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.


Reader Comments (87)
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.
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.
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!
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
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.
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.
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.
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
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.
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.
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.
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.
but a day at a time is all you can do - don't look too far into the future
and travel with hope.
This Albertan woman is praying for you all.
And Liam, wow, I don't know what to say other than I'm hoping for him and sending love your way.
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.
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
My thoughts are with you and your family...
(((cheesy internet hugs!)))
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!
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.
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
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.
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
warm love and hope to the whole family.
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
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.