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.


Reader Comments (41)
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.
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.
Love and support are what gets us through, both in real-life and 'out here'. Thanks everyone.
http://jodireimer.blogspot.com/2007/03/thoughts-for-new-parents.html
Continuing to represent for you all.
Keeping you in my thoughts.
hang in there --
you have so many friends and strangers pulling for you ...
you are extraordinary.
-- Buddha
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.
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'.
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.
Love,ashley
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.
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.
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. :)
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.
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...
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
Sending thoughts of strength and love to you and your family.
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.
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.