Tuesday, November 30, 2010

11.30.10

Goodbye, November.

Another month passed without my Otis here in our arms. Without him being passed around at the Thanksgiving table, without him bundling into the mobywrap and coming on my birthday hike with me.

I'm doing fairly well* right now. (Obviously, with the asterisk. *Fairly well being totally relative. The asterisk will always be there, to differing degrees, but it will always be there.)

I made it through the holiday, and through a birthday. The rule for the day was that no one was allowed to say "Happy Birthday" - they were only allowed to say "Birthday" - an acknowledgment of the day, but, who are we fooling, the day was anything but happy.

I saw the perinatologist on my birthday. Lovely way to spend the birthday, right? He was actually really helpful, we talked about my cycle still being very messed up (he's not concerned, he wants to wait another 8 weeks before doing any type of intervention, since it would probably be a D&C and that would then run the risk of scar tissue and that would then run the risk of not being able to get pregnant yadda yadda). I still apparently have lots of stitches. I guess my episiotomy was way deeper than I knew originally. So my internal stitches are not dissolved yet. Again, he gives me another 8 weeks on those too. So basically we're looking at almost 20 weeks of physical recovery. He wants me to wait until I have had three normal cycles to even think about conceiving again, so that puts us out probably to March or later of next year. So in an ideal scenario, we could theoretically have a baby in December. But most likely, not. (And I just had a panic attack realizing that means another birthday would have passed. Fucking hell.)

He also wants me to see the RE to get hormone profiles and panels done. Not because I'm experiencing infertility yet (we have no idea, since I haven't tried to procreate for a year now, and I haven't had a normal period for a year, either. In fact, November 30 2009 was my LMP date that I gave every doctor at every prenatal appointment. Boo.) But, umm, yes, we had that talk about infertility and tests and numbers and "don't get your hopes up, but don't get depressed either..." And he thinks it would be good for me to have information from the RE, possible plans of action, information for the IF bridge if we need to cross it. He also said if I don't want to see her unless I go six months without getting pregnant, that's fine too. My decision. Right now, I am leaning towards wanting to see her. Information is power. That's been our mantra through all of this since Otis died, and I think it's true now too.

Yesterday in counseling I talked a lot about how I have at least half of me back in the hospital with Otis, birthing him, holding him, marveling at him, experiencing the ultimate horror of hearing he isn't going to live...and half of me is in the future, anxiously trying to plan a future pregnancy, a future baby, a future.

Neither part of me is here in today. I am stuck in this sort of purgatory, without Otis, yet full of hormones that tell me to attach to something, full of plans of being a mother, full of a year of preparing to be a mother...and no child. So I send myself into the future, neurotically, trying to figure out how I could possibly do it in the future.

"You want something to attach to," my therapist observed.

It makes perfect sense, I know. I can't fault myself for it. But this living half in the past and half in the future is not working for me. The grief, fine, it's inescapable. Otis is here and Otis is not here and I need to make sense of that and my body and my mind and my heart need to feel this pain, experience this loss, scream, cry, yell, smash things...and the hope for the future, totally natural too - of course I am trying to figure it out.

But I need more, I want more. And I can't get Otis back. And I can't get pregnant yet. So what does that leave me with, now, here, today, in this very moment?

I always envisioned myself as the type of mother who would not let her child be her EVERYTHING. I wanted to go on dates with my husband. Let my mom watch the baby for a night and drive up to wine country. Continue my volunteer work at the animal shelter. Keep working. Keep practicing and teaching yoga. Continue on my journey of figuring out who I am, independently of a child. Of course a child was going to enrich my life, of course a child was going to change me to my very core and things would no longer be the way they were before. But I didn't want motherhood to consume me.

And now, I'm stuck in this really odd predicament, of being consumed by motherhood and yet not being a mother to a living child.

"I understand that this grief and this loss and my missing Otis will, at times, be totally inescapable and totally unavoidable and it will be All. I. Can. Do/Think/Be. I really do understand that. But, I also understand that there will be other times. Times when it is more assimilated into my being. Times when I can still function, with the grief, with the missing and longing. Times when I am obviously still Otis's mother, but times when I still want to be more than that. And I want to figure out who I am, in those other times, and what I do, in those other times," I told my therapist.

I don't know. I've had this feeling lately that it's kind of like I lost a limb. And there are times that I am still in the "Holy shit, what the fuck happened to my leg?" state of being. And there are times that I cry and scream and yell about not being able to walk, or dance, or stand comfortably. Times when I wake up in the morning and forget, and try to step out of bed and then realize, oh, my leg is gone. And I rail and flail and curse and spit and cry at the unfairness of it all, that I am now living without my leg. Times when that is all I know, that my leg is missing. And then there are times that I realize I'm starting to assimilate this information, times when I am in the world not with the view of "My right leg is missing" but rather "I live with one leg." If that makes any sense. And assimilating my identity as an amputee into how I live. And realizing I could let that be my one defining characteristic or that I could let it be one defining characteristic.

I realize there are a lot of problems with this metaphor. It is far from perfect. Please don't argue it with me. And it is also just one bit of me trying to make sense of where I am with all of this. It's what kind of makes sense to me today. Probably won't be worth jackshit to me tomorrow.

My therapist said, "So, it sounds like you're asking the questions of 'what gives my life meaning?" And yes, that's just it. Where do I find meaning, purpose, passion, when that into which I had focused all my energy, all my attention, for the last year (probably more) is now gone? How can I define myself, outside of the scope of motherhood? Because there is no certainty that I will ever get to mother a living child. It is not in my control. And it is not something I want to lose myself into, either. As much as I want it, I do not want the next six months, or more, of making love to my husband to be dictated by peeing on a stick and checking fluids and timing things just.perfectly.so. I do not want to "lose" two weeks out of every month to wishing, waiting, hoping, planning, counting, praying, begging, pleading. I do not want to spend my days googling the latest in infertility treatments, in figuring out my chances, in planning, researching, trying to control it. I do not want that to become Who I Am. I want more. I need more.

(And, please, those of you who are actively TTC or who might take offense in anything else I've written here, please, know this is simply what is true for me (and for me, right now, because, as I mention, tomorrow may be entirely different! I make no claims to knowing or presuming or even guessing what might be true or best for you.))

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On a lighter note, E knew that I didn't want any birthday presents this year. He went out anyhow, and got me the perfect gift: stacks, and stacks, and stacks of dishes, bowls, cups, plates, vases, candlesticks, piggy banks, from a thrift store - all for me to smash. I have yet to decide if it's going to be one big smash fest where I break them all (and then perhaps create some art from the pieces remaining?) or where I keep a closet of "smashables" for when the urge to smash something arises. I'm kind of leaning towards the latter, because really, I don't know that I need to smash 100 things all at once, and it's not like that will clear me of my smashing urges, right? But getting to smash something everytime the urge arises, or smash three things one day and five the next - that sounds like more my style. We'll see.

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And lest there be any confusion from anything I've written here today:

Otis, I miss you every single moment of every single day. Every breath I take is a breath that is incomplete because you are not here with me. You are my first thought in the morning and my last thought before I go to sleep. I do nothing without imagining you here with me, without wanting you here with me. My body longs to hold you. I miss your smell, I miss your soft skin, I miss you wiggling in my belly and dare I say it I may even miss that pain in the upper left side of my back where you seemed to have lodged a rather large elbow for the last five months of my pregnancy. You are in every tear drop that falls and in every smile that emerges. You are the rhythm in every step as I hike, as I run, as I walk. You are every flower in bloom and every bird in the trees and every twinkle of every star. You are the rain that falls relentlessly and you are the beams of sun that burst forth at the end of the storm. I miss you more than words can express. I hurt more than words can express. You are always my beautiful baby boy, and I am always your mama.

Saturday, November 27, 2010

On the list

Very happy to have made it on to Carly's list to get Otis's name in the sand. Just a few names up from his, there is a name, Noah Henry Jaeger. His last name is my maiden name, my family name.

It haunts me to realize just how prevalent infant death and pregnancy loss is. I grieve for all the mamas not holding their babies today.

Wednesday, November 24, 2010

I just came *this* close to burning my house down...

And some other news around my world:

Our dogs have to have brown rice cooked for them every couple of days. This morning I put the pot on, turned the gas way up so that the water would boil, dumped the rice in, and then forgot about it. I usually remember to turn the heat down once the water is boiling. Today, I didn't. And we left, to take the dogs for a walk. We came home to a house full of smoke and a burning pot on the stove. We were probably 5 minutes from flames, I'd wager.

E's sister is in town with us for the week. Harder than I thought it would be. She and I are very close, and became even closer in the week following Otis's death - she was instrumental in our funeral arranging and dealing with so many details that week. She wanted to come back out, to be a support for us, to show her love, yadda yadda. I am finding it really difficult to have someone here right now. I am falling apart by the hour, pretty much, and it feels really odd to have her here. E is in better spirits than I am, (and that's an understatement, at best), and he is very happy she's here. So it's the two of them, chattering away, talking about going to yoga classes and out to dinner and this and that...and meanwhile, I am wondering which closet would be the most comfortable to spend the next six weeks inside of.

Last night we went out to dinner and ran into an old, old, old friend of mine. She is in town from Holland, visiting her dad (who lives in my neighborhood) and we ended up sitting next to them at a family style table in the restaurant. She knows about Otis, she is on my face.book and she sent me a one line condolence on there...her dad knows about Otis, he also is on fb...but neither of them mentioned a single word about him. This is the first time they've seen me in person since Otis died. It's not like they've forgotten. I made reference to being pregnant at some point in our dinner conversation, and it's like they both just blew over it. I think this was the first really extended conversation I've had with someone where they didn't mention him once. It stung. I have had moments with others in passing, where people stumble over their words or we pass each other quickly on the street and they don't say anything, but an outright omission during an entire dinner conversation felt so so wrong, and so sad. I wanted to scream at them to JUST SAY IT. MY BABY DIED. Did they think I had forgotten, and that their bringing it up would somehow make me remember and ruin my dinner? Here's the thing, people. There is not a moment in a day, not since September 12 at 1:24 am when he came out of my womb and into my world, that I haven't had a constant stream of OtisOtisOtisOtisOtisOtis running through my mind. It doesn't stop, ever. Sometimes the stream makes me smile, sometimes the stream makes me cry - but it's always there. Not acknowledging it feels a bit like the sky turned purple as we stood and watched and you decided not to comment on it.

My birthday is on Friday, as if the week of Thanksgiving weren't already enough of a whopper to deal with. And everyone is trying to accommodate me and my grief and nobody wants to make big plans but at the same time everyone is "we just want to honor you and show our love for you and no, it's not celebratory, it's just that we love you so much..." and I should be grateful, sure...but I just want to fucking yell at all of them and make them angry enough so that they don't want to spend the day with me. There is nothing, absolutely nothing, I can think of that will make this week feel okay to me. I can't even envision a "bearable" version. Oh, did I mention that I have a doctor's appointment on Friday? Because my fucking episiotomy is still not healing and I am in more pain now than I was in those first few days postpartum? And after almost ten weeks of pretty steady postpartum bleeding I finally stopped but just today I started back up? Because, you know, it's just not enough that my baby didn't survive childbirth, but my body can't figure out how to right itself now either.

And having a birthday also brings up the usual "I'm getting old" stories, except this year the stories about getting old have this beautiful new stain on them, the "I'm destined for infertility" theme. I was already of "Advanced Maternal Age" when I got pregnant with Otis. The numbers and figures scared me, but we bucked the odds and I got pregnant really without too much trouble. I am so terrified that this time around (if I am ever able to have sex again) we won't be quite so lucky.

Last year on my birthday, E gave me a poem and a dandelion necklace. The poem was titled "the wish" and he wrote about our dreams together - we were trying to get pregnant, we finally were ready to take that jump together, it was so exciting, so fun, life was one big adventure and we were ready to embark on it together... We celebrated my birthday in Portland with our best friends. It was one of the best weeks of my life. His poem made me cry. I was full of hope, full of love, full of eager anticipation for the life ahead of us. 3 weeks later I got pregnant.

One year later, and it was the very best year of my life and the very worst. Distill it down to September 12 and 13 - the very best day of my life and the very worst. It's a wonder that anyone's brain continues to function after having to assimilate such extremes in such a short time period. Or, well, perhaps the brain ceases to function - hence, the burning down the house.

I am not functioning well. I am barely scraping by.

I am terrified of the year ahead. I am terrified to imagine my birthday next year and being stuck in a similar place, or, even worse, being in a more hopeless state. I would like to think that next year at this time I will look back and be able to count my blessings from the last year, be able to rub my big pregnant belly or snuggle my newborn, blissfully madly in love with my husband and with a greater sense of peace about Otis's death...but I just can't see how I could ever go from the point where I am now to that point there. Instead, I worry that next year at this time I will just be one year older and a whole lot more desperate.

Oof, it's all doom and gloom around these parts.

Monday, November 22, 2010

Reposting from Glow comments - gratitude

So that I have it here as part of the "historical record" - a repost from a comment I left at Glow, on the topic of gratitude and "what are you thankful for..."

Gosh, I find myself writhing and wrangling and kicking and screaming about commenting here - like a two year old with a temper tantrum, "I DON'T WANT TO BE THANKFUL. I AM NOT THANKFUL FOR ANYTHING! MY BABY IS DEAD!" But, if I stop and connect to my breath, I can find that in fact, there are a few simple gratitudes...and honoring those does not dishonor the tremendous loss of my beautiful baby boy...thank you, eric, for bringing this question to a place where it doesn't feel "wrong" to be grateful, where it doesn't somehow erase my boy's presence, where I can hold the two - gratitude and grief - and it doesn't feel like "look at all the blessings from my son's death" because I simply refuse to look at it that way, if that makes any sense. Without further ado:

I am thankful for Glow, for connecting me to this world of other grieving parents, for helping me to see I am not alone, for helping me to find my voice.

I am thankful for my husband, that he is emotionally mature and verbally adept, that we are finding our way through this together.

I am thankful for my family, for my brother especially, that they have not abandoned us or forgotten Otis.

I am thankful for the care team at the NICU and for the way they handled Otis's birth, short life, and death; with dignity, with honor, with wisdom, with love.

I am thankful for my community, for my friends, for the many ways in which they have shown up and loved on us in this horrible time. For the many meals delivered, for the donations for Otis's funeral and our other financial burdens, for the ways in which they continue to show up for us.

I am thankful for my dogs, the way they cuddle in and remind me of all my mother-ness.

I am thankful for my body, despite my wanting to just hate on it for not being enough to carry my son out of it alive and healthy. I am thankful I have the physical strength to hike in nature, to breathe deeply, to dance again someday.

I am thankful for my beautiful, beautiful baby boy Otis. That he came into my life. That my pregnancy connected me to my body and its power in ways I never imagined possible. That I got to feel him kick and turn and wiggle and hiccup, that I got to hear his mighty heart beating, that I learned just how much I can love someone. I am thankful for his soft skin, his pudgy thighs, his full head of luscious locks, for his squishy little hands and his perfect nose. I am thankful for the ways he continues to make my heart bigger and my life more expansive, even in his absence.

Saturday, November 20, 2010

For the record

Today was as difficult as any. Body-wracking sobs and more snot than one body should be able to produce. I miss my boy so much. I want my baby. Otis, Otis, Otis - I called his name out to the heavens all day long. I screamed and yowled and the pain finally manifested as physical pain - my back seized up between my shoulder blades and has been in spasm for a good couple of hours. My hips ache.

I thought that labor and childbirth would be the greatest pain I would ever have to know or endure. In my sobbing today, again, it reminded me of being in labor here at the house. The pain almost unbearable, the "I can't do this" pleas to E, the wanting to go to the hospital so they could somehow make it all better. Today I wanted that as well. I wanted to go to the hospital, and somehow get an epidural for my heartbreak. I want to numb myself, I want to hibernate through the winter, I want to wake up in a shiny happy spring somehow.

The lilac bush outside our house has been in the ground for five or six years. It has never been a particularly enthusiastic bloomer. In its best spring, it probably had six or seven blooms on it at its height of blooming. For some reason, it has decided to bloom this week. And is covered in buds. Well, I should probably say it WAS covered in buds - tonight's winter storm of sheets of rain and hail probably knocked them all off. It's good to know I'm not the only one that is totally confused about which way is up around our house. I'd like to think that somehow the lilac's magic/confusion is some sign from Otis, or from God, or something magical...but I just don't have enough faith or belief in anything like that anymore.

I am so fucking broken.





Friday, November 19, 2010

sisterhood

I've been initiated into a sorority I never wanted to join. What makes this unique, I suppose, is that none of us ever dreamt of joining, and nobody joins by choice.

I wander through the world of the babylost moms and find myself awed, and devastated, by our sheer numbers. In my first few days navigating the countless blogs, I found them overwhelming. Now I've settled into a bit more of a familiarity with them. For the most part, I know whose child belongs to whom, and I recognize the mamas as we cross paths in comment sections around the blogosphere.

There are some of us that are so new to the game that our wounds are fresh, gaping open, raw and exposed. We walk through confused, anxious, struggling to complete sentences or thoughts.

Others are a few months down the road. Still struggling with the rawness of emotions from time to time, but living with the wound has become more familiar for them. Their steps are not far ahead of my own, and I find comfort in reading accounts of their "normal" days. Some of their days seem remarkably like my own, drowning in the grief; other days for them they seem more able to dance in the light. Or at least walk through the "normalness" of it all without falling apart - which, right now, is my daily challenge.

And then there are the wise sisters who are years down this road. Some of whom have gone on to have living children, some who have not. They grieve their children's deaths with the same fervor that a mama always will, but they have learned how to live with that grief in ways so that the grief is not the dominant emotion of every day, every moment. Their children continue to be important, be remembered, be honored, be celebrated. These women give me hope that someday I too will be where they are - where the pain is no longer so ferocious that I wake up every night in tears, where the simple words of another's pregnancy announcement don't sting and rip my wound open anew, where I can be with babies, children, mothers, without being knocked breathless by the injustice of it all.

I feel a little bit like a freshman in high school right now. Overwhelmed, stumbling through hallways and corridors and drowning in the workload. I see the seniors, hanging out across the quad, and they just seem so cool - they've got it all figured out, right? I want to be one of them. Now. I hang on their every word like they hold the keys to my sanity. Their reassurance and kindness is all I have to get me through each day.

(Now where the high school analogy goes awry is that in high school nobody really has any sort of anything figured out by their senior year, whereas I really do believe that some of you Senior Medusas (yes you know who you are) have true wisdom. Plus, when were senior girls ever really friendly to the freshmen? In my case, it only happened because I had an older brother who was a senior so if a girl liked him, then maybe, just maybe, she'd be nice to me. And, unfortunately, I also realize, even being the wee freshman that I am, that none of us ever really get to graduate from this high school, so again, it's an imperfect analogy. Bear with me.)

I have been reflecting on the generosity of women and especially the amazing mothering qualities that we all bring to this awful world of grieving a child's death over the last week or so. The ways in which we reach out and support one another, as if we all know that our very lives depend on this sisterhood. I have infinite gratitude for each and every one of you, for every comment that has been left here already - for the "Yes, I've been there" comments, for the "You're in it" comments, for the "Hang on, sweet sister" comments and every. single. gesture. of love, of support, of solidarity.

I know I am so new to this game. And I don't have much to offer in terms of "been there, done that" wisdom. I have no idea how this game is going to play out for me. I can only hope that one day I am able to repay the favor, and support a woman wandering into this world in her first few months, lost, grieving, feeling as if she is losing her mind. I hope that my reaching my hand out to her holds as much hope and as much love as the hands that have reached out to me in the last two months.

Thank you, sisters. Thank you.

Thursday, November 18, 2010

empty nesting

it's like all my nesting instincts have gone haywire. I sweep at least twice a day. I scrub pots, and then leave them on the stove with the suds still in them, to dry that way...only to find them again later and start the scrubbing all over again. nothing is ever clean enough, tidy enough, organized enough...

last night I awoke in a terror around 3 am. e had not yet come to bed (this is normal on nights he works, as he doesn't usually get home until midnight or 1 a.m. and then stays up late as he unwinds.) but last night it bothered me. really, really bothered me. I called to him, asked him to come to bed. he said he was on his way. within five minutes, I was screaming. the terror was in every cell in my body, I couldn't lie there in bed one second longer. I got up, and started scrubbing my bathroom. when that was finished I moved into the kitchen. e came in and got me as I stood washing dishes and sobbing. he held me, and brought me back to bed. even with him there in bed with me, breathing with me, crying with me, reassuring me and loving me, it took me probably thirty minutes or so to resume a regular breathing pattern and to fall asleep. it was awful.

this morning, I woke up early.

and started cleaning.

I feel a lot like Lady MacBeth, or at least her words came to mind this morning as I scrubbed out pots and pans and scoured countertops: "Out damn spot." I don't remember enough from high school english class to remember the story of Lady MacBeth, I am ashamed to admit. but I recall an image of her hysterically washing her hands of blood and uttering those words. (I think it's because she killed someone. Note to self: drinking during lunch in high school and then being out of it for afternoon classes makes one sound like a dolt in trying to recall great works of literature.) So I don't know that the analogy is entirely perfect, since I really don't feel like I *killed* Otis, I really don't.

at the same time, it's like his blood is everywhere, and I can't scrub hard enough to remove it. there will never be enough organization in the house to bring him back to me. it's like I'm still nesting, still trying to make my home perfect enough so that maybe, just maybe, he'd want to come back and live here with us.

Wednesday, November 17, 2010

Spots around the house

A friend was supposed to come over today, and then she couldn't, as her daughter was napping, and she asked me to come to her. I couldn't leave the house. Not in that so-depressed-I-can't-leave-the-house sort of way, but rather just that I've been really feeling safest here. I think it's because it's where I connect to Otis, and have that sense of mama love the most. I took some photos today to remind me of the spots I feel him the most sweetly around me.

This table set up is what I see when I lie in bed. I stare at the shadows that the trees outside cast upon our shades. I stare at that big fish tail. The wood piece is off the beach from our honeymoon in Tulum. I spend a lot of time staring at this table in the morning, as I lie in bed and think about Otis. After Otis died, there were always fresh flowers on the table, and I learned to love seeing them there, so now I try to keep that table stocked with fresh blooms.



This is the top of Otis's dresser, also in our bedroom, but around a cornerish type thing, so not easily viewed from bed. Right next to this dresser is where we put the elliptical, now that we took the crib out from that space. The dresser is pretty much exactly as we had it before Otis was born, except his clothes and cloth diapers have been removed from the insides, and they sit empty, and now his ashes sit there in a tiny little box. This is where I stop every night to kiss my boy goodnight, and to tell him how much I love him.
Finally, our bed, and Otis's baby blanket. In some cruel and awful twist of fate, the blanket we fell in love with for him before he was born has a Day of the Dead motif with skulls across it. I loved the fabric. My mom gave us the blanket at one of our showers. I sleep with it every night. Even though Otis's little body never got to touch it, it's one of the ways I feel closest to him. Note the various sleep aids on our bedside tables. E and I always ask each other when we're making the bed who wants to have the Crab pillow and who wants to have the Octopus pillow. ("Are you a crab or an octopus today?" I am usually the crab...) I always slept on the crab side until I got pregnant, and then slept on the Octopus side because it was easier to get to the bathroom from. And there's the Woo, source of constant cuteness and a lot of comfort for me these days.
The bedroom is as close as I can get to him these days. I spend a lot of time in there, it's my sanctuary. When Otis first died, we put the TV down there with the idea that the distraction might somehow help me. Four days later, I was going nuts, sobbing at the idea that I destroyed my sanctuary. It felt like the distraction was pushing Otis out of the room. I woke up the next morning and practically threw my back out dragging that old piece of crap TV out of there.

Before Otis, I never cared much about making the bed, or keeping the room neat down there (though I always liked it when it was made.) In the days after his death, our friends made it a point to go in every day and make the bed, change out the flowers, and straighten up. Now it's become a bit of a "thing" for me - I have to have the room cared for. It's where I feel his presence the strongest.

And for the record, I do see the inherent wrongness that I am posting pictures of furniture and spots around my house where I "see" my baby instead of posting his 9 week old photographs of him in his new outfit or doing whatever it is that 9 week old babies do that make moms want to take photos. Shit like this has been occurring to me all day, pretty much every day. Yesterday I was holding the Woo (my 15 pound dog) on my lap and he was restless and I couldn't figure it out, but I picked him up and held him and he let out this big burp. "For fuck's sake, I'm burping my dog instead of my baby," I thought, "it really doesn't get any more pathetic than that."

ps - to those of you who get this as a feed, sorry for all the edits post-publishing. and to all of you, I apologize for the fact that I can't think or write for shit these days.

Monday, November 15, 2010

SOS

I'm sinking. Or, rather, I'm realizing how far I've already sunk?

I feel so hopeless right now, so full of "what's the point" type questions and other existential angst.

After realizing how I'm running from everything to get to some mythical Other Place where the ghosts can't find me, I've been thinking about how my whole life has felt like a series of "When....then..." statements. "When I get married, then I will be happy..." "When I lose ten pounds, then I will feel happy with my body..." "When I get that job that I love, then I will know career fulfillment..." and on and on and on. "When I have this baby...."

And now it all seems so futile. So stupid. And endless treadmill or hamster wheel. "Now" has never been good enough for me. And now, especially, "Now" is absolutely empty and hollow and depressing and miserable.

And of course, I'm still playing the "when-then" game...Most of it centers around having another child.

"When my body is healed enough for us to have sex again...
"When I know I am ovulating..."
"When I take a pregnancy test..."
"When I make it through the first trimester"
"When I make it past 24 weeks"
"When I make it to the c-section"
"When the baby is born, alive"

And the worst part is, these aren't When Statements, they are all Big, Fat, If Statements. Replace "when" with "if" in every single one of those statements. There are no guarantees. At this point, it feels so far off to even be getting to the TTC game in the first place, not to mention actually being successful at that game.

And I'm sick of living in the world of Whens, Ifs and Waiting Until.

I want to live, now. I'm sick and tired of chasing dreams, only to have my heart broken, my dreams shattered, my prayers ignored. I'm sick of the game of constantly replacing one "if-then" statement with another as I realize I am never satisfied with what I have.

This smacks of depression and the past few times I've had serious bouts of it. I know. So, what? I need a lifeline, some method of surviving these darkest days. What I'm doing barely seems to be working, and I'm getting tired of it, fast. And I can't find any good suggestions. E thinks I need a different therapist. My mom thinks I need meds. I don't agree with either of those options, but then again, I can't figure out any better ones, and feeling optionless also feels really hopeless right now.

There are all sorts of reasons why I don't want to go on meds right now. The two biggest hurdles in that thought process are that we are totally F#$Ked right now with regard to health insurance, and we are already applying to have to pay out of pocket and looking at exorbitant bills. Add a big old mental health piece on top of all my other stuff and it's just not very pretty. The second part about going on ADs is that I can't handle the weight gain right now. It may seem vain or superficial, I agree. But it's already taking every bit of compassion and self-love I have to not totally despise the state of my body right now and losing pregnancy weight right now is a tangible thing that is theoretically helping me in some coping sort of way. Stalling that by adding meds into the mix just won't work. Please don't try to tell me it wouldn't happen this time, because I know my body and I know how it responds to the meds and I fell for it last time and I gained 15 pounds on them.

Not to mention that this isn't necessarily "depression" - it's grief. I don't feel right about going on meds for it.

But E told me today he's really concerned about me. And I'm getting concerned about me too. I'm isolating. I find myself pretty awful to be around, so I can't imagine that others would want to be around me either. And I have no patience for any of their bs, either. I don't want to be around people. I don't even want to be around my dogs right now. I don't know what to do.

Sunday, November 14, 2010

A Haunting We Shall Go

I understand the concept of haunting in a whole new way these days.

My life feels haunted.

And I feel like I am running from his ghost. Running from the total and complete overwhelm of grief. Racing up the shore so that the wave doesn't crash on me, and take me under her grips, and drown me.

I do everything I can to avoid slowing down, both in my head and in my activity. I lie in bed in the mornings, frantically calculating when I could get pregnant again. I spend my days scheduling "self care" (acupuncture, chiropractic, therapy) to such an obsessive amount that perhaps it's no longer self care, but just distraction. Wishing on stars. Writing lists and lists upon lists of to-dos. Racing around. Anything to keep me from stopping, breathing in, and feeling the emptiness in my heart. It creeps up on me, and I feel my heart start to race. I feel my chest tighten. And I feel that sense, that urgency, that fear. Run. Run for your life. It really does remind me of a good old horror flick, being chased, sheer terror in my eyes, barely able to breathe.

And yet, every time, it catches up with me. Today it was at the sink, doing dishes. I had felt it creeping up since my eyes opened this morning, but had made it a good couple of hours before it finally caught up with me. I started screaming for Otis. I wanted to smash every dish in the sink. I wanted to slam things against the wall. My body heaved, and my heart felt like it was breaking anew all over again. I wanted to throw things, smash things, anything to get the haunting out of my head space. Instead, I just sobbed into the soap suds. I felt my legs buckling under me. I wailed and sobbed and howled.

It passed, as it always does.

I can't help but fear that all this running is going to come back and make it worse somehow. I worry that somehow I'm trying to bypass grief and what I'm doing in fact is going to make it a thousand times worse. I feel guilty for having days where I barely cry at all, days when it feels like it's all going to be okay somehow. I then worry that by having days like that it somehow means it's going to be worse later on down the road. And at the same time, I am terrified of the monsters that hide behind every corner, just waiting to attack me. I am terrified of the ghosts. I am living a haunted life.

Saturday, November 13, 2010

Perfect Little Big Boy

"First off, let me offer my most sincere condolences for your loss. I am so sorry," the fetal pathologist began. "And let me tell you that Otis was a perfect baby. Everything in his development happened the way it was supposed to, genetically, chromosomally, with his organs, his body, everything. He was perfect."

With that, my tears began to fall. Just as I had known from the moment I saw him - he was a perfect little boy. From the tip of his squishy little nose to his pudgy little fingers to his squishy thighs and soft soles of his feet - perfect.

The findings discussed yesterday at the meeting with the NICU team and the fetal pathologist were not new, necessarily, but they did help us to piece together some of Otis' story. Their belief is that he was doing great up until the last few days of my pregnancy. Then, somewhere in there, he either got stressed or pooped just because he was full term (there was meconium in his lungs, only minor amounts, but enough to show that at some point he had pooped, but because my water was clear mostly, they figured it had happened probably a few days before he was born.) So he may have been slightly stressed at some point, or maybe just ready to start pooping. Meconium in a preterm birth they said is a sign of distress, but in a full term, not necessarily. I hadn't known that.

So, perhaps he was already stressed.

Then he had a two vessel cord. Not necessarily cause for concern, but, a little easier to bend. ("Folding a ribbon instead of folding a rope," the pathologist explained.) So it's possible his cord could have bent at some point, also taxing his oxygen levels.

My blood pressure skyrocketed on day two of my labor - for unknown reasons. High blood pressure = less blood flow through placenta. So again, taxing his oxygen levels. It wasn't Pre-E, so I hadn't realized the risk level. But it was still there. Less blood, less oxygen, more work for baby to try to keep everything alive in his body.

Long labor = lots of work for baby also. Start to finish, I was in labor for 71 hours. And there were times that my contractions were relentless in there, back to back, stacking on top of each other lasting 5 minutes each. Not easy for baby to stay strong through those, they told me.

My placenta was small(ish) - 40th percentile. Not small for a normal sized baby, but small for an almost 11 pounder. So again, the cards were stacked against him - poor little guy had to work to get what he needed, and he had done an amazing job of it, throughout pregnancy. But labor is hard work, they explained, and a long labor with a small placenta means even more chances he's not getting the full oxygen that he needs.

And then, in delivery, his shoulder gets stuck on my pubic bone. And he's stuck there for 90 seconds. Again, not long enough to do big damage, on its own. But for a baby who's been in labor for 3 days at that point, with a possible cord compression somewhere in there, fighting to get his blood for a while when my blood pressure was screwy, for an extended period of time - well, it's kind of like asking someone who has just finished a marathon (their first) to jump under water and hold their breath for 90 seconds. It was just too much for his body to figure out how to do.

If each of these things was an isolated incident, it's likely that the baby could survive. But all of them combined, it was just too much.

So his brain shut down. Hypoxic ischemic encephalopathy. Fancy words, basically low/no oxygen, low/no blood, brain damage.

And the damage was extensive. Throughout all the thinking, feeling, processing, "personality" parts of his brain. As they suspected when they recommended we take him off life support. Really, the only part that wasn't damaged with such extensive necrosis was the brain stem. The cells in his brain (and lack of another type of cell they see when damage has occurred farther out, timewise) revealed that the damage had occurred within 6 days of his death. So we have it timed at least to that point. And everyone feels that it was just a sort of perfect storm, a 1-2-3-4 punch that he just couldn't fight his way out of.

The good news in this is that they think the genetic marker that they found in Otis' array is really of no importance. It doesn't show up as a marker for anything they know of, birth defect or disorder or anything. E and I both will still be tested to see if one of us has the same marker/deletion. If we do, then we know for sure it's a Red Herring and there is nothing to be concerned about. If we don't have the same deletion, then it will be something to look out for in a future pregnancy. But it's of unknown relevance. It sounds like it's more of interest from a research standpoint to the geneticists than anything, but that it's not really of concern to us in terms of future prognoses. We will meet with the genetics team when the result of our Array Testing comes back in 4 weeks.

As a whole, they feel quite hopeful about future pregnancies for us. My age is of concern, of course. For that reason, and not because I had a child who died, they recommend a full battery of genetic testing. (We've already decided that if we are blessed to get pregnant again we will do a CVS at 11 weeks and also get a chromosomal array done too then.) They recommend that I don't go into labor ever again. Otis was fine, until I went into labor. Labor killed him, essentially. So, c-section at 38 or 39 weeks, provided the baby's lungs are fully developed and ready to go. This is also fine with me. I am very sad that I won't get to "do" labor again, that I won't get to push a baby out, feel contractions, ride the waves of childbirth. At the same time, of course, I am willing and ready to do whatever it takes for us to have a healthy living child at the end of a pregnancy. As I've heard so many BLMs state: Take this child however you need to. Just give him (or her, I suppose, though i am stuck thinking fetuses are boys because I am still so much with Otis) to me alive, breathing, crying, kicking.

They are concerned about a future baby's size because I grew such a big one the first time out. Subsequent pregnancies are shown to produce bigger babies. They can't find a cause for why Otis was so big - he was all in proportion, just big. (Beyond the 90th percentile in length and weight.) They recommend that I follow a gestational diabetes diet even though I showed no signs of GD during my pregnancy. They would like me to monitor my weight gain a little more closely. But not in a way that causes me to stress out, they were very clear about that as well. There was a moment in there where we talked about maternal weight gain as a risk factor, and I got very nervous and scared that all of a sudden, here was the moment I had dreaded - this was where the big finger of blame would come out of the sky and point to me...And yet, it didn't. They were very clear about this. "This would be more of a concern if maternal obesity was a factor, Sarah. That is CLEARLY not the case with you." They said it as if they were stating the obvious. E had to stop them and ask them to repeat it, to make sure I heard them. They laughed at his request, as if it were a joke E was making. E grabbed my hand, and looked me in the eyes, and said it again, and made sure I heard it. "This is not the case with you, Sarah. Your weight had nothing to do with this. The way you ate during your pregnancy had nothing to do with this. You are healthy. Your body is healthy. Please hear that."

"Take your folic acid. Cry for the loss of Otis. Stay in therapy. Eat green vegetables and lean protein. Laugh and dance with your husband. Walk your dogs. Ask questions. Get angry. Do what you need to do. And then come back, stop by and see us in the NICU after you have your healthy beautiful baby next year." The fetal pathologist added, "Please send me a postcard from Maui. And then send me a postcard of your second child."

And I know, it may not be as easy as that. But they left us feeling hopeful. There's still the overwhelming sadness, of course. I want my baby boy back. I want to turn back the clock to that 40 week appointment before labor had begun and demand a c-section right then and there. I know, they couldn't do it. It wouldn't have been ethical at that time. And with what I knew then, I would have refused it. And if I had requested to be induced at that point, who is to say that the labor wouldn't have also been as stressful on his body then. And then I would blame myself for getting induced and stressing his body in that way. I cried hard this morning, apologized to my sweet Otis that he had to work so hard and for so long in my labor. It kills me to think of him struggling, fighting to live, fighting to be born. It kills me to think it was a prolonged fight. A 1-2-3-4-5 punch. Or more.

But nobody made any mistakes. Nobody did anything wrong. It just was too much. The perfect storm. And it took my perfect baby boy.

Tuesday, November 9, 2010

OMFG

I. AM. LIVID.

Remember the doula with poor judgment who tried to refriend me on FB the other day? I just got a generic email from her, as follows:

Hello,


As You know, each labor and birth is as unique as the individuals involved. Different situations require different techniques. While I hope that my presence was as helpful as you anticipated, I know that I learn from each birth I attend. Please take a moment to share your thoughts and feelings about your birth. I would love to have a detailed account of your perspective of the birth, but short answers are fine too (In fact, shorter answers are preferred to putting the questionnaire aside until "you have more time!"). Thank you for taking the time to help me be the best doula I can be!


I know that some of you gave birth a long time ago, but if you would take a few moments to fill out my evaluation I would really appreciate it.


Link : [removed]


In Health,

Lisa


It then had a link to some automated survey or something.


I responded with this:

Lisa,

It feels beyond insensitive for you to include us in a generic email request such as this. Please remove us from your list.


Sarah


I'd say I'm letting her off softly. Is it just me, or do I have every right to be totally offended by her cluelessness? Even if she were "the perfect" doula and our baby had died, don't you think it would be odd for me to want to fill out a survey about our birth?



Monday, November 8, 2010

Can I get some prayers, thoughts, intentions and juju?

We have a meeting at the hospital on Friday to go over (again) pathology and autopsy reports with our care team and the social worker.

I am an anxious mess, already. I am barely sleeping and I am flipping out at every turn of the road.

If you're so inclined, I'd appreciate prayers, thoughts, love, candles, whatever you think might help.

The last time we got the reports it was like Otis died in my arms all over again. I am terrified this will be another one of those days.

I can't fathom it getting any harder. Well, actually, I can...but I can't fathom being able to muster any sort of strength to make it through life if it gets any harder. It's already taking every bit of reserve I have. And it's already unbearable. And it's only Monday. Mondays are usually the easiest day of my week.

Bah.

Friday, November 5, 2010

Landmines

Everywhere. They are everywhere. My daily life is now like walking through a war-torn country.

Today we were out running an errand and E wanted to get lunch. We went through my usual "I have no appetite, you need to decide where..." discussion, and he finally pulled up in front of one of our favorite spots. We haven't eaten there in a while, it seemed innocuous enough. I went in, put our name in, and stood waiting for our table.

All of a sudden. Explosion. I flashed back to the last time we were there. It was E's birthday. We had just gone to our first ultrasound. Saw the baby's heartbeat. My little gummy bear. We ate lunch, smiling with our joy and expectation. Afterwards we drove over to my mom's house to show her the first photographs of her grandson.

And just like that, I was brought to my knees. The tears started to fall, slowly at first. E asked what was happening, I tried to tell him. I couldn't breathe, I could barely speak...I got out enough of a description for him to realize what I was remembering, and he grabbed me and walked me out of the restaurant. I grabbed him outside, and started sobbing. (Right outside a baby store, it's like some cruel trick that they seem to pop up whenever I'm having an incredibly hard time.) We decided to walk somewhere else for lunch. Of course at this point there was no way I was going to be able to put anything in my mouth - eating has become so difficult even when I'm doing okay...in those hard moments I can't even swallow, much less actually eat anything.

The second place we ended up was a place I went with two old high school friends for a minireunion last spring. Again, a place I totally associated with being full of hope and excitement and anticipation about my pregnancy. I sobbed while E ordered his lunch to go, and we silently walked back to the car to drive home, to our home, where at least I can more or less anticipate where the landmines will be and choose to visit them only at times when I feel particularly strong....

I've managed to handle being at my "regular" haunts pretty well lately. It's the less-frequently traveled-to spots that seem to hold the bigger bombs, the ones that rip me to shreds so instantly. And I've talked about this with other BLMs, or seen it written on others' blogs, that it's so often the shocks that we don't anticipate that hit us the hardest. I never would have thought that going to this area in town for lunch today would have hit me so hard. I couldn't anticipate it. And just like that, I am blown to pieces, all over again.

Monday, November 1, 2010

Gratitude

Hey, thanks. Yes, you. And you too.

Your comments on my last post (well, actually, on all of these posts) are more helpful than I can really express. I really, really, really need connection right now, and the Real Life connections are harder to navigate for me, and I really appreciate you all coming here and your comments here - both from mamas who are in my shoes (or have worn a similar pair) and have walked these awful lonely dark roads and from my friends from around the bloggy cul de sac of what feels a lot like a past life right now...I don't know how better to express it than letting you know that when I wake up in the middle of the night and can't get back to sleep, I pull out my phone and read and reread what's been shared here, and it wraps me a little like a blanket and helps me get back to sleep. During the day, your virtual hands reaching out to hold mine have pulled me out of some serious dark spots. Or just held me while I thrash about in my dark place. Thank you.

Not sure if it was the sun coming out in full force today, getting to see my therapist this morning, the Giants winning the World Series, or some random combination of those events and more, but my mood has shifted a bit today.

I did get a good cry in this morning, in the car on the way to see my therapist. A Dave Matthews' song that spoke to me so much throughout my pregnancy came on - I think it's the first time I've heard it since Otis died. This line, "When the kids are old enough/we're gonna teach them to fly/You and me together/We can do anything..." And it was this beautiful love song, I felt like it was just for me and E and I would get me all giddy about the prospect of parenting with him. I was so excited to do this, to embark on this parenting journey...not just for myself, to become a mother, but because WE were going to do it. Together.

Today, hearing it again for the first time since Otis died, of course it shattered me. I pulled my car off the road so I could sob. And then the chorus came through the second time, and I heard it differently...You and me together we can do anything...

Anything. We can do anything. But this? Why this? Never ever would I wish this journey on a couple. And yet, there it was, a glimmer of hope, a flicker of light in those lyrics this morning. I actually felt lucky there, that I am married to this man that I love so completely, that we are wandering mostly hopelessly through this crazy terrifying forest/cavern/abyss together. E and I are doing this, together. I am a better woman because of how I love him, and because of how he loves me. I love him more than I ever thought I could. I look at him and my heart soars and swells - 7 weeks ago I couldn't imagine loving him this much - and I look at him and my heart shatters because it hurts me so right to my bones that he doesn't have Otis in his arms right now. As robbed as I feel that my baby boy isn't here with me, it is equally devastating to recognize the emptiness for E.

It is one of those blessings that I never wished I had been put in a situation to recognize that I have so clearly gotten to see Erik's ability to be a dad, to parent so completely, to love unconditionally and with no end through this loss.

(Oh my gosh, the schmaltziness of this is about to make me gag. Apologies. It's late and I'm tired and want to get my thoughts in print and don't have energy for editing or revision. Please note that I also reserve the right for any and all future frustrations with him...)