Monday, March 26, 2012

The Difference

I dream about them. My dad more so than R but, I've seen both of them.

Most of the time I just note them in passing. Duck-duck-duck-deceased family member-duck-duck--GOOSE!!

Maybe it's just because I tend to have elaborate, Busby Berkeley-type dreams. When you glimpse your dead father or daughter in a giant kickline composed of everyone you've ever met, it's hard to focus on gradations of bizarre.

Sometimes the dreams are slower and I have time to digest Dad or R's presence.

My recurrent dream is a house that looks ordinary from the outside but is full of wonders on the inside--secret, underground tunnels that lead to places I'd forgotten I loved, a private airport in the attic, a kitchen equipped with house elves. Sometimes I fly or breathe underwater. Once, I made out with Ira Glass. His giant glasses got all fogged up and he told me I was sooooo interesting. me some Ira.

I think a lot of people probably dream about the unattainable (although I'm pretty sure I could have hit that if circumstance had brought me and Mr. Glass together at just the right time). And it feels amazing doesn't it? Not just the flying or deep sea exploration itself but, that inevitable moment of cognition when you think, "Holy shit! I can motherfucking fly!"

When I dream about Dad or R walking around whole and healthy it's indescribable. Yet, it's how I used to feel all of the time.

I've been running uphill for so long that I've forgotten what it feels like to coast along, believing that things will go according to plan, smiling in recognition at my fellow humans.

To be unencumbered.

To be free of the memory of beeping machines and disinfectant smells.

To not know what a doctor looks like when he or she is about to deliver the worst news possible.

To get riled up about money or academic achievement or anything other than disease and death.

To feel like I know something.

I listen to the news while I cook dinner and I hear people griping about government spending on entitlements and welfare abuse. I want some sort of magic mist to settle over America and make everyone feel lost and hopeless...together. How long would it take before we recognize that we have to lay aside judgment and find ways to help each other?

I wish I had some coherent solution but I just end up wanting to punch people in the face. Like, "Wake-up, asshole! You're not deserving. You're lucky." Like, "You didn't deserve that broken nose, did you? Well, there's a little taste of unlucky for you. Hope you have insurance. Hope some doctor who went to med school on the taxpayer dime is willing to help you." I wonder if I could get a grant for my little project...

I've known unlucky for almost 12 years now. And that's just a third of my life. And it's been mixed in with a healthy dose of lucky. Some people, too many people, start out unlucky and never manage to find the other side of it. I wonder what they dream about.

I can set Dad aside most of the time. Fifty-eight years of middle-class living. Hard work for sure but some results to go with it. If I could have a guarantee of 22 more years in my own home with my job and my family, I'd take it and count myself fortunate. But then I remember how he worked until he couldn't anymore because he was afraid of losing his insurance or losing access to his doctors if he went out on disability. On his last day at work he couldn't even climb the 4 stairs to get to his office. Two weeks later he was dead. He deserved better.

And R. What if she had survived NEC and open heart surgery? What if we were just wrapping up five years of oxygen tanks, feeding tubes, and 'round the clock medical care? How would we be able to work and take care of her? What would she deserve?

When I see them, whole and healthy in my dreams, it's like an out-of-body experience. Flying and breathing underwater and celebrity make-out sessions fade in the face of normal expectations fulfilled. Alive. Healthy. I am a world-killer.

I actually was a world-killer once. Maybe not the smartest or most beautiful or wealthiest but lucky enough that I didn't even recognize lucky. My world felt like something that would come when I whistled and would submit to my will. And, back then, I thought it was something that I had earned. Something that anyone could figure out if they just took the time or made the effort.

It's taken 12 years for me to realize that I was never that clever. Nobody is that clever.

So, now what?

Sunday, March 11, 2012

What to Expect...

...When Nothing's Gone as Expected and You are Still Figuring It Out Over 4 Years Later: A Helpful Guide for Mothers of Children with Siblings Who Died in Infancy

Chapter 12 - Pre-K

You should expect to see more exclamation points than you ever thought possible in a paragraph about your dead child.

TO: Pre-K Teacher

Mrs. H,

I just wanted to give you a heads-up that C is bringing a picture of her sister, R, for show-and-tell tomorrow (for 'R' week). R was C's twin sister who died a couple of weeks after they were born. I'm not sure if she'll mention that part. I'm also not sure what picture she'll choose but I'll steer her towards one that has as little medical equipment in it as possible. At the very least, I can guarantee that R will be alive in the photo that C brings in.

I don't think you have to worry about C getting upset. She's pretty matter-of-fact about the whole thing--because there isn't really any other way to be about it, I suppose.

We tried to talk her out of this but, we didn't want to push too hard. We try to be as open about R's death as possible and let C guide our discussions. Every once in a while that means that R gets mentioned in an awkward situation.

My guess is that most of the kids won't even realize what's going on but I didn't want you to be blindsided.



TO: TracyOC

FROM: Pre-K Teacher

Thanks so much for the email. I LOVE how matter of fact children are about death! They are so truly accepting! I was aware that C had a twin sister that had lived for a short time at her birth,however, I did not know her name. I think it is so cute that she remembered R for R week! Don't worry -I am sure the other children will be just as accepting as C is. Thanks for the heads up though-in truth I can't wait to see a picture of R-It will be so neat to see how much they looked alike.

By the way- were C and R born early?(I just want to be sure we have the story right).

I am sure C will do a great job at it.

Mrs. H

I can't really form a coherent thought about this. It's funny and baffling--maybe even a little refreshing. I can't tell if I should be offended. I don't know. Just seemed worth sharing.

Saturday, March 3, 2012


There's a little crack of light along the horizon when I walk to the train in the mornings now and a mist of promise and intention clinging to the treetops. Each cool breeze has a hint of warmth at the back.

Spring is here. And just in time too. T's been down for the count with pneumonia and pleurisy for a couple of weeks. For an otherwise healthy 40-year-old man, pneumonia probably isn't something to get overly worried about but, I'm afraid I'll never be able to take a visit to the hospital lightly again. As I waited to hear the verdict on his chest x-rays and CT scans and a bone scan for a closer look at an area of increased bone density on his ribs I learned that I was wrong about something. Seems I haven't lost all of my ability to expect after all--I am still completely capable of expecting the worst.

Fortunately it looks like he's on his way to a full recovery and spring is coming.

Every year, just when I grow itchy with thoughts of hopelessness and tired of listening to my family eat soup, comes relief. The days grow longer and I resolve to stop plotting my escape from misery and slurping.

I feel anxious in spite of my four-and-a-half year old resolution not to get ahead of myself.

From here spring seems like the most unbelievable thing. Death and rebirth and it happens every single year. Incredible.

We should all be gawking in wonder at the annual miracle but we're still about our business. Even those of us who seemingly have more cause for wonder.

Circumstance dictates that I plod, one shovelful at a time, in a state of constant under-wonder until all of my piles have been dealt with. Laundry, meetings, errands, laundry. "Look up," says my inner optimist, "Look up and see the daffodils blooming." I look up from a sinkful of dishes and see a drainage problem in my back yard. And I remember to worry about what spring will mean for the overgrown shrub that's pushing against the power lines along the side of our house.

I don't plod because I lack the imagination to wonder. I plod because, if I think about any of it for too long, I'll exceed the limits of my envelope. The everything that my daughters showed me will expand to its full size and I'll come apart at my hinges. As I float away into the ether, the laundry basket will slip right through the spaces between my particles and T and C will be forced to wear dirty underwear for all eternity.

I want to lie facedown on the grass as it comes back to life. Sink my fingers down through the thatch, into the soil and let it ooze through the tiny space between nail and finger. Push my nose beneath the greening clover and inhale until spring has been applied directly to my brain and I've learned the trick of it.


I wonder if C knows the trick.

Part of me thinks that I could drop her off in the woods and her fairy kin would come and claim her or that should stop forcing her to eat vegetables wrap her in gold cloth and flower garlands and build a shrine around her instead.

My logical brain reminds me that we've all had our near misses with wool socks on wooden stairs and daydreaming in traffic. Her 'almost' was closely observed and exhaustively documented but that doesn't make her survival any more unexpected than anyone else's.

And there's the other side of this thought too. If C is touched with magic, what's left for R? Was she less than magic or did some other kind of dark magic require a trade to keep C alive?

I try to tell myself that there's probably no trick to it at all. It's only a limited rebirth, after all.The lawn mowers will bring an end to this line of magical thought and remind me of the truth. All of these big doings, whether animal or vegetable, are stored inside vessels that are totally inadequate for the task. And when it's over, it's over.

Despite the plodding, I can never quite make it stick.

Last spring C and I took a walk around the neighborhood to enjoy the weather. As we approached our houe, the giant Linden tree at the end of the block flung its fruits at her. A cloud of potential in the guise of electric green bracts swirled around her tiny body as her hair floated up and she spun and giggled.

The hardworking, yardworking neighbors paused over their rakes and pruning shears to watch. "My tree just said hi to you, little girl," said the owner of the tree.

Angie's Bea says that dead sisters go into the trees. C says that they fly.

Spring is coming and I say, "Maybe."