train of thought

On your best day we got the call that doesn't honor bed time protocol.
I handed your twin to Teta, said you were not well, and left in my frayed pajamas.

I was between two train tracks, the ground started to rumble beneath me.
We drove to the hospital, that place of avalanches, running red lights and chanting
It can't end this way.

We ran to you, the place where you exited my body a horizontal burn radiating
Men compressing your chest and nurses calling out the numbers read on your blood
The tea leaves of your X-ray

Chaos as the rumble grew louder, trains coming in on either side of me
Your father paced outside of your room and I stared dumbly at the scene of your
death unfolding

I don't think we can get her back, your surgeon said.
in the moment that the trains passed me simultaneously
Pulling in opposite directions at the center, not holding.

Opening doors down the dark corridor

I feel as though I've become aware of dimensions of consciousness that were previously unknown to me. There's a darkness I've come to wear on my soul.

Mapping it Out

Every day, I spend hours thinking about Eva. Each day I awake with a single desire -- to fully map the terrain and boundaries of my grief. I just want to know where it begins ... and where it ends. So on a daily basis I run my fingers through it. I go over it and through it. I come up with daily metaphors to try to understand it. But I always come up with very little. Almost nothing.

I want to create something good out of loss. I would endure any ruin to have her back, but short of that, I am desperate to have something good in her name and memory.

call all good things Eva

A Cancer

I know now that Eva's death will be my slow metastasizing cancer. It will be my undoing. What started on April 4th and what will finally end when I do. That's what this pain feels like. That's what I fear I am becoming. I walk through every day deadened by this pain. I think thoughts that eventually lead me back to the chair I sat in while holding Eva's dead body. I marvel at the person who went through 29 days in a blind rush and panic from one child to the next, hoping to give each one his or her due. Eva will never fucking get her due. I should have been with her every moment she was alive. Would it have many any difference in the duration of her life? I wish I could just understand why she died.

I want to tear my eyes out, but mainly I want to carve holes into my left arm for Eva. For the side of my body she lived in. Should I have waited to deliver? Why did she arrest on the operating table? Did someone's negligence cause her death? If they'd given her anticoagulants on April 3rd, would she be alive today?

At so many moments her course could have changed. At so many moments she clung to life by a thread. So we shouldn't have been surprised when she died. But we were.

I'm disgusted with myself for writing this pity party like a goddamn teenager.

On Pain and Suffering

In the hospital, when I was in pain, a nurse would always ask me to quantify my pain on a scale of 1-to-10. I found that to be a very weird and confusing exercise. I had to call up all my experience with pain and what I could only imagine the extremes of physical pain might be, and then chart myself along that continuum somehow. Putting a number to it seemed to give the pain a definite value, but that value was meaningless in the face of my own subjectivity, inexperience and the complete inadequacy of the right side of my brain.

My friend sent me an email in which she claimed (in so many words) that what she's going through pales to my suffering. That statement, albeit well-meaning, is utterly futile. I can't a) know the boundaries of suffering in my own life, much less understand its possibilities in an empirical sense, b) quantify this payload of pain to any other in my own life, much less to any in the life of another human being. So how much pain am I in on a scale of 1-to-10? Go f**k yourself.

The interminable march of days ahead

When Eva first died, I thought I could handle the grief. The initial pain was searing, a great shock, but I felt that I could make room for the weight of my grief. It could find a space in which to settle in. But I had people around me then. They knew I was grieving and expected and nurtured my grief. It's been 3 months and 10 days. It's harder now in some ways. I feel as though my window to grieve is closing. The time to "move on" has come. I have nowhere to move on to without this beautiful baby of mine who will never grow.

July Update

The girl has made great progress in physical strength in the past few days. She's doing great with trunk strength, managing to hold her self at nearly a 90 degree angle. She's even started to roll over, from stomach to back. She really doesn't like tummy time I guess! I've come to realize, though, that we will likely face some challenges with her. I think she's going to be very attached to me and it won't be easy to start her in daycare, which we're currently looking to do at about 10 months (or January, if all pans out).

The boy also continues to amaze, but on the cognitive front. The other day, he told me he wanted to move because our garage is too messy.
Today at the park, a parent said he was taking his son to get I-C-E-C-R-E-A-M. The boy immediately responded, "Why is Willy going to get ice cream?" Our tools are quickly being diminished...

Therapy

I am starting to come around to the idea that this is a free form of therapy for me. And it is a way to make something of this experience and all the resulting pain. Sure, I could go to a support group but they meet during the precious short hours that we are all together as a family. I could try to see a therapist, but when? I have the girl all the time and cost is a factor. My luxury is staying home with her, since we're skimming savings every month to do it.

So this will have to do, a place where I can let it all hang out.

My sweet girl is sitting beside me as I type this, trying to sit up.

My Eva... well, she's in a malachite box on a shelf over my headboard.

I was thinking of the night of their birth, how my favorite nurse, G, asked one of the NICU nurses to take pictures of the babies so I could see them. The resulting polaroids were wholly unsatisfying, but the thought was wonderful.

I remember the NICU, the long corridor between where each of the girls were. It killed me that they couldn't even be next to each other. The NICU was such a cold place. My hands were so dry from all the washing that they burned when I used the anti-bacterial foam.

I remember the few times I got to hold Eva, how heavy she felt, how completely she sank into my arms. I knew she needed me.

Changes a' Comin'

I've noticed in the past few days that the girl's eyes are changing color. They are starting to look a little more yellow, which is to be expected, considering her parents and brother all have some variation on brown eyes.

In other news, she has a double ear infection.

A Daughter's Worth

I think that I provided my mother with some consolation. Living with the daily challenge that my autistic brother posed made me special to my mother. I was the good kid, I always knew, with all the benefits and pain that that entailed. She recently told me that she saw me as more of a peer, a co-mother than a daughter.

My living girl is my consolation in Eva's loss, but as I've written, she is also a daily reminder of just how precious Eva is to us. Eva and her twin would have been more than their sum, I can't help but feel. Yet, I would hate to imply that my survivor is diminished in her twin's absence -- that her potential is impacted. Quite the contrary, she is what's left of what I think of as a vast treasure and I clutch her more tightly because of it. But surely, her trajectory has changed. I know mine has. What will become of this good kid's good kid?

A Twin's Loss

The girls are two months old today, in gestational terms, anyway.
As time passes, I am filled with joy and sadness in equal measure, for the person my living daughter is becoming and for the person Eva would have been. The more I grow to love my survivor, the deeper my pain for Eva burrows into me. The ones who are here make clear what we're missing.

But what I truly dread for our future is our daughter's realization of what she has lost. Some day, we'll start the conversation with her about her identical twin. I try to imagine what it would be like to know that someone with exactly my DNA and exactly my start in life will never be known to me again. It's inconceivable. I just hope her loss doesn't define her and our hope our loss doesn't define us.

Standing on Ceremony

I have found that while I naturally resist ceremoniousness, I have developed a newfound respect for ceremonies. They, when embarked upon judiciously, turn the book of one's life from a paperback to a hardcover.

It seems silly now, but before we were married, the man and I dreaded the idea of a wedding. Part of it was the ridiculous wedding-industrial complex that we wished to avoid, but part of it was a real fear of bringing our very different families together. But what became apparent to me almost as soon as the day was done was that the experience of the wedding created a bond between us all. It enabled our relatives (especially the more socially conservative ones) to recognize us as a family unit. Never mind the fact that this man had been in my life for more than seven years by that point. That day made "US" real and definite to our loved ones and remains a threshold, a part of our shared history.

With Eva's service, we were able to put another distinct marker in our lives and the back cover on hers. The ceremony enabled us to honor her life and recognize and mourn its untimely end. It served many purposes, actually. For those in attendance, it provided a window into our lives and perhaps made Eva's story more real and definite to those who never had a chance to meet her. It has not given me total peace, but I think the best I can hope for is a tentative one.

Be Careful What You Wish For

When we planned our family, we decided we wanted 2 kids, about 3 years apart. Though I am not sure we ever discussed it, I think we both wanted to have 1 of each -- a boy and a girl.

We have what we wanted. We just never knew how painful it would be to get here. It feels like a Greek myth wherein the dumb mortals are taught a wretched, powerful lesson by the gods.

I don't know whether I should feel humbled or just beaten down.

The Itch I Can't Scratch (to Satisfaction)

I have a problem that I am hoping will subside. I want to bake. Sure, I want to eat what I bake, but I have been really enjoying the baking process and seeing the results of my efforts, Making a great cake and seeing others enjoy it is really cool, particularly because I think I've made some tasty stuff lately. Oh, and I like to eat treats, too! But, it's impossible to manage one's weight with too many decadent foods around. Even the man, who runs a whole lotta miles every week can't seem to run enough to run off all the sugary calories we eat.

So, I promised the man that I would do no baking until this weekend, for B's baby shower. It's going to be a tough few days. And how will I limit myself to just one or two things?? Perhaps, however, I should turn my energies to all the funky grains I came home with yesterday.

Wheatberry, here I come.

Refrain

Since Eva died, I've been schizophrenic.
I have seventeen different thoughts every second, but some thoughts have become refrains.

Grief is a relentless predator.
My third child died three weeks before my thirty-third birthday.
There is no "survivor" without Eva.
The FACT of her suffering...
What if I'd waited to deliver?

Invisible and Unspoken bonds

About a year ago, a heard of a former co-worker whose wife was due to deliver their first child. Tragically the baby was stillborn due to a cord accident. I had never been very close to this colleague, but the story of this baby really stuck with me. How could one not empathize with someone in these circumstances. All these months later, we've been through our own scare related to cord accident. We lost one of our beautiful babies. We're bonded now in a way, though he likely doesn't know it and we haven't even been in touch in many years.

And Islands of Sanity

The complexities of this pregnancy have required some emotional acrobatics. In order to avoid being a total nutter each and every day, I create what I call small islands of sanity for myself. These are the places to which I retreat, my private fall back positions. It's fine and I'm relatively okay, as long as I don't lose any more ground.

Well, if I can't have a normal, healthy pregnancy, at least I can rest assured knowing that I'm doing everything I can to bring these girls to viability.
Baby B has a long, hard road ahead of her, but at least it looks as though Baby A has a good shot.
I have to be here in the hospital away from my family, but I'm getting the best possible care -- a level of care, in fact, that most people in the world in my circumstances could never imagine.

And that brings me to a a topic that I'm not even sure how to address. After many weeks here with little to do but think, I've come to realize that I am getting an extraordinary level of care. I will be in the hospital for over 10 weeks when all is said and done. The reason: to have the babies closely monitored in case the start to show signs of distress. In most places in the world, women in my situation would be sent home and told to hope for the best, if they ever got the mono-mono diagnosis in the first place. I did a little back of the envelope calculation and figure I've blown through the amount we have paid into the healthcare system in the form of insurance possibly within the first week or two of my stay here. Although hospitalization is the current standard of care in this country, I can't help but think about the inequities this leads to on a global scale. I'm in no way suggesting that the best care shouldn't be had, I'm just feeling guilty and confused about being one of the very few who can attain it.

A Thousand Indignities

I have been here in the hospital for 7 weeks. Usually, there is not much more to do than think (or brood or obsess, as the case may be). For me, adjusting to my stay here and maintaining sanity to the extent possible has required a slow but determined relinquishment of the illusion of control.

If you've never been in the hospital yourself, be aware that hospital rooms are not havens of privacy. Anyone with any pretense of business in your room will knock and enter, enter and knock or just plain enter.

Early in my stay a flurry of entrances would habitually occur and happened to coincide with the time of most satisfying sleep 6-8 a.m. or so. The first visit usually comes from the resident or med student. "Any cramping? bleeding? leakage of fluid?" At least 3 times per day, these questions are posed. The only deviation took place one day when a med student asked, "Is anything coming out of your vagina?" [insert *pregnant* pause here] Some days, the questions are even accompanied by a physical exam, featuring frozen sardines in the role of fingers.

These visits are followed by the delivery of breakfast, clean linens, fresh water, morning meds, etc. etc. Strangers in your room while you're sleeping? Yeah, at least initially, these visits were highly jarring.

One kindly resident once asked me how I was adjusting to my stay here. I told her I felt like a project that was being managed in pieces by many people, but that no one was assigned the role of project manager. I certainly didn't feel like the manager.

A long time coming

How does one bridge the gap in 6+ month hiatus? Especially when those six months have been pretty darn significant in the course of my family's life. I guess it's fitting that my last post was about parenthood. And butt sniffing.

I am pregnant.
With twins.
Who are monoamniotic.
One of whom has Hypoplastic Left Heart Syndrome.
And I've been in the hospital for nearly 6 weeks so that the twins can be monitored closely. I'll be here until the twins are delivered, which will hopefully be on February 28th.

Pheww. I'm plumb tuckered out. See ya next year!

Parenthood is....