons and granddaughters.

August 19th is about openly speaking about these children and celebrating their short lives.

By having this special day once a year we get people speaking about pregnancy, infant and child loss. And by doing this we break those walls down so that people are not afraid to speak about these children anymore."

Quote and photos copyright:
http://carlymarieprojectheal.com/international-dates/august-19th-day-of-hope


 Elliot, I remember you and I love you, today and forever.

Saturday, August 4, 2012

surgery, saying goodbye

E was declared brain dead on 10-18-11 at about 10 in the morning. That's when the death certificate was signed. We kept him on life support long enough for them to find recipients for his viable organs. There was a lot of paperwork. A few blood tests for me and E. As soon as a heart recipient was located, they set a time for surgery and we waited. About 36 hours from being declared legally dead to the donation surgery.

Our families came back to say goodbye and some got to hold him for the first and last time. We slept some. I got to hold E for a few hours and fall asleep with him on my chest. Something I'd been very much looking forward to, but not like this. We also had to scramble to find a funeral home to take E's body after the autopsy and start thinking about cremation/burial/funeral arrangements. So much to do and all I wanted to do was to hold him while I still could. Luckily my dad did most of the legwork and came to us with a few options so it wasn't as overwhelming.

At about 11:30 pm on 10-19-11 it was time for E to go to surgery. The transplant team was in place. It was time to say the first goodbye. It was torture. How to you kiss your child goodbye while their heart is still beating? I think it was the single most difficult thing I have ever done. Intellectually, I knew he was gone. I knew there was no taking him home. No future. But my heart screamed out, "Please don't take my baby!" We said our goodbyes and kissed and hugged E, then they started taking him away and I wailed. I cried harder than I have ever cried in my life. A. had to help me walk. We had to walk away. To the little room at the end of the NICU where we would wait.

The couch in this room folded out into a bed. A. and I got into bed and held each other and cried. I fell asleep after a bit and A. said that I kept whimpering and jerking awake. He stayed awake to soothe me back to sleep. I needed that sleep.

Around 4am, surgery was over. They came to tell us and let us know that they would be bringing E to us soon. My baby boy was a hero. They closed him up and put him in an outfit I picked out. It was footed pajamas, white with green frogs and blue stars. One of the first outfits I bought for him when I was pregnant. They also wrapped him up in blankets. Receiving blankets that we brought from home. Green with stars and grey with stars. He was swaddled tightly. Nurse K carried him into the room. Neither of us knew what to do. She handed him to A. We asked her not to leave. It was the only time I got to see him without any tubes, IVs or wires. He was so cold already. And his face was yellow from the iodine. Probably his whole body. But he was perfect and at peace. It was really real now. He was dead. My beautiful baby boy. The last time I'll ever get to kiss him or hold him. I still remember the weight. I miss it. My arms ached for months missing that weight.

I miss him.

Wednesday, July 25, 2012

Home Repair, Lucy Van Pelt, and 'The Way of the Gun' Home Repair, Lucy Van Pelt, and 'The Way of the Gun'



“I think a plan is just a list of things that don't happen.”
Ryan Philippe as Christopher Walken as 'Parker' in 'Way of the Gun'


The Way of the Gun is a movie starring Benicio Del Toro and a damaged clone of Justin Timberlake named Ryan Phillippe. Naw, I'm kidding. Ryan's OK. Really, he does a great job in this movie as a disaffected young man who drops off the radar with his friend and becomes a drifter. He and his hetero (maybe?) life partner seem to live an “On the Road” sort of life without the casual misogyny and alcoholism. They come up with a fairly terrible plan, and violent hijinks ensue.

Parker and Longbaugh's plan and its inevitable violent outcome are not my point. Neither is the fact that James Caan has a super-great cameo as middle management for the mob. This is a movie made in a specific style, an homage to the nihilistic anti-hero epics of the late 20th century. Like Travis Bickle or The Wild Bunch, Parker and Longbaugh are characters who ask for no real sympathy, and frankly, don't deserve much.

However, much of their way of looking at life seems eerily familiar to me, and forced a kind of simpatico with me as I re-watched this movie the other day.

I can only watch horror/crime movies anymore, it seems. Peoples' problems seem so petty in the face of what H. and I went through. “Oh, poor spunky female protagonist of this rom-com. I am filled with sadness that you have to spend the middle third of the movie mad at your one true love because..whatever. Hopefully it will all be resolved by the end...oh good. Phew! Now it's time for the kiss while an Approved Motown SexySong © plays. Cue credits and....Your petty unrealistic problems have been completely resolved.
You know, like how this woman needs to hire a male escort for a wedding
date? Seems legit, “The Wedding Date (2005)”. Tell me more.
There is a natural order. The way things are meant to be. An order that says that the good guys always win. That you die when it's your time, or you have it coming. That the ending is always happy, if only for someone else.”
Ryan Philippe as 'Parker' in 'Way of the Gun'



We all know that this isn't the actual way of the world, but that is the world we all hope for.

I made myself crazy getting ready for my son. Alone, I ripped out all the carpet in our house, refinished the original wood floors by hand, painted and re-plastered the nursery; in short, I went home improvement mad. It didn't help that the previous owners were serious tweakers. People on a real upper kick have all the energy in the world to work on home improvement, and absolutely zero judgment.

I worked with a guy at a grocery store that had an alliterative nickname based on his methiness. We'll call him Tweaker Tim. He came to work one day, and as we were chatting over a cigarette, this happened.

“I installed a toilet in my kitchen last night. Took like 10 hours.” he says casually.

I pause. Think about the sentence. I cautiously say, “You mean, you put a bathroom in your kitchen?”

“No.”, says Tweaker Tim, looking at me with a “What are you, a fucking idiot?” face.

That's where that talk ended.

I fixed so many crazy mistakes, I couldn't even begin to list them in a way that you would or could read. Let's just say the low point was pulling 37 three-inch screws out of my beautiful hardwood floor. The screws were so cheap that they couldn't be removed with a screwdriver; they stripped immediately when any tool was applied. So, I had to lock a pair of Vice-Grips onto each screw, then manually turn them out of the floor. Each one was almost at its full extension, and so it took not a little muscle and sweat. The screws were hot enough from friction when I got them out, they were uncomfortable to hold in your hand. Oh, it was also 85º, because I was doing this in August, and we had no AC. I felt like Tom Hanks in the 'Money Pit', except with more profanity and rage.
Home, Crap, Home.

It was an obvious extension of my fears at becoming a father. I questioned my emotional and psychological stability, my ability to forget the bad lessons of my childhood and remember the good.
At the moment our son was born, he had a massive hemorrhage. The second he came out, the doctor tensely ordered me to cut the cord RIGHT NOW. His arms, head and legs simply...hung. Dangled. Lights out. 
Nobody home. 

Obviously dead. 

Shakily, I cut the cord. I had to take two tries, and on the second, fluid and blood sprayed across me. I was simply numb and staggered by the enormity...and the immediate hot flame of guilt at hiding something from my wife. I knew a vast and terrible secret, seeing him like that. I simply KNEW that I would not leave the hospital with my son, not in anything approximating normality. It was a cellular knowledge, down to the bone. An intimate and nauseating voice, whispering a dire prophecy. After seeing E. simply hanging there, I could not argue with that oily voice. 

Immediately he was whisked over to an incubator, surrounded by what seemed like every doctor in the world. That is when the nightmare image I can't ever get out of my head happened, and I watched a doctor gently massage my first born son back into … well, not entirely life. A cruel approximation of life. After a forever time, myself and all the doctors in the free world went to the NICU (Neonatal Intensive Care Unit). They continued the process of trying to bring my son back to life. The powerlessness and horror can never be put into sufficient words. It knocked a hole clean through me that has never been filled. A parents duty is to protect and nurture their child, and no matter what the facts, I felt like the most useless fucking thing on the planet. I simply stared, hands over my mouth, and tried not to get in the way. 

One of the doctors came to me, as I stared in shock and horror at my first born son dying ten feet away. She asked me kindly if I wanted to keep...a blanket? Something from the delivery? Something. I don't remember it at all. I want to say it was a blanket. I assumed that E. would simply die in front of me, right there. I really, really didn't understand then why I would want to keep ANYTHING from this experience. What should have been the happiest day of my life abruptly turned into the worst. You can't control where the mind goes at times like this, and mine went to Lucy and Charlie Brown. Lucy, stone cold bitch and possible agent of Satan, promising this time would be different, again pulled the football away from Chuck.
AAUGH!, indeed, Charles. AAUGH!



It's the transition that causes the most damage I think. There we were, right at the finish line. We had spent 9 months training ourselves to be better people and parents. Books, cutting edge child rearing websites...anecdotal tips from family. We read everything, did everything. Took childbirth classes, made sure we bought non-allergenic paint, eschewed potentially dangerous products from China. Obsessive reviewed every stroller and cribs safety rating. Made a birth plan, based on our months of study, one that should have maximized our little mans' potential. 

Then, at the second when we cross the finish line, Lucy pulls the football away. Instead of going home with a beautiful baby boy, we spent a week living in the hospital. A time that to me, was like being on a cruise ship taking a tour of hell.

Friday, July 20, 2012

Buffy the Vampire Slayer, oh, and also: What the Fuck, People? An eloquent paean to the sanctity of life.

Joss Whedon, giant manbaby and hit or miss genius behind such great shows as Firefly, Doctor Horrible’s Sing a Long Blog, about 65% of Buffy the Vampire Slayer… and some, uh…other not as great things.

How did you, of all people, fail at acting like an emotionless, mindwiped robot thing? You had it ACED as Faith. Just sayin’.

One of the good things was an episode of Buffy from Season 3 called “Earshot, and another good one was the two part episode from Season 4, "Graduation Day". Though Jonathon was criminally misused in Season 6 of Buffy. (Ugh. The Troika. Worst. Villains. Ever. Adam was the only villain I thought sucked more at his job.) "Earshot" brought Jonathon into full focus, and made you maybe feel a little guilty for not really 'seeing' him before. Let's just say that it looks like he is going to do a Charles Whitman, when he is actually commiting suicide. The Columbine High School massacre occurred one week before 'Earshot' was originally scheduled to air. The WB (sensibly) preempted it with, though they did so with a rerun of "Bad Girls". The second part of "The Graduation" was also delayed due to 'concern over images of violence' All sensible decisions. What is odd is the timing…Joss is a really good writer, and schemer of plots in general. It wasn’t exactly a unique idea, but it was unfortunately timely. Almost prescient. What really sucks about it all now is how common this has become.

I’m trying not to read too much about Aurora. Honestly, the headline of the Onion today pretty much sums it up:


Sadly, Nation Knows Exactly How Colorado Shooting's Aftermath Will Play Out

JULY 20, 2012 | ISSUE 48•29

They nailed it, even down to the inevitable wrath-invoking statement by some shrill propagandist or another. Yeah, we are WAY too familiar with this. But let’s be clear about one thing. Any conversation about this that doesn’t begin with putting aside our political bullshit, and end with a clear goal to re-funding and prioritizing mental health in this country is simply dishonest.

I’m not going to say that there isn’t a valid time and place to have a conversation about firearms. There is. But as a great guy I know presciently said, “You know those guns were legally purchased, so it kind of takes that off the table.” They likely were. The shooter is an intelligent person. . If the fragmented, chaotic, horrible reports can be believed, he had a degree in neuroscience.  You don’t just crap out a degree in neuroscience with one hand in the funyuns and the other on the tv remote. Or your junk So he would have been more than smart enough to make this event a bomb...or mustard gas...the method doesn't matter right now. The madness does.

What's important is…there are more than 12 dead and 59 wounded. Every person in the theater was wounded as well. Deeply. The first responders as well.

 CLACKITY CLACK! HERE COMES A GREAT ONE!-My Mind

Every person at that scene is hurt forever by this. A single frame of time…a quick reel on the old mind projector of a few seconds of hell. There are moments you can never unsee. They float up at you, unbidden. Mine is a pair of gloved hands sliding over my son’s chest, coaxing him back to life. Every wounded and dead person is surrounded by a net of other people, who right now are sobbing for them. Worrying for them. Waiting tensely in cramped rooms...giving blood…hoping…praying. In a real sense, it is the connected world that Buddhists speak of. Or the Force, if you swing that way. Or both, if you can unlearn the prequel movies.

“ It's an energy field created by all living things. It surrounds us and penetrates us; it binds the galaxy together."

But seriously, we have to un-fuck our methods of treating mental illness. All of those people are mentally injured right now. We have to separate prison and mental health facilities, and set clear goals for each. But more than anything, we need to re-think our priorities on the subject of mental health, and destigmatize it. Even our military vets are discouraged by a culture of shame attached to mental health, and our recent wars have been some of the worst in PTSD rates and suicide.


This is as good a time as any to put our swords and cynicism aside, stop shitting on each other for political or religious reasons, and stand together as Americans, god damn it. How 'bout from here out, we all stop saying what sucks about the other guy, and just offer some solutions? Start with mental health. Let's talk about guns when everyone isn't so upset, k?

The Killing Joke, The Uncanny X-Men #234, and Why I’m Agnostic, Not Atheist, Part II


The Joker illustrates his point to Jim Gordon, from atop the super creepy baby throne.
(All images copyright DC comics)



It was right there, all the time. This idea. That letting go completely would be so comforting. It's hard.

H. and I are people of no particular faith. I can absolutely see the comfort it gives. I really can. I envy it. People like H. and I navigate life by trying to do the right thing, and trying to reach together a definition of the right thing.

This idea. That letting go completely would be so comforting.Maybe catatonia, maybe just some sort of screaming fit and into the huggy jacket.Which takes me to my point, I guess.
"Very well. Shall I show you to your room, or would you prefer to be dragged off kicking and screaming?"

"Ooh, kicking and screaming please!"


I hear religious folks say things about atheists or those of no particular faith, and one that really confuses me has to do with responsibility.

"Wow, if you don't have God, what keeps you from just doing whatever you want all the time?"

This one is a real stumper for me. Not that I don't have answers for it; the answers are like Three Stooges trying to fit through a one-Stooge door at once. I get stumped on which direction to go with it. I try to not go the, "Holy shit, you just told me that only the thought that God is watching you constantly keeps you from harvesting my organs for sausage!" direction. I try to steer towards the other direction.

I have to live with everything I do, as does H. We can't just assign failures to "it wasn't God's will" or "it just wasn't meant to be". H. and I did everything we could at every step, made intricate well informed plans...and they swirled into chaos at the moment my son was born, and then it was the two of us in the trenches again. Everything seeming to hinge on our decisions...endless quiet conversations in muffled rooms. We navigated a beige maze of sad faces; watching smiles slide off peoples' faces and get replaced with the semi-smile/tragi-comic mask that says "How you holdin' up?" just before the person actually does. It's a bizarre space to live in, and big chunks of it are already lost to me; the stress of watching my son live through tubes and fight so hard for a week; the up and downs and alarms. It's a situation that can give you a form of PTSD; it's why they call it Post-Traumatic Stress Disorder. H. and I used to jerk awake on the edge of sleep; constantly worried an alarm was going off...that the phone was ringing and we needed to go.

So when the worst thing ever happened, I thought of Jim Gordon. Tortured, on the edge of madness. Has seen something truly terrible happen to his daughter, and I could soooooo relate. Right there, at the edge of my dazed vision, was the Joker, singing.



Go Loony! Lyrics by Alan Moore (taken from "the Killing Joke").


"When the world is full of care

And every headline screams despair,
All is rape, starvation, war and life is vile

Then there's a certain thing I do
Which I shall pass along to you,
That's always guaranteed to make me smile:

I go loo-oo-oony as a light-bulb battered bug!
Simply loo-oo-oony, sometimes foam and chew the rug!

Mister, life is swell
In a padded cell,
It'll chase those blues away:
You can trade your gloom
For a rubber room
And injections twice a day!

Just go loo-oo-oony like an acid casualty,
Or a moo-oo-oonie, or a preacher on T.V.

When the human race Wears an anxious face,
When the bomb hangs overhead,
When your kid turns blue,
It won't worry you,
You can smile and nod instead.
When you're loo-oo-oony, then you just don't give a fig,
Man's so pu-uu-uny, and the universe so big!
If you hurt inside,
Get certified,
And if life should treat you bad,
Don't get ee-ee-eeven, get mad!!"


So, I guess my answer is I learned it from things like comic books, and movies, and books, and life. From examples like Jim Gordon. Who wouldn't back down, who wouldn't break. Who ordered Batman to capture the Joker alive, even after everything he did.

"We have to show him that our way works."

So H. and I walked the walk. We tried as hard as we could to make the entire thing as positive as we could. We held our son, and sang to him. We read books to him. We spent his whole life living at the hospital, in a nightmare of whispers; surrounded by quiet, sad faces and alarms. When he passed, we tried to make the most of that,  too.

Wednesday, July 18, 2012

The Killing Joke, The Uncanny X-Men #234, and Why I’m Agnostic, Not Atheist

I decided that to help myself process my son’s short life, I am going to try to journal a little bit about what H. and I went through. I don’t know if it will help or not, but at the very least, I can open the door for people a bit, and talk about how it feels.

Of course, since you reading this are most likely to be someone I actually know, I don’t have to ask people to refrain from posting disagreeable or proselytizing comments. How awkward, that seems to be what I just did. Look, this is the internet, where it’s hard to sense tone, so it may not be apparent to us that you are being ironic or just kidding. Furthermore, I am nothing if not frank and somewhat vulgar. I may swear. I’ll try not to go full George Carlin, but it was an extreme situation. I will likely use some extreme language.

Issue #234 of the Uncanny X-Men wasn’t that remarkable. What it had going for it that fired my teenage imagination was the side plot about a character who traveled a metaphysical desert, and in that desert, was purified, “forged” into a new being. As a chubby, nerdy, not-exactly socially adept young man, this idea came back to me over and over again. I wanted to find a magical metaphysical desert to burn away my fat and insecurities and bullshit, and emerge as a lean sword. Hells yeah! Oh, and also Wolverine’s healing factor finally repelled the Brood infection, settling a nasty argument and leading to a satisfying series of panels where he “SNIKTS” somebody.

The Killing Joke written by Alan Moore (and colored/inked by an amazing team as well, but they aren’t my point right now) is a dark, angry work. A work that to me was written by a man who knew the shape of pain; he had tested the dimensions of some vast loss the way you probe the gap where a tooth was. But to me it’s a righteous anger, not the cheap anger we throw at each other over the internet about trivialities. Alan Moore has disavowed it, and reportedly hates that it was made into canon. That sucks, because it is amazing.



Without spoiling it if you haven’t read it, it revolves around the Joker, and his attempt to drive Commissioner Gordon insane. The Joker wants to prove that his murderous insanity isn’t his fault, that any man could go mad after one bad day, one terrible thing. To try to prove this point, he does a horrible thing to someone closely related to Gordon, right in front of him. Then the Joker kidnaps him to a super-creepy carnival and … well, let’s say the Joker sings a creepily wonderful song about how comfortable it would be to simply let go, and give in to madness and nihilism, as the Joker has.

Aside from the compelling art and story, the most striking part of this short graphic novel to me is Gordon’s response when Batman arrives to save him. Stripped of his dignity, tortured both physically and mentally, he still holds to his values, telling Batman that he mustn’t kill the Joker. Gordon says emphatically –

“We have to show him that our way works.”

This was one of the things that I thought about over and over again during the time we spent at the hospital, waiting for answers…for a resolution. That H. and I had an obligation to show people that “our way works”, that even in the face of the worst thing ever, you can look to your values and your friends and family and practice what you preach. So we did our best to let go of much of the hot blinding anger; anger we could only direct at what the Joker calls “life, and all its random acts of injustice.” I would just try to be the father, the man my son deserved to have. My wife and I took the shittiest hand anyone can be dealt, and bluffed a way to a fragile sort of victory. We are still trying to turn as many of those cards over as we can. That time in the hospital became a "forge" for me, a place that burned away some impurities, left me with less time to be angry.

So the first thing I want to talk about happened the first night. As soon as H. found out she had gestational diabetes, she cut her sugar intake drastically. Out of limits: a Dr. Pepper, specifically one from Sonic. Sonic has this tiny ice…it’s like hail pellets; or third-rate Slurpee imitator ‘Slush Puppies’, often found in rural quik-e-marts. That’s what she wanted. I promised her all throughout that hot summer when she was pregnant that as soon as possible after she had elliot that she would get her specific doctor Pepper beverage.

So I’m going to skip over the long pitocin-exacerbated labor (24 hours, ish) while H. was in tremendous pain. I’m going to skip the last rush of his birth, where I went so quickly from the happiest moment of my life to abject horror…seeing him so limp and lifeless…so obviously in trouble. I will just say briefly it was like something from one of those old EC Comics…the last panel showing the horrible thing descending on the hapless couple…not so safe after all.


It had that level of horror. Pure animal terror, a base biological dread. The coalescing of months of worry and labor and paranoia into the cold certainty that the deck is stacked after all… Wait. I was skipping this. OK. Screw it. One more, then our feature presentation; watching a doctor bring my baby back to life. The image that always comes up is her gloved hands sliding over his tiny chest. That’s the thing that makes the smile slide off my face, sometimes in mid-sentence. I think I’m going to see that forever. But…after that…
I leave the hospital with my good friend, one of our best. We go to get the requisite Sonic beverage. How could I leave, you might ask. Well, I have to tell you. I have always had a dreadful fear of hospitals. Maybe it’s because I have visited the dead or dying there at a 5:1 ratio of living people. Maybe it’s because they smell weird. That, and frankly I needed to have a stiff drink. Sucks to drink such decent Scotch at such a shitty time, but meh. I also smoked one cigarette. I hadn’t smoked in years, but cigarettes and crisis go hand in sweaty hand. Also, you don’t get to judge our actions in the wake of this. No one gets to.

So it’s after nine when I get back, so that means that I have to walk in through the emergency room, and then cross the skybridge to get across to the other side. I’m almost all the way across, wearily carrying this tray of requisite Sonic beverages. I’d slept about 4 hours out of the last forty, so I have to tell you, I felt pretty low.

That was when the doctor approached me. She was waving her hands, and asking a question that I heard as “Sir? Sir? Are you here with Elliot?”

Because I’m so witty and smart and quick thinking, I say: “What? Elliot?” My son, last seen hooked up to a full intensive care set up. Which, in case you were curious, have the world’s most ball-clenching suite of alarm sounds.

So she smiles really wide and says, “Yes. Oh, good. He made a complete recovery!”

Against all my better judgment, I buy in. All the way. It could happen, I think. I start to smile. Start to carefully set the tray of drinks down.

That’s when the slender, meek woman waiting at the end of the skybridge gets the doctors attention with, “Ma’am, I’m with Elias.”

Elias.

Sounds like L-E-S, when she says it.

Elias. Of course. Not Elliot.

I stop smiling slowly as the doctor consults…her phone? A clipboard? Harvey the rabbit? The Great Gazoo? I really couldn’t tell you. I was busy getting the spins and very cautiously completing the ‘set the tray of drinks on one of the little tables’ manuever.

The doctor mumbles something I’m reasonably sure was, “I’m so sorry.” She hustles over to ELIAS’ … mother? Cousin? Who cares. I’m happy for Elias and all, but also…

Really? The long string of things that had to occur, just so that could happen to me? I can’t win the lottery, but fate can conspire to make literally the only two people I see before entering Hyla’s room….those people? At that time? See, it’s that sort of thing right there. It does look like there is a hand on the tiller. Just not a very nice one.

So that’s a five minute slice of what happened. That’s why I would say agnostic, not atheist. I could believe in a god, but the god I have seen the most of is a sort of cosmic Nelson Muntz, saying “Ha-ha!” about a broken leg. Or an eternal Lucy Van Pelt, always saying she would keep the football steady.

In many ways, I think in a terrible fashion living with this has been beneficial, it stripped me of a great deal of shallow cynicism, while curiously renewing my faith in humanity. It was a Forge event, a time when I passed through a fiery desert and was purified in a sense.

One thing. People made this tragedy into a miracle. Science, medicine, technology, compassion, family and friends. Doctors flew here in airplanes, guided by radar and satellites, to save my son’s organs and take them in more planes and cars that run on dinosaur bones that somebody piped out of the ground. People came together, and together we wrung every thing we could from it. We allowed religion to take the role in things that my parents wanted, and it didn’t hurt a thing. It’s sad that it takes something like this happening, but I can really tell you I have striven to learn from it.

Sunday, May 13, 2012

mother's day

Today has been really hard. These last 7 months have been really hard. I am a mother and I miss my baby boy so much. Today and every day. For the rest of my life I will miss Elliot.

I think Angela from the Little Bird blog said it best:

"For the women who have lost children, Mother's Day simply becomes another holiday to smile through for the sake of others, a day to stay home from church because of the inevitable baby dedication, to avoid all stores, but especially flower shops and restaurants; a day to retreat within ourselves and think about the little hands that should be reaching for us, the voices we'll never know saying "Mama," and "I love you."

It is impossible to think of a gift we want, because what we truly desire we cannot have: one more minute, one more kiss, a little more time with the ones we lost."

Credit to Angela Rodman, http://angelarodman.blogspot.com/2011/05/on-mothers-day.html

Sunday, May 6, 2012

Bereaved Mother's Day


Yep. How sad is that? Apparently the first Sunday in May is International Bereaved Mother's Day. I suppose it's nice to have recognition that I am still a mom, but it's very bittersweet. I would much rather be oblivious to all this and be celebrating my first mother's day with my 7 month old. It's hard not to imagine what E would be doing now. How would he look now? Would he look more like me or more like his daddy? Would he be sleeping through the night? Would he be a fussy baby? So many questions that will never be answered. Happy Bereaved Mother's Day to me and to anyone else unlucky enough to be a member of this terrible club.

http://carlymarieprojectheal.com/2012/05/international-bereaved-mothers-day.html

Friday, April 20, 2012

Life outside the window

One of the nicest things anyone in the hospital did for us happened when we were on our trip back to the NICU from taking E for the blood flow scan. We were waiting for an elevator and there was a big window. K, the nurse practitioner, stopped us (the respiratory therapist, A, me and E in his traveling isolet) and pushed E over to the window, then described to him in detail the view from the window. The crisp fall day, leaves starting to fall, green grass, blue sky, trees blowing in the breeze. She knew he was never going to see the outside world, she knew he was brain dead, but she still took the time to treat him like any other child. To be sweet to him and to us.

An Introduction

Hi. We're H. (me) and A. (my hubby). We are bereaved parents. Or baby loss parents. Our lives forever changed the day our son was born.

A. and I have been together for 10 years, married for 5. We waited awhile to start a family. At the end of 2010 we were kinda-sorta-not-really trying and I got my BFP on February 4, 2011. We were excited and terrified. A. works at our local book store, so his first job was to stock up on the usual "What to Expect" books. We are a tad superstitious, so we waited until after the first doctor visit to tell our families and best friends, then until after the 12 week mark to tell everyone else. Everyone was so excited for us. When you're in a committed relationship for 10 years, you get used to people asking you when you're going to start making babies.

We have a tiny, old house, so A. went to work redoing the house to make it baby friendly. The office became the nursery. Carpet was pulled up, hardwood was refinished. Walls were painted. I got busy researching and buying the crib, changing table, stroller, car seat, clothes, etc.

Toward the end of the pregnancy we got nervous. A. was hurriedly getting the house ready. I was nesting and getting the nursery ready. Were we ready to be parents?

After a fairly typical first pregnancy (gestational diabetes, but well controlled with diet alone), I was induced at 40 weeks +2 days due to low amniotic fluid. Baby and I both tolerated the Pitocin well and I labored for about 36 hours. Our son E. was born on October 12, 2011. He came out limp and didn't take a breath. They suctioned him, then had to resuscitate him and he was rushed to the NICU.

After many tests and procedures it was determined that he had a massive brain hemorrhage sometime before or during his birth. It was too much for him to recover from and he was pronounced brain dead on October 18. We kept him on life support for another 36 hours while organ recipients were located and our sweet baby E. became a hero on October 20. His heart is beating in another infant's body now and that gives us a lot of comfort.

Post mortem testing has determined that his umbilical cord might have been pinched sometime during the last few days of my pregnancy and/or during delivery and he was suffering from a lack of oxygen which led to the brain hemorrhage. Probably a cord accident. Or possibly a stroke. We had a perfectly healthy baby boy, and he died before he could ever live.