Ah hell, what kind of post is this?

October 30

It's been two years since... what exactly?

since I last had faith that things would work out well

since my heart didn't constantly ache

since I was maternal

since I felt my family was proud of me

since I felt that the future would be gorgeous



and those don't adequately describe it

................

What was I doing two years ago? Was it a great day? Was it a happy day?

...............

It's been two years since I wasn't taking a single antidepressant

since I was happily sober

since I was happy to be living my life, with my own baby on the way, with my own husband - three unique souls together

since I believed that I would fall into the majority side of a very important statistic

since I didn't know the words "bilateral renal agenesis"

..............

I had been bleeding for weeks and frequent check-ups always turned out great - the baby had a strong heartbeat so everything was presumed to be fine. None of us knew that his heartbeat was contained in increasingly cramped quarters. So many people told me that some women bleed through an entire pregnancy and they have healthy babies. Over and over women have healthy babies. Everyone believed I would be one of those women. I was cautious but at 18 weeks and 4 days, after hearing that heartbeat so often, I thought it was just about safe to seriously argue about names and sign up for birthing classes and prepare his room.

Two years ago I believed that in just one more day, after the anatomy ultrasound, I would breathe a sigh of relief. Surely I had already had my big scare on the day so much blood came rushing out of me weeks before.

..............

Two years ago today I believed that in two days I would be showing off new ultrasound images of my little boy; I would be e-mailing the pictures to all of the would-be grandparents, aunts, and uncles.

Two years ago I believed that my family was growing. I believed that I would never be on birth control again because siblings would be very welcome before premature ovarian failure hit.

.............

Two years ago today I never ever EVER would have guessed that that my husband would be GONE... that I wouldn't be balancing family life and work... that the baby's room would be rented out... that I simply wouldn't give a fuck about credit scores, mowed lawns, my career, basic car maintenance, home cooked meals... that it would be so easy to sleep with other men. Two years ago today I'd be shocked at the amount of alcohol I can now consume without getting sick.

Two years ago today I wasn't bitter, jealous, or consumed by anger; I didn't rage against being a member of the unlucky.

Two years ago today Halloween was my favorite holiday. I loved the parties and giving out candy to children.

Two years ago today I had more friends.

...............

ONE year ago today I believed that I was going to make a big comeback very soon, in fact I was secretly sure that I would have a new baby or be very close to birthing by today. I had hope.

............

Today... I have a bottle of wine which I will drink without judgment since excess drinking doesn't happen all that often anymore. I don't have hope for beauty in my life but perhaps I don't need it anymore. I sometimes get out of bed because I'm excited for the day instead of just because that is what is expected of me.

Today I hope that by this time next year Toren and I will have a revised relationship that allows for more love and less agony in my life on Earth. Today I still secretly hope for a family or at least something good enough to replace that craving.

...............

This post sucks, but it's important.

Stalling to "submit"

I've made my health insurance selections for next year, except for clicking the "submit" button to make it official. I'm just ordering insurance for one, just me. I get to select whatever plan I want and don't need to discuss the pros and cons of each plan with anyone, and this freedom makes my head spin and my stomach ache. Perhaps tomorrow I can submit to a solo insurance plan.

Papers have not been filed yet but I plan on getting divorced soon and today that thought squeezes my chest. I miss him. Just right now. And I feel guilty for missing him because I have found another great guy, and I feel guilty for being so happy with the great guy because I cared for my husband so much it seems impossible that I could move on from that.

Today something happened that upset me and my husband knows exactly what to do in situations like that but the new guy totally bombed in offering support.

.......................

It's just been one of those weeks (already!) where I can't seem to do anything right. Although, just when I was SURE that I had just skipped my first period, signaling premature ovarian failure, today it arrived in full force, lured to the white panties I'm wearing. The now stained, soggy and sticky panties.

Anyway, that's good news. To kill time while waiting for my period I P'dOAS twice. Fuck if that action isn't exploding with emotions.

Last Friday I added new medications to my antidepressant cocktail. Sunday I'll add in hormonal contraception.

The calendar is ticking down to October 31 and I feel like I'm going to scream as people chatter on about costumes and parties. I can still feel being in room after room getting ultrasound after ultrasound, watching my son moving, seeing that he was alive with a strong heartbeat, while at the same time hearing about the organs he didn't have - kidneys, both missing... stomach ... bladder... all absent.

Anything that pretends to be scary repels me. Forget stupid, gory costumes, houses of horror and scary movies - the sequence of events at that ob visit were truly terrifying, true horror. Part of me is still stuck feeling overwhelmed by sorrow, fear, and rage at having to make the decision of when my son would die... I see no sense in feeling terrified by fake dead bodies and such.

I need to move to a smaller, windowless office at work to make room for new faculty. I'm trying to be accommodating and gracious about it but really I feel embarrassed, like I wasn't doing a good enough job to stay in my office, even though I know it just has to do with educational seniority.

And my car smells like it has a fuel leak. And my bank account is overdrawn.

.......................

With all of those worries and hormones and new medications and memories it's no wonder I feel "off". It's time to be good to me and take care of me. And it's time to go home and change out of these icky underpants.

Love to you all, thanks for listening to my whining.

I have diligently tried for two years to drown the memories of the life I almost had in a sea of alcohol - unfortunately my tolerance for booze has become too high for these thoughts to be swept away... so grab another glass of wine and a huge bowl of ice cream and let's stroll down memory lane!

In the handful of days before entering the hospital to terminate Toren's pregnancy I did a lot of reading and learned that a fetus at a mere 20 week gestational age can be born alive. They don't stay that way for very long though. Toren died before he was delivered. I knew he wouldn't live no matter what gestational age he made it to and it was both a relief along with huge a disappointment that I never got to see him alive outside of me (I wanted desperately for him to die with me rather than with nurses tending to him so I did get this wish). At the 6 week follow-up visit with my doctor I asked her why he wasn't born alive and learned that with delicate fetuses who are not cushioned by amniotic fluid the force of the contractions often kills them. My uterus crushed Toren to death.

Another confession - I like to watch the show "I didn't know I was pregnant". Doesn't that sound ideal?! No known pregnancy to worry through and everyone on the show ends up with healthy take-home babies! Unlike the women on the show who recognize no signs of pregnancy I have frequent pregnancy symptoms, despite the absence of sexual encounters (until recently) and the baby. I have pregnancy daydreams. Almost two years after Toren and I DAYDREAM about being pregnant. Why not daydream about fantastic vacations to Greece or discovering a major cause of bilateral renal agenesis? Or why not at least daydream about paying all of my bills on time every month or being caught up on laundry?

What next? I am still suicidal every so often, like earlier tonight, and I think I have figured out a major contributor... add PMS to the list of self-diagnosed health issues! (Also on the list are PTSD and a sprained toe) Before August when my housemates moved in and I met the snugglebunny I was depressed 24-7; during the last couple of months I have been truly happy at times, but then around a week before my period I become so "moody" (as in amazingly depressed, suicidal, and out of my mind crazy). I'm afraid I will drive this awesome guy away by being insane and that makes me very, very sad to think about. I'm really trying to hold it together and I take my meds everyday and see my therapist once a week but I still can't quite make it to "normal".

And back to the start - at least I think Toren was dead when he was born. He and I were alone and I didn't quite know what had just happened due to the sedation I'd been on all week, pain medication for labor pains in the form of morphine which it turns out I'm allergic to so benadryl was added into the mix too. Gravity took over and it seriously took a few moments for me to figure out what I was looking at. He was all curled up and just when I was starting to stroke him with a finger a nurse leaned over me, cut the cord and swept him away.

................


I have confessed my way to sober. Good night.

Numb...

... and I just wanted to numb out more with a bottle of wine and, before bed, a sleeping pill.

The no alcohol thing didn't last too long but I have cut back...truly.

Earlier today at my annual "female" doctor's visit I was getting my finger pricked for the blood iron test and suddenly a loud cheering came from down the hall. I looked at the technician and she said someone just found out what they were having - as in a boy or a girl baby. I said they must be happy with what they are getting.

Although maybe they would have had that response no matter the gender since if the gender is the major finding of the anatomy ultrasound you are doing pretty good so far. Not like one of those ultrasounds that start out with excitement from the parents and silence from the ultrasound technician.

"Oh, there he is all curled up at the bottom."

Without amniotic fluid present I couldn't see a baby at all, but it wasn't until later that I realized that this was a very bad thing. It wasn't just about not being able to see him clearly, it was deadly, but they don't tell you that right away.

...............

I like my doctor very much because she is so patient about answering my questions. The visit turned out well in the sense that all of my concerns were addressed. I am being tested for all STI's (because since the last exam I have had sex with a new partner and (last fall) my ex-husband, who was questionable in the faithfulness department), I have a prescription for the Nu.va Ri.ng (plus 4 samples, yay!), I will go in on day 3 of my cycle to get the FSH test to see if I am in premature ovarian failure PLUS my doctor ordered the anti mullerian hormone test to check on my ovarian reserve. I'm seeing if my insurance will cover the AMH test (it's normally part of infertility diagnostics, which are not normally covered, but I since I have a family history of premature ovarian failure my doctor and I are hoping that insurance will cover it as more of a preventive health thing) but if they don't I'll get it done anyway (if I can afford it out of pocket!) because I need some idea of how much longer I have to try for another baby.

..............

And I have gained less weight than I thought I did!

.............

I used the Nu.va Ri.ng for many years before quitting birth control and I'm glad to have a contraceptive that I'm familiar with. It has been about 2 and a half years since I last used a hormonal contraceptive so please cross your fingers that I adjust well to it and don't scare off my reason for using contraception! I'm glad I don't have to take an anti-baby pill everyday.

It truly is a wonderful thing that women are able to prevent pregnancy with a near 100% success rate, but the same cannot be said for conceiving. What will happen when circumstances are right for me? Will I still be fertile?

And it's not that I'm just complaining needlessly - since I'm not ttc I don't know if I have the ability to conceive anymore or not. I have a great deal of compassion for those with diagnosed infertility and hopefully my worrying about infertility that may or may not be present or near won't be upsetting. But I'm not in any position to have a baby. I know I could have unprotected sex right now in an attempt to conceive, but then what? I don't have a lot of money since my ex left me with the house and the bills that home ownership entails. I have two housemates now that probably wouldn't be too thrilled with a newborn entering the house. And most importantly, I like this guy I'm seeing and I wouldn't want to ruin what we have right now by getting pregnant. He is worth seeing how things develop between us without stressful complications or deceit on my part.

My mom and maternal grandmother each entered premature ovarian failure at age 35. I turn 35 in 4 months.

.............

After the doctors appointment I wandered around doing errands. I needed fancy salon shampoo, socks, a new bra, and after getting all of these things I still felt so unsatisfied. It was that feeling of knowing that regardless of whatever "treats" you bought yourself you would still want for more.

Empty. Numb. And only craving more removal from my thoughts through glasses of Merlot.

It isn't so surprising really.

It has been a good day. Really.

October already, which means the countdown for the first anniversary of Toren's delivery is marching steadily along.

Although I haven't read about this being a normal stage of deadbaby grief, I am in the stage of deep regrets. While completely honoring my choices at the time regarding what to do with his body, how I prepared for his delivery, and how much time I spent holding him afterwards, I so wish I had done things differently. It's been almost a year but the memories are so vivid and feel so near that it seems those moments are just out of reach - like if I could stand taller, stretch from tippy toe to finger tip just centimeters more I could change the past.

If I could re-do it I would spend the 5 days between finding out he was incompatible with life and entering the hospital cherishing our last days together. I would find him a special blanket and toy. I would have a photo taken of my husband and I while I was still pregnant. I would prepare for taking my own photos of him after he was delivered. I would have him cremated privately with the soft items I had given to him and have his remains returned to me. I would spend more time with his body afterwards.

I know I've said all of this before - must rehash, re-discuss, re-wish, over and over right now.

What actually happened - The first day and a half (Wednesday and Thursday) were spent crying, vomiting, and researching bilateral renal agenesis and delivery of mid-gestation fetus's. Then my husband took me to Helen, GA. We spent time together. Walked around, stayed in a beautiful bed and breakfast. Were intimate for the first time in about 6 weeks, because pelvic rest in an effort to prevent a threatened miscarriage was no longer applicable. We came back to town on Sunday and I met with a friend who counseled me regarding our choice - she said I needed to make room for the healthy babies who are coming in the future.

After the horror that the baby will die settled in a bit came the fear of entering the hospital. Fear of pain, fear of delivery - the aspect of pregnancy I hadn't had time to learn about yet. Fear of seeing the baby. So much to be afraid of that there was no time to find things that I wanted to give him, and really at the time I would never have imagined that I would have regretted not handling his body differently.

In retrospect I'm also pleased with how those 5 days were handled. My husband and I were close. It was an important time together. We weren't completely focused on what was upcoming. We were actually in public a lot, walking around, eating in restaurants, so we weren't displaying grief. We looked like a normal couple in love. I had a large tummy for me but did not look pregnant. No one looking at us would have guessed that we were just passing the time until our doomed baby left us.

The point of all that is I made the best possible choices at the time however now I would be greatly comforted to know where his body is. I want to honor Toren appropriately for the anniversary of his delivery. I have some ideas. Do any of you have ideas? What did you do, or what to do plan to do, to honor your lost children and express your love for them on special days?

Other stuff
I've been gardening again and I'll post some photos when all the planting is done. Yesterday was a bad day for one of my cats and my bank account. I don't feel like telling the whole story right now but here is what I told my real life friends through lj:

Picking up the story in the middle of it...

As soon as we got home my neighbor who owns the dogs came over to tell us the dogs were current on their rabies shots and they were just used to having a lot of land to run around on and blah blah blah... but it was very nice for him to check up on the situation.

X-rays showed no broken bones or internal injuries so that is good. But Sammy Kitty cannot move his right hind leg without it trembling and the few attempts he has made to stand made him growl and cry. He won't eat and the vet said the medications should be taken with food to guard against tummy upset but we gave him his pain medication anyway because it was clear he needed it.

A is going to bring the futon mattress down to the living room and at least I will be sleeping with Sammy down there. I don't want to put him anyplace high up in case he tries to walk around and falls to the floor, disoriented by the medication. I'll be working from home tomorrow.

So overall a good prognosis to a tense afternoon of rescuing the bloody kitty from a tree and taking him to the emergency vet, and I am so thankful for that, but it still is just very sad to see him in so much pain.

Sorry for this disjointed and rambling post - I took a Vicodin for back pain from gardening all weekend and I think Vicodin works by numbing your brain rather than the actual point of pain.

Thank you Meghan! Words cannot describe the feeling of seeing an envelope in my PO Box; I opened it up right there, standing at a counter in post office. A beautiful card! A beautiful sentiment! Again, thank you so much for your thoughtfulness.

~~~~~~~

Leaving the hospital with a sad but entirely treasured memory box ... what are the words to describe that? Horrible. Unfair. A whole slew of swear words are also appropriate. The morning after delivery I wanted to see the baby again. "He will be cold", the nurse told me. My husband took the opportunity to haul the belongings we had accumulated the past 4 days in that hospital room out to the car; poor guy is not a fan of deadbabies. Toren arrived nestled in a tiny white basket; I sat in the rocking chair, the nurse handed him to me and left the room, and that was my time alone with him. Together we rocked and I told him all that I could, all that was applicable. No life lessons to be passed on other than sometimes things are entirely, impossibly unfair. Sometimes horrible things happen despite our best efforts and intentions. Pretty heavy stuff for a being aged 20 weeks gestation.

His body was so cold and his blood had pooled, turning areas of his skin so dark. I didn't unwrap him to see his body again; I didn't need to see the feet that were starting to club and the fingers growing in odd directions from his body being crushed by my organs. Since finding out he was not surrounded by amniotic fluid I had done my best not to slouch and crush him further.

Knowing what I know now, I would have sat there rocking him longer. I would not have felt rushed knowing that my husband was waiting or worrying that the hospital staff wanted to clean the room. That was my only time to see his tiny body. It's been almost 11 months and I crave seeing him again.

To leave the hospital room I needed another dose of Xanax. Then, finally, I left the room I had been in for the past 84 hours straight, walked down the hall praying not to see anyone smiling over having a new baby in their family, clutching the memory box.

This is it, the white box.
Now it sits in the bottom part of an end table in my living room. On top is a photo of Toren alive, taken via ultrasound; the photo that was joyously e-mailed to family members as a way of announcing the pregnancy. Also housed in that area are family photos and roses formed from palm fronds (or something) that my husband got for me from a guy on the street in Savannah (one of the most beautiful places on Earth). The box holds the soft blanket Toren was wrapped in, the tiny knit hat he wore, a stuffed dog, hand and foot prints, polaroid photos of him, cards received welcoming him to the world, and a few other various things from the hospital. Cards of condolence are kept behind the box.

Initially, I didn't know what to think of the box. It instantly turned into one of my greatest treasures (like if the house is burning down, grab the cats and the box) however the things inside were not items that he enjoyed during life. He never played with the stuffed dog, he never felt the softness of the blanket. His items, memories of him, but they are not his memories.

I wanted to give him so much.

I don't know if anyone else felt this way, but when I found out there was no way in hell that my baby would live outside the womb, finding things to give him did not cross my mind. I wish I would have selected a blanket or toy for his body to at least lay next to, but I gave him nothing tangible. In response to a post on Glow in the Woods recently I expressed my regret with how I chose to deal with his body, I'm not going to repeat it here. In hindsight, I wish I had selected an item just for him and had his body cremated with it. I wish I knew where his body was right now.

Which leads to the point of all of this ... months later the box is still not enough. All this time and all this effort spent on grief work and it turns out that container of memories just isn't enough. I now have a new card, a new memory, to add to the story of my baby's life. Sure it's the part of my baby's life where there is no adorable cooing, drooling, young human - we are limited to a heartbroken couple who barely speak anymore (and who are frequently drunk), a woman who refuses to move on and a man who (I imagine) wants nothing other than to forget the sight of his dead son.

Ready for the shameful part? The part that is our secret? I'm going to buy the things I had intended to buy for him. A halloween, jack-o-lantern hat and dinosaur pajamas. The things I never dared get since the pregnancy was classified as a "threatened abortion" for so long.

I hate that I was never able to tell him face-to-face, while he was alive, how much he was loved.

The day I'm waiting to finish

The "Reorientation and Renewal" chapter of Hannah Lothrop’s book Help, Comfort, & Hope: After Losing Your Baby in Pregnancy or the First Year begins with the quote “I felt as though I had awakened from a deep sleep.”

The feeling that this is the beginning of the upswing started last week, triggered by not being as concerned about my marriage and getting a promotion at work. Even my therapist happily commented on how I’m getting better.

The months since the baby died really have felt like being asleep; I haven’t been truly conscious much of the time (I have no idea why I was given new tasks at work rather than being fired). It’s wonderful to feel like doing things again, and it’s intimidating to see all that has been left undone since last November.

The silent moments are still fearsome though. I’ve been waiting for the nightmare to end and even though I’m waking up and re-finding interest in life, that choking feeling remains quietly present and if the world becomes still enough I get dizzy.

Then the realization that, irrationally, impossibly, I have been waiting for Toren to come back. Surely this has been some kind of test! Surely this can’t be reality! Despite the progress it is still so hard to accept that this is how it is. He is gone. He is dead.

I didn't want to wake up here! I’ve been waiting to wake up on the afternoon of October 31, 2007. After hearing the baby’s heartbeat and having an encouraging talk with the midwife perhaps I just dozed off, drugged by progesterone, in a chair in that tiny, cozy alcove while waiting for the ultrasound. Any moment now my husband will gently nudge me awake when it’s our turn and a minute later our baby will be seen floating and moving in amniotic fluid on the ultrasound screen. The radiologist will confirm “it’s a boy!” and will measure him, marvel at his progress and health, and give us new ultrasound photos of our son to take home. Then my husband and I will dive back into our busy day: eating dinner, passing out play doh and candy to trick-or-treaters, and heading out for the evening where he will dj and I will wear my new velvet empire waisted coat in a fashion show modeling fancy masks.

That day feels so close. That day almost happened and a whole different life from what I have now almost followed.

Real quick

Last night I dreamt of pushing Toren as a toddler in a stroller through the zoo. We were having an awesome day! Right before waking up I was reading lines of poetry about how horrible bilateral renal agenesis is; how horrible agenesis of the stomach is; how horrible agenesis of the bladder is. Completely horrible poetry but the sentiment is true. I really really really hate it when major organs just don't develop!

Butterflies visit the garden everyday now. Today two swallowtails (I think, I still need to learn to identify different butterflies) and two little white butterflies flew around me, surrounding me for a second, as I inspected the garden. Most of the perennials are doing well and getting larger. Japanese beetles dining on the leaves of some plants is still an issue but it's getting better. Half of the impatiens are large and pretty, half are wilty and sad looking.

Here's a fuzzy photo of one of the white butterflies. Some chewed up leaves are nicely in focus, stupid beetles.



The clematis I thought I had killed has resurrected and looks so pretty. The clematis that I got this year and was doing so well for a while is now all brown and crispy; perhaps it will come back next year.
















The new Jizo statue arrived safe and sound last week. It's still in the house hanging out with the other one. I'm making up a sort of "welcome to the garden" ceremony, I'll probably place the statue alone but might invite some friends over for a party later and show them the garden. I have a very long set of prayer flags to hang in some trees opposite of the garden and then I thought I'd make a bunch of origami butterflies to hang around the garden. I imagined myself lovingly, contentedly and carefully folding beautiful origami paper into delicate butterflies. HA! Origami is much more difficult than I anticipated! The introduction to a book of origami instructions mentioned the concentration development that occurs with the practice of origami. I am pathetically short on concentration and patience lately. Folded and refolded pieces of colorful origami paper are strew about my living room, and there is not one completed butterfly! My plan is to find a new set of butterfly making instructions and maybe convince some friends to help me.


One of the last questions for the National Birth Defects Prevention Study interview was "What do you think causes birth defects?" Not my baby's defect in particular, birth defects in general. I both very much like and very much dislike that question. I like it because I think it's a good idea to ask study participants about what they think risk factors or health outcomes are; answers could help with generating hypotheses (in the instance where the causes are unknown, like some birth defects) and I think people like having a chance to talk about how they think they are affected. I answered the question very generally: genetics, environmental exposures, maternal health factors (perhaps I mentioned infection specifically), but I wish I had also said something about my baby's condition.

No doctor has given me any hint of why Toren never made kidneys. There is no family history of renal agenesis in our families; the pathology report found the baby to be chromosomally normal. I was told repeatedly that I did not do anything to cause it, but I think there has to be some explanation for the agenesis. Was it some medication I used before I knew I was pregnant? Did the asymptomatic urinary tract infection I was diagnosed with at the first prenatal visit mess up his development? What about the velamentous cord insertion and all of the bleeding from that; did he just not get enough blood flow to develop all of his organs?

Last night with the house to myself, armed with a glass of nice wine I set out to review the literature on bilateral renal agenesis. All along my fear has been that there are studies out there identifying the risk factors, and then I would feel guilty for unknowingly causing my son to not be compatible with life. Instead, beyond a genetic component, I again found no explanation. I'm waiting for one more article.

Having no answer is frustrating. At least if I knew some risk factors I could avoid those things the next time I attempted pregnancy. As it is, beyond stopping medications earlier, I know of nothing to do next time to ensure a healthy pregnancy. Of course a pregnancy which results in a live baby that you take home cannot be promised, no matter how good you are, and I hate that right now.