Wednesday, December 31, 2008

Intermission - A New Year, A New Heart *p.s.

K received his new heart at 3:00 am today.

B called me at 9:30, and said that he was doing well, they' are obviously keeping an eye on him, but this afternoon he was coming out of the anesthesia and sedation, followed directions, and opened his eyes when he heard B's voice. H, their 4-year old son is ready to play baseball with him, now that he's got his new heart.

He has a long road ahead of him, but K is on his way.

*p.s. Newt reminded me of the huge loss another family endured last night. They have been in my thoughts -- if only they knew the enormity of the gift they have given.

Sunday, December 28, 2008

Friday

I woke at about 7am Friday, December 28, having soaked a pad with very light/tan amniotic fluid and having mild cramps I knew were contractions. I called my dad, and he and C and I went over to the local hospital to see what was happening. Part of me was hoping for labor, the other dreading it.

I was admitted and they assigned a nurse to me, Sara, who took care of me for the time I was there. Because of the risk of clots I got those vibrating leg stockings and was told to call Sara whenever I felt a contraction. She came and would sit with her hand on my belly to feel the intensity and to time whatever it was I was feeling.

Though it was determined that I indeed was not in labor, I spent most of the day there, asking questions of Dr. Coldfish (my OB was still on vacation) and Sara, and we got one more ultrasound. I had always looked forward to ultrasounds, but it was so mixed, so horrible now. Jacob still looked fine. I think there was a little less fluid, but not significantly. With only days between, it was hard to see progress from one scan to the next.

I asked Dr. Coldfish about what would happen if I went into labor, or if I was induced. What the risks were to me to wait, what he saw our chances are of eve making it to 24-weeks. He answered my questions, but in a moment of sensitivity, told me that with something like, probably, I would always only be about 51% sure we did the right thing. No matter what we chose. Wisest thing he ever said to me.

Mid morning, my sister and BIL arrived and we all sort of hung out, sometimes with Sara, sometimes without. Sometimes just C and me, talking trying to figure this out. Sometimes just C and me and Sara.

My younger brother provided plenty of fodder for conversation. Since my father was generally the one responsible for taking care of my grandmother, P had to take over that responsibility. Grandma had not been told anything, so she wouldn't worry or stress, what with being 90-years old and having diabetes and a heart condition and depression. Dad told her he had a cold, so he didn't want to come over and get her sick. P was annoyed that he was home taking care of Grandma, far away from the excitement. He never said this directly, but it was clear from his conversations with the rest of my family.

P and I were always close as kids. I'm the middle child, A is oldest, P is youngest, and we fit our roles pretty well. Considering Grandma's state, he had a pretty important job, but he didn't see it that way. Throughout the day, he texted and talked with various members of the family. I don't remember talking to him directly. Since getting engaged... well, at least since my mother died, P has felt like a marginalized member of the family. Less important, less supported. Since we don't see each other all the time (like his in-laws), his major complaint with our family is that we don't support each other.

Once it was determined that my body was not going to do anything today, and that very little had changed, Sara essentially monitored my very mild contractions that came about every 5 to 15 minutes. I asked, finally, to talk to the grief counselor, J to get some information. C and I were leaning heavily toward inducing labor, and I wanted to find out as much as I could.

J was not only the grief counselor, but an OB nurse who had experienced a 20-week loss almost 30 years ago. She was very kind, very gentle, and talked not just to me, but to my whole family, addressing them in their roles relating to the boys. Aunt A, Uncle BIL. Grandpa. She asked him if he had any other grandchildren, and I could hear him stumble, as he said, "No, others." I asked a lot of questions, about labor and the delivery and after the delivery. She answered them with sadness and gentleness.

She answered my father's questions, and my sister's and C's. She held my hand, and hugged me. She gave everyone some information sheets about what to expect with grief, both mine & C's, as well as their own. J is a big woman, and she has a big loving heart. Everyone got a hug when I left for the day, even BIL. I was glad for the opportunity to talk to her. She gave us her phone number, both home and work, and said to call anytime. She said we were good parents to the boys. Good, loving parents, no matter what we decided. Still makes me cry to think about it.

As we were getting ready to go, Sara came in. "I just wanted to say," she began, "you two have an amazing relationship, and that it's really been an honor to get to know you and your family today, and I'm so sorry for the reason." When we came back to induce labor, she told us that she requested that she take care of us through the delivery.

While the doctors and bureaucracy mostly sucked, the nurses (J, Sara, Renee, Robin, Brandi to name a few at this hospital) were awesome. They were kind, and human and humane, and helped make some of the most unbearable days a little more bearable.

I think I went home and went to bed, or maybe everyone came over and we got pizza. Over the weekend, C and I spent a lot of time talking. I talked with A, and my father and B and JK and J. I talked about names with my dad. In Judaism, you name a child to honor someone who has passed, so with this pregnancy, it was expected we would honor my mother. I told my father that I didn't want to do that, that I wanted her name to live. I've only seen my father cry a handful of times. That was one of them.

Over the weekend, A cleaned and cooked, and went to the store with C to get groceries, and there was time spent at motels and time spent at the apartment. My dad told my brother that it looked like we would probably induce labor, if it didn't happen over the weekend. They made arrangements for my uncle (my mother's brother) to fly in from Sante Fe to look after my grandmother, while my brother came here. She knew something was up, but in traditional family style didn't ask too many questions. Didn't want to know too much, not yet. So P was here Saturday night, and spent Sunday cleaning out the grossness of my car, and there was lots of waiting around to see what would happen.

Nothing happened. I leaked on and off. I had mild contractions. Not much else. If nothing happened by Monday, we would make our decision.

Monday, New Year's Eve, my family went to the movies so C & I could have some time alone. C, continuing his role as "director of communication" made the announcement when they got back.

We had decided to go with act.ive manage.ment; we were going to induce labor and deliver the boys.

Coming next: My OB comes back, local hospital screws up, end up at UH for delivery with doctors and nurses I don't know.

P.S.
You might have noticed that C's family was not here for all the drama. They offered, but he decided against having them come. They could be more help later, when we were trying to recover. And they were.

Saturday, December 27, 2008

Waiting

It's about 5:00 pm where I am. A year ago, we were still waiting to talk to the neonatologist.

My dad stopped by early in the morning, maybe around 8 or 9, on his way to pick my sister, and (unexpectedly) her husband upon their arrival on the red-eye. BIL can be very sweet, but he's pretty awkward and needy when they visit. They arrived late morning-ish and we filled them in on what had happened, what we'd found out so far. C, I think, had continued to make some phone calls, but my sister has this energy and humor that call fill a room, so there was some busy-ness while we caught up on things and waited for my ride to my next ultrasound. Dr. Joker had said that day to day, there wouldn't be much change, but I had to see for myself.

One of Dr. J's associates came by with a resident and some other medical person to check in on me. When she found out the hospital I had been transferred from, she asked about a Dr. Sweetie Pie, who was, indeed very sweet, if ineffective and they remarked that he had done his residency at this hospital a number of years ago. He wasn't my regular OB, but I had seen him during one of my IV fluid hospital visits. I mentioned Dr. Coldfish, who had been on call when my water broke, and they said "Coldfish? Didn't he retire a few years ago?" Yeah, that instills confidence.

Finally around 1 or 2 my ride to my ultrasound arrived. I assumed I would be going to an ultrasound in L&D or OB or ante-natal, where I was, but I was mistaken. This woman took me on what had to be a 10 minute walk through tunnels and elevators and hallways to the outpatient OB Clinic. This is the no insurance clinic, the special cases clinic, the bring your 2 or 3 small children clinic while you get your prenatal exam with your 8-month belly in my face while I wait for 20 minutes to get my ultrasound. No, I wasn't a special case. I was just waiting to see if my remaining child was still alive and if there was any fluid around him so maybe I could make it to the bleeding edge of viability. No biggie.

The radiologist took us into a darkened room and began. She confirmed that Joshua was gone. There was some word that she used, like deceased, but not, that kind of jarred me. It wasn't mean, or harsh, but maybe just...medical. She measured Jacob, his good strong heartbeat, and pointed out, "oh, looks like he's practicing breathing, there, you can see it." (Gosh, thanks, that's great.") She looked for pockets of fluid, and there may have been a bit more, but nothing significant. Besides, every sonographer is going to get a different result. She called the doctor and he essentially told us what we knew.

After we knew for sure that Joshua was gone, I kept hoping I would go into labor. Or that finally an ultrasound would show that Jacob was failing or, forgive me, gone. Every breath hurt, knowing that we had to make this decision, deliver or try to wait it out. I pleaded with nature, with my body, to make the decision for me. Once again, my body refused to cooperate.

The wait for my ride back to my room was shorter, though it felt interminable. This huge black man pushed my wheelchair so my hair was blowing in the breeze, and he made pleasant small talk with us. The trip up was probably half the one down. I was probably gone and hour, and filled in my father, sister and BIL on the non-news.

It was probably 3:30 or 4 and I was just wanting to go home. Last word from the nurse was that neonatology was getting slammed, and they just didn't have a doctor available yet. C was getting anxious about the cats, and it was getting frustrating just waiting.

My dinner came around 5 and the nurse got the OB resident to see if she could answer some of my questions, which she did, as much as she could. Birth at 24 weeks, with little fluid would mean underdeveloped lungs, risk of interc.ranial bleeds, necro.tizing entero-colitis, CP and a bunch of other horrible things. If he survived birth. Not to mention risks to me in waiting. Our chances of having a sort of healthy, non-severely disabled baby, even if we got to 28 weeks were minimal, maybe 5 or 10%, tops. But I would have to talk to the neonatologist for more information and statistics.

We thanked the resident and she left her card. Once the door was shut, my sister and I burst into tears at the same moment. I'm sure I've mentioned this, but A is all about control, and it takes a lot to get her to cry at all. This was really, really bad. It seemed our choices were dwindling.

After I picked at my food, maybe 6 or 6:30, we called the nurse in again. I was finally like, screw this, I just want to go home. I'll get the neonatologist on the phone to ask questions. A pushed back. She said, do you want to see the doctor? She said, can we just wheel her down there so we can get some questions answered? A said that she understood those patients needed the doctor, but all we needed was a few minutes. The nurse, of course, was getting frustrated, as were we, and she said she would push to get someone down here, but couldn't promise time.

About 7 or 7:30, finally, a haggard, sad, tired looking doctor in blue scrubs came in and told us she was a neonatologist here to try to answer our questions. (They had been slammed with a lot of births and a lot of loss, I guess.) The picture she painted was bleak. Birth at 24, 28, and the dream gestation of 32 weeks, all severely, negatively affected by the lack of fluid to move around in, and to develop lungs in. Words like pulmonary hypoplasia, pulmonary dysplasia, brain bleeds, blindness, deafness, cere.bral palsy. If he survived birth. Depending on when that was. Likely immediate placement on a ventilator, depending on his birth weight, and something else, apgars? How he seemed at birth. Sometimes babies look great at birth and do poorly; sometimes they look bad and wind up doing well. She confirmed the 5-10% health of our son, should he last that long and survive birth. This is all not to mention the risks to me.

She painted better pictures if he survived to 28 weeks, or to 32, but there would still be serious risks, and particularly pulmonary, as 20 weeks was the critical period for their development. Also, with little fluid to move in, he would likely be at least moderately physically handicapped because he had so little room to work his muscles. Barring infection, blood clots, placental failure or abruption, or spontaneous labor.

More questions. A business card. She was gone. We packed up and headed home ourselves, distracted, tired, and getting lost, but eventually home safe. C was pretty sure he knew what we needed to do, but I wasn't. I needed to time. I wanted time for my body to decide for me.

Looking back, I think I couldn't bring myself to give up on this pregnancy, this little boy. 5% is 5%. I hadn't gone into labor, as statistics said that I would, what if I was one of the few who could make it?

We went home to broken dishes everywhere. Cats freaked out at the top of the stairs. One of the supports on one of the shelves broke. Our gorgeous huge Pot.tery Barn wedding gift dishes shattered and scattered across the kitchen floor. There's poetry in there somewhere.

And so, with me on 95% bedrest, we waited. For labor. For me to make up my mind.

For the alarm to go off so we could just wake up from this nightmare.

Coming next: an abridged version of the next few days. Thanks for hanging in there with me.

Resting

I may take the day to rest. There's a lot I want to say, a lot I want to share.

As several of you have said, this has been tiring, moreso than I might have thought, bringing up more than I would have thought.

Thank you, my wise and loving sisters, for walking with me down this path.

There will be more, in the coming days.

Love,
S

P.S. During a difficult moment today, Stella sweetly rested her head on my foot. What a wonderful girl she is.

Friday, December 26, 2008

The Univ.ersity Hospital, pt 1

C somehow found the OB/L&D check in, which was, of course, under some construction and crazy busy. Apparently, according to the nurses, people wait until after the holiday to go into labor. Of course they do. There were 3 people behind the desk, overwhelmed, and 3 or 4 women in various stages of labor and/or pregnancy and (I think one 12-week miscarriage), completing paperwork, waiting on phone calls.

Despite my automatic admission, there was still paperwork in addition to what I brought, and they had to first find it. It was a zoo. As I was filling out paperwork, my sister called and I handed the phone to C, I couldn't talk at all. My dad had talked to her and she was asking if she should come out. C and I looked at each other, I said, I don't know and one of us (sister or me) just said decide. He said to come out. A had just gotten back from a trip somewhere, but would find a red-eye and would be there in the morning. She's be in touch.

It continued to be a zoo in the teeny admitting office, and some woman who looked full term started moaning and, in tears, I asked C to take me out into the hallway. just outside the door. It was all too much. As he pulled me out, so supervisory nurse ushered us down the hall and said they didn't have a room yet, but set me up in an ultrasound room, at least I'd have some quiet and I'd need another ultrasound anyway.

In relatively short order, OB residents and doctors came in, someone did yet another painful pelvic and examined me. A sweet woman with an eastern European accent, Natalia, I think, did an ultrasound. It was higher quality (of course) than the other, and she thought she found a couple more pockets of fluid.

At some point my dad called (me, or C) and said he had a flight and would be getting in late that night. He told us that A would be here in the morning.

After the pelvic, I had to wait to see the peri (Dr. Joker*), the neonatologist, and another doctor or two, I don't remember their specialties. Dr. Joker came in rather quickly, looked at my file and asked me when he had done the amnio -- 4 weeks earlier, we said. This is not because of the amnio. Practically first words out of his mouth.

He said we knew I was high risk, because the twins and my age, but "This is not your fault," he said, emphatically. "This is not your fault," which, of course, just made me cry. He explained options and risks, and trying to wait, or not. The UH OB had begun this, but wanted to defer to Dr. Joker because he, or course, had the numbers, was the expert. I've seen babies with this much fluid survive, he said. But this is the critical period for lung development, so there would be some problems there.

We asked about the two options the UH OB had discussed with us: exp.ectant man.agement and act.ive man.agement. (Gotta love the euphemisms) He said he'd probably send me home for expectant management, on 95% bedrest (home was better than hospital, he said, fewer germs) with me coming in to see him or my local OB for fluid checks each week until 24 weeks, at which point I would be admitted. Then, I don't remember if he said they'd deliver if I went into labor, or they'd try to hold it off as long as possible.

Chances were not good that I'd make it to 24 weeks, which was just the beginning of viability. There was a 70% chance I'd deliver spontaneously over the weekend (my water broke on a Tuesday) anyway. They'd try to get me to 28 weeks, or, extremely unlikely, 32. He said, no matter what, Jacob's lungs were compromised, and he had little room to stretch and develop his muscles. And there were serious risks with such early delivery. Not to mention risks to me, like blood clots (I already have MTHFR, a hypercoa.gulation disorder), sepsis and other dangerous stuff. I needed to talk to the neonatologist for info about impact on the baby, but chances were very low that if we made it to viability that we'd have a healthy child. Some disability or not.

I should talk to the neonatologist for stats, that wasn't his field.

Active management meant delivery, or d&e. Both choices made me cringe, as at almost 20 weeks, I'd already developed a relationship with the babies; D&E didn't seem like something I could consider. But delivering babies knowing that they would be dead, or soon dead?

Initially, we thought we probably going to have to do "active management", but Dr. Joker made it seem like we had a chance with the expectant. Of course, he gave few numbers or specifics about survival and quality of life.

I think we saw 5 or 6 doctors in those first couple of hours, then we were just waiting for the neonatologist so we could get the full picture and try to make a decision. There was a lull, and C started making phone calls to his family, asking a sister to send the word, calling others. I don't know who called my brother. Probably my dad.

They hooked me up to the monitor for contractions, but I don't know about heartbeat. I was having some pretty mild ones, and the nurse said, sheepishly, that that probably wasn't a good sign. I texted with JK, and got some ice chips or something. C ran down to the food court just minutes before they closed and got some lousy chinese food, but Dr. Joker said I could have some, too.

Since it was getting late and we hadn't talked to the neonatologist and hadn't made any kind of decision, I was admitted to the ante-partum unit, which was really nice (certainly construction had been finished there) and we settled in for the night. The couch in the room pulled out to a single bed, which C used, and there was a nice recliner, too.

I asked C to start making phone calls to my friends, which he did; he'd tell them the news, then I'd get on the phone and we'd cry: B, JK, JH. After many futile calls, we discovered that most of our local friends were out of town; the cats would have to fend for themselves that night.

Around midnight, not even 12 hours after I spoke with him, my dad walked into my hospital room to see me before he checked into his hotel room. He kissed my cheek, hard, the bristles from his white beard pressing into my skin, and squeezed my hand, hard, with his huge one. He'd go get my sister at about 8 or 9 the next morning and he didn't know if he'd see me before then. We talked a little bit, then I ordered him to go get some rest. We'd know more tomorrow.


*Dr. Joker was kind of a smart ass. He knew we were doctoral students and so understood what he was talking about, but he was prone to sarcasm, or well, being a smart ass. I didn't really care for him, but C said he sort of understood him.

That night; changing hospitals

After C left to take care of things at home, there was just this weird quietness. TV off, alone in my room. I don't know what I thought about even. Denial, bargaining. Anxiety probably. The nurse gave me an am.bien so I could sleep, and I vaguely remember thinking, Is that safe for the babies?

I think at this point I knew that Joshua was gone. The question was what kind of condition was Jacob in, how much fluid did he have and what should our next steps be. I must have been in some kind of shock, since I was teary, but not completely freaking out.

I woke early so I'd be ready when the radiologist got in, and C arrived. Got a phone call at maybe 8 that the radiologist was there, but we were still waiting for C. There was lag time, of course, (hospital time, as we began to call it) between C's arrival and the radiologist's.

The radiologist wheeled in this huge machine and set to work. There was a little small talk, but he knew why he was there. He spent quite some time measuring Jacob, telling us what we were seeing occasionally. I remember the different colors of the blood flow through his heart. At the bottom of the screen was the sinus pattern of the heartbeat, sort of layers of black and white, hills and valleys where they should be. It was a good few minutes, he spent, and worked to try to find pockets of fluid. Few and far between. I seem to recall between 1 and 2 cms, or 2 and 3, here or there. Very low.

When he got to Joshua, he tried to get some measurements and observe the heartbeat, but there was none. We could see his head, sort of, and limbs, but the layers of black and white did not move. He was smaller than his brother. I recall being momentarily disappointed that we didn't get to spend as much time with him, but then, of course, knowing why.

He did an external measurement of my cervix, 3.7 cm, I think.

That morning, mostly I dealt with the nurses. It occurs to me that even after he had the results, the radiologist went out to talk to the doctor, and the nurse, Brandi, came in to tell us we were being transferred to my peri's hospital. He told me there was no heartbeat on "baby b", but detailed results were being reported to my local OB on call and my peri. Brandi didn't come in for a while, but we knew what was being discussed.

I think I texted JK, briefly, then called my dad. I could barely squeak it out, "My water broke yesterday. One of the babies is gone." Before I could get much further, without hesitation, he said, "Do you want me to come out to you?" "Yes," I was all I could say, through tears. He was the only one I could say it to out loud. After that it was text with JK and C, doing the dirty work.

My dad said he'd look into flights and call me or C. We started getting ready to go to the other hospital. I think C helped me take a quick shower since it had been a few days, not washing my long hair, but at least I'd be sort of clean. They gave me some pads.

Brandi helped us with the arrangements to get to the University Hospital, and we didn't wind up leaving until close to 3 pm, me with a packet of information and an automatic admission form in an envelope on my lap. She wheeled me the back way, I think, to an elevator where I wouldn't have to see all the happy people with their new babies. As we got to the door, I said to C that I had forgotten to bring one of those little boxes of tissues from the room. Brandi parked me and said she'd be right back; she ran to the gift shop and picked up a couple of purse packs of tissues for me. "You didn't want those horrible rough tissues anyway."

It was almost an hour to the UH, and C held my hand just about the whole way.

Coming up: Getting admitted, talking to doctors, talking to family.

Thursday, December 25, 2008

Not much to say

I tried to go back to sleep, went back to bed, but I was too restless. Came downstairs and surfed on line, walked around, and wound up napping on the couch. Woke up around 1, cats wrapped around me, C. dozing and reading. I opened up my computer again.

This was my day. It occurred to me that there was little urgency at the hospital after we were admitted. they didn't automatically call in the radiologist. they didn't automatically call my peri -- they said they wanted to wait until the radiologist with the better machine came in. Why not just transfer me to the University hospital? I know they talked to someone over there, but it seems that they either weren't worried, or knew my entire pregnancy was a lost cause already. I had the leaf. I had the kind nurses and the antibiotics. J, the grief counselor, had already connected with C. I got ambien to help me sleep.

Sounds like a lost cause to me.

Seems so long ago now.

*****
My sister's pregnancy seems to be going along fine. She got an abdomin.al ce.rclage this week.

*****

Not sure if I'll post again today. Tomorrow, adventures in big city hospitals, doctors, midwestern small-mindedness, and trying to make decisions.

Thanks for reading.

A new year begins

7:13 am and I am awake. Already walked the dog (briefly) and fed her. There is just a bit of pink at the bottom of a blue night sky.

Bolted awake at 6:45, despite meds (the good stuff) at 1:30 am. C wanted to spend the day in bed, together, cozy and half asleep. I'd like to, but my heart is pounding already, and I'm trying to figure out how much I have to space the klo.nopin. Or amb.ien. Or maybe it's just too much sugar from the cookies eaten right before bed.

I'll likely check in throughout the day, fill in blanks as they come to me, perhaps.

Thank you for being here as I get all this down.

Thank you all so much for your kind supportive words. I have read every single one more than once. They mean more than I could ever say.

I wish you all a wonderful holiday, and may the new year be brighter than the past.

Love,
S

Christmas Day

I realized that I have already written about this day, so I'll just link to it here.

Oh, hell, I'll just re-print it below from the day I posted. The following days are coming, too, though since there are 10 days from beginning to end, I don't know how it will go.

Tuesday, March 25, 2008

The first day, or...

The very beginning of the end.

Three months ago today, this morning at 10 am, when I got up out of bed to use the bathroom my water broke. We got to the hospital at 10:30, maybe. and they actually made me wait. "Well, we don't know about sending you up to OB. Usually you go right up if you're 20 weeks or more, but you're only 19w3d." This is my freaking hospital. The ER doc did one of those acid tests which came back neg for amniotic fluid (how on earth?) and after they only got one heartbeat on the little handheld doppler, they sent me upstairs to OB and paged Dr. ColdFish.

They set me up in what looked like a monitoring/NST room. The nurse started to set up the monitors for contractions and each of the boys' heartbeats. She got the contractions one going, then the first heartbeat monitor, just fine. It was that second heartbeat she couldn't get. And she tried, used a different probe just in case. We reassured ourselves that that second one was always hard to find. She left just the contraction monitor and the one heartbeat monitor on until the doctor arrived. I was having very very mild contractions, and while the reader was on, the sound of the heartbeat was not amplified in the room.

The doctor did a pelvic, sort of, but was not too invasive (if that's possible with a plastic sterile speculum). It hurt a lot, but he seemed think this was a failing on my part. He went ahead and did a couple of other tests to see if the fluid was amniotic, even though, as he said, they aren't always accurate. Those tests came back negative and/or inconclusive. (So why do they use these tests?)

He did an ultrasound, but warned that it may not be very good, an old basic machine. The hospital radiologist had a much better machine, but he was out, because, you know, it's Christmas. This is my local hospital. I swear to god. I must have been in shock and/or denial to not be completely freaking out at this point.

Jacob came up right away on the ultrasound, his heart beat, I think he was even moving around a little, but there was almost no fluid in his sac. The doctor found Joshua, muttered something about him being smaller, and seemed to have a harder time finding the beat. At one point he thought he got it, and I actually exhaled, but then he corrected, and said he thought it was Jacob's from another angle, or bouncing off something. (With hindsight, this of course makes me wonder how long Joshua was actually gone, since on two separate doppler readings (about 10 or 11 days apart) his heartbeat was harder to find, and was consistently 10 beats slower than Jacob's. This was almost a week after the last check-up, but it seemed, later, that he might have been gone at least that long, based on his condition at birth.)

After this ultrasound, Dr. ColdFish said that he could call the radiologist in from home, if we wanted him to confirm the initial findings that my sacs had indeed ruptured and that it looked like "baby b" had died. He said that it's possible that he was still okay, as it was kind of a crappy machine, and he didnt have as much expertise as the radiologist with the better machine, but "I won't lie to you, this is very..." I don't even remember the word he used. Grave. Serious. Essentially, don't get your hopes up, this doesn't look good at all. He must have said that "baby a's" fluid was very, very low, and that they'd both need more than that for a decent outcome. I remember just kept saying the fluid was very low, very low.

We decided to hold off on calling the radiologist in, unless he came in for something else. It was mid afternoon at this point, so we figured we could wait until morning. I don't know why we didn't say, "hell yes, call him away from his Christmas dinner, my babies are at risk!!" Denial, probably. Or putting off the inevitable.

I got set up in a room in OB, the first of many with a falling leaf on the door. They started me on antibiotics and brought me something to eat, maybe. I had been texting with my friend, JK, the one with the sick father, back east. He had been moved home for hospice and somehow had made it through to Christmas. I let her know that it "looked like" my water might have broken, I think, but very few details as we knew little for absolutely sure, and she had enough to worry about on her own.

At 3:26 pm on Christmas day, I got a text from her that said, "Dad is gone." It shook me. This was my dad away from home when I was in college, since they lived relatively nearby. JK's mom always signed cards "Mom & Dad H." I always had a place in their home. The last time I had been there for a visit, I got the greatest hugs from him, and from her mom. That was the last time I saw Dad H. He had taken our college yearbook pictures, and they came out so good; that day holds some my favorite memories of him, the three of us. And then we went to the Aca.pulco for the best Mexican food in the neighborhood.

I remember sitting in the hospital bed looking at the text and I gasped, with tears, telling C. showing him my phone. I sent something back to her and we had a few exchanges. That's really all I remember from that night. I'm sure we watched tv or something, tried to eat. The phone calls hadn't begun yet. C went home around 10 or 11 to look after the cats, get some home sleep and take a shower. We had little idea of what lay in store, or when there would be time -- or normalcy -- for such things in the coming days.

Wednesday, December 24, 2008

Intermission -- For Dad H

My dear friend, JK, lost her father a year ago on December 25, 2007. He had the bluest, kindest eyes and gave great, loving hugs. I miss him a lot.

This is James Ta.ylor's Secret o' Life.

Just the picture and music:




Wonderful version by India.Arie from a JT Tribute Concert

The inevitable countdown

The day before the day before (Sunday, Dec 23)
Ah, finally included in the (prospective) parent club, C and I had been invited to S's for a cookie making holiday casual thing Sunday night, but I wasn't feeling great, and just wanted to cocoon at home. C was not invested either way, so we stayed in. A recent resurgence of a tenuous appetite had somehow convinced me that some instant macaroni and fake cheese meal would stay down and taste good, so it was C on the couch, me on the loveseat (where I could kind of recline) and M&FC for the evening.

Well, it seemed my stomach was not ready for such culinary adventures, and sometime in the mid evening, I rushed to the bathroom. Not to throw up. If you know what I mean and I think you do. It seemed odd to me, as I had not had such an experience in probably 3 or 4 months, but just took it to be my body changing. Again.

I felt kinda crappy and went to bed at a decent hour.

The Day Before (Monday, the 24th)
Even though we weren't traveling, C wanted to get some work done before the holidays really started so he could just enjoy a quiet week of not going in to school, so off he went. I had nothing specific planned, (except scanning the internet for cheap last minute fares so I could go be with JK, should the worst happen with her father) so I slept in, sort of, and parked myself on the loveseat again. (It's about 15 years old, kinda ugly with a cheap slipcover on it, but damn if that wasn't the best spot for naps.) So I did just that. One or the other of the cats accompanying me.

It was grey and chilly out, and spent literally the entire day on the loveseat, wrapped in an awesome down comforter throw, and getting up every now and then to try to eat something. My milk craving had mostly passed, and I was sipping diet coke and eating potato chips, just to eat something. Maybe some ramen (I know, totally gross). And ice water. Bottles filled halfway with ice, the rest with water. It was still the only way I could bear it.

And so I spent my day, on the internet, watching crappy Monday, Christmas Eve day TV and looking for cheap fares. Every so often it occurred to me that I should do something. Get up. Shower. Run a load of dishes or laundry or something. But I was really tired. And really comfy, well ensconced. Somehow, the day escaped from me, and I was in the same position on the loveseat as I was when C got home.

I had been feeling kind of achy in my abdomen, nothing terrible, maybe just growing pains, or repercussions from the night before. It occurred to me that I hadn't felt much movement, but at just over 19 weeks, I comforted myself with the fact that I probably wouldn't feel much regularly this early anyway. My lower back was a little achy, kinda, and I shifted a bit throughout the day. It was only a little ache, and hell, I was pregnant with twins. (Oh, and that great big river? The one you thought was in Egypt? It runs through my small college town, apparently.)

There were a couple of moments I briefly considered calling my OB's office, but I really felt like, nah, I'm totally over reacting, and honestly, I was tired of being condescended to by the staff, and dismissed my the doctors. (to get fluids, I usually had to call up crying (or trying to cry) because I hadn't peed all day and had no tears to cry). The ache in my back was pregnancy, a normal symptom, of course. In my belly? Last night's apocalypse and growing twins. Now that I was eating more, they were probably growing more.

We spent a quiet evening, C and I, watching TV, him reaching over to my belly every now and then to say "BOYS!" or "Boys, you just keep working hard growing, okay? You're working so hard growing."

And we went to bed.

*****

Sometimes I wonder if anything might have been different if I had called, if I would have been dismissed by the staff or even if I had come in. Joshua was probably already gone, along with most of his fluid. I wonder if we could have saved Jacob. Kept his sac from rupturing.

Hindsight isn't even 20/20. I really couldn't even imagine anything being wrong. I had just had a check up (cursory, though it may have been) and everything had seemed fine. I was eating, finally. We even had our first baby furniture: the bouncy seat that S got us.

We were almost halfway there.

Friday, December 19, 2008

Apologies

For pulling back so much. I am reading a little less, commenting a little less, mostly because everything hurts. But I am thinking of CLC and Kalakly and C. and G$ and Amy and Mrs. Spit and all those with recent anniversaries, and all those in pain and those I've left out. Honestly, I'm so sorry I can't seem to reach out.

I think about you and wish I had something good to say to you. But you are in my thoughts and in my heart.

51 weeks

Less than that, actually, depending on whether you count the date or the day.

*****
I did it today. Dipped my toe in the cold waters to see how I could handle it.

Visited S and her baby, B, today.

And it was okay, mostly. Typing that, of course I want to cry now. I figured, pop a klo.nopin, make it short and it will be okay. Maybe melt down later.

*****

Owing to various causes (her dying MIL, my own depression, her new baby) I haven't really seen S since August. She came by a couple weeks ago to pick up the mail we had been picking up for her, but it was a quick visit.

She and her husband have been on my mind a lot lately, mostly with the passing of his mother to a very, very rare cancer (like one mine had). So, last night, not sleeping despite an am.bien and the kl.onopin, I sent her an email -- just to drop a line, to say I'm thinking of you, and your family, and think I might finally be ready to meet your four-month old baby. So she caught me on gchat while I was supposed to be grading, and we made plans. A quick visit, then out to lunch (leaving B with her daddy).

Their wonderful dog, L, came running down (and up and down) the driveway to greet me, as she always does and I realized I had some random dog toy on the floor in the back seat. She greeted me a wet nose and bounded up the walk to announce my arrival, with a bark or two. L has this wonderful way of making you feel like you are her favorite human ever. Handed the toy to her, packaging and all, and she set to work opening it, while I hugged S hello. We made small talk, and S handed me a card, a gift of a round of obedience school to go to with her and L, who, she said, needed a refresher. It was a gift she had said she wanted to give way back when I first mentioned that I'd love to get a dog.

Baby B was still sleeping, but beginning to rouse, so we hung out and greeted her sleepy face, long, long eyelashes and fuzzy head. Gorgeous, this child. S played with her, had her "practice" sitting up, standing, smiling. The connection S has with her kids is amazing. She's not always a warm person, but she just exudes it with people she loves. I picked up the baby and bounced her around, and made a few silly noises, a couple of "pop!"s on the nose and got some huge toothless grins. Kissed her head. Baby head. Squirmy, I gave B back to her mother, who changed her so we could hand her off to B's dad and get going. Got a little squeeze of some luscious chunky baby legs and that was that.

My eyes are leaking.

S is so happy. She observed that she forgot how much she loves babies, and this feeling of love for her daughter. You can see it exude from her very being. "You should have this, you should be enjoying this" she said. "It's just not the way it should be. I can't believe how horrible it is. It's not fair."

She talked about how they are done having children (though they may adopt a child) and she described the sadness she's begun to feel, as she realizes she'll never have another. And quickly follows with something about a very small taste of that fear of never having it at all.

"You should have this. It's just not fair, you should be having this right now."

I held it together. There were only a couple moments where I fought public tears. We talked about other things, caught up a little, talked about losing her husband's mother. How he was doing. My experience, books that helped me. How it takes a long time. How it was with my mother, my family.

I told her about how it's been for me, as the numbness seemed to wear off this summer. How bad it was for me, and how much I wanted to go celebrate with her. She asked, gently, if we considered trying to have another child. I didn't have an answer. Instead I ranted about how I wondered if my body could do it. If I could be stable enough at some point. About how hard this has been for C.

And she said, "It's only been a year."

And I cry now, hours later, because she gets it. As much as she can. That it takes a long, long time. And I'm not fucked up because I'm still fucked up. And I can say to her, I didn't want to kill myself, but I just did not want to live. Not with this pain. Not with this. And it's okay. She is not horrified, she has cried for me, for us, herself.

So I don't have the meltdown, the one I was afraid of having because the baby. But I'm crying now, small black cat curled at my knee. I'm crying because I am so very sad, so very disappointed, traumatized, but mostly because my heart still hurts so much.

*****

The last Friday I was pregnant I spent with S, looking through a box of maternity wear, and S gave me our first piece of baby equipment, a bouncy seat, that was gone by the time the boys were, along with that box of clothing. A year ago my dad was here making soup and lecturing me about drinking organic milk for the boys.

Tuesday is 52 weeks since my water broke. Thursday makes a year.

Only a year.

Tuesday, December 16, 2008

Again

K had another stroke. Lost some use on his right side. Right arm, vision in right eye.

He really, really, really needs a new heart. That's the only thing that will help. The ONLY thing.

Please, think good thoughts, send good vibes, pray if that's your thing. For K, for B and for their family. He has to get a heart, and soon.

There's nothing else to say.

Saturday, December 13, 2008

Boys

Found out one year ago today.

After delayed results, and many phone calls. From the peri himself.

Two chromosomally normal boys.

Wednesday, December 10, 2008

feeling life

I told my 90-year old grandmother about my pregnancy at about 12 weeks, after had she spent 10 minutes on the phone complaining about how she was no good any more (too tired, doesn't cook or drive, etc). This is the grandmother who knitted every sweater, slipper, and afghan in my house until I was a teenager.

I told her we needed her, especially in May. I told her she needed to get busy knitting, booties, blanket, sweater, whatever she wanted, but she better get busy. And that what ever she made, I needed two. She was thrilled.

She said she'd start when I "feel life". That's when she did it for my mom, and for herself. When I told her I saw them on the ultrasound she was astounded, (modern technology) and when my dad showed her the copies of the NT screening ultrasound, she was... smitten. "You take care of my babies," she said. I told her she better get busy. She asked what I wanted, and what colors. (God forbid you wrap a boy in a pink blanket) and made noises about going to the store to get yarn.

Everytime we talked, she asked if we knew the sexes yet. She wanted to wait to knit blankets until I felt life.

One year ago tonight, I felt undeniable movement. At about 17 weeks, I had already felt flutters, little tickles on the inside of my belly. The heartbeats were in different places when I was getting fluids a few days earlier.

One year ago tonight, I was definitely getting my appetite back. Milk. Very cold milk. In cereal. Bowl after bowl. Kept it down. Glasses of milk. (As a rule, I never drink milk, except occasional bowls of cereal or freshly made chocolate chip cookies.)

One year ago tonight I was sitting on the couch grading papers and felt this... thump on the right side of my belly. I put my hand where I felt the thump and someone pushed back. A little round someone.

I looked up at C and told him that I just felt one of them move. We were both silent, in awe, then I went from zero to bawling in about 10 seconds.

Feeling life. With my entire body, my whole heart.

*****
Four days later I had a little brown discharge. About 18 weeks. Not much. Went away in a few days. Not much movement, but still too early for anything consistent. About 10 days later my water broke.

Tuesday, December 9, 2008

When the numbness wears off

This must be what it feels like. You know, those pins and needles, weak muscles.

Late August, September...sensory memories... like now, too.

It's just... it was so horrible at first, I was so raw and, it almost destroyed me, and well, you know. And the pain went on and on and then it dissipated a little, a few tentative steps into the worlds, and it was okay....

It's the only way I can figure it. How last semester, just teaching was okay. I could get through, do some work, focus a little and connect with my class. This semester, long and difficult. I reviewed some of the grading I did for the recent batch of papers, and realized that I blew it. That god my students are point mongers. No grading on K.lonopin anymore, i guess, though I have no idea how I'll get through it.

I am eating sugar cookies and that's about it. Coffee, too. My stomach is huge. Sigmund would have a ton of fun with that, eh?

And the friends I invited here for a few "girl nights" won't be able to come (the idea was a long shot anyway), so C will stay here to take care of me. Maybe he'll have them here later. He says "You're stuck with me. We'll be together. " And I think how he must long to get away and have his own time. And how it's all just not fair. Nothing.

As horrible as it was, I think I'd rather go back to being numb.

Saturday, December 6, 2008

Ghost Pains

Is that what they call them? You know, after a limb has been amputated, it still feels like it's there? I don't know.

I'm having all kinds of sense memories, especially in my belly. Or maybe I'm just feeling the emptiness. I had a similar sense back in September, those little twinges and pulls as the embryos dig in.

I went to the market today and only got stuff for me and Stella. Basics, too, like paper goods, diet Coke, but nothing specifically for C. I am inconsiderate. I am self-centered right now. I am self centered.


I'm so tired of the up and down. And I"m torturing myself by going back to emails from a year ago when I was starting to feel positively pregnant, like a part of the mom club. I need to stop that.

I just can't seem to get it right. And I'm so tired of these stupid, weepy posts. I want to be happy, or at least functional.

I'm so tired.

Friday, December 5, 2008

Left foot

...how does it go? What's that next step?

I've been doing so much better, but school (teaching specifically) is making me (more) crazy, insecure, panicky, failed.

And this is my 201st post. Woo me. I've come so far.

Still

Just ran into an old favorite prof on the way into school. She asked how things were going, we chatted a bit and I told her the cliff notes version of what happened ("well, I was pregnant last year, and I lost them at 20 weeks") and I said it very matter of factly, but as she left the elevator, my eyes began to sting, and my throat is still tight.

I'm okay and I will be okay, but...

Still.

Thursday, December 4, 2008

Miscellaneous (edited)

I'm doing okay. Better, in fact, than I have in a while. Doggie Stella and meds are starting to work their magic. Still, all fucked up, but I haven't had any thoughts about how I don't want to live like this. (I wasn't suicidal, more like hopeless.) I'm not exactly hopeful, now, but less hopeless.

Stella continues to be a wonderful dog. I think we are all getting to know each other, she's still nervous when we leave the house, but no destructive behavior (so far). Her beagle-y will to follow a scent sometimes makes walks a challenge, but there's nothing like watching a 25-pound dog attempt to gallop and get excited when I say "Okay, Stella, let's go home! Let's go home!"

I'll stop gushing now. School continues to be a panic inducing. One more week of teaching though, so that's good. Still no idea what's going to happen next semester.

Still sad. Anniversaries approaching. I see others' anniversaries approaching, too. I'm sorry I haven't been there yet to support you, trying to manage the grief, still. Fewer meltdowns. Low energy, etc. We have been talking about maybe candles for the 10 days of anniversaries. Trying to figure out a long-term, more permanent marker for them. Not sure yet.

No word on K yet. I gave B the option to read my blog, but she felt kind of intrusive reading such intense, personal words. And this is part of why I love her. My friend S's MIL passed away on Thanksgiving, and my cousin's wife did on Tuesday. Peaceful deaths for both. It seems like there is so much sadness. So much to be sad about. Is this what grown up life is like? Constant difficulty, challenge and grief?

The dog helps. The cats too. Some interactions are better than others, but that is the good. The furry four-legged love-givers. I may depend on it more than I should. Whatever works, I guess.

C continues to be amazingly supportive, too.

I am reading and thinking of you, even if I am quiet, and sending my love to you.

Saturday, November 29, 2008

Yesterday was a bad day

So, in fact was the one before it.

*****
Thank you for your responses to my last few posts. Just some things rolling around in my head. I wasn't going to do a thanksgiving type post, because, honestly, there's not a lot I feel thankful for. This is not the holiday it's supposed to be and (despite some assistance from meds and the doggie), I really am struggling to feel positive about anything. My "up", really is just not worrying about *something* or bitching at C.

So, when I was thinking to myself, "everything sucks," and "I don't have anything good," and the holidays are all consumerised and if I hear the word Christmas associated with the phrase "give them what they really want this year" I was about to lose it.

I tried to distract myself with grading the dreaded student papers, but couldn't get beyond the (very generous) APA style check because at least a half a dozen of them were so egregious (just follow the sample, people!), even C was kind of cowering at my ranting. So much for that.

So we took the dog for her evening walk, and she did a good job, and the air was not bitterly cold the way it has been, and we all came back feeling a little better. Until the dog tried to chase one of the cats and there was some drama, but everyone came out unscathed.

And the adrenaline or endorphins or whatever they were kicked in and it occurred to me that, okay, I don't have my sons, I do have a safe home a good relationship, and wild kingdom in my living room. Friends and family who love me.

*****
A few years ago Jim Ca.rrey and Kate Win.slet starred in a small film in which, for a fee, one could have entire memories of a relationship completely erased from one's mind. Just gone. No pain, no muss, no fuss. Wake up, and the relationship is gone. In recent weeks, I've had the, well, almost the wish to just remove Septe.mber to Januar.y (maybe even today) from my mind. Just go in and scoop it out. All the nausea and puking, hospital stays, exhaustion, worries, pain, loss, grief... you get the idea. Just erase it. Take it out. I'm tired of feeling all this, it hurts too much, it doesn't seem to be getting me anywhere (I know my shrink would disagree), because honestly, I just want to feel okay again. I had been on my way to feeling okay, achieving some goals, coming into my own.

And then I got pregnant. Very pregnant. And I was sick, and lost them and all that pain and so much of it was just so terribly hard. How nice it would be to go on with my life as if nothing at all happened.

But I know. I know that in between the puking and the doctor visits and worry, and all of that, I was just so happy. After we saw the heartbeats, I knew we were in it for the long haul. Even though I had puked three times already that day and just wanted something to stop the nausea, I knew that we would be part of the 85% that made it. I loved them already. I didn't even know it yet.

And yes, I felt special because I was going through something difficult for something good, and I was making jokes, too. When I was losing weight and crying because I just wanted to eat something and enjoy it without throwing it up, I loved them already.

And when I felt something lurch in my belly, and put my hand there, and something, someone pushed back...I loved them already, at 17 weeks.

I was happy. I had no idea how happy. And it wasn't until that morning, Christmas morning at 10, when I leaked all over my pajama and the bathroom floor and knew something was horribly wrong... it wasn't until then that I knew how happy I was, and I knew how much I loved them.

So that whole, scooping out chunks of my memory, could I do that without losing those good parts? In the movie, it's all or nothing. I really don't want to lose that love, that joy. I fear, though that I've already lost it, it's so far away.

I can't have my boys, but I'm so very thankful that I got to love them.

Friday, November 28, 2008

Thankful

Yes, I'm a day late. Whatever.

I am thankful...

-- that I have a loving, patient strong husband.
-- that I have a safe, strong roof over my head.
-- that I have a home that is warm.
-- that I have enough to eat.
-- that I have loving friends and family who show me their love all the time.
-- that I have the opportunity to be educated in a field that normally impassions me.
-- that I have health insurance that affords me medical and professional support.
-- that I have found loving, supportive community from wonderfully kind people I have never met.
-- that I got to feel my sons move inside me, react to my touch.
-- that I got to feel the joy of loving them, however briefly they were with me.

Thursday, November 27, 2008

What's the difference between...

God and a doctor?

God knows he's not a doctor. (ba/dum/bum)

*****
In which I rant and over-explain...

Just to clarify a few things, I think of all the doctors I've seen in this apparently Sisyphean quest to have a child (and other issues as well), Dr. C exhibits the least amount of god-complex I've encountered in the medical profession.

If it weren't for a few chats about Saturday appointments and the church trips his wife has taken with his daughter, I wouldn't have a clue that he even has a belief in god. Generally I ignore the little slogan and assume that his wife had something to do with the cutesy picture. She is the one in charge of the "wellness" part of the practice. Yoga, nutrition, massage, etc.

They have had their own struggles with family-building.

He listens to my concerns, answers my questions respectfully, and talks to me like an equal. Shakes my hand every time we meet. He hugged me after we lost the boys. In fact, everyone in the office hugged me. Offered his condolences, wrote down the boys' names in my file. We talk like people.

*****
So, Yeah, I'm pissed about the whole "gift from god thing," and I don't understand how that could be prominently displayed in an RE's office. Especially when all his behavior and language seems to contradict this really inappropriate sentiment. Since I've seen the human side of him, I'm tempted, whenever it is that I'm ready to go back, to ask him about it.

Wednesday, November 26, 2008

So how does that work?

Now, I love my RE, but he has this saying on his website that says a child is a gift from God. I know this is some sort of religious thing, but I was just thinking about this.

If god gives people children as gifts, does it have to do with deserving? How does he decide? And what about infertiles? did they just pick the short straw? are they undeserving? Now what about dead babies? The baby part is a gift, but the dead thing, is pretty much a curse, or at least it sucks really bad. And is' it worse to have it and lose it than never to have it at all?

I know it's all bullshit, but it just occurred to me and pissed me off, too.

How do some people get gifts and other people get shit? Aside from all that "life isn't fair" stuff.

Whatever.

*P.S. I'm sorry if this was offensive. And my RE doesn't shove religion on anyone (at least not us). And as a doctor, how weird is it that there would be a religious-ish saying on his website?

It was even on the silver spoons he gave us when he released us to the OB. And yes, I have wondered if I should give them back. But that's just me being bitter. Or maybe it's the Kl.onopin talking.

Pissed off

This is nothing but bitching. Feel free to ignore.

*****

Woke up this morning to a very contrite looking beagle and a small circle pee on the carpet of the rental. Maybe we should be some nature's miracle in the family size. Stella's been hard to walk lately, I think there are new cats in the neighborhood, possibly in heat distracting her to no end. I got one of those gentle harnesses, but even considering I'm almost ABD, I still can quite figure out how to get it on her right. C took her out a little early last night and only briefly, so that's all I can figure to explain the first accident, almost 2 weeks in. She's also started to chew at paper, and this morning I pulled one of my bras out of her mouth. Honeymoon's over, I guess.

I'm in a bad mood and I think she's feeding into it so that's probably not helping.

Otherwise, things are going relatively well with the dog considering we've only had her 10 days, though I do feel like she's entirely my responsibility and and I don't really know what I'm doing, so there's that stressor that I thought I was eliminating by dropping all my classes. I am loving her though, and despite the stress, she is such a love that it does fill just a little piece of a piece of my heart.

*****

My cousin who announced her pregnancy before the pee stick was dry posted a gorgeous ultrasound on facebook with "It's a boy!" as a title. This is their third. Due late April, early May (right around all our missed anniversaries -- mom's death, A's loss, the boys' due date). Happy as can be. And why shouldn't she be.

*****

My sister seems to continue to be pregnant, and despite my wishes to try to support her, she has dismissed me as too fucked up (my words, not hers) and she is clearly struggling herself. Freaking the fuck out. Should she get that far, she will have an abd cercla.ge in December and is due mid-July (right before my birthday), but will probably be sectioned early because of the cercla.ge.

*****

Was almost 10 minutes late for my appointment with Dr. Shrink yesterday and, despite my slightly improved state of mind, cried my way through it. He's doubling my dose.

He also wrote a letter to the local common pleas court excusing me from grand jury duty the first second and third week of the first second and third month of the year, as it would exacerbate my condition. Also starts the day after the anniversary of Joshua's delivery. Yes, I am all fucked up. A freak. Ill. Broken. Disabled.

*****

After expressing my concern about next semester, Dr. Shrink said to take as light a teaching load as possible and to enroll in courses I could easily pull out of if I needed to.

My student's latest papers have been sitting on my shelf for over a week because I just can't seem to bear to look at them. Some of them will fine, some will be good, and a bunch will be pretty fucking bad.

*****

Last week getting ready to go teach my way to class, I started to throw up, just the way I did the first time when I was pregnant. I only made it to the kitchen sink and proceeded to puke my guts out, which was saying something since all I had to eat was coffee and a cookie. I threw up so hard I couldn't breathe.

*****

Told B about my blog and gave her links to posts that reference her and K. They still wait for a heart, which means waiting for someone to die in an accident this holiday season. She has only been supportive of me, but I do fear that I will freak her out with some of what's on here. She has told me not to worry, but that's what i do. I worry.

My other cousin's wife is in hospice now and has given the family permission to "know" about it. They are very private, but are willing to share this at least. They are in Texas. Her breast cancer has moved to her brain and she doesn't have much time left at all.

*****

Anniversaries abound: Thanksgiving, more hospital visits, delayed test results, a month until Christmas. 10 days of trauma. And they are gone a year.

Sunday, November 23, 2008

And back again

(I've mentioned that I hate roller coasters, right?)

Chromoso.mally Normal XY x 2

That's what the peri said, after I made phone call after call to get the results of our amnio, done on 11/27, or a year ago this coming Tuesday. 15 weeks and 3 days according to my calendar (15 and 1 according to them).

Oh, they told you it was 2 chromos.omally normal boys, right? he said.

And then C walked around, the widest smile I have ever seen, saying "BOYS!" and really began to imagine our new life. We were careful, we knew that things could happen in utero, that anything could happen, but "chromosomally" normal -- our chance for our babies was good. Clerical errors delayed our receiving these results, so we had 10 or 12 days of "Boys!" and imagining our life. Before it all went bad.

I couldn't eat much on Thanksgiving. I spent it on the couch, trying to sip diet coke and not be queasy. C cooked a beautiful meal, and I ate as much as I could, but the next day I was at the local hosp for dehydration again.

*****
Right now every other word on TV and out there in the world is "Christmas." I just don't know how I'm going to get through it.

Yes, things are marginally better. I leave the house. I focus on dear four-legged creatures who shower me with love. Sweet Stella snores on her pillow in the corner, giving me a reason to get up in the morning. There are glimpses of that thi.ng with fe.athers.

Better, but not okay. I had some ideas about having a couple of dear Boston friends here for New Years, so C could go out of town to see his dear friends. But I can't seem to make the phone calls, emails. Not yet.

Dr. Shrink appointment on Tuesday. Maybe that will give me courage.

In the mean time, I don't know how I'm going to get through it.

Saturday, November 22, 2008

I'm doing okay.

Thank you so much for your loving and thoughtful comments. It means a lot to hear from you. You are an amazing group of people. My brain feels kind of disorganized, but I'll share some of what is going on.

-- B&K found the blog, and though they have not indicated their feelings about it, I'm trying to sort through my own.

-- C and I got a dog. Her name is Stella and she's a 3-year old beagle-beagle mix. Extremely sweet, overall very good with the cats (Hazel laid down and took a nap with her the other day) and pretty low maintenance. After both my shrink and Dr. Shrink independently said a low-key dog might be a good idea, a reason to get out of bed, I went to the shelter for a doggie-date. That went well, so we did an overnight, and that sealed the deal. (Boy, am I glad I'm not dating anymore.)

She gets kind of anxious when I leave and I'm sure I'm going to have a post full of questions, soon, but in the meantime, so far so good. Caring for this little creature is bringing up quite a bit of miscellaneous anxiety for me, along with the "new parent" sort of concerns. C is smitten with her, and we often go for evening walks together.

Sometimes I wonder what the hell I was thinking, but really? It feels good. We both get our walks and I jump right out of bed to take her out in the morning and, more than not, it feels good to have new love of this little creature. Something that's nice, is that she's too short to jump on the furniture (so far), so the cats still dominate anything that's 2 feet or higher.

I'm focused on something, even though I still feel a lot of anxiety, it's nice to have something like this to worry about, too, rather than just my dismal future. Sometimes distraction is good. And, oh, she is so sweet.



-- The week before we got her, I was having almost daily meltdowns and not getting out of bed except for school. Dr. Shrink adjusted my meds slightly again. I was joking about maybe a residential stay because I was wondering how I was going to get through the week, let alone the anniversaries. It wasn't that I wanted to die, I just didn't want to live this life. I am still depressed and anxious, but slightly more functional. C says I seem brighter, better. I have actually gone a couple of days without crying.

-- My shrink thinks this experience may potentially help me work through some of my "mother" issues (with losing the boys, both with becoming and being a mother, and missing my own mother). The week before Stella came home, I woke up saying "Mom!" a number of times. Hasn't happened since.

-- I'm still freaking about school, and getting used to the idea that right now I really am disabled. However, after my petition was approved (boy did that hurt more than I thought it would), my department chair sent me an email saying that she was glad that I was taking care of myself, and that they were not letting go of me, they would be there when I was feeling better.

-- So, yesterday, or the day before, I realized that, just for a moment, I had a glimpse of something in my mind's eye that looked kind of like hope. Just for a very brief moment. It was scary, but short. But the memory of the moment has stayed with me.

Scary.

Friday, November 21, 2008

just the briefest, momentary glimpse this morning


**Photo by J. Kudron

hanging in

Day by day. C takes good care of me.

There's a lot I'd like to talk about, but I seem to be lacking words.

Thanks for hanging in there with me, checking in on me. It really means so much to me.

Thursday, November 13, 2008

Radio Silence

For a few days, to sit with my thoughts. Doubled up on therapy, regular contact with Dr. Shrink, and just one foot after the other.

Your comments and emails have meant more to me during these dark times than I could ever tell you. Thank you for your love, and just for being there.

Monday, November 10, 2008

No title...

Why do I need to be here?

Really, I have nothing to give, nothing to share.

I can listen, but only for so long. I can read, but my mind wanders. Where? I don’t know. To the lump in my throat. To the panicky heart. Everything comes back to me. I am selfish.

I don’t want to die. But I don’t want to live. Not like this.

I am petulant. If I can’t have what I want, I don’t want anything. No, that’s not true. Maybe it’s fear that since it seems I can’t have this, I won’t be able to have anything.

When Mom died, I was there. It was just quiet, her rasp getting quieter, our silent weeping, our hands on her, our words, “it’s okay to go now.” I learned what it was to physically let go, to physically grieve. A huge hole in my chest, the longing to have her arms around me.

I wasn’t there when my boys died. I carried one, unaware. With no sacred thought. One day he was just gone, gone for days.

When I let go of the other, there was only pain. Sensations. Like a dream. I didn’t know what was his body, what the doctors or nurses said or did. Or how long his little heart beat outside my womb, briefly. With me, unaware.

There was no peace. No dignity. For any of us.

My chest empty and black. A huge hole. My uterus empty and sore.

Afterward, at the hospital they gave us stuffed teddy bears. One big, one small. We wondered if it was because our boys, one bigger and one smaller, or if it was supposed to be mother child.

I absently held the larger. Toyed with its ear, rubbed the ribbon between my fingers. It sits now, in C's office, in the bag we took home from the hospital, with their hats and blankets. I can’t bear to get it out. Though my arms long for my baby, my babies, to hold.

*****
I can’t live like this. I eat, out of habit. I work, because I am paid to. After half an hour TV, DVD, I just don't connect.

I play games on the computer. Puzzle games. Sometimes I win. Sometimes I don’t. I don’t really care. I read blogs. They make me laugh, they make me smile. They make me remember. They give me hope that there is life after this. That the pain that courses through me, fades, just enough to keep going. To find another life after this.

Crap

I just spent the last 2 hours paying a bunch of bills, most of them medical, some of them (supposedly) overdue and come to find out that the Peri, the one who saw me ONCE during the month of November for my amnio, his associate saw me ONCE during the month of November for my NT screening has sent my bill over to collections (bills paid left and right for for every goddammmed service you could ask for (oh, and I love getting billed twice for ultrasounds because they were twins -- twice the jelly?), yes, so that bill has gone over to collections. How much is tht bill you ask? How much??

$7,000.00


Yes, I yelled and ranted an cried and cocld not find one goddammed person who could give me any information because by the time I finally reached an office that might have any information it was past business hours.

I know most of this was overed by I am so angry by the bureaucracy and carelessness and the fact that my babies DIED under their care, but I still owe some rediculous amount, after insurance, I'm sure. Once I thnk I have one bill taken care of another shows in the mail.

There's some joke about being worth more dead than alive, but between this and financial aid for grad school I'm not sure it's true.

Sunday, November 9, 2008

And I'm just so tired

Of having nothing else to say.

I'm just so tired of feeling like this.

I know

I know I know I know I know I know.

There's no great plan in the universe out there, set up to slap me down every time I try to get up.

I know.

And I know that even thought it feels like every single thing sucks and is just telling me to give it up and let the car wander off the highway, I don't, because I know there are things that don't suck and there are lots of people who love me and who I love. And everything doesn't suck like students who share news with me and colleagues who try to get a smile from me when they see me down.

And every day is a fucking gift.

I just doesn't feel like it.

Last winter, when one thing after another after another just kept crapping all over me, I know it wasn't some message or punishment. The universe is not focused just on me.

I know that President-elect Obama will try to do good things for our country. I hope -- oh, god I hope -- that K comes home soon with a healthy heart.

I know that even though it feels like there is no fucking point to even trying to find pleasure because it will just end in pain -- or it will just end -- that that is just grief and depression talking.

I know that I have a lot to be grateful for. I have so many things I can look back to to find my "self" (chocolate, well, oreos) readings (though I can't concentrate) knitting (though I never finish anything, especially that gorgeous green blanket I started, imagining it for my child or for my sister's child). And the cats will walk all over the paints.

I know my sister's pregnancy is a very, very good thing. Not meant to make me feel even more isolated. Not meant to make me fear that I will never be pregnant again. Or be a mother, because I am so thoroughly emotionally wrung out right now. Not meant to make me fear for her safety, or the safety of her little one.

And I know she will do everything she can to keep this from becoming a wedge between us, but somehow, I fear it will. And I have never wanted anything more for her than this child she is carrying.

I know this doesn't mean I am the freak I always feared I was. I know this doesn't mean that and I will be the childless aunt and uncle at every event. I know that eventually Christmas will be a holiday I can participate in.

I know this depression doesn't mean that I am the permanently disabled. It doesn't mean my arms will forever be empty.

But it really feels like it.

*****
I realized yesterday that part of what keeps me from volunteering at the animal shelter is my own selfishness. Last week, I sat on the floor with a sweet 25-lb. bundle of dog who lolled her eyes as I rubbed her jowls and leaned all over my lap so I could rub her belly. And I can't help but smile and doggie-coo.

That's why I haven't seen S's almost 3 month old baby: With her great big cheeks and arms and legs rolled with sweet squishy baby fat, looking me in the eye with a grin as I coo. And take in her baby smell as I kiss her head. And love every moment of it.

It's the giving her back. It's the knowing that this is not my family, not my baby. Two and a half years, 4 months of puking, endless doctors appointments. Hope upon fear upon hope.

And I say goodbye, have a nice evening, take care and I get into my empty car and I drive home with my empty arms. To the quiet house, and my loving chirpy cats and my husband who loves me so much he puts up with all my crap.

It is a cliche, but my arms are empty. They crave the weight of my own baby in my arms. Or the pull of the leash as I push the stroller at the fall festival.

I know I am selfish. I know I took for granted my whole life that I would get all that.

I know there is a good chance I will get none of it. I know I am feeling sorry for myself. I know I seem ungrateful for the wonderful things that I do have. I have so much.

So I Tried

Long talk with C, which didn't help.

Went out to go spend money I don't have on some toy or something. After a couple of stops I wound up in a sporting goods store of all places, and found wonderful thick squishy comfy socks. I bought 3 overpriced pairs, even intending to share with C. I LOVE think squishy sock. They're better than comfort food for me.

I was okay until I left the store and sobbed the entire 20 miles home. Thinking about how ruined I feel, not just grieving my boys, the life I left behind, but any hope I've felt, any enjoyment. How short-lived any pleasure seemed to be.

But I had those socks, and I could just go home and put them on and get into bed with cozy jammies. I even suggested ordering in pizza for dinner. We hung out and watched a movie and a half -- it was hard to focus, even though it was one I enjoy. My concentration is shit. Then C put on "Anch.orman' which always brings me a laugh. And did. It felt good.

The red light on my crack.berry blinked. It was from my sister. She'd been quiet lately. I knew she had an FET recently and I had dropped her a quick line yesterday to see how it went.

Positive. Doubling. Holding off any news until I ask for it.

Of course.

There are just no more words.

Saturday, November 8, 2008

Friday, November 7, 2008

Really

How do you find you? How do you start from scratch and figure out what makes you happy and makes you tick and makes you function more or less well in this world?

What steps have you taken to find your way back to you? Not the old you, but the new normal you that you can live with? How is it going?

Bonus Question: How do you find happy again?

Thursday, November 6, 2008

How do you find you?

Well, today I met with my department chair (KR), the associate dean of the graduate school (BC), the associate director (AZ) of disability services, and someone else (VR) who was extremely helpful but whose title I've forgotten, and probably others I'm leaving out.

Monday I met with my mentor who suggested dropping my heaviest class and talking to someone at disability services to work out something with the graduate school so I could keep my assistantship. AZ gave me a form to give Dr. Shrink to complete during our follow-up appointment, the one set up to see how I was doing with the med change. Dr. Shrink wondered if dropping all my classes might be the best route, with just keeping the one course I teach, if I can. I thought I could, but how would the university deal? He completed the form, which I shared with AZ, who helped me set up a meeting with VR to help figure out what to do.

I totally forgot to include KR until the last minute, so I sent her an email filling her in and inviting her to the meeting. She didn't attend, but spoke with VR expressing her support of whatever needs to be done to, well, support me.

Meeting this morning: Surprise! Associate Dean will join us and I am so glad that remembered to take the Klo.nopin a half an hour earlier.

Everyone was very supportive and spoke very specifically about what was what, what implications were and setting up a plan so that I would still remain a student with the least hassle, even if it turns out that I decide I need another semester off. Extremely supportive and sensitive, too.

Forms and letters were initiated, forwarded, clarified. There will be a meeting of the graduate council (coincidentally) on Tuesday afternoon so I should hear something soon. No one anticipates any glitches or problems, as long as forms are filled out appropriately.

So why do I still want to cry? Oh, there are million answers.

One that comes up is "disability." This is why I'm being allowed to do this. I've developed a disability, which has hindered my ability to focus on, complete, continue my work.

There is nothing wrong with disability. Jesus C.hrist I was this close to completing certification and a masters' degree in the field. and yet.

I am disabled.

My whole young life I worried that I was weird, different, oversensitive. Spacey, "in my own world," said my mother, the special education teacher.

One of the greatest realizations for me as an adult was that everyone is fucked up in one way or another. Some hide it better, for some it just shows up in less detectable ways.

There is nothing wrong with being disabled. After the year I had, that letter I wrote back in April, the one before my sister's twins were lost, before B's father died. There is no wonder that I am affected.

I am severely depressed. I have the insurance code to prove it. I don't take care of myself. I don't take care of my house. My husband was sick this week (sinus and ear infections), sicker than I've seen in a long time. I took care of him. Sort of. I bought him liquids, and medicines and took him to the doctor. I made him tea, and made him eat, and got him salve for his irritated nose. I fed the cats and gave them their medicine. I took his crankiness. I slept in the other room.

It was odd to realize that I really do very little. Groceries. Occasional laundry. I pay all the bills.

I think the meds (cym.balt.a and K) are beginning to help. Maybe there are fewer hours that I am weepy, though I had a complete meltdown two days in a row, like panic attack, sobbing in the shower, wailing in the car at 65 mph. On the way to Dr. Shrink. Better, but not better.

Maybe the better is the seeing. The realizing how bad things are. How really sad I am. How I have no idea who I am anymore. How the hope is gone.

*****

C recorded Obama's wonderful acceptance speech. Oh, it was wonderful. I teared up with the ideas and the hope and change and the humanity. I'm normally a political analysis junkie -- speeches like that are totally my thing.

But this was different. I couldn't feel it. I couldn't invest in the hope. I wouldn't, I mean, couldn't really engage with it. Like I was walled off from it. Bullet-proof glass. I could hear it, see it, but couldn't feel it. The maudlin in me says my "heart was walled off" from it. I had no trust in it.

For every good there is bad. Obama in the White House, K in the hospital. Support from school, but...what? Emptiness. I don't know.

Part of me wishes I could just drop teaching that, too, even though I've started to connect with my students. Something good. Something scheduled. A reason to get out of bed and focus my brain. Even if I don't think I want to.

I look around me and say, set up a schedule: laundry. writing. clean up the office. clean up the bedroom. and then I think, Yeah. Uh huh. Like that's going to happen.

I want something happy to engage in. I want to be hopeful. I want to play. And then I'll feel like, eh.

I have a wonderful husband who is tired of taking care of everything. He needs someone to take care of him. Or he needs to not take care of everything (not that he does, but he does what basic things need to be done).

Dr. Shrink said that I need to do *something* every day. Like go for a walk with C. Something.

I had nothing to suggest. And then I said, a dog. We've been sort of talking about maybe getting a dog. He said a dog, not a puppy, but a dog might provide something good to focus on. Force me to get out of the house for walks. Focus on someone not me. Take care of something, different from the cats.

I am still fantasizing about a dog. Even visited one a few times at the shelter -- how could I not, now, with virtual professional approval. A three-year old beagle, very sad looking at first, but the second time I saw her, she perked up, snuffled at my face, tail wagging, belly ripe for the rubbing. Great with cats. Good size.

C is worried that the next time I melt down, a dog will be another responsibility for him. I fantasize that this would give me a little creature to take care of, to focus on. A baby that's not a baby. Oh, yeah, that's healthy. But a (happy) little creature to take out to play when C just wants to sit on the couch and watch movies. "Playdates" with my friends with dogs. Or maybe I'm just looking for another club to belong to since I got kicked out of the Mommy club. And aside from the Dead Baby Club. Not that I don't love you all.

C says to wait to the meds are stable. Til we can get our house out of the state of squalor in which we've been living. I want to do this, I want to do this now. I want to believe that the reverse will happen, that being engaged with a dog will help me engage in life.

Honestly, I don't know who I am. What I want. What I even enjoy any more. I don't even know if I really know how to enjoy anything anymore. It's sort of like waiting for the other shoe to drop, but I don't even feel the first shoe. Yes, this is depression. Yes, this is grief.

How do I find my way back to me?

How do you?

Fixing Broken Hearts

If you've been reading here for a little while, you may remember hearing about my friend B, and the struggles her husband has been having with co.nges.tive he.art fai.lure.

Well, K, the husband of one of my oldest and dearest friends, B, is back at Col.umbia Presb.yterian Hospital, at the top of the list for a heart transplant, after several years, and the highest of technology to keep him alive with conge.stive heart f.ailure. The technology is starting to reach its limit and K will be in the hospital until he receives a new heart.

Let me say it again: He will not leave the hospital until he has a new heart. Even though he is at the top of the list, K has a difficult blood type to match, which makes the process more difficult.

Seeing as this is not something you can just go donate, or get tested for, I'm asking that everyone who is an organ donor to let their loved ones, especially their health care proxy that they want their organs donated, even if it says so on their driver's license (as these can get separated in an accident). Make it clear to those who can make those kinds of decisions for you.

I know this is not something people want to think about, especially because donating a heart means that some family has lost a loved one. Should the worst happen for you or someone you love, this could be the one positive outcome of a horrific loss.

I love B & K, I feel helpless, and I would give them my own heart if I could. In the meantime, they wait, K in the hospital, and B caring for their two little boys.

All I can do is try to raise some awareness of the importance of organ donation. I'm going to try to post some links with information about organ donations here and in the sidebar.

Thanks for reading, and keeping B & K in your thoughts.

Sunday, November 2, 2008

Hate

I am just full of hate.

That about sums it up.

Just ignore my previous post

There is nothing I want nothing that i can ever really hope to happen, to receive to wish for.

Soon the "wish lists" requests from the inlaws are going to to be flowing in, looking for titles of DVD and books and CDs and all I can think is "really?" Are you seriously asking me what present I want to open on december 25 surrounded by in laws and nieces and nephews, all of whom love me very much, but will never ever in a hundred years give me what I wish for.

Hope.

Faith that things will bd better. Without huge back of pills. Without the sorry looks of colleagues and friends weho excuse my poor friendship skills, still.\

The will to get out of bed so I can accomplish somehting I care about. So I can take care of my husband. My house. My relationships.

The desire to take care of myself. The desire to eat food. food that I can actually enjoy. The way i used to. Instead of stuffing my mouth with things that used to taste good, that used to comfort.

Stability so that my husband doesn't worry when I come home late.

Two days in a row where I feel okay, like maybe I will actually get through this with my head on straight. without ruining my career or my relationships.

The ability to engage in something I love to do. Jus tfor a few hours. And without feeling like it's lost when it's over.

I want a do-over.

I want to get to feel that hope. The anticipation.

Cautions joy.

Hope.

*****

Right now, hope is wishing that I can get stable enough so that I can get off the meds so i can take the lower power meds so I can think about trying to have a living chid.

Right now, hope is thinking that by the time I'm stable my eggs will be any good any more.

Right now, hope is that thing with feathers... I can't put my fingers on it, the hope that we can try to have a child, that all this pain and heartache will be worth it in the end.

Or that we will find some peace in never having a child.

*****

And honestly, I'm tired of writing posts like this. I want to move foreard, iwant to be better. I just can't see it from here.

Don't worry, i'm not suicidal. I have meds, I have supports, friends, phone numbers, I have an appointment with the psychiatrist on Tuesday. Sometimes, though, though the hopelessness just overwhelms me.

Like today.

Sunday, October 26, 2008

With apologies to Al.anis Mor.isette

All I really want is to be normal.

To feel normal. Not this 'new normal', but some semblance of the person I was, I was becoming the one who was looking forward to life and challenges and making something of herself despite all those years of doubt. The one who finally said, yes, I can do this. I like this person. She will do great things.

All I want is to feel normal without feeling like something is missing, something is off. Like something is wrong because I'm not miserable.

All I really want is to move forward into my life. Not even confidently. Just not shaking with fear. Not weeping with indecision. Not tied to some past dream that may or may not ever come true.

Saturday, October 25, 2008

Processing

Some of the medication has begun to help. I'm feeling a little less panicky and jittery, a little less weepy. Still scared. Still sad. Still lost.

Maybe a little more lost. Trying to figure out, again, how to go on with the next 6 months. To confront somethings or to withdraw from them. As I type that the lump in my throat grows and my eyes get a little glassy.

C is working hard to take care of me, but he still struggles. Needs his own time to heal. It is a weight on his shoulders.

The psychiatrist says to err on the side of pulling too far back from stressors like school, so I can heal. C says just focus on getting better. If I do that, my studies get pushed back probably six months. At least. What does it do to my professional development? What does it do to the rest of my life? What does six months matter in all this? Where am I actually going with my studies. What does any of this matter? In the scheme of things, what does any of it matter?

Talking with some of my colleagues/classmates, they say push through. You'll be glad when it's done. Some say confront the rigid prof, push her to work with you, to give you some leeway. We have always had a sort of odd relationship. All of this scares me. I want to run and hide. I want to quit.

Talking with a colleague, a wonderfully supportive one who has not been afraid to talk to me in my grief, has said to find someone else to teach you this course. Do it in a different way. Even with the drugs I feel flushed with anxiety, and fear of even trying.

I am tired of crying in front of my faculty. I'm tired of crying in front of my mentor. I'm tired of feeling like I'm just failing at everything. Even with good days, and good hours...i'm just so tired of it.

*****
I had a good talk with one of my profs (SL), someone I'm taking an advanced research course with. Her role in the department is kind of transdisciplinary, and she in addition to the social issues around education, she also works with the Women's Studies and the Family Studies departments (neither of which have phd programs). I was following up with her about a conversation we had had about "amb.iguous losses" and how I was starting to see my interest in research head in that direction: the idea of what makes a mother, a baby, a family, how losses of babies -- before and after they take a breath -- gets discussed or not discussed. The new so-called "cult of mo.mmy". (Of course, the rigid prof specializes in girlhoods and femininity).

It was a good conversation, even though I admitted to her (SL) that I hadn't really come in to see her with any specific question or point. I talked a little about what my experience was like at school after I lost the boys. About how hard it was to see those birth announcements everyday fr 4 or 5 or 6 months. About what a hard time people seem to have talking about these things and how that furthers the innate sense of isolation of a new DBM.

I talked to her about how I had come to this community of smart, articulate, supportive, loving grieving mamas; what a safe and wonderful place it is; and what it said that many of us had to go outside of the traditional routes or institutions to find a safe place. It occurred to me that it might be worth studying the idea that one of the few safe places for people like us to deal with this, with something almost as common as autism, was so far outside the everyday community.

*****

Something that left me speechless? This awesome prof told me (with glassy eyes) that when the initial email went around to faculty announcing happened, it was made clear that I preferred not to talk about it, not to be approached by faculty about it directly. Perhaps that followed the initial announcement.

Way back when, when I sent the chair an email asking her to let folks know, I told her it was because it wold be too hard to make the announcement over and over again. Maybe she took that as "don't talk to her about it." All my colleagues, the other grad students greeted me with hugs and cards and tears. Very few faculty approached me, and all this time I've wondered why.

I don't know what do do next, personally, professionally.

I don't know how to end this post.