Archive for February, 2011

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The personal is political

February 18, 2011

I’ve been watching some of the news from Congress as the Pence amendment is debated. I don’t usually talk politics here; that’s not what this blog is generally about. But the death of my baby has given me some deep convictions about women’s health, and about the right to choose/right to life debate. I’m struck, so often, by how the stories that get told most loudly tend to be so different from my own. So here are two of my stories, two personal experiences that shape my political stances, one you probably know if you read here, and one you probably don’t.

When I first met N., I was 28 years old and I’d never had sex before. I had fooled around, but I didn’t date often, didn’t trust easily. The gynecologist I’d been seeing since high school had explained that it was highly unlikely I’d be at risk for cervical cancer until I was sexually active, and while I’m sure she didn’t intend for me to put off gynecological exams for years, this is what ended up happening when I moved to a strange city & lived off a graduate student’s stipend and then started work at a bookstore. And then I met N. I’d never wanted anyone like that before, never felt that crazy, sudden, deep connection and infatuation. All of a sudden, finding birth control was necessary and talking with a doctor was needful. I called the health care providers listed on my insurance, but none of them were making appointments with new patients for months.

So I called Planned Parenthood. I called, nervous as hell because I was embarrassed to be talking about sex, because I felt foolish, needing to make this kind of call at my age. But I knew they were there to help women, and this made it possible for me to pick up the phone. A few days later, I walked into that waiting room, past a picketer or two outside who told me I didn’t have to go in there (I’m pretty sure the picketers thought all women going in were there for abortions), and sat in a waiting room filled with all kinds of women – some there alone, one there with a boyfriend who looked more nervous than me, one there with her mom – and waited for my name to be called.

I don’t remember the name of the doctor who saw me, who gave me my cervical exam and talked to me about birth control options, but I will always remember the respect she showed me, the close attention she paid to my questions, her kind and sensible manner. I felt reassured and safe. She made it easy for me to be safe and responsible and to take care of myself. This is the kind of service Planned Parenthood provides all the time. They are infamous because of abortions, but so much of their work is done preventing abortions by providing safe, affordable, respectful care for women who may have a tremendously difficult time finding care (never mind safe, affordable care) elsewhere. I wish more people knew about this side of them.

My second story is this, that my son was diagnosed with a severe, life-threatening (and, as it turned out, life-ending) congenital defect in my third trimester. We wanted him, and there was a chance he’d survive that we were eager to take. We fought like hell for him. But by the time we knew what was wrong it would have been illegal for me not to carry him to term. After taking ourselves to another city for specialized care, the neonatologist we’d gone to see because of his experience with CDH mentioned that if the diagnosis had been determined sooner we would have discussed whether or not to continue the pregnancy, and I had two distinct reactions: one was denial that we would ever do anything but try for a full life for Teddy and the other was the realization that I now had no choice.

In some ways, it was a relief to have my choice confirmed by the complete lack of legal alternatives but if I thought about it too much, it made me feel trapped, made my choices seem less important, less mine. I still feel strongly that if we hadn’t tried all we did to save my son that I’d have been shattered beyond repair by his death, but this is partly because no one knew how good a chance he’d have once he was born and because many (not enough, but many) CDH babies do survive. And I’m still grateful for those last days with him inside me, for that time I had to get to know him. But there is also this fact: N and I chose not to extend Teddy’s life through drastic measures, chose not to submit him to the discomfort of surgery and being hooked up to ECMO and given blood thinners so that a machine could breath and pump his blood for him. We chose this because we loved him and wanted to spare him pain, because his doctors were very clear that his chances of survival were barely chances at all, and because we wanted so much more for him than survival. We were allowed to make this choice because he was our child and we were his parents and because he was already born.

It hurts me that women are legally forced to carry babies to term when their babies have conditions that are incompatible with life. I know many mothers choose to carry their babies to term knowing they’ll have to say goodbye after pregnancy, and I think this is an amazing and admirable choice. But I wouldn’t wish a third trimester full of sadness and shock and bedrest and multiple non-stress tests and visits with doctors on anyone, and I understand why many parents might not want to put themselves through all of this. I also understand that there is no room in the political debates over abortion for stories of babies who are loved and wanted but who are terribly sick. And, while abortion remains such excellent political fodder (it’s the source of much funding on both sides), it will remain incredibly difficult to talk about real people facing real, heartbreaking situations where the only makers of choices should be parents and their doctors.

It also hurts me that so much energy and time and focus and vitriol and passion is spent on the abortion debate and so few resources, comparatively, are spent on finding ways to prevent stillbirth and congenital defects like CDH. I wish Pence and the like would stop using abortion as a political rallying point. I also wish I were a super-stealthy computer hacker who could siphon monies away from, say, Halliburton, and into the coffers of Planned Parenthood. But what I wish most of all is that real energy – personal and political, and real cooperation – medical, political, and financial – was being spent on improving maternal/fetal health and on giving us a world where no mother or father has to lose a beloved child due to illness or violence.

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Thanks

February 8, 2011

Thanks so much for the comments on my last post. I don’t know whether to be disappointed that this seems to just be a heaviness that most of us just have to carry for, well, the rest of our lives, or relieved that it doesn’t seem to be something particularly wrong with me. But it helps, and helps tremendously, to know that I’m not alone.

I wish us all more healing, more lightness, and more strength to get through the days when moving from room to room or doing simple necessary tasks feels like trying to swim through treacle.

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Heavy

February 4, 2011

Do you find yourself having more trouble doing things you need to do (making phone calls, sending email messages, starting projects, etc.) than before your loss?

I do all right, but so many days I feel like I really have to push myself, to get past some sort of initial wall of panic or malaise that wasn’t there before, and I’ve grown accustomed to it, but I’m not sure it’s how things are supposed to be. Frankly I’m tired of needing to give myself so many pep talks just to get through a normal workday.

In so many ways I’m happier than I’ve been for a long time. N and I are getting some more together time these days, Dot is doing well at the childcare center, work is interesting, and I’m grateful for all of it.

But I still need to attack so many mole hills as if they were mountains to get things (the work, the parenting, the partnering) done.

It may just be that being strong takes a lot of, well, strength. Of course, it may be time to talk to the doctor, even though that means I’ll have to talk to other people, too.

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Happy Birthday to the Bathtub Oracle

February 1, 2011
Bathtub oracle, 1.

Bathtub oracle, 1.

At some point in the last two months, Dot began picking up random objects – toys, pieces of paper, shoes (hers and ours) and carrying them into the bathroom. She’ll dangle her chosen object over the edge of the bathtub and sometimes talk to herself a little about it. After some consideration, she may drop whatever she’s holding into the bathtub, or she may take it out, look at it again, and drop it on the bath mat instead.

Bathtub oracle, 2.

Bathtub oracle, 2.

This all means something, even though I don’t know what.

At the end of most days, there are new collections of things in the bathtub. I’m not sure if she’s trying desperately to communicate with us or if this is some baby version of casting runes or speaking the wisdom of the gods (possibly the bathtub god?).

It’s funny and odd and mysterious. I knew, when she was born a year ago that I loved her with big, deep love, but I didn’t know she would be so funny and odd and mysterious.

I didn’t know how scarily smart and mobile she would be, or that she’d enjoy hauling around large objects (the laundry basket, the bath mat), or that I’d love her little toothy smile as much if not more than I loved her little gummy smile. I didn’t know that her baby kisses (open-mouthed and involving usually quite a bit of drool) would make me melt in quite this way.

Bathtub oracle, 4.

Bathtub oracle, 4.

It’s bitter-sweet because I can’t help but wonder what her brother would have been like. If he’d have been this active or if he’d have been more laid-back. If he’d have patted us on the back while giving us hugs, too. I love Teddy, but I’ll never be able to love him this way because I’ll never know him this way, never see him becoming more and more himself with every day and week and month.

But this is your day, Dot. Your day to be amazing, to be a whole year old. I’m so happy you’re here and that I get to know how smart and funny and sweet and mysterious and strong you are.

My froglet, my bumblebee, my little bathtub oracle. There’s a chocolate cake with cream cheese frosting waiting for you at home, but I feel like there should be fireworks, too.