Talking & Thinking

Aurelia wants me to accept that losing Natan wasn’t my fault. I do, but not in the sense of it having nothing to do with me, but rather because I realize I’m just a mortal and very imperfect. I mean, my body is the the one that went into labor to early – or maybe my cervix just opened too quickly – no one has the answers there since my contractions weren’t monitored. And as Dr. K said last week it’s impossible to know for sure now which came first. So yeah, I’m not culpable, I didn’t get the help I needed. That maybe makes other people culpable, and I’m doing my best to avoid that again by finding a better practice. So I can make peace with that.

But still I try to imagine why it all went so wrong. Why do I either have an incompetent cervix or did I begin full contractions so early? Why after I went into the hospital did everything stabilize (in a bad place, granted) and then suddenly move really really fast. So fast and perilously that a C-section became impossible? And of course, why did he turn breech so that the cord would suffocate him on his way out? These are the questions that have no definite answers, that we can only troubleshoot in this next pregnancy.

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Do not read the following as having any thing to do with other conversations happening right now in blogland. These are long-standing and very personal thoughts and feelings, particular to our life, conditions, and history, and inspired only by our need, once again, to discuss what we want out of prenatal testing. I could just go ahead with everything, but my hope is to bring in as little stress as possible, and even a blood test is taxing on my body for whatever reason.

After my miscarriage, some misguided people of course thought it would be comforting to say it was for the best, because there was something wrong with the baby. That appears now to be true, that it was a random chromosomal problem. It wasn’t for the best though, it was just inevitable. I’m sure some people might feel that Natan’s death was “for the best,” because he was 14 weeks early and might have suffered a lot had he lived.

I don’t want to give birth to a baby that will suffer a miserable life. That’s for sure. I listened to the doctors every day I was in the hospital tell me about the risks of a having a micro-preemie. I explained in response that I understood very well, but if the baby was born early, I wanted them to try and save it. I saw in my chart notes that the NICU doc wrote, “Mother seems very informed of risks & able to grasp likelihood of complications and disabilities.” I might be deluded. I have a nephew with spina bifida, who is paraplegic. I’ve done what I can to prevent that, but I won’t be heartbroken if we have a child with neural tube damage.

I know that spina bifida is one of the more attractive categories of disability. It’s neither a cognitive disability nor is it particularly disfiguring – my nephew is funny, smart, exceptionally good looking (really, I’m not showing a bias, I’d post a picture if I didn’t feel that wasn’t my place) and so great to be around. He’s a poster child. Coming from an active and athletic family, however, it has been a learning process for us – to come to value different definitions of a full life. Some of my older relatives & family friends consistently want to keep hoping that there will be a “cure” in his lifetime and that he’ll walk. I wouldn’t work against that, and I contribute to the Christopher and Dana Reeve Foundation, of course, but it’s hardly the foremost hope in my mind for him. I’m much more realistic.

Is there something wrong with me that I could never bring myself to say that what I want most is a “healthy” baby? Because honestly I don’t even know what that would mean – what that includes and excludes. Of course I’m not hoping for an unhealthy child. I know this could sound like just another example of how I nitpick over language. But it’s not. I don’t think anything of other people saying they don’t care about the gender, they just want a “healthy baby.” It makes perfect sense when other people say it.

I think I’m strange in that, while I’m not wary of having a child with physical disabilities, I don’t fear cognitive or developmental disabilities either. (Of course here I’m not talking about the horrors of disorders which cause children to live short lives of horrible pain.) I’m not deluded as to what this means. I remember thinking of a little boy, L., that I know, who has severe cerebral palsy when I discussed the risks for my baby with the doctors. His mother died during childbirth. I’m much more horrified by the thought that they could have both died and left his father alone than I am by his life now. The world of disability I’ve been introduced to by my nephew’s experience is beautiful and not something I fear joining, even if I would never hope for it.

Basilbean made the best suggestion in the comments of my Arianna Huffington Post. She said, “it is impossible to be without fear…it is how we behave in spite of the fear.” The only thing I have ever really feared is that my babies wouldn’t survive. It is really the only risk I’m passionate about watching out for. It was an abstract thought before, but I know now that that can happen to me. Yet here I am, plunging forward any way. In spite of my fear. I just hope I’m not irresponsibly condemning another little soul as I go.

Children

Not mine, certainly. The ones – the undergrads-, rather, who also at times sit in the library carrel I inhabit right now. I’m working, but distracted by the writings on the wall.

We have the typical signatures, “DHS 11/15/05.” “Brobs” was apparently here often from October to December. Some desperate student philosophized, “It’s just one grade,” another found that “Calc II = Hell.” A girl with bubbly handwriting lamented breaking up with her “perfect BF” for a “kid that smokes & wears an earring” who she may never even talk to.

I know they’re predominantly over 18, but some times I’m just so struck by how young they are.

Bless the Spring

Three years ago, when we lived near the railroad station, I saw one day in the spring a group of homeless people I recognized get off the train carrying duffel bags. Only at the moment did I realize I hadn’t seen them on the streets since the weather had gotten cold. The woman in her thirties or forties with blond hair who talked to herself. The elderly man with a cane that seemed to be made of duct tape. We were gone last year for research, so I haven’t seen them in a long time. I remembered, when it got warm, that I hadn’t seem them in the fall, but that could have easily been because I barely went out. But I wondered if I’d ever see them again.

Sure enough, the old man at least is here. But without his cane.

I don’t understand Arianna Huffington

So I’ve been thinking about participating in this “On becoming fearless” thing that inspired Julia to write a really beautiful post about fearing photos of herself, what this fear may have cost her, and how she’s overcoming it as she grieves for her A. The problem for me as I contemplate this is that I don’t understand the assignment. Because Mothertalk obviously involves a lot of mommy talk and some of us like to avoid that, I’ll summarize. Write about some way you’ve become empowered.

I want to do that. Really, I do. But at the moment I’m annoyed by prescriptive literature encouraging female empowerment. I think that if I did attribute my accomplishments with learning to be “fearless,” I’d be lying. I think much more of it has been luck.

I have a fine motor skills disability, which means a lot when you’re in elementary school and everything is judged for “neatness” and “speed” and when teachers put so much bloody emphasis on holding your pencil correctly. I struggled a lot – in fact I remember writing in my “Ramona Quimby” diary in fourth grade that my worst trait was being stupid. But then, suddenly, when those things mattered less (around middle school), it all changed. I was smart. Straight A’s from then on, high SAT’s scores, great college, great grad school. I didn’t do this for myself, certainly I worked hard, but structural elements fell into place. I finally had the kind of intelligence the educational system valued and it rewarded me. But I never forgot what it was like to be on the outside of that.

Being “fearless” (i.e., believing in yourself) isn’t enough to fix an inflexible curriculum, cure a clinical eating disorder, escape an abusive relationship, make your relationships more satisfying, get you out of poverty, help you overcome seriously sexist superiors or coworkers, cure cancer, or, as is most relevant to me at the moment, get you a live take-home baby. Structural problems, folks, are what I believe these to be and those are the problems I want solved – although I’d also like to permanently rid us of bourgeois prescriptive literature.

Some of the tools of positive thinking may help, really. I believe that. But I’m an incredibly positive thinker under normal conditions. I smile constantly. Smiling and not fearing, however, is not going to get me out of this pregnancy safely and successfully.

If you’ve guessed that this rant was only inspired by Huffington but is really about something else, you’re right. I feel like an outsider again. My body once again has revealed that it won’t fit a certain mold. My pregnancies won’t be normal and I can’t cooperate with the general rules of how it’s supposed to be. Other people, with absolutely no experience in this hell, are encouraging me to relax, to remember that stress isn’t good for the baby. Well, thank you, for trying to create yet a new source of fear. I already expend considerable psychic energy accepting my rational knowledge that I didn’t kill my son, because technically my body actually did. And then I wonder, are you trying to tell me something? Does someone out there think that I did this with my mind? Well, thank G-d, I can rely on my strong sense of self to know that’s bull. But does it help some people out there to think that it’s not, and that that’s yet another reason it won’t happen to them?

What Dr. K said

I was just going to respond to Niobe’s question about what Dr. K told me to expect this pregnancy in the comment section, but then it got really long so I thought I’d just post it.

She told me she expects that I’ll be very anxious during this pregnancy, but assured us that they want to help us through that. I described to her what happened in my last pregnancy, the dynamic cervix and the frequent contractions. She has my records but she wanted to hear how I would describe it all.

She said that my small frame and my history of contracting a lot in my last pregnancy will probably mean that it will happen again this pregnancy. She said she knows that will be very upsetting, but that we will watch it very closely with frequent appointments and many many of those lovely trans-vaginal ultrasounds.

She wanted more information about my labor, more details about the treatment choices made at the hospital, especially my reaction to the medications. She was careful not to say she disagreed with anything the hospital doctors did, but said that with the benefit of hindsight we can make different, hopefully more effective decisions (what those would be will depend on circumstances as/if they happen). Of course the first goal is to have me go to term without problems.

She said we would definitely do the cerclage, and that they have great success with that. Of course I know that it’s not 100% effective, but I want some optimism. Regarding progesterone treatment starting at 16 weeks she wanted to consult with the whole team at the practice, and we’ll talk about it next Friday. They’ve had great success with that too but she’s wary of deciding right now to do it, before we watch how this pregnancy progresses.

She assured me that if I called with complaints about contractions, I would be seen right away, they wouldn’t just assume B-H. That seemed to bother her, that I wasn’t seen enough about that, and that Dr. M’s office didn’t make an appointment with me right away after I’d gone to the ER with contractions at 19 weeks last time. But she was very diplomatic in saying that that’s the benefit of hindsight.

Aurelia asked why we had an appointment with a nurse anyway. I don’t know why that is, but it was that way at Dr M’s, and at every other office I called. The nurse at Dr. K’s office, S., though, was a thousand times nicer and more knowledgeable than any of the nurses at Dr. M’s. I felt like she took all my anxieties seriously and that she definitely understood why we are struggling to be excited and at ease over this pregnancy. Even the receptionists were nice and supportive.

Of course, I don’t want to go through this pregnancy fearful and nervous the whole time, but I certainly think it’s understandable and I’m so relieved to be treated like that’s normal under the circumstances, rather than a burden and some sort of pathology on my part.

Relief

My calendar said my appointment was today at 11am. I for some reason was thinking 1pm. The calendar was right. Whoops. But the new doctor’s office was so nice about it and got me in anyway. That was a relief, since I bet it’d have been a disaster at the old place. After the first mention that I was late, no one said another word about it (until I apologized to the nurse).

Not only did I get to have the nurse’s appointment I was scheduled for, but she sensed our anxiety and got the doctor to come in and see us! Dr. K did an ultrasound, all looked good so far, and then she spent a long time talking to us about what happened, my fears, and what to expect. I couldn’t believe it – we didn’t even have an appointment with her. And I’ll still get to see her again next Friday.

Dear John – a break up note to a doctor

I don’t call Dr. M by his first name, nor is John necessarily his name. But I just made a final break with my old doctor. It actually makes me very sad, even though it’s for the best. I wrote him a two-page letter explaining in detail why I’m leaving him. I told him it’s not him, it’s his nurses. I wonder if he’s heard that before.

I wonder what he’ll do about it.