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Into the mystic

I am a red thumbtack on the NICU map of parental distress.

The meeting room was set with a fruit plate, muffins and a tableful of "Are You Stressed?" pamphlets. After some chit-chat with the other parents I absently chose one, a 'Checklist of Cognitive Disorders' that read something like this:

  • Do you see unfavourable events as a pattern of defeat?
  • Instead of recognizing that we all sometimes make mistakes, do you believe you are a failure?
  • Do you feel the world has done you wrong?

Check. Check. Check. If I answer yes to all these, do I get a prize? They all chuckle. A sidelong glance from the counselor sitting next to me. Have a look at this, she says, seeing through my lame attempt at humour. This is our Booklet of Normal Feelings.

Inside my head I snort, ever the cynic. You can’t help me.

Then, the first thing I see:

  • Grief at the Loss of a Normal Pregnancy

I can't breathe. My eyes well up. Not here. Please no. I can share, but only when cloistered. Spoken words clog my throat. Written words put chaos into manageable packages — but don't require me to look into your eyes and see discomfort there.

I mumble a painfully awkward run-down of the prognosis of last week. With every word I am naked on stage in front of a thousand, then five thousand, then ten thousand people. What was supposed to be an offhand "Phew! Sorry, it's just been a rough week, never mind me…" has now become uncontrolled sobbing in front of a captive audience.

The other parents suddenly fixate on their shoes, regretting the joviality of just a moment before as they compared notes on their textbook preemies, relative hippopotami next to Liam and Ben.

Not to claim a monopoly on NICU stress. They don't need to regret. We're all in this together, and everything is relative. We'd all rather be home.

+++++++++++

I dreamed you were sitting in the NICU at the edge of their bassinets, and there were these endless printer readouts of heartbeats or other bio-info cascading to you as you sat on the floor, and you and your older son were using large amounts of bright washable paint to paint pictures on the readout paper. Next I saw your older son again, lying down in a photo with Liam and Ben on either side of him, they were all smiling. Three happy boy-heads. The colors in the photos were phantasmically vivid, like in your other photos.

Her name is Sara, yet another unknown voice that speaks to me of dreams I have to co-opt. I don't have dreams like this. I wish I did, but I'm blank.

I could accept if Liam doesn't make it. 'Accept' as in rationalize. I would be forever gutted, but I could distill meaning and reason from it. Conversely, the only other outcome I can accept is that Liam will defy everyone, completely unscathed.

What if he lands somewhere in the vast gulf in between, disabled? This is most likely, by a longshot. He'd have an identical twin without physical challenges. Cruel, so cruel that is. A mirror of yourself, only holding more cards.

Unfamiliar territory, when a child's life veers off the parallel of your own. Such a bloody complicated muck. Anyone could be hit by a bus tomorrow, they say. Having a healthy baby doesn't give you any guarantees. I know this. We've all seen it happen. But I'd much rather have him start his life with ability, not a lack of it.

It's shameful to put this out there, this darkness. But I have to put it in a package, label it, find a spot on the shelf for it. So that someday another newer, neater package can be placed in front of it, demoting it to the background, dusty and irrelevant. Some form of acceptance.

…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.

Anna said this after the last post. Another bell rings, cutting through the static.

Blindfolded, we are standing either at the edge of a cliff or the curb of a sidewalk, waiting for time to nudge us into the void.


Posted on Monday, May 28, 2007 by Registered Commentersweetsalty kate in | Comments41 Comments

Reader Comments (41)

Oh Kate,I don't know what to say except that I am thinking of you and Liam and Ben. You are all amazing. I got your link from Jeanette at Crunchy and have been following your story since the twins were born. What a nightmare, and what an amazing writer you are. Take care of yourself, and don't forget that we are all pulling for you and your boys.
May 28, 2007 | Unregistered Commentercrazybeautifullife
Now I am hearing Van Morrison's soothing tones singing. Kate I am still sending out all our love to you and your boys. I think Anna said it best with "Let him surprise you". My fondest hope is that you are all feeling the love that we are trying so desperately to send you. We'll stay here with lights for your boats so you can see your way to shore. Wherever that shore may be.
May 28, 2007 | Unregistered Commentertulip
i can see this. the two unknowns that feel safer are the ones that will give you clearer outcomes sooner.

i'm sorry it's so tough. i am thinking of you and your family, and especially liam, because he's fighting damn hard right now.

how you write so beautifully in the face of so much i'll never know.
May 28, 2007 | Unregistered Commenterslouching mom
I think of you all, all the time.

But especially Liam. I think about his unimpaired cognition, inside that body that may or may not obey him. I think of brilliant men I have known who have cerebral palsy: Eric S. Raymond and Bruce Perens. I think of Stephen Hawking.

I think about his tiny hand squeezing your finger, to let you know he's there.

I want so much for all of you.
May 28, 2007 | Unregistered CommenterYatima
Tulip, we absolutely do feel love and support. Thanks so much for that. Another NICU mom said to me, "It's almost harder when they become stable, because that's when you come crashing down.." and she was so right. Now we have all kinds of questions we want answered, and we won't get that. So it's hard. Not easy to be in there every day and not speculate endlessly. But that will ease off, I hope, like these swimming-in-shit posts (but I'm in it, so I may as well try and make sense of it...).

Love and support are what gets us through, both in real-life and 'out here'. Thanks everyone.
May 28, 2007 | Unregistered Commentersweetsalty kate
Hi Kate,I wrote a post on my blog a couple of months ago for new parents. I don't know if it will be helpful for you or not, but for lack of anything else, I thought I'd offer it to you:

http://jodireimer.blogspot.com/2007/03/thoughts-for-new-parents.html
May 28, 2007 | Unregistered CommenterJodi
I hear the song of your grief, Kate. It's a familiar song to me. I hope this venue of fonts and links helps you look headlong into that grief. Looking it in the eyes is the only thing that's saved me and my kids so far. Group settings, not so much.

Continuing to represent for you all.
May 28, 2007 | Unregistered CommenterJason Dufair
Prayers for you and your family.
May 28, 2007 | Unregistered Commenterlaughing mommy
It's so hard from here. Am I a big enough brother that you can see me from thousands of miles away? Do I stand tall enough that you can find me and could lean on me in a dark moment? I hope so, I sure as hell hope so.We love you KT, and hang on your words.

May 28, 2007 | Unregistered CommenterKate's Big Bro
i love you girl and that doesn't even compare to the love of those who know you like that big brother of yours! :) you are doing great work, kate... you and those boys!!! hugs and smiles from here!!! :)
Keeping you all in my prayers & wishing I knew what to say.
May 28, 2007 | Unregistered CommenterA
You and Liam may face many challenges but just from what I've read here, your grace and courage will see you through.

Keeping you in my thoughts.



May 28, 2007 | Unregistered Commenterann adams
Blindfolded indeed. Which I think might be the most difficult part of it. The unknown sucks in many of it's forms. Perhaps yours is worst kind of unknown and I am so sorry for that. Just know that so many are thinking of you and sending so much love.
May 28, 2007 | Unregistered Commentertracey
I wouldn't think of Liam holding any less cards than his brother, just a different hand. And , when it comes to poker the best hand doesn't always win.
May 28, 2007 | Unregistered CommenterLeann
Maybe someone else had mentioned this book, but when browsing yesterday I picked up a copy of "The Early Birds", written by a mother who had twin boys at 31 weeks. I thought of your story, and that there might be some comfort for you in reading her words.
May 29, 2007 | Unregistered Commenterkarrie
you and your husband are amazing.

hang in there --

you have so many friends and strangers pulling for you ...

you are extraordinary.
May 29, 2007 | Unregistered Commentersue houser
"The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly."

-- Buddha
May 29, 2007 | Unregistered Commentersue houser
Another eloquent post, Kate. You make it so much easier for us to 'understand' what you are feeling. I am constantly thinking of you and offering my hope that indeed, your little guy pulls through this - all of this. ((hugs))
May 29, 2007 | Unregistered CommenterJoanna
I don't have anything wise or apt to say, not really.

Just that Liam will be Liam, however that it. And I'd be made and scared and everything, just as you are.And mad. Scathing mad, and indeed, waiting for my prize.



May 29, 2007 | Unregistered Commenterthordora
the way Slouching Mom framed it resonated with me. the two unknowns that would bring clearer, faster answers naturally seem preferable...it's the waiting, the not knowing, that feels almost unendurable, impossible to bear.

i know. for me, that period was the three weeks before delivery, rather than after, but i remember the very same words - give me one or the other, just not the cruel, uncertain, in-between. my heart breaks for you, Kate.

but what you may not know is that meaning and the capacity to rationalize don't necessarily come with an ending. that you may remain as exposed as you are now, for a long while yet, though you'll learn to mask it better. the NICU is probably particularly hard for any of us who score "all" on the nice little checklist of 'cognitive disorders,' because you're cognizant of all the implications of this, and how they may play out. you are not hiding from the worst case, and so death stops looking like the worst case.

i can't answer whether it is, or not, for you or for Liam. wanting this off your plate is nothing to be ashamed of. no matter what. but despite the cruelty of Liam being a twin who may not have the capacity and abilities of his "other", it is YOU this will be hardest on, for years to come. you who will have to bear the burden, make it okay.

i do know that when we got the risky prenatal diagnosis i felt like you do, and thought that Finn not making it would at least bring respite from the uncertainty and fear. but it didn't, just brought new uncertainty and fear. i felt the same flipped out "i can't", except without any hope...which beforehand i would have thought would be a relief. it wasn't. after, i was just as exposed, skinless, raw, and the grief magnified.

i do not envy you. i envy you two boys who may make it, may even thrive and (i so hope) be a joy to you, but i do not envy you the pain you are in, nor the road you are walking.

i just donated a buck to the IWK at the Kent Building Supplies this morning, because the telethon's coming up, and for a moment when she handed me the balloon and i went to write Finn's name, i seized up just like you did at the parents' meeting. two years later. still exposed. my secret heart, out there for people to see. no matter how the story goes, i'm not sure there's respite from that feeling.

i've probably said too much, and not well enough. forgive me.

i wish you endurance, Kate, and acceptance of all this dark. because it is part of your healing, part of getting through to the rest of your life, and your sons'.
May 29, 2007 | Unregistered CommenterBon
Sending you hugs and support - I don't know what else to say. You are a good mom. You did nothing wrong and you are not supposed to be calm and composed. What's happening sucks and if you were too calm and not a wreck - then maybe there'd be something wrong.
May 29, 2007 | Unregistered Commentermaria
I can only think of cliches: "I can't begin to imagine. . ."

but I want you to know that we're thinking of you, and I read every post you write as soon as it goes up and then three times more.
Sometimes it is so difficult to realign ourselves when our expectations are not met. Whether you worry about the worst, or expect the best, if the outcome is other than what you'd secretly held in your heart, it takes a lot of time, courage, and wisdom to reorient yourself to the new path your life has taken.As many others have said, I think you have the strength and grace to stand beside your sons through anything.At the same time, I hope that you have the chance to retreat and heal yourself one little piece at a time. Remember to take care of you.
May 29, 2007 | Unregistered CommenterJamieLee
A hand squeeze through the internet.
May 29, 2007 | Unregistered Commenterm
My heart aches for you, Kate. I think of you and your boys constantly and pray for you. Don't be ashamed of anything you are feeling. I wish I could give you answers. I pray for you to have peace.

Love,ashley
May 29, 2007 | Unregistered Commentertwin chronicles
A friend of mine had a scare with her son, thinking he might have an illness that would be devastating. Between the time of the test and the result, she went through in her mind how horrible it would be to live life with this illness. I tried to remind her, that for him, there would be no other way. This would be his reality. And because children are resilient, he would find all the ways to be happy as he "overcame" the illness. I also reminded her, as the Buddha says, that every moment she spent with him worrying, was a moment where the perfection that is today was lost. I thought of this as I read your post. Your boys will probably not compare themselves as "able" and "disable". They will have the relationship that develops out of who they are - whatever that is. Its our adult notions of capability that judge behavior. Young children are resilient and accepting. Your burden now is the unknown. Once you have knowledge, you can work on overcoming. It may be years before you know or see the effects in Liam - or is it that it would have been that way regardless?I'm sure you've thought these thoughts, and I don't mean them to be critical... just thought I'd put some more thoughts out there for positive, optimism, and strength.
May 29, 2007 | Unregistered CommenterLisa
From one twin mommy to another,May you find peace and strength and love in all of the little miracles around you. May you focus and today, and not get caught up in tomorrow. May you know that all of this is part of a bigger plan, and feel honored to be part of these beautiful boys' lives. May you grieve when you need to grieve and heal when the timing is right. God's grace and healing!
May 29, 2007 | Unregistered CommenterMarie Green
It is never shameful to crave the best possible life for your Liam. What mother doesn't want the absolute greatest for her children? That said, I have met many families with disabled children and those children are some of the most fascinatingly content kids I know.

Though I read your post about prayer, I'd like you to know that my son Phinn and I pray for you, your boys, and your family nightly. It may or may not be a comfort to you but as a stranger it is the only thing I know how to do.
May 29, 2007 | Unregistered CommenterSarah
You guys all blow me away. I can't believe how amazing you are, the things you say. I read again and again, absorbing, exhaling. You are all so wise... thank you.
May 29, 2007 | Unregistered Commentersweetsalty kate
'Let him surprise you.'

Yes. Let the universe surprise you. Let you surprise you.

Sometimes, when you're standing on the curb, blindfolded, hands will reach out and grab you by the elbow and guide you. And sometimes all the traffic will grind to a halt. Sometimes everyone sees, everyone knows, even the gods, that you are baby ducks, and that everything should stop for you, and let you cross.
May 29, 2007 | Unregistered CommenterHer Bad Mother
Her Bad Mother just made me cry again. That was a beautiful tie back to that post.

I can't find the words right now, how I wish I could say something wise and comforting.

Just know you're being held in the heart of a complete stranger here, and I'm tearing up because I don't have any words - if I were there in person it would likely be a long silent hug with both of us in tears.

Everyone above hits the core of the truth - either of the extremes seems "easier" because they are known. It's so scary to just NOT KNOW. The unknown is the thing you can't prepare for. Feeling like you could better deal with a known is somehow making you feel guilty for not accepting the "as-will-be" situation? Please don't feel guilty - what you are feeling is absolutely normal.

I hope that made sense to you.

I think I'll go back to the silent hug. :)
May 29, 2007 | Unregistered CommenterLisa
I think the unknown is more difficult than the know. And despite this unbelievably difficult time, you still write so beautifully and capture us all. I wish I could pour you a cup of tea, or make your family dinner, or do something to help. You and your boys are in my thoughts.
May 29, 2007 | Unregistered CommenterAndrea
Your creative temperament gives you the ability to imagine the best and the worst outcomes. Right now you are in the thick of this, but as time goes by, you will learn to not let your brain take you to the darker places. You may even let your imagination lead you to the thought of what would happen if things turn out just fine. You just don't know right now and it sounds like a cliche, but worrying won't change the outcome.

If group or individual therapy doesn't work, don't worry. There are a lot of ways of healing. Everyone has different outlets that help bring about peace ... getting out for a walk, reading a book, talking with a friend or spending time with your son ... sometimes these types of things can be really valuable in helping you get through this grieving process.

As always, we are all here for you. Keep pouring out your beautiful words. For you, this may be the most cathartic thing you can do.
May 29, 2007 | Unregistered CommenterLisa George
Don't be ashamed... darkness is what makes us capable of eventually seeing the light.

I thank you for sharing your journey so intimately. I think of your boys everyday, of their strength and resiliency. Especially Liam. He's quite a fighter.

Sending you some virtual hugs today...
May 29, 2007 | Unregistered CommenterGabs
Oh Kate,I don't know what to say...and I can't even begin to imagine what you and your family are going through.

What I do know is that, from reading your journals, you are a strong woman and a wonderful mother. I know it may not feel like it, but you are living this and at the end of each day you are still there. And it doesn't matter if you are a puddle of goo right now because you have been dealt a hellish hand my friend, so give yourself permission to feel wobbly without guilt. And just remember that you have so many of us here in awe of your amazing strength and with open arms to catch you whenever you need it.

xoSelah



May 29, 2007 | Unregistered CommenterSelah
they're so lucky to have you mama!
May 29, 2007 | Unregistered Commentermod*mom
They are beautiful, beautiful boys.

Sending thoughts of strength and love to you and your family.
May 30, 2007 | Unregistered CommenterMammaLoves
This is an amazing post. I beg your indulgence to acknowledge that blogging is a valuable place for it gives the freedom doesn't it? I mean I am glad that the group gave you something but your writing does it as well, yes? Sometimes exceptionally well.

A secret place where you can say it. Not necessarily say it all but say it true. Continue in your desire for the fullest range of emotion you require in this experience, Kate. You have this and others at your elbow. It is better than OK; it is good. Take what you need.

Love to you all.

ps.. I want to write you of courage that you have. About your life skiing and how in front of you lays a challenge much the same. The challenge of snow so blank and yet so complex and knowing of itself, though we know nothing. You can do it... but I don't have the skill nor energy to do it properly (god bless post-scripting).. Rather I'll just introduce it and then high-tail it out of commentville. (chicken.)

pps.. finally... thank you for todays post and the wonder it engenders. he is lovely. again congratulations on these beautiful people you have brought to this world.
May 30, 2007 | Unregistered Commentermo-wo
I've been reading for awhile and never had the words to comment. Each post takes my breath away - your words are so vivid I feel like I'm in the room with you. Your boys are absolutely beautiful and you, Kate, you are amazing in your grace even in your anger, confusion, darkness and exhaustion.I so desperately want to be able to be there, to prop you up when you feel ready to collapse. To give you strength when you think it's all too much. To hold you tight and walk with you into that void.But I know that you really need will come from none us. I know that while Liam will continue to surprise you that you will also surprise yourself. You are capable of not only enduring, but surviving and thriving amongst all of this primal emotion.I think about you and your three boys all the time, sending vibes of love, peace and light.
May 31, 2007 | Unregistered Commenterikate
I realize now that I'm still grieving over the loss of my normal pregnancies. I thought having the 1st one at 29 weeks was bad and then the triplets' 25 week arrival made that look easy. At first, I wanted to try again in the hopes of one final, "normal" pregnancy that I never got to have. Those hopes were dashed by reality and the doctor telling me my body just can't hold babies long enough and an additional one would mean bedrest the entire time and probable early delivery again- maybe too early to survive this time. I don't need another child- four is enough and almost 2 yr old triplets is insane but I still wish I could have seen the last trimester and arrived at the hospital happily ready to deliver instead of crying and panicked next to a pamphlet about the NICU.
May 31, 2007 | Unregistered Commenterkimblahg
I usually hate all that PC garbage about "he's not disabled, but differently abled" but however things work out with Liam, it will probably turn out to be true.

Already, without him actually saying a word, he and his brother have touched the hearts of all these people in cyber-space as well as those of his family, reminding us, through your beautiful, agonised words, of the fragility and preciousness of our own and our families' lives. I just wish I could write half as well to you as you do to us.
June 4, 2007 | Unregistered CommenterClare

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