Thursday, January 31, 2008

Birth Day

 

When A was born, JD saw him first-- my still huge stomach was blocking my view. When the nurse lifted him to my chest, he was so so beautiful, and what came out of my mouth was "Oh, baby..." In English.

We didn't pick A's first name until after he died. It was the name at the top of the list, but we didn't settle on it until after. He didn't have a middle name until some time after he was born. He looked to me like he was missing a middle name, and that was one problem we could fix. His name, first and middle, is big, strong, full of sound. Such a big name for such a small boy.

I sang one song to A. The song that I sang hundreds, probably thousands of times to Monkey before. A sweet lullaby from a very good Old Country movie, the lullaby the heroine sings to her doll. Monkey's name fits easily into the song. A's not so much, but I made it work. I hit the high note, twice, and almost made it all the way through, but I had to whisper the last two lines.

Day 366-- Wednesday, January 30th, 2008

Thank you, all, for your generous support in the last post. Thank you.


The roses are from the big bouquet we took to the cemetery. It was a tough visit for Monkey, but in the end I think it was good for her to go. I will try to tell the story of why she has never been to the cemetery before and how we knew it was time to take her sometime soon. The pebbles are from the various trips we took since A died. I am not sure whether we will take them to the cemetery once we install the plate or get a big glass bowl to collect all the ones we will bring home over the years.

The puppy is something I picked up on one of my first trips to the supermarket last February. I remember thinking as I was moving up the isle who would buy something off of those annoying end of the isle extraneous island displays anyway? Turns out, I am. The puppy was sitting there with his head inclined just so, looking both mischievous and a little sad. A cute sweet troublemaker-- the way I could only hope A would've grown up to be. I had to take the puppy home, and I cried many tears while clutching him last winter and early spring. Monkey went to sleep clutching him tonight.

Our dining room table surface is glass, and that means that you can see the reflection of the candle in the surface of the table.

Four friends came tonight (we talked about a lot of things, mundane and dead baby specific, and one couple stayed until almost two in the morning), and a few more are coming tomorrow.

We are doing OK, I think.

Tuesday, January 29, 2008

Paperchase on the precipice

So here it comes-- the precipice. A year ago I was going to sleep and feeling pretty sore from the intense acrobatics A had engaged in that evening. I had had a good day, including an event that my old office puts on every year. Every year before last it had failed to include a very important class of people. A coworker and I argued forcefully for the inclusion, and we got it. So a year ago my former colleague was included in the event, a first for anyone with her job description. The event went great, and I was thrilled. In the evening A was doing so much turning that I asked JD to bring his guitar and play for us. Monkey danced. Monkey and JD came to feel A kick.

I was thinking recently, as I was reflecting on all the kind and thoughtful comments on my entries about the yahrtzeit and the final week, the comments that all urged me to keep doing what I need to be doing, so I was thinking that the firsts don't end with the anniversary. Cobblestone said it, and I have seen other widows say it too-- second year, at least the start of it, can be tough going, tougher than the first to some extent. For me there will be the anniversary of the funeral, and in a weird twist of timing my OB appointment is scheduled for then. There will be, I am sure, other days that will sneak up on me. Maybe something about the milk, coming or going. Maybe when I went back to work. And then there was the day we got the autopsy report. I don't remember the date on that, but it was a little more than four weeks later.

So I was thinking about that report. I found out the report existed on a Friday, but didn't get to hear from Dr.Best until the next Monday. I didn't get a copy until my six week follow up appointment. And a weird thing happened then. I knew what it said, in broad strokes from the phone call. As I am a scientist, I was actually looking forward to reading the report. I thought of reading every word, asking questions, knowing everything there was to know. And I did, later the day of that six week appointment, at my desk at work. At least I started to. I read the first of the three pages. I started on the second. And then it occurred to me, anew, what I was reading. And I had to put it down. I remember being on the phone with Aite later that day and telling her that it got to me, that it wasn't something you are supposed to have-- an autopsy report on your child. So maybe don't read it for now, she gently suggested. I won't, I agreed. And I didn't, for a while.

Another piece of paper-- the birth certificate. They gave us paperwork for that at the hospital last year. For nearly a year I didn't know what I wanted to do with it. It seemed pointless to get one. I didn't think I wanted it. There was a big discussion of the issue on the deadbaby blogs some time in the spring, a lot of moms told stories filled with love and pain for why they got one or why they wanted one, and I was just nowhere with it. Aite told me then that A has such a lovely name she'd get it to just have another paper with his name on it. That touched me, but didn't move me to a decision. She also said she thought maybe my future children would like to see it some day. As weird as it sounds, that was the first thing that made me realize there will be (I hope, I hope) children in this house one day who won't just know about A, whom we will have to tell.

Last week I suddenly knew what I wanted. I wanted to get the damn thing. Not for anybody else, but for myself. For the weirdest reason-- I realized that I wanted the next one we get after this, the one for our next child, to be the third one we get. Not the second. Stupid, right? A gesture is all this is. But this is the gesture I want to make.

Thus commenced days of looking for that folder from the hospital, the one that had the paperwork. Not by my bedside, not in my office, not in JD's office, not in any of the random places we had thought to look. Had I written this entry yesterday or over the weekend as I originally meant to do, it would now conclude with me telling you that I will probably have to call the hospital for a replacement thing, soon. But I am writing today, and today I gave up and called the hospital.

Labor and delivery receptionist was not warm, but she was careful and she said she needed to transfer me downstairs, to the birth certificates office. She gave me their direct line too, just in case. The receptionist on the floor where the birth certificate office is (which turned out to be the post-partum floor-- oops) was far less with it. She wasn't being mean on purpose but she was ignorant and kept telling me I can't have that-- it's only for babies who are born alive, and was mine not alive? not even a little? I wish I was kidding. I wish. But I didn't scream at her-- way to go maturity. I was pretty confused, actually, thinking this can't be the person in charge of the birth certificates. And eventually she clarified things by saying that she will transfer me to the birth certificates office. That explained it.

When I finally got to talk to the person actually in charge, she was kind, and professional and very helpful. Said she has the paperwork for us right there, and we made plans for us to get it. JD has an appointment at the hospital tomorrow, and she will meet him and give him the envelope, so he doesn't have to go up to where her office is, on the post-partum floor. I told her about the receptionist, and she apologized profusely, sympathized, said she disliked it when people talk about things they have no clue about instead of just transferring the call to those who do. She will make sure the receptionist gets some sensitivity training together with some subject matter refreshments.

So here we are. The day before. I have no idea what tomorrow will be like, or Thursday. I don't even know what to mark as an occasion. The day he died? The day he was born? Neither was supposed to be his birthday--that was still weeks away. And how do we mark it? What do we do? I think we are taking Monkey to the cemetery tomorrow, and we will light a candle at home. I will tell friends who ask that they are welcome to drop by either tomorrow or Thursday. I don't want these two evenings to be like any other evening, but I don't know how to set them apart. We are not the cake and candles type of people. I know many of you are, and maybe under different circumstances we would be too. But this is too confusing-- how do you celebrate a birth day that happened after the death day and weeks before it was supposed to happen? This is late, I know, but if you have suggestions, I am all ears. Or eyes.

Monday, January 28, 2008

Today

The post I wanted to write today is going to have to wait until tomorrow because today was scary. The short version:

dark red blood + mucous = panicked phone call to the OB practice. Waiting for the call back I watched my trembling hands and text messenged my sister to warn her that Monkey might need to spend the night. I also called JD and told him to change plans for the evening. I kept saying "I am sorry."

Nice nurse working triage + upcoming dead baby anniversary + the dark red blood = emergency ultrasound. I packed fast, and ran out of the office heading for the shuttle from The Other Big Hospital where I work to The Big Hospital where my medical care is. I called JD again on the way, and talking a mile a minute, told him that my sister is ready and that by no means should Monkey figure out what is up. We can't ruin this time of year for her entirely.

When I made it to the shuttle, I was suddenly calm. Not blissed out or anything, not everything is alright calm, but I am doing all I can calm. I ran this drill in my head a hundred times before, and now I had run it for real. It takes the shuttle almost thirty minutes to cover the two miles separating the hospitals. Blame one way streets or the route designers adding a strange illogical stop in the middle, but either way, it takes thirty minutes. For those thirty minutes I held both possibilities in my head-- the one where it was all over and I will either leave with a mason jar or a scheduled D&C, and the one where this is a minor scare, a terrible way to spend a Monday afternoon, especially one right before the anniversary, but ultimately nothing. I didn't even have it in me to hope for this one-- whichever one it was was already decided, and hoping was futile. It was either one way or the other. It was. I held both possibilities in my head, in my entire being, I existed in both of those realities.

As usual they were running late. Nothing new. Not as calm now, possibly because there was so much noise around me. Finally the tech came out to call me in, and it was the same tech who did the ultrasound ten days before. She remembered me and she was very nice. I climbed on the table and preped. Warm jelly-- they warm it in this practice. And then she found the heartbeat right away. I couldn't see it at first-- I saw a sack and a mass of cells, but she told me that the heart was beating. She measured it for me. 168. She showed me where the brain is beginning to form, but I am no longer sure which part of the image she was pointing to. No sources of bleeding that she could reliably identify. She noted something tiny at the end, near where the cyst used to be, but she was not convinced it was even real.

The nice nurse told me after that she thought it must've been a local insult to a blood vessel near the cervix. What with 30-40% increase in blood volume it happens. I know it does. But this was red and I freaked.

A minor scare. A sucky way to spend Monday afternoon (and evening-- took me forever to get all the way back to my car), but ultimately nothing. At least for today.

Friday, January 25, 2008

A ray of sunshine

I was working from home today, so althouh could see that what we had outside was a crisp sunny day, I didn't get to confront it until I went to get Monkey from school today. Now that most of the snow has melted, especially the stuff that once lined most of the roads on my way to the school, it looked, for a brief moment until someone's snow-covered lawn came into view, it looked exactly like last winter. And these days that's a sucker punch.

I have a serious post brewing, reflecting on all your kind words in response to several of my last posts and some other things that occured to me as I contemplate what comes next. But in the meantime I wanted to find something that would make me smile. So after Monkey and I got back home, I went upstairs to snoop around JD's desktop. Not exactly snoop, you understand, but the pictures from our winter ski trip got downloaded onto it, and that's what I was after. Perhaps they are not exactly cheerful (except the last one), but here they are anyway.

 

This was a view from the lift early the first day. I took a bunch from different angles but most didn't come out. It felt a little surreal-- here we were riding a lift, and there was the fog, sorta doing its own thing, in a strange straightish line trajectory.

 

I wanted to know how they got this way and why no other tree around was this obviously biased. Being exposed, I guess. Something familiar in that.

 

You might have noticed by now that I have a thing for clouds...

 

And trees. And trees with clouds.

 

Finally, this one did make me smile. This here is JD and his merry band of flying snow munchkins. Monkey is in yellow. I skied with them for decent chunks of two days, but there were long stretches of time when JD had to herd them all by himself. Impressive, no?

Tuesday, January 22, 2008

It's the final countdown

52 weeks ago my dad finished painting A's room.
51 weeks ago, sometime after my morning appointment with my OB, Dr.Best, A died in my womb.
52 weeks and 2 days ago Monkey had her first piano recital. Her third one is this coming Sunday.
I am waiting for a call from the scheduling lady at Dr.Best's practice about my first real appointment for this go-round. It might be next Tuesday, 52 weeks to the day.

I am melancholy these days. Going day to day. Classes start next week. In fact, classes start on the 30th. Thankfully, I don't have to teach that day, or on the 31st. But I do have to teach on Friday, the 1st. A year after we left the hospital. I hope I can muster some enthusiasm for my how not to write papers or what to look for when you read one talk.

I can't figure out how my current condition is affecting my feelings about the anniversary. I thought it would make it easier to face if I was pregnant or in the middle of a cycle when it rolled around, but I may have been wrong. I am apprehensive. I can't imagine, so far, a happy ending to this particular pregnancy. I am not against it in any way, you understand, just can't picture it. I can't even think of the fetbryo as a baby. Maybe it's because I spent most of the last two weeks helping Monkey deal with her feelings, but the thing I am thinking about most often, if I am to be truthful, is that if this ends badly, it will mean another delay, longer time for Monkey to wait. Cold, I know. I named my blog what I did partially to remind myself to not shut down when the time came, but I am finding now that I have to give myself a little more time.

Randomly, the last couple of days, I have been remembering things. Parts of labor. Right before I left the house to go to the hospital. Right before he was born. Right after. JD holding A. Very vivid things, and yet somehow muted. I know they are not happening now. But I know they happened. And it feels like yesterday. Shortly before six months I wrote "Turns out, six months is no time at all." Seems a year is not much longer.

Monday, January 21, 2008

Nobody's fault

A friend told me today she has to pull away. It's ok. I understand. I am sad that I am making her sad. I am also selfishly sad for myself. But that's ok. This is how it goes, it is nobody's fault, and we tell each other all the time-- do what you have to do. I know this is only the beginning, and that's ok too.

So to any deadbabymama, or a plain old infertile, if it hurts too much to be here now or from now on, I understand, and I don't blame you. I will miss you, but don't worry about me. I have often said that those around us should not be making it our responsibility to make them feel better, that in fact people should take care of those among them who are in pain. And I like to practice what I preach. So if making you feel better means I have to step aside, that's exactly what I will do. I am a big girl, and I can handle it. I hope one day we can sit together again. But if not, please know that I wish you only the best, and I hope one day your heart is lighter.


I am turning off the comments on this. I don't want to make you feel like you have to reassure me that you are staying. I mean it-- if you have to go, go. If, however, you would like me to not comment on your blog either, please drop me an email. I promise I will not be offended-- I just want to do right by you.

Sunday, January 20, 2008

Not yet

On Friday night, as I drove a very sleepy Monkey home from a lovely Shabbat dinner at the house of new and wonderful friends, house which Monkey didn't really want to leave because, c'mon, it's not that late yet, what, 10?, but I don't want to-- yes, that great an evening, as I drove her home I realized I was dreading the yahrtzeit that was to start less than 24 hours later. That was a strange thing to realize because I, unlike JD, have never been apprehensive of the ritual that came with A's death. So if it wasn't the ritual, and it wasn't the decision to take Monkey along, and I was confident that wasn't it either since that came with a feeling of peace and relief, what was it? It took some time, but it came to me.

It wasn't the yahrtzeit itself that I was dreading, but what it stands for-- a transition. Transition from a mourner, from someone community recognizes as still dealing with a big loss to just a regular person. It's the withdrawal of my official sanction to grieve that I wasn't prepared for. What is the difference, I thought, between me today and me on Monday? I am still the same, and my child is still dead.

I fell asleep having found but not resolved the issue, and I woke up to more questions. Did you know, mama, Monkey asked me, that Friday was the last time Shira said kaddish in school for her father? No, I didn't. She cried when she did that last time. A grown up crying, funny. Not that funny, baby. We talked about that, remember? Sometimes things are so sad or so touching that they make grownups cry. We cried for A, remember? Do you cry silently or out loud? It depends on what is making me cry. Sometimes I am just sad, and tears pour down a little, and then it's silent. Sometimes, though, I am hurting a lot, and then it is loud. [Omitting further discussion of kinds of crying and how Monkey cries and when as not relevant to current discussion.]

Shira is one of Monkey's teachers. Way back in November she told us a story at the parent-teacher conference about saying kaddish and about Monkey choosing to participate one day. I didn't realize, though, until yesterday morning, that since the fall Monkey has been using the occasion as her place to think of A. I told her that we would go to the synagogue to say kaddish, and she asked me whether that would be the last time. I had not anticipated that question, and was a little taken aback. Do you want it to be? No. She is upset about Shira stopping their classroom ritual, the fact she confirmed again to JD and me this morning over a giant Belgian waffle she was working on at the breakfast place we went to after morning services the three of us attended to say kaddish.

Shira sent a wonderfully thoughtful email last night about the impact saying kaddish with the kids has had on her, and, it turns out, on the kids. Monkey is not the only one affected by this. One mom in the class accidentally hit reply all on her email this morning, and so we all got to read that her daughter was standing with Shira some days to say kaddish for her great-grandfather who died fifteen years ago. Another kid was thinking about his cat.

Today I see the wisdom of the Jewish year of mourning. After the morning services there is a little breakfast thing at the synagogue, and we were encouraged to and stayed for a bit. One of our neighbors at the table had apparently only been saying kaddish for a month or so, having lost her father recently. She relayed how people in her office are mystified over the eleven months of daily kaddish recitations. You say a prayer for the dead? No, she told them, in complete accordance with the teachings of the faith, it's for the living, the dead are never mentioned, and the prayer is all about life.

Jewish mourning is about the living. It's about giving them the space to grieve, about acknowledging the loss, but also about eventually creating a mechanism for returning to that elusive regularly-scheduled life. Saying kaddish is a mitzva, a good deed. This particular one is supposed to actually count towards the dead person's credit. Eleven months of daily kaddish are ostensibly to help your loved one's soul reach a better place. There is a medieval teaching that no soul spends more than a year in purgatory, but that since you wouldn't think that your parents were the sort of bastards who would need the full year, you say kaddish for eleven months.

By this same logic, parents of dead babies are clearly exempt from saying kaddish at all, because c'mon, how could that baby have racked up any purgatory time at all? But because mourning is for the living, deadbabyparents are exempt, but not prevented. (Mind you, this is all about my denomination, Conservative. Don't get me started on the Orthodox, or some Reform for that matter.) We could say it any time we wanted to, and we did, every time we came to synagogue this past year. I thought, originally, that I would stop after Yom Kippur, but I couldn't, and so I didn't. What we didn't do was come extra, go because we wanted to say kaddish. We didn't make it a ritual the way Shira did.

Shira talked to the kids on Friday about how she was emotional because the time has come to stop daily kaddish, but that it was another step for her in saying good bye to her father, although definitely not forgetting him. She is now looking forward to the month between now and yahrtzeit, to the yahrtzeit day itself when she has an imaginative and appropriate activity planned with the kids, an activity to celebrate her father's passion for education. She is ready.

And I am not. I am no different today than I was on Friday, than I will be, I imagine, when the end of January rolls around to close the conventional circle. I am afraid of being left to fend by myself, no longer within the sanctioned confines of the official period of mourning. I didn't know I took comfort in this protection until I was facing having to leave it behind. This pregnancy, too, longed for as it was, I dread what it will mean to some people around us, dread how many times I will have to explain.

I am not ready. The year of mourning has not done it's job for me. I wonder whether this is because I didn't follow the daily kaddish custom, but I am pretty sure that is not it either. I think it's just a different kind of animal we are dealing with here. Your parents are supposed to leave, eventually, when you are an adult. But we lit a yahrtzeit candle for our son last night. We said kaddish for our child. It just isn't the kind of thing you grow up thinking you will have to face. Not anymore. And so I am not ready for this change of status. And neither, it seems, is my daughter. I guess we will have to figure this out.

Friday, January 18, 2008

NBHHY big time

Houston, we have a heartbeat. 136 by one measurement, 128 by another. Seen by abdominal ultrasound. Measuring exactly where I know myself to be-- 6w5d. I am pretty astounded, as I was really bracing for bad news. (Brown spotting on Wednesday night did not help with that. Sorry I didn't tell you, but I wasn't sure whether JD could read the blog from Europe, and didn't want him to worry. But my sister was called and alerted to sleep with her cell phone next to her, in case I needed her to come stay with Monkey while I hauled my ass to the hospital-- being alone with Monkey really re-focused what I was worried about, for better or for worse. For better, I think, as it allowed me to concentrate on making it to the morning rather than on whether the shit was hitting the fan, you know?)

My friend Aite went with me, for in case news was bad and for general moral support. Good thing, too, since although I brought a book, I am not sure I could've read-- when I got to the floor, and then to the reception area, I started to shake a little. Not sure whether Aite noticed, but we talked all through the wait, and it really helped. In fact, I think, other patients in the waiting area might have mistaken us for carefree clueless people. Let me assure you, though, at least on my part it was all nervous energy.

I have a bit of a strange pain on my right side still, where the cyst used to live, and I was worried. But both the technician and Dr. Best looked very carefully at both the ovaries and the tubes, and didn't see anything interesting. Speaking of Dr. Best. He came in, asked me how I was (shell-shocked), and then said "I guess you showed them upstairs." Did I mention I love my OB? Nurse Kind also came in-- she works triage on Fridays, and said she was watching for me to be called in, and then came to see what was up. Did I mention I lucked out to have been assigned to them (randomly) when I was pregnant with A?

Thursday, January 17, 2008

What are those pink things in the sky?

Are those... pigs? Yes, yes I think they are.

So the teacher talked to Aaron yesterday and to his father. But I think father first, at drop off, and the kid later. And you know what happened? The kid told the teacher that he didn't remember the conversation, and she told him that even if he didn't mean to hurt Monkey's feelings, he did. But then, then!!!

This morning Monkey told me that Aaron came up to to her yesterday in school, asked her whether he said that thing about her brother, and apologized. Holy freaking molly! Major points. For him and his parents, since I guess he didn't even need a talking to at home to do this.

Maybe it's in the air this year.

Wednesday, January 16, 2008

'Tis the season

Monkey is no fool. A statement I should perhaps have tattooed on the insides of my eyelids or record for continuous broadcast in our bedroom while I sleep. Because while I am generally not one to sell my child short when it comes to any of her endeavors, I apparently underestimate her time and time again in this grieving thing.

When the artwork started showing up, about ten days ago, in quantities not seen since the early days, I didn't, at first, catch on. The first was a card, with letters A on the front and Z on the back (I didn't see the Zs until later), a labeled self-portrait on the inside left and a picture of a bundled up baby on the other, labeled with "little brother." She came downstairs with it, presented it to me, and said she was sad. We cuddled for a bit, she showed her handywork to JD, we cuddled some more, and then she said she wanted to draw something else. Something else turned out to be a large format drawing of a heart with a bundled baby inside of it, signed across the top "Little brother in my heart." It would be too saccharine if it wasn't so heartbreakingly genuine.

A few days later she made a book in school, with the same bundled baby on the front. Inside, on the first page, above the picture of A's skeleton underground (I guessed that's what it was, but asked for clarification), in the Old Country language, it says "Chapter 1. Once my brother showed up. But he died." The rest of the pages is blank. She said she will finish the book at home, but she hasn't so far.

There have been at least three more cards, made at home. Decorated with the stuff of babies-- prams, rattles, stuffed teddy bears, stuffed bunnies. Things, she says, she wanted to give her brother. Inside one of the cards, in the Old Country language, it says "Dear parents. I am sad because of the little brother." In another card she signed the picture of the bundled baby with A's name instead of the usual little brother.

I found out gradually that she has told many if not all kids in school. This is why I met with the teachers before the school started-- I thought she would talk about it at some point, and I wanted her supported when that happened. On Friday we had Hannah and her family over again-- the girls cornered me after school one day and pretty much demanded I make that happen. While there, Hannah's mom (btw, I was either wrong about her being pregnant this summer, or it didn't end well) noticed the book on the counter and asked whether it was a drawing of Moses in the basket. No, I said, but you can look. Oh, she said, as she read Chapter 1. She asked me some questions. Hannah told her, but she didn't realize it was almost at term that A died. She assumed, I think, that it was an earlyish loss, and was wondering, I am guessing, why we had told Monkey because she asked me whether I was showing when it happened. Almost 35 weeks I said.

This weekend, too, Monkey told me a kid in her class, Aaron, told her A didn't count since he died. What did you say, I asked. I said he counted. Apparently they went in circles for a while, and I think it hurt her to hear him insist on it. Why do you think he counts, I asked. Because he was born, even though he died was her thought. I think she meant because he existed. But we came up with because we love him. That worked for her, I could tell. It's not helping my good will towards this kid any that he is the son of the people I know from college, the universe revolves around us people. I am trying to talk myself into giving him a break, but I am realizing it would be easier had it been any other kid in the class. Though it seems Monkey was greatly relieved that one of the girls in the class, Rachel, stuck up for her and told Aaron that A counted. This all must've happened at recess because the teachers didn't know about this, but have now promised me to follow up on it.

At some point I started to suspect that Monkey remembers the time of year, but I wasn't sure. Last winter was so snowless that it barely felt like winter at all. Sunday afternoon we were at Irene's house and I was telling her about all the artwork and her first guess was that Monkey is feeling the year come to a close. But the winter looks so different this year, I said. I don't know whether she heard me then, but on Monday morning, after the overnight snowstorm closed down the city and we were enjoying the view from inside our warm house, Monkey walked up to the porch door and said that she likes snow, and it's very pretty, and that last winter there was almost none of it. I don't think I can pretend any more. The upcoming anniversary isn't just mine, and it's not just mine and JD's. Monkey knows, and she hurts.

She loves to play with babies. At Irene's house, and then on Monday at ours, when they came to seek refuge from their own house which had lost all power and heat, she played with the youngest, the baby who was supposed to be A's best buddy, gently, lovingly, with care and wonder. She longs to care for a living sibling, and I worry about what the ultrasound will show not the least bit because I am afraid of having her dream pushed back, again.

I can perhaps be forgiven for wishing she didn't remember, for wishing this season would be gentler on her. And maybe, a little, for wishing that I could concentrate on sorting through my own complicated feelings in the here and now instead of needing to spend so much of this energy helping her. But the fact of the matter is that she does remember, and it is my job, perhaps my greatest responsibility, and my honor to help her navigate this strange universe she finds herself in, now and any other time she needs me. I knew way back when she would be the best big sister anyone could ever ask for. And she is. And if we don't screw it up, she will continue to be, for the brother she lost and any siblings she may yet have.

***************************

A's yahrzeit is this Sunday, meaning it starts, like all things Jewish, the night before, on Saturday. JD is only getting in Saturday afternoon. I may have to meet him at the synagogue, for the second to last time we say kaddish in this first year. Next to last will be Sunday morning, and last-- next Friday night, when kaddish is said for all whose yahrzeits had occurred in the previous week. I wasn't planning on bringing Monkey to any of these events, but I am considering it now. It might be good for her.

Saturday, January 12, 2008

Glass half...?

I normally think of myself as a realist, and, truth be told, take a certain amount of pride in it. I am not, I tell myself, a wide-eye optimist who thinks everyone is basically a wonderful person, and if we could just look into each other's eyes and see each other's souls, we would all get along. But, I continue, neither am I a beyond redemption burned out cynic who thinks no-one ever does anything if it does not benefit their own selves about fifty times more than it benefits anyone else. In fact, I have, on occasion, gently teased my friend Irene, mother of three and generally thoughtful person, for her (for my taste) naively too kind view of human nature, as manifested for example in her inability to comprehend that people exist who view pregnancy as a punitive measure for having had sex.

Where was I? Oh, yes. Me, realist. Proud of it. Once in a while, though, something happens that shows me that I am probably much closer to being an incurable optimist than I care to admit. Take, for example, the Big Drama. The thing that was so crushing to me about it was in fact that a human being was capable of doing a thing like that to me, to us, to anyone, actually. Surprisingly, I could never muster being angry at her. Still can't. It's the people around the whole mess, the doctor, the nurse administrator, that I find myself thinking about, wondering whether they will one day realize what they did, and whether they will feel bad when that happens. I find myself hoping for that fairy tale version of capital J Justice where the mystery is solved by the end of the story, the wicked are punished, and the good most certainly rewarded. Better yet, where the wicked see the error of their ways and repent. Or, you know, the doctor calls us to apologize. I know, dream on.

Right before we found out of my current state, two weeks after having our medical care terminated and tired of waiting for the promised prompt new prospective RE referrals, we wrote a letter to the head of the practice group (which includes GYN, OB, and fertility services) asking him to intervene in getting us the referrals and pointing out to him the need for a thorough investigation in order to protect other innocent patients at the practice from being accused in the same way. On Monday, another ten days later, the patient advocate finally called with names (provided to her by the doctor via the nurse admin, yes a bit convoluted). She called me, but I was in a meeting. She left a message and then also called JD. She mentioned to him during that conversation that the head of the practice is going to write us a reply in the next week or two.

For a while I couldn't figure out why hearing that news sent me into another acute anxiety episode that lasted for several hours. Finally, it came to me-- I had made peace, of a sort, with the idea that we were all done with the RE, that while I would probably never get my apology, at least it was over. The promised letter, however, means new contact, which to me has come to mean another opportunity for someone to declare me a Bad Person (TM), an opportunity to feel disbelief and pain over being so casually and so heinously labeled and dismissed.

I managed to calm myself down a lot, and even to get some work done before making a serious mistake of listening, without anesthesia, to last weekend's episode of This American Life. You should listen. But do yourself a favor and have a stiff drink first. And a few more ready to go for during. No, really, have them sitting right by where you are. Because the show, particularly Act I, will shake you. At least I believe that it has to if you, like me, are an aspiring realist.

Act I tells a story of a family that, once they had kids, moved to a small town on the East Coast, opened a business, and lived their lives. Until, pretty much fall of 2002, when their oldest child, a nine year old girl called Cloe in the story, starts getting hounded in school. You see, the family is Muslim. And the district distributed a booklet as part of the lesson on the first anniversary of 9/11 that had on its cover a picture of the burning towers and inside, among other things, said "Who did it? We don't know. But here's a clue. Muslims hate Christians. Muslims hate Americans. Muslims believe that anyone who doesn't practice Islam is evil. Koran teaches war and hate." And you know that to nine year olds if it's in a book, it must be true.

This is not even the worst of it. The family weathers this part, not without scars, but they are getting through. And then, December comes, and with it, the declaration by the teacher that the class will be reading a Christmas book every day this month. Of which she has hundreds at home. December 5th the teacher brought in a book about Jesus' blood, and its ability to save the believers. She also brought in visual aids and spent a good deal of class time on the unique power of the blood to grant salvation to the believers. Cloe's question of what happens to non-Christians was answered with "Just believe in Jesus. His blood will save you." You understand, don't you, that it became immediately apparent to all of Cloe's classmates that she and her whole family are headed straight for hell? You can imagine then, begin to imagine, what that girl's school life became, can't you? Hounded by kids at the instigation of the teacher. One person who was supposed to protect her.

The story, which won a very prestigious award by the way, got to me on a very deep level. How could this person, this teacher, do this most inhuman thing-- cause the suffering of a child? How could the school and district administrators put out that booklet? How could they stand by and watch what was happening to Cloe? The people work with children. Vulnerable children. These people have the power to enlighten or to install and perpetrate misconceptions at best or bigotry at worst. How can anyone not take that responsibility seriously? I wonder whether anyone proofread that booklet. And if they did, what were they looking for-- margins, layout? Did it occur to them to ask, say, an actual Muslim, maybe a military chaplain, what they believe?

Most of all, for me, it's the teacher. The teacher who met this kid on the first day of school. Had her in the class for at least a week or two before the anniversary lesson. Did she not see her as human? How was it ok to make a child suffer? To keep making a child suffer. Did she actually believe that she was doing this in the name of her G-d? And because I actually want you to listen to the story (just remember-- with drinks, stiff ones) I haven't told you the last part. The part where this teacher outdoes herself in heaping humiliation on a nine year old.

I will be honest with you and say that I don't understand these people. When I first heard the story, I had a hard time reconciling myself with the idea that people like that exist, that there are people who think this behavior is normal, and justified, and they become teachers or school administrators. Don't get me wrong. It's not that I don't think bad teachers exist, even power-tripping teachers. I think often about how much we lucked out both with the school and with the particular teachers. But to me power-tripping is one thing. Instigating ostracizing of a student is very much another.

What was perhaps most amazing to me in the story, though, is Cloe's mom, Serry. Throughout the whole thing she continues to believe that this is not America, not her America, that this is not representative. I am blown away by that, impressed. But I also want to shake her, to tell her, look, back in the Old Country, there was an old joke told to describe the general attitude towards Jews. It went like this. Head of the government arrives at the meeting of the cabinet and announces that he has a great new idea-- to beat up on the Jews and the mailmen. Why mailmen, someone asks. Great, says he, I knew there would be no objection to the first part.

But I guess she is an optimist. Or does she think of herself as a realist?

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I hadn't meant to not write for a week. In fact the part above has been percolating in my head since Monday, and there is a few more that have to get out. I just couldn't find the time. Ironic, seeing as I spend most of my work day on the computer. But I also had a huge backlog in my reader, and it didn't feel right to write without reading and commenting. I am done now. My reader is down to 0 unread posts. JD is skiing in Europe, and Monkey is at a friend's house. They spent the night and most of the day today here, and then I took them over for the continuation of this feast of togetherness. I should even have enough time in the morning to finally add to my roll and my reader, something I have been meaning to do since about Thanksgiving.

I did another beta and progesterone test yesterday, and called for the results today. They are, let's say, not entirely reassuring, although they definitely do not decisively spell disaster. Last Friday, hCG was 1732, giving me a doubling time of 1.43 days. Had it doubled from then on every two days, we would expect yesterday's result to be something in the neighborhood of 20,000. Instead it was 9173, for the new doubling time of 2.91 days. So my doubling time about doubled. I am not panicking yet because the doubling times do tend to slow down, and my overall value is still well in range, as is the doubling time for the current gestational age, but it certainly isn't putting a decisive end to my NVTs. Except maybe the one about the molar. I think these numbers are now too low for a molar. And I have to say that molar scares me a lot, mostly because of how long you can't try for after having one of those (at least six months). I will be glad when the ultrasound day arrives, I'll tell you that.

Saturday, January 5, 2008

NBHHY

The two betas were a week apart, and taking into account the expected doubling time of two days, we were looking for about 700 in order to keep NVTs at bay for the time being. We got 1732, with a bonus rise in progesterone to 22.1. So yeah, a huge relief and NBHHY.

And now we will endeavor to make it to the ultrasound on the 18th likely by not talking about this much, or possibly at all. January is a tough month for me, and there are many thoughts swirling in my head that I need to get out.

Friday, January 4, 2008

NVTs (updated)

So we know about DBTs (dead baby thoughts). But see, I discovered a new and improved way to carry a ball of nervous energy at one's core. It's called NVTs-- non-viable thoughts. Anyone who doesn't have enough things to worry about, and to whom this condition pertains, are welcome to borrow both the thoughts and the acronym. Although I am sure nobody actually wants any of that.

The root of all this is that my insurance stuff is still not cleared up. I don't have the cards, and I don't even have the benefits letter I was promised yesterday. This letter is purported to have the magical powers of making health care providers render you needed services but await some pre-determined date to bill your insurance for said services. In the absence of the letter, I am too chicken to go get another beta. My first and only one was last Friday.

So having no data to assure me of normal development, and having no noticeable nausea, which usually comes on early and strong for me, I am oscillating between thoughts of ectopic, blighted ovum, and, just for good measure, and because the first beta was pretty strong for 12dpo, molar.

I made myself call my OB's nurse, and she called me back, and took down all the dates, and will talk to him and call me back. I asked for an ultrasound next Friday, before JD leaves on his trip. We'll see how that works out.

Meanwhile, why can't the benefits person just pick up her phone?

Update:Ahhhh... much better now. The answer to the last question turned out to be because she recently moved offices and the behemoth bureaucracy hasn't gotten its act together enough to ensure her phone works. So it's a good thing I got too antsy to sit still and went over there myself. So I have the letter, and I took the shuttle to the lab and had my test done, and while I was there, Nurse Kind called. Turns out Dr.Best didn't want to have the u/s next week because he won't be the one doing it next Friday. So he wanted the 18th, but JD will still be gone. Some other options were considered, but eventually JD said to go ahead without him, and so the u/s is scheduled for the 18th. So now we wait for the second beta. And work. I am drowning in work.

Wednesday, January 2, 2008

Home

We are home. Which is good not the least because the logistics of twice daily progesterone suppositories in a house full of people staying up till all hours talking and kids running in to ask you a question very early in the morning, they are not at all easy.

But I was also anxious for most of the drive home, and stayed that way since we got here. Being here means doing things. Like trying to get a repeat beta, which is not as easy as it sounds given that our new insurance has not sent us the cards yet, and I am afraid of offending the paperwork gods. I hope to get the insurance thing figured out tomorrow morning and get the beta shortly thereafter. I will then (Friday, likely) call my OB's nurse, Nurse Kind, and ask her to schedule that first appointment. I will have to further complicate things by asking her to schedule the ultrasound for a few days before the appointment, since JD is leaving next Friday, and we kinda both think he should be there for that.

Adding to my anxiety, but only a little, is the phone conversation with the genetic counselor we saw two days before the onset of the Big December Drama. I am not a carrier for fragile X, which was a long shot in the first place. I do, however, have a mutation in the cystic fibrosis gene (CFTR). It's rare, it only occurs in the Ashkenazi Jews, and it seems to be mild. It can, when combined with a severe mutation, such as the one JD has, cause either asthma or the absence of vas deference (which was the original reason we got sent to genetics). And since I am guessing that while prenatal tests would be covered, post-natal would be out of pocket, and since if there is asthma in our future at some point, I would want to be prepared, I think whatever pregnancy gets to that point, I will have to have an amnio.

Oh, and talking to her forced me to say the p-word today. I had been practicing saying it in my head so that I don't sound like a complete doofus when I call the nurse, so I did ok. Let's see if I can type it too. Um... I am pregnant. You think that might have something to do with the anxiety?