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the unfortunate departure of billy the kid

“So, shall we talk about Liam now?” he says casually.

“Sure,” I reply, standing at the counter in the physio room, mixing lunch for Ben.

“When I cut into the brain…” he begins.

And I’m thinking WOAH. Slow down there, cowboy. A preamble would be nice. A ‘Before I get into details, I want you to know we did the right thing’ would be nice.

I look at his hands as the words When I cut… reverberate through the room.

“…it became clear that there wasn’t much left,” he continues. “It was just gone, huge chunks of it. Much of it was just an outer film, empty on the inside. We still don’t know if it was the bleed, or the oxygen deprivation at birth, or the hydrocephalus—but what brain was there was highly compromised (translation: mush), and the rest of what should have been there… wasn’t.”

Standing before him as he discusses the autopsy of my son, I recall this same doctor marvelling at the birth of neonatology at Coney Island, a medical sideshow of FETUSES OUTSIDE THE WOMB! and it comes back to me, what it was like to talk to these doctors.

Your baby makes for an interesting day at work. As a ski patroller Justin would come home invigorated at having evacuated the woman who snowboarded into a tree and literally left half her face and part of her jaw stuck to the cedar bark. Horrible for her, but (looks over both shoulders) totally COOL.

This is the wild west, and your baby is Billy the Kid. There is very little in the way of prognosis or explanation, but plenty of “Hey! Look at that. Geez. Let’s try… eeeny meany miney mo… THIS STUFF, and see what happens.” as they add chemical goo #43-161 to his central line.

This doctor in particular is as human as he can be. But like the rest of his kind he must be evasive, preemies being all about speculation and speculation being all about unscientific guesswork. Which leaves them sympathetic but muzzled in the face of desperate parents who sob please tell us everything will be alright despite every indication that no, everything will not be alright.

Standing there with a bowl of pureed carrot in my hand I remembered that resignation, the realization that my child amounted to a freak show, a curiosity with applause and collective gasps, and now dissection.

With words like that crackling in the air I try to remember that I love him still, that there is such a thing as souls, that he didn't need that worn out shell, that he doesn't hurt anymore.

He was so beautiful.

+++++++++

At eleven months old, Benjamin Button sits steadfastly at the 3rd percentile for weight. 97% of all eight-month-old babies (his adjusted age) are bigger than him. Try adding butter to his cereal, suggests the nutritionist, and I laugh and ask her if she’s serious.

Teensy in weight, not bad in height (25th percentile) and a surefire Pulitzer Prize winner in head circumference (95th percentile). And through two hours of developmental testing he and his big, shiny blues knocked it out of the park.

+++++++++

I look at Ben and imagine him with half his brain missing, wheelchair-bound and blind and seizing and wearing a diaper all his life and never speaking and my heart blows a fuse, and everything just shuts down.

Every time I think of Liam, the first thing that I speak, aloud or in-mind, is I’m sorry. I’m sorry my body did this to you. I’m sorry I couldn’t keep you safe. I’m so sorry. My Liam and my guilt are forever bound.

I almost never voice this in conversation with loved ones because it’s too frustrating for them. Why do you torture yourself? It wasn’t your fault. Don’t be ridiculous they say, because they love me, and it hurts them to see, as they see it, me choosing to hurt myself.

My head knows it’s ridiculous, of course, and knows the TTTS was a random sniper. But my heart still craves the torture.

I was going to write that when your body betrays your baby the result is the world’s most intense mind-fuck — but I’ve changed my mind. Your body’s betrayal of your baby is the world’s most intense heart-fuck.

Love and apology, forever bound.

 

Posted on Wednesday, April 2, 2008 by Registered Commentersweetsalty kate in | Comments69 Comments

Reader Comments (69)

Your raw post is beautiful. I 'get' the heart-fuck.
April 2, 2008 | Unregistered CommenterJoanne
last night my therapist told me that we all have what's called a pain body that clouds us and provides a dense layer of hurt between us and the rest of the world. everyone's is fueled by something different but it craves more pain, more hurt, more guilt. and so we feed it, and so the cycle continues.

and it seems like a choice -- to those who surround you -- that you give strength to this pain. but you're not ridiculous, you're just a mother who lost a piece of herself.







April 2, 2008 | Unregistered CommenterAshley
They are both perfect. You failed no one. But the guilt will take a long time to burn off.

A lot of people won't get that, but I do.
April 2, 2008 | Unregistered Commenterthordora
There is such a thing as a soul. Fully functioning body not required.



April 2, 2008 | Unregistered CommenterGillian
God bless big headed boys and big hearted women like you. And don't stop believing for a millisecond about the soul. It's there. It's real.
April 2, 2008 | Unregistered Commenterm
Wow. I don't have anything wise to add, I'm afraid, but I do want to thank you for sharing what's in your heart and mind with us, your readers. Powerful, beautiful, heartbreaking, all of it.

xo
April 2, 2008 | Unregistered Commenterkate
You are so open with both your joys and your pain. I hope I can be that way too. *HUGS*
April 2, 2008 | Unregistered CommenterLuAnn
I am so sorry, Liam. I am so sorry, Kate.

He was so beautiful.
April 2, 2008 | Unregistered CommenterYatima
Wow. I just cried. Wow.
April 2, 2008 | Unregistered Commenterjen
Just lost my comment. It was inadequate anyway. Wishing you peace.
April 2, 2008 | Unregistered CommenterHannah
Kate I am so sorry you feel this guilt.

As for the doctors, I had this conversation with a social worker this morning. While I get the whole 'wow cool' factor of a medical case, there needs to be a lot more sensitivity towards the person and the parents.

Liam is indeed a beautiful soul.
April 2, 2008 | Unregistered CommenterLisa b
i know that by know means does my pain compare to your pain, but if it's any consulation, my counselor told me that eventually your heart will catch up to your mind. thank you for sharing such raw emotion. it is so healing.
April 2, 2008 | Unregistered Commenterleigh
I'm so sorry that you had to hear that. What terrible words. I hope some doctors read your post and gain some sensitivity, if they are lacking it. And yes, of course, he has a soul, a very special, perfect soul that loves you very much.
April 2, 2008 | Unregistered CommenterJulie
Your bodhi-baby needs no apology. He knows. He understands. He loves. Maybe he'll even help you get through the self infliction of pain one day and make it to the other side where there's no blame or guilt, if that's possible. My heart is with you, Kate. Thank you for sharing this intimate story. I know many benefit because of this place.
April 2, 2008 | Unregistered CommenterMNkathy
Kate, big big hugs. My heart breaks to read this. NO, Liam was not a freak show... I know what you are thinking I have all kinds of visions in my head and a lot of contorted images and ideas of how others think. But heck, others are others; he IS beautiful, everything about him. You are right, he does not hurt, and he did not need that shell. If you get to talk, Liam is going to tell you, "No sorries, Mom. No need for that. Thank you for cradling me in you for as long as you could, for holding me, for loving me. That was just plain awesome. I needed that fuel before I go to my next stop. We will meet again. No sorries. Big love, Mom!"

April 2, 2008 | Unregistered Commenterjanis
So much for you to take in, Kate. So so much for your heart.Know that Liam and his incredible journey there and here and there again has knit together the hearts of so many - all of these reads of yours and everyone with whom they share his story. And can you imagine, if you pinned that HUGE strung-together heart on a wall how powerful and large and beautiful it would be? And all because of him! Because of you.That is the image I see in my minds eye when I think of Liam and when I think of you.It struck me, your title "Billy the Kid", because I know that Liam is a form of William...and Billy a form of that. :)xoxoLeigh
April 2, 2008 | Unregistered CommenterMereMortal
This plain took away my breath. I have nothing to say that hasn't already been said, but I sure wish I did.
April 2, 2008 | Unregistered CommenterAlly
All I want to say is you have a beautiful heart and mind.
April 2, 2008 | Unregistered Commenterandrea
As usual, Kate, anything that I say would be just inadequate.In two hours we will have our 36 week ultrasound and I am trying to only think good thoughts and believe that everything is still going well. And even though my heart ACHES for you, I am sending you only my good thoughts. A big hug sent across this continent.One last thing: He does have a soul and it is with you always, protecting you and his daddy and brothers.Thank you for always sharing. And thank you for helping me to remember to be grateful ... when my body is swollen and tired, when my ligaments hurt, when my toddler is on my last nerve ... I am grateful. (I hope that came across the right way.)
April 2, 2008 | Unregistered Commentertanya
I think a little preamble would have been fitting, yes. I'm sorry for your pain.
April 2, 2008 | Unregistered Commenterjanet
How I wish there was a way to remove this kind of ache. Again, your words pierce and his spirit shines. I am so sorry.
April 2, 2008 | Unregistered Commenteramanda
I understand. Not because I think you should feel the guilt but because I'm sure I would too. We're mothers. It's what we do. Love so intense it spills over and has to find other forms to take - admiration, hope, fear, and sometimes guilt. But it all comes from the love.

Sending you a hug, Kate.
April 2, 2008 | Unregistered CommenterKaren
Ooof. That is a big smack in your face, to have it all worded that way.

I just want to hug you
April 2, 2008 | Unregistered Commenterflutter
On some level, I understand and know how you feel. Our daughter has what most people call a catastrophic seizure disorder that could very well leave her with a severe form of epilepsy and/or a severe form of retardation. And there isn't a day that goes by that I don't look at her and wonder if there was something I did wrong. It's heart-stopping and I have to catch my breath. While my head knows it's not my fault, my heart doesn't believe it.

Thank you for sharing with us!
April 2, 2008 | Unregistered CommenterAndi
What a lot you have been through. And how amazing you are to share it, share Liam, with us.
April 2, 2008 | Unregistered CommenterSheila
Guilt is a mother's life long sentence to serve out for the crime of conception. No matter how big or small the incident or whether you had any control of it. It is how we are made. It is what makes us such fierce protectors of our young. We feel two-fold whatever they feel and we carry the pain twice as long. It was a beautiful post by a mother with a beautiful heart.
April 2, 2008 | Unregistered CommenterSomeone Being Me
kate. this was telling, so beautifully honest of what you're experiencing and i thank you for it.

liam was yours, just as he was supposed to be ... and by no wrongdoing of yours, or anyones. he is a very special boy.

love to you.
April 2, 2008 | Unregistered Commentererin
Kate: All that is sensory overload for your heart and soul. You Mama, you've been through so much, and this news is heavy, and it might feel like it changes something momentarily, but it changes nothing. He was your boy, and he felt you and loved you and you him and you will always be his mama. I can imagine the weight of that conversation. I can imagine how your head spins as you watch ben grow up and into a little boy yet hold onto the memories you have of Liam, held in time at six weeks of age. Heart-fuck, indeed. I'm still so sorry for it all, but I am relieved that at the end of the rope, you find strength in the beauty of your life, in Liam's memory. This was such a feeling post. Thanks, Kate.
April 2, 2008 | Unregistered CommenterJo
My baby's brain was also liquid. And I too see that glimmer when I look into the doctor's eyes: This is going to be a killer paper. I can't wait to present this at a conference. (which they did, twice, to multiple listeners, who I'm sure eagerly sucked up every minute detail). And I would not be remotely surprised to see Maddy make some sort of appearance on House (of course, they'd have to work sex in somewhere). And it's horrible to think your baby -- YOUR BABY! -- is someone else's mental gymnastic workout.

There is guilt. guilt I ever even wanted a second. Guilty I thought I should get pregnant again. And then guilt from then on. Guilt that she's alone now, in whatever form, even ashes on the shelf. And it not only fucked my brain and heart, but my foot, gut, memory, vocabulary . . .
April 2, 2008 | Unregistered Commentertash
I gave birth to my still baby girl on a Saturday morning. On Monday morning a woman called from the hospital to ask me if we wanted "the head" included in the autopsy. That's all, no sympathetic words for my loss, just that cold, cold question. That was 20 months ago and it still makes me sick to my stomach. So I guess I'm just saying I sort of understand your pain, and I'm so sorry you are suffering.
April 2, 2008 | Unregistered Commenterkate
At the risk of sounding insensitive- I love that you write things like this. I don't love that you are feeling pain, and guilt, but I am in awe of your honesty. You manage to say things that I have felt but never say out loud or even on my blog. I don't say them because I don't want to worry those who love me, or to hear from strangers how I need to "let it go" or "stop beating myself up." The truth is I don't beat myself up over it- but I still feel the guilt. Like you said so beautifully, guilt and my twins will forever be intertwined for me.

I understand, and I'm sorry. I know he was beautiful and he was ever so much more than his poor little body. He still is.
April 2, 2008 | Unregistered CommenterLori
I don't know what to say except I am so sorry for your loss. I hope at some point you can find more peace and less guilt.
April 2, 2008 | Unregistered CommenterGwen
Oh god, Kate. As many doctors as there are in this world, they should all go through bedside screening before being allowed to practice. They are human, but they are supposed to fix not only the human brain but salve the human heart, as well.

I'm so sorry.
April 2, 2008 | Unregistered Commentersteph
Kate, you write what I feel/felt. Our William died almost 6 years ago...he also suffered massive brain damage, but as a result of a congential cardiac defect that left his body oxygen deprived. And at 10 days old, we also had to make the decision to remove medical support. Guilt has been with me since that day. I just read a book recently and gleaned something that I hope will ease the guilt. The author stated that no matter what decision we made, there would have been guilt. Had we continued with medical support, today he may be here, blind, seizing, fed by tube, not knowing who we are, in a wheelchair, basically just existing...and I would feel guilty about making the decision to allow him to just exist. So I'm thinking, if I was going to feel guilty with either decision we had to make, then maybe I don't need to feel so much guilt anymore. Does this make sense?

Thank you for sharing your stories, and your Liam. You are an amazingly strong woman, and I know Liam is proud to call you his Mama.
April 2, 2008 | Unregistered Commenterthreeboysmama
That was so honest and moving. I totally get the "heartfuck" and the guilt. I am so sorry. Those words are so inadequate, but they are all I have.
April 2, 2008 | Unregistered CommenterCLC
At work, I'm a nurse in CT, when we see something awful inside of a patient, a tumor, or a bleed or a massive aortic dissection, it's seen as something separate from the patient because otherwise all the awful things we see would break our hearts. It doesn't make it right, it's what we do to survive.

I'd love to be able to find the words that would comfort you, words that would ease the pain and the guilt but I have no idea of how to do that. I'm sorry.
April 2, 2008 | Unregistered Commenterdeb
I know, deb, I understand. Specimens are easier to discuss than sons. As a nurse you don't necessarily need words.. you speak through caring, through your actions. Thank you for that.





April 2, 2008 | Unregistered Commentersweetsalty kate
Liam will always be your boy, no matter where he is. In your thoughts, in your mind, in your heart and reflected in his twin brother...he knows you love him, and you can't ever be sorry about that. A mama's love reaches across all realms, and he will be yours forever.

With Love,Lisa
April 2, 2008 | Unregistered CommenterLisa
I found my way to your site and was struck by your strength and words. As a mother, I can only try to understand the depths of what you are feeling and going through. Your words are so much better. "Heartfuck" really resonated.

Sending a hello and a hug.
April 2, 2008 | Unregistered Commenterwestcoastmom
there are no words....my little Scott is apparently a medical mystery too..a one in a million thing that they haven't QUITE figured out yet....just a oh well.

Talk about our bodies fucking up....letting down these little guys.

Sorry Liam.Sorry Scott....life and death seem so unfair.
April 2, 2008 | Unregistered Commentercrunchycarpets
I understand the guilt feelings. When pregnant, every mother feels completely responsible for the development of the being inside. Truth be told, there are only so many pieces we can control, and the rest is affected by a variety of other things out of our realm. But parsing out which is what is impossible, so we feel the weight of responsibility for it all.A lot of things can be true and exist at one time, Kate. You're capable, you're smart and sexy and funny and compassionate situationally. You're also torn open wide and raw and mourning and introspective and terrified and horrified and guilty simultaneously. It doesn't matter the source, you're right. It's just part of this business of walking on the earth, going through the gamut of stuff we are to go through while here. Of course we do not "wish" this kind of experience on anyone, and it feels injust and wrong, it is what it is. Unmoveable, unchangeable, and unfolding as it should. Our perspective on it is our reality, and I see it whirling from this to that to the other in time, all as it should. What is remarkable and uncommon in you is that your heart, mind, and soul are open to experiencing all of the different facets of it. Working through them, letting them wash over you. Afraid, yet unafraid. Some people shove it all in a theoretical compartment inside and don't take it out again. What's the point of that? Live it, learn about God/Nature/Life/Yourself from it. It's all learning and experience and it is all valuable, without the value judgment on it, if that makes sense. Sorry for the rambling comment. Thank you for the honest post.
April 3, 2008 | Unregistered CommenterTrasi
I think I've read your post fifteen times. Each time a new ache emerges in my heart. It's such an honor to be present for and read about your grief, but it also feels so voyeuristic for me. I cannot know what you are feeling; I cannot truly understand your words.

But I keep reading because your humanity grounds me to the world.
April 3, 2008 | Unregistered CommenterEllen
*hugs*
April 3, 2008 | Unregistered CommenterAmy
full of tears, sending love.
April 3, 2008 | Unregistered CommenterBon
Monday is the fourth anniversary of my own mind/heart fuck. My guilt is compounded by the fact that I conceived a wonderful, beautiful son right around the time she would have been born. I feel guilty because she is gone, guilty because I love my son so much, guilty because she had to leave us for him to be born.Your words are much more eloquent than mine. You keep Liam's memory with us all every time you write about him. That is good.
April 3, 2008 | Unregistered CommenterRory
ok WHYYYYY would he say that?! I know you are supposed to be reviewing it but gEEZ!
April 3, 2008 | Unregistered CommenterRachael
Oh god, what a punch in the gut that must have been, to have the conversation start like that. I'm not sure a preamble would've helped much under the circumstances, but still.

Much love and hugs to you, you did everything you could and you gave him so much love, and that's all anyone can ever do. I understand the guilt - we all have it even for minor things out of our control (a cavity, a scraped knee) - so I can only begin to comprehend it at this level. Absolutely crippling at times, I imagine. Another beautiful, moving piece of writing.
April 3, 2008 | Unregistered CommenterJen H.
Reading the words "cut into his brain" was bad enough. I can't imagine hearing them especially in reference to my son. I'm so sorry you are hurting, Kate. You are in my thoughts and prayers.



April 3, 2008 | Unregistered Commenterashley in sc
I'm sorry, that sounds very hard. It reminded me of something I read in Sun Magazine (my favorite!) and part of it is on their website. Stories for an Unborn Son http://www.thesunmagazine.org/issues/388/stories_for_an_unborn_son(sorry it wouldn't let me do a link)
April 3, 2008 | Unregistered Commenterapril
A heart wrenching post Kate. As Mothers, we feel guilt for everything Even though we know logically, it is not rational for us to blame ourselves, in the heart, it is a different matter.

Glad to hear that Mr. Ben is coming along so well....tiny but mighty! I am sure Liam is right there watching over him, and all of you.



April 3, 2008 | Unregistered CommenterTara-Lynn

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