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In the absence of a poker face

It’s been a train wreck of a day. The wreck didn't happen to me, though. I am the wreck. I happen to others.

I burst out crying when it’s most inconvenient for whomever I’m with. I’m calm when it makes no sense to be calm, and I’m a mess when it makes no sense to be a mess.

But please, please world: give me the space for that to be okay.

Just know that I’m not like this all the time. I change the diaper of my two-pound son. I screw it up and get poop on the bed, which is a pain in the ass for the nurses, but I’m in there, sleeves rolled up, trying. I’m told that this soon, most parents are too afraid. I may cry all the way home but I when I am with them, I am there.

I’m so raw. I feel judged and vulnerable and claustrophobic and illogical. I’ve moved from shellshock and denial to anger, resentment towards every other person walking the streets who, compared to the complete shit luck of our lives right now, must certainly have it easy.

I’m proud of myself. I’m embarrassed of myself. I’m fiercely protective of how I’m facing this, but ashamed of it too. I am drowning in guilt, so much guilt I can’t see straight. That I couldn’t keep them safe. That I’m distracted from Evan. That I resented them for being two. That we’re burdening our families. That I burden Justin. That last thing I want right now is for him to have to worry about the boys and me.

I want a pill.

I want everyone who says I need a pill to fuck right off.

I want to be one of Oprah-saints who says she loves her children just as they are and really means it. I want to love my children no matter what. But now, having learned that it’s not a matter of if Liam has brain damage but a matter of how that assured damage will manifest itself, I’m pissed. I’m just plain pissed. I want him to ski at Sugarloaf with us, and get black and blue from sailing, and have girlfriends. I want him to be 'normal', selfish for both me and him.

Then I loathe myself for putting conditions on my son when he's giving this everything he's got.

I grieve all the normal he’s lost. In time I’ll be able to see what he has more than what he doesn’t have. But right now, my boots are stuck in loss-mud and I haven’t got up the nerve to pull out my sock foot and step forward, leaving the boot behind.

He has a grade four bleed on his brain, the worst. So what does that mean? we asked today — something of a pointless question since the answer gives us no course of action.

The doctor says: from the location, it will be motor skills that are affected, not mental capacity. It may be like some form of cerebral palsy, anything from barely perceptible clumsiness to a wheelchair. We have no way of knowing. I’ll tell you though, this kid’s got a purpose. 98 of 100 babies would have died, and he didn’t. He could be studied, a case. He shouldn’t be here. But he is. He’s proving us wrong every day, and on every count so far — from his heart to his kidneys and liver, they’ve all healed. He has been injured, there’s no doubt about that. But he’s meant to be here.

I am proud, and furious, and grateful, and crushed.

Let me be all those things. Without a little of everything, I’m going to explode.


Posted on Thursday, May 24, 2007 by Registered Commentersweetsalty kate in | Comments87 Comments

Reader Comments (87)

My heart is with you. Through your writing, I can actually feel your suffering and I want you to know that God is with you all right now, and the love of so many. I know you feel helpless now, but just know that miracles can happen. I do know that. My brother-in-law suffered an accident last year and we were told he was brain dead. He couldn't speak, or move and had a feeding tube and ventilator to keep him alive. They said he would never recover. But the human spirit is very powerful. This was just last August and in January he opened his eyes and smiled. Today he lives with us and walks and talks and laughs and is healing more everyday. So, although the docs know a lot, they don't know everything. Little Liam is obviously a fighter, and I know in my heart that he will be ok. Miracles do happen.
May 24, 2007 | Unregistered Commentercosmicblu
Hold on, Kate. Just hold on. You will get through this. I love your posts and your writing and thought to myself as I read this one, how could a girl who is so honest and open while being so graceful "pretend". You own your feelings. In difficult situations, I often find it difficult to hold myself together emotionally and by the end of each day, realize how much energy I spend choking back the tears and trying to keep it together. For myself and those around me. Making jokes, trying to will the hours to pass so I can reach that point where I see the light at the end of the tunnel. It'd too hard. I hope you see your light soon. You and your boys are in my thoughts.
May 24, 2007 | Unregistered Commentermak
Good for you for writing it out and feeling it. Damn...only a woman so in tune with her world could give birth to such amazing kiddos. Liam has a purpose, Ben has a purpose, and YOU being their mommy is no mistake. If it weren't for you, they wouldn't be here blowing everyone away with their strength.
May 24, 2007 | Unregistered CommenterMsmelle
Oh, I SO agree with Msmelle, and the doctors too. That little guy has a purpose and we'll all just have to stick around to see what that is. We all do, I fully believe that there aren't any accidental births out there. Each person has the capacity and in actuality DOES affect thousands of lives as they live their own. And yours will be so blessed with him in it. Of course we all want only the best of things for our children. But you'll get through it, and through it WELL, because that is how good of a parent you already are. You know yourself, you face your feelings. You are all of those things at once, and all of them are right and okay. I feel pretty confident you're not suppressing your emotions, and that's the healthiest thing you can be doing right now, is just getting it ALL out there. Then you can slowly pick through it, deal with this, throw that away, embrace this other thing. And you're right, everyone else can just fuck the hell off. :-)
May 24, 2007 | Unregistered CommenterTrasi
Kate, please don't be so hard on yourself: you're doing an amazing job, the best that anyone could do under the circumstances. I'm blown away by your strength and honesty. And nothing you've thought or done before matters now: you will get through this, and so will your boys.

And Liam? He's beaten the odds, day in and day out, consistently surprising all the various experts who've poked and prodded him. Let him surprise you.
May 24, 2007 | Unregistered Commenteranna
you take all the space you need. screw the poker face...it'll only bite you in the ass eventually. the train wreck that you may feel like is honest, and probably something that everyone around you can empathize with and is perhaps even a little relieved by, because if you turn into a Stepford wife right now, they'll worry MORE about you. you're doing a beautiful job, as i see it, of taking care of yourself...because you're actually paying attention, processing. well done, Kate. you're doing a good job.

about Liam...bless his little heart. he is here. i know all you want for him, and all the grief of fearing he will not have that, be that...but he is here. and it's natural that you're a train wreck given that you have no way of knowing, right now, what that means or will mean to all your futures...but he is here. i'm glad. i'm glad.
May 24, 2007 | Unregistered CommenterBon
Oh Kate, you are strong. You are so, so strong and it is evident in all of your words. This post is so amazing; you are honest to the core and you should be, every minute of every day. Let no feelings of guilt towards anyone in your life overcome you. You are vulnerable right now, but strong. I pray for little Liam every day, and his brother. I am so sorry for the suckiness of all of this, and I know - KNOW - I would feel just as you are describing you. Absolutely. You must let yourself feel everything in whatever capacity you need to.(Hugs to you) -
May 24, 2007 | Unregistered CommenterJoanna
Damn. What that doctor said was amazing. I can't believe that a doctor said it. Impressive.

Having said that, I know that every one who told me that "you had this boy for a reason" and "you must be so strong to get through this" just pissed me off. It sounds so trite coming from a mom of typical children (have you heard yet that they aren't called "normal"?).

I so understand your grieving. That hasn't gone away for me. Every time my boy misses a developmental milestone I experience it again, at least a little bit. It doesn't go away, it just mutates and becomes something else. I don't have a name for it, but it's not the same grief you are feeling now for the Liam-that-could-have-been. For me, when I hear another mom moan that some day a girl is going to break her son's heart, my heart breaks because I'm afraid that no girl will ever love my son let alone break his heart. Anyway, that's what my grief has become.

Be who you are, it's the only way to get to who you are going to be. To heck with anyone that says you are looking at this the wrong way or should take a pill. Pah!
May 24, 2007 | Unregistered CommenterKYouell
Kate, you continue to amaze and inspire. The way you describe your emotions gets me right in there with you. I'm holding my breath, I'M angry and scared and guilty. Sometimes, I wish I could be the body guard that you probably wish you had. Sometimes, I just stand back in awe of everything you're able to do despite everything that's happening to you.Amazing what the doctor said about Liam. He's obviously a fighter. To everything - and everyone - a purpose. I can't wait to see what his is. Something brilliant, no doubt.And the photos of you with both boys are stunning - just beautiful. You know what? You don't look like a mess at all (I'm not saying you're not, but...) - you look radiant and strong and like the mama you are.Beautiful.
May 24, 2007 | Unregistered CommenterJamieLee
I've been reading along about your family... and am just so happy that it seems the boys are just getting stronger and stronger. I think it's partially because they know they have such a strong Mommy. One who can tell us all in the internet world just how she's feeling. I am just in awe of your ability to write your story.
May 24, 2007 | Unregistered CommenterColleen
I've been lurking here since Dutch wrote about you (I'm so glad he did). After I read this post I feel like I have to speak up and tell you that your family is in my thoughts and that there's one more little soul out there hoping and wishing that everything turns out for the best for you. I cannot even imagine what you are experiencing right now - but your rage and fury and frustration and pride is practically jumping off the page. You're an amazing writer and I'll bet you're an amazing mother, too.
May 24, 2007 | Unregistered CommenterLuisa
You deserve to be all of those things and more. Please know that you and the boys are in all of our thoughts.
May 24, 2007 | Unregistered Commenterwhoorl
You are a fantastic writer, and anyone who feels this deeply and has this much emotional intelligence is a zinger of a mama! Here's a mantra for you to cling to- it's my mom's: "TIE YOURSELF TO THE MAST!" That, and "Courage." For surely you've got it, lady. Peace to you.
May 24, 2007 | Unregistered CommenterOcean
you are doing just fine ~ i remember changing one of my twin's poopy diaper on his cute buttless butt (he wasn't even 2 pounds) and feeling wholly inadequate. now i have the memory and am so grateful for that.

you are so beautiful for writing this all out, i know my words are inadequate but you are doing great and your boys are doing so amazing, i am breathless in wonder.

i also know this doesn't help but my sister had cerebral palsy and she was the most beautiful sister a girl could hope for and the light of our family. i remember the doctors telling us that henry (our twin) would likely have similar problems (ah the stoopid bleed) and i was all outraged, like i didn't care so long as he lived ~ i must have known deep down that he wouldn't, mine were so much younger than your sweet boys.

i am praying for you all and hopeful my words don't offend, they are not meant to, mostly i really just want to say that you are amazing, strong and wonderful and any feelings you have are completely absolutely valid ... always. xox
May 24, 2007 | Unregistered Commenterdaisies
Give yourself space. You are grieving what you have lost: the dream of normalcy you had for your son. Do not judge yourself, for we on the outside are certainly not judging you.

You are not placing conditions on your son. You love him regardless. You are merely mourning the loss of that blessed, easy normalcy that you (like every other expectant mother) believed in.

You may not need a pill, but someone to talk to — someone who's on the outside, someone who can be concerned with you and only you — might be beneficial, if you can make the time.
May 24, 2007 | Unregistered CommenterCountry Mouse
I'm so glad to hear Liam is healing...his heart, his kidneys, his liver. When doctors don't know, that means there's room for amazement...it's already happening. Everything can heal with space and love and hope and prayer. I love that you say when you are with them, you are there. Let them lift you up. You have beautiful children to be very proud of.

Your emotions are your medicine right now. I feel the sting through your words and also your strength. You're allowed to feel this way, all of it. I'll stick up for you.
May 24, 2007 | Unregistered CommenterHeatherH
Kate,Our daughter had a Grade IV bleed and then one day it was GONE! She has always been a bit clumsy and may never be a star athlete, but you never know. None of this stops her from running around like crazy and getting into everything. Her curiousity knows no limits. She has that puppy-like energy that you see in almost all 2-year-olds. Yes, there is a whole spectrum of how the bleed can affect a child, but don't think about the worst-case scenario. Think about the here and now and how it feels to hold those precious babies ... so small and vulnerable and perfect. Just pure love.

Keep changing those diapers. The first diaper I ever changed in my life was through the holes of an isolette. It gets easier and makes changing diapers without all the wires and hardware much easier by comparison (except when they get into the squirmy phase).

As always, you are in my thoughts. I don't even know you, but I think the world of you. Your honesty is so rare and beautiful. Keep the faith.
May 24, 2007 | Unregistered CommenterLisa George
I'm proud and furious for you. Hang on.
May 24, 2007 | Unregistered Commentercanknitian
Thank you for keeping your readers in the loop. I hear and understand. I'm wondering if there is a social worker who works with parents in the NICU. I had a wonderful social worker who was very sweet and understood everything I was going through.
May 24, 2007 | Unregistered CommenterKathy Ramsey
I check your site about 20 times a day for updates and then I rarely comment. Mainy because I keep starting to write something and then I realize that there is nothing I can say that you haven't said so much better. How could my stumbling english and crappy spelling bring you comfort?

My god Kate. You take my breath away with your description of "now." You are very blessed to be able to get all of this OUT.

Guilt, Pride, Shame, Anger - fuck, that's a lot of different emotions rolling around in one place.

I once broke down in hysterics on the 9 train when Jack was in one of his "vallys," I was so pissed that no one knew what I was going through. And I couldn't figure out how to say any of it myself. I wish I had your talent.

As for normal. I grieve every day for the normal we've lost. I watch the children at the inclusive school down the street and wonder if that is Jack's fate. I obsess over "where we're moving next" because I need to be near the *best* hospitals. In the midst of these obsessions I look at my smiling happy boy (Jack knows all about Liam and Ben, we talk about them often) and I KNOW that this normal is okay. I wish it were my original vision of normal, and I feel guilty for wishing that, but I still *know* we'll be okay.

With a mamma like you, Liam and Ben and Evan are going to do just great in whatever normal you make for them.

Oh. regarding Pills. It took me 3 earth shaking, anxiety filled months after Jack was born to get help. I fired my shrink (twice actually) before I took the damn things.

We think of you every day.

Your friend (and stranger),Sarah
May 24, 2007 | Unregistered Commentersarah
I don't mind if you "happen to others." They/We can deal...
May 24, 2007 | Unregistered CommenterYvette
Liam is holding your finger purposefully now, so the motor skills seem to be there already!

Thanks for keeping us updated on the boys and yourself. I found you through parentdish and I've been reading ever since, sending up prayers and thinking of you.
May 24, 2007 | Unregistered Commenterjennie
i am proud to be a member of your arena of supporters that is giving you the space you need to feel the extreme range of emotions and being all those things you need to be right now. this new normal seems to be an awful lot like post-traumatic stress, and anyone who can't give you the support you need right now to work through this is an idiot.

before i was a parent, i could never have imagined the way my child could ever be so inextricably intwined with me forever- i imagine all the futures she may have, and try to figure out how to feel the unavoidable heartaches now so she won't have to later. it's so overwhelming and dumb and instinctual and guilt-filled. i just want you to know i don't know what you are experiencing exactly but i very much hear you and validate your feelings. they are so very real, and understandable. how i wish i could stand on a beach with you and scream into the wind and the cry and have a beer and gaze at those wonderboys of yours.

i pray for peace and comfort for you tonight, kate. progress for your boys, and that liam especially continues to beat the odds as he finds his own path in this world.
May 24, 2007 | Unregistered Commenterpnuts mama
Scream, yell, cry, laugh - let it all out sister. you deserve the space to do so and so much more. Every post you amaze me with your strength. But you don't always have to be strong. Let it all out - scream it out at the top of your lungs so you can go back to the hospital each day and be the pillar of strength for your boys that you so obviously have been. It's ok to feel all these conflicting emotions, to have these selfish desires. My heart goes out to you. Take care of yourself - you want to stay strong for all your boys. As always, my thoughts and prayers are with you and your family.
May 24, 2007 | Unregistered CommenterMyKianaKeiki
it's alright to feel all this. in any situation - post pardom is a million emotions spinning out of control, that is normal! You have a lot more included in that routine hurricaine of thought all us mothers go through.

mothers are supposed to be all over the board emotionally, especially when things are *different* than we plan or hope.I don't know a lot about life, but I promise none of us get more than we are able to handle.
May 24, 2007 | Unregistered Commenterliz
Kate- you are doing it, you are coping, and you are giving Ben and Liam everything they need from you.

The pain, fear, love, rage and pride you're feeling is all part of the wonderfulness that is you, and is why you are such a sensitive and compassionate mother. I imagine that this stage- the fear of the unknown- is the worst part.

God, I just want every good thing for you and your boys. I wish them home in your arms every single day. I want it to be perfect and easy, because you deserve it. And I just feel that it IS all going to be OK, and whatever Liam's physical condition turns out to be- you will adore the pants off that kid, and bask in the joy of his unique little soul, just as you do Evan.

I wish I could do/say more, as we all do here. Your cheering section absolutely kicks ass and makes me so happy.Go Kate! Go Justin! Go Evan! Grow Ben and Liam!

Pinch those cute little froglet bums one extra time for me, please.
May 24, 2007 | Unregistered CommenterEve
I echo a lot of the comments here in saying that I'm proud of you. Let it all come and you'll do what you need to do when you need to do it. And that includes your feelings. All of those feelings are yours and they all need somewhere to go. Screw them all if they can't handle your "not poker face". Feel everything and then feel it again. Then try to get some rest and get back up and do it again. You have a steel core that is holding you up and some days it's all you can do to hang onto it. But it's there and you can hang on. We're all still here braiding new pieces of metal onto the old.
May 24, 2007 | Unregistered Commentertulip
You are an amazing woman and mommy. Thank you for allowing us to be a part of this journey! keep letting it all out!
May 24, 2007 | Unregistered CommenterDonna
it's very hard when you can only get to compare life against the bad things which didn't happen rather than the good things your dreams said would happen.

but a day at a time is all you can do - don't look too far into the future

and travel with hope.
May 24, 2007 | Unregistered Commentercaith
you are so brave. your honesty amazes me.
May 24, 2007 | Unregistered Commentersquindia
Having nothing to say is no reason not to say something :)

This Albertan woman is praying for you all.
May 24, 2007 | Unregistered CommenterAccidental Poet
Be a train wreck if you need to, it's just another expression of love!

And Liam, wow, I don't know what to say other than I'm hoping for him and sending love your way.
May 24, 2007 | Unregistered Commentertrish
Pulling for you and your family here in northern California. Your writing is amazing -- it has really touched me. Keeping you all in my thoughts!
May 25, 2007 | Unregistered CommenterChristina
i'm here via suburban mum, and thinking about you. hope it's ok if i light a candle for you and your family and your boys.
May 25, 2007 | Unregistered Commenterislaygirl
I was told the same thing as you; first that that my son was probably going to die, then that he was brain damaged and likely would never walk, talk, do any of the things 'normal' kids do. He was just three months old.

Now he is twenty months old and aside from the 'barely perceptible clumsiness' that you mention, and a slight weakness on one side of his body, you would have no idea anything had ever been wrong. His brain is damaged, of course; however our little ones fight harder than we could ever imagine and their little bodies can achieve miraculous feats of recovery.

Try to take care of yourself first and foremost; I remember being in the intensive care unit, barely eating or sleeping. It was only when I began my little rituals of self-care that I could really process what was happening. I am thinking of you and your family.
May 25, 2007 | Unregistered CommenterAnji Capes
My Dear Kate,

Before I was a mom, I was a teacher for 10 years. For 3 of those years I was in Early Intervention and I want to share this poem with you. Welcome to Holland - by Emily Perl Kingsley.http://www.our-kids.org/Archives/Holland.html

I continue to hold you up in my thoughts and prayers.All my love,Ginko
May 25, 2007 | Unregistered CommenterChristine
Those boys are pretty tough. I think I see where they get it from...
May 25, 2007 | Unregistered CommenterB
You are so amazingly real and aware of your feelings. I don't even know you, but I wish I could be like you. You're so much stronger than I think you even realize...

My thoughts are with you and your family...
May 25, 2007 | Unregistered CommenterJB
You are an amazing woman, I can only begin to imagine the intensity of what you're going through right now. One day at a time. Soon enough you'll be playing on the beach with all three of your boys and this will all be a "Remember when . . . ? We were so scared, and look at them now!" And marvel about that. It must be so very hard, but focusing on the possibilities instead of the limitations can make all the difference. I love you, stranger friend, and am praying for you and your boys.

(((cheesy internet hugs!)))
May 25, 2007 | Unregistered CommenterAlicia
Kate,

Your honesty and bravery continues to amaze me.

Little Liam (and Ben)'s spirit amazes me even more.

I can't add anything not already said! You are a wonderful mother to all three of your beautiful boys!
May 25, 2007 | Unregistered CommenterMimipz5wjj
When my dad was dying, a counselor at The American Cancer Society told me that grief makes people act strangely, and to give those I loved the space to behave badly.

You are behaving admirably, bravely, wonderfully. You are going through what any parent or person would go through, but with much more grace than I can imagine myself mustering.

Try not to judge yourself.

Keeping you and your baby boys in my heart, as always.
May 25, 2007 | Unregistered CommenterMrs. Chicken
doctors like to give the worst odds but even so, liam seems to be doing really well. keep the faith, as hard as it is. you've got a whole internet rooting for you and your lovely family.

you are a remarkable woman, mother, person, human. that is why you are going through every emotion every 45 seconds. you want a pill? get one. ask for one. this is as much about you as your boys. you are all one and you all need to lean on each other.

with much love, from a stranger who doesn't even know you - franny
May 25, 2007 | Unregistered Commenterfranny
you deserve to have carte blanche wherever you go and under all circimstances! don't ever worry about what "they" think, you are focussing all of your energy in exactly where it belongs. blessings from michigan.
May 25, 2007 | Unregistered Commenterchris
It's OK here. This is your space and we're your people.

You are doing what you need to do, and there's a lot for you to process. I doubt there is anyone who has gone through tough times with their children in any kind of picture-perfect way.

When you vent or melt down you are taking care of yourself. You do what you need to do in order to stay marginally sane and focussed.

It's not easy for anyone, and I think you're doing a fantastic job.
Kate,

Liam is a survivor. Already he is defying the odds, and showing you how committed he is to life. He wants to be here, to keep amazing and surprising you and the doctors.

Please dont be so hard on yourself; you are doing the best you can under very, very difficult conditions.

Love to you and your family from Chicago,Mary
May 25, 2007 | Unregistered Commentermary
Kateyou have every right to feel every emotion and all at the same time if necessary! it's a good sign that you are getting over the shell-shock and into fight mode. how could you feel anything else but a million different things when the future is so unknown? even the people who are supposed to know (the docs) don't have a clue how exactly far your boys will go. your hope will ferry your boys to their highest potential.that loss-mud is pretty strong... even when you pull your sock foot out, you might find smears of that mud behind your ear or under your fingernails. but that is ok.those boys are lucky to have you as their mom. and your writing is a gift to them and the world.

warm love and hope to the whole family.
May 25, 2007 | Unregistered Commentertracey
You are handling all of this beautifully, Kate. You have every right to be experiencing any and all emotions imaginable and we all understand, you family, your friends, the internet... we all understand.Liam has proven to us all that he has what it takes to persevere. Keep in mind the saying 'A little knowledge is a dangerous thing'. They can tell you what they know right now, but not what that means for the future.Keep doing what you're doing, make sure you're taking care of yourself, too. Try not to be too hard on yourself, you are loved and supported and an inspiration to many. You, your boys and your family have touched so many lives - around the world! I hope power of that love and good wishes helps pull you through the dark patches. Many good thoughts coming your way from Lisbon

May 25, 2007 | Unregistered Commentertrublu76
Kate - there are stories from other mothers with children with similar bleeds at shareyourstory.org. many of those children are leading normal lives; it's only the mommies that know the hardships their children have gone through. maybe their experiences/advice can help you.
May 25, 2007 | Unregistered Commentermeredith
I let you be.

Be, be away.

One NICU baby friend had a grade 4, she has a limp on one leg and her right hand lacks some coordination, she is now in regular school and is EXTREMELY SMART!!! An only child (parents can't conceive) she is the center of the universe for those parents, and the only grandchildren both families have.Treasure the today, God Bless.L
May 25, 2007 | Unregistered CommenterSupermom73
Here's some space for you:(__________________________________)

Just multiply that by a billion.

Grief, loss. So real. So much potential too. Don't apologize. You have no reason. We're representing for your boys (all 4 of them) here in Indiana.
May 25, 2007 | Unregistered CommenterJason Dufair

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