Looking Back

“I can't know what it's like to feel like my body failed me.”

It sounded so strange spoken right out in the open--opinion converted into fact. He didn't come up with this idea on his own. He was paraphrasing me. But, hearing the words come out of T's mouth, I suddenly realized that they aren't true. I don't feel like my body failed me.

I wish I could blame it on my body—on some physiological quirk beyond my control.

I feel like my judgment failed me.

So pleased was I with the valiant effort I had made to rescue my girls, I paused right in the middle of the tracks to admire my reward. C--feisty enough to defeat a malfunctioning umbilical cord. R--patient and strong—willing to suffer to save her sister. And the tiny diapers and pajamas—I guess the train that smacked into us wasn't as taken with them as I was.

I should have asked for another week. I should have stayed at her bedside for every minute of those twelve days. I should have held her when she took her final unassisted breath. I should have stopped them from cutting her open for that pointless surgery.

My body was perfectly capable.


I didn't think that it would go this way.

I didn't think it could happen to us.

I didn't think.

And now I can't forget.

Reminders

Looking at it now it's so obvious--the truth that we were too hopeful to see and that the doctors and nurses were to polite to share.

The instinct to test my mettle is irresistible--like putting weight on a sprained ankle or running your tongue over a sore tooth.

So it sits on my desk.

It kills me a little bit every time I look at it but it keeps her alive.

Looking Ahead

Today I drove past "R's Playground" and saw a girl, maybe 13 or 14 years old, playing alone on the swings.

When we donated the playground equipment in R's memory our idea was that we would be able to see happy children doing all of the fun things that R couldn't. Seeing this girl, just on the cusp of her teenage years, reminded me of the milestones that R would miss and that C would have to meet alone.

During my pregnancy I was thrilled to be having twin girls. Growing up I had always thought that a twin would make life easier. Pathologically shy and introverted, I longed for a partner who could see me and accept me exactly as I was. I pictured my daughters lying in bed at night sharing secrets in the dark or sharing clothes or supporting each other through the challenges that were sure to come.

For all I know the girl on the playground could have been waiting for her friends or just enjoying some alone time in the sunshine but I can't help thinking that she was lonely.

And I worry that C will be lonely without her sister.

Congratulences?

When I was younger and considerably more carefree my friends and I would make up words that we felt were missing from the English language. These creations corresponded to the challenges and trivialities of our days and then found their way into our everyday use.

Several of them were developed at the outdoor education center where I worked immediately following college and are fittingly British schoolboy humor-ish. Spluff – when the tide is rising and comes to just-barely crotch level. Lunx – time between two events that is empty but too short to be filled with anything other than ass-sitting. Congweff – doing something (ahem) 4 times in a 24 hour period. I met my husband around this time and he brought a word of his own to the conversation—tamardiggan – finishing a long and arduous task, normally shouted triumphantly.

These were the words of my youth--the language that was needed to capture and codify our exuberance.

Since R died I’ve felt the need to create more new words, maybe even a whole language, to capture the new reality.

Out here in the grieving parent blogosphere the wordsmiths are hard at work, twisting our surprisingly optimistic modern English to fit these new purposes (since when does awesome only apply to things that are overwhelmingly good?) A lot of work has been done on new adjectives to harness knowing rage – craptastic, suckitude, fucktacular. I use all of them frequently but haven’t been able to make any of my own contributions. Compared to most of the folks writing on the subject of loss and misery I’m quite the hack but, I don’t think that’s entirely the problem. Our situation is fairly unique, even in these circles--thus, the lack of words to describe it.

What do you say to someone simultaneously having the most amazing and most horrid day of their life?

What is the name for a twinless twin?

What is the word for missing someone whom you never really met?

What Happened?

I don't spend much time talking about the girls. For the most part, the people who need to know have already heard the details. As a courtesy to anyone who happens by, however, I'll fill in the backstory.

R and C were spontaneous monochorionic, diamniotic twins. In other, words, identical. We have no idea why our little zygote split into two separate beings (though I may share some theories later on). It's not genetic, we did not employ any fertility treatments or mysterious rituals.

The pregnancy progressed smoothly until around 28 weeks when C (then known as Baby B) developed a condition called no-end diastolic flow which led to intrauterine growth restriction (IUGR). We found out later that these problems were a result of twin-to-twin transfusion syndrome (TTTS). Without getting overly technical, identical twins typically share a placenta and frequently develop malformed blood vessels that result in unequal distribution of blood flow and resources. Simply put, C was starving and R was getting overfed.

I was hospitalized during the 29th week of my pregnancy and spent 11 days with 24-hour fetal heart monitoring. Although C showed some progress during the next couple of weeks, she was still in danger and the doctors suggested that we opt for a planned c-section at 32 weeks. My husband, T, and I reviewed the information they provided about premature birth and decided that the benefits of an early delivery outweighed the risks. The doctors scheduled the appointment and the girls were delivered during an uneventful surgery on August 14 and moved into adjoining rooms in the NICU.

We had two days of relative relaxation with our perfect, tiny girls. Two days of believing that we pulled the wool over death's eyes. And then lightning struck.

I have a vague recollection of the cardiologist appearing in R's room and explaining critical pulmonary valve stenosis and balloon catheterization. The there was something about a fortunate case of PDA keeping R's blood flowing and a prostoglandin drip and a race to reach 5 pounds so that the doctors could operate. Then a whole bunch of tubes, wires, alarms, and updates.

On the morning of August 24 I arrived at the NICU to find C sleeping peacefully while R tossed about. The nurse suspected infection and my heart sank. The cultures wouldn't be ready for 48 hours but they suspected necrotizing enterocolitis (NEC).

I don't need to explain NEC here--there are plenty of descriptions on the internet and each one will make your blood run cold.

Within hours we were on our way to another hospital, miles from C, R on a vent in an ambulance.

Two days later it was over. Exploratory surgery confirmed the doctors' worst suspicions. NEC had completely destroyed R's intestines and stomach.

We unhooked the vent around 4PM on August 26th and waited for her tiny heart to stop beating. The nurse cried. The surgeon apologized. We told R she could finally rest.

Then we signed the necessary papers, collected our memory box, and dashed back to little C, terrified of what might happen next.

One week later we hugged all of our nurses and doctors good-bye, packed the 3.5 pound C into her carseat and headed home to figure out how to live with sorrow and joy.