after the transformation

Oh, ppphhhhhh… 

What do I do now?

She’s been gone longer than she was here, even counting the time she was inside me.

I’ve passed all of the first anniversaries: her ultrasound, the day she was born, the day she died on both the Jewish and Gregorian calendars.

We’ve anticipated her arrival.

Hoped deeply.

Said hello, welcomed our second child to the big world.

Loved unconditionally.

Taken her outside to breathe fresh real air.

Said goodbye.

Buried her fragile little body in a tiny coffin in the ground.

Her box of memories is full, her photo album is made. Her special soft things in jars, still smelling a little bit like her. Everything put away in the trunk that sits next to me in the sunroom, keeping me company.

Her quilt is coming along, something I am not in a hurry to finish… When I work on it, I feel close to her.

I still haven’t framed and hung her photos, but I will… soon.

Her headstone has been made, set and unveiled. Flowers planted with her placenta. Her DNA and ours stored at the hospital for research. Her birth and death certificate are in a safe place with other family documents, confirming that she really did exist, always a part of our family.

We’ve moved away and settled into our new home across the country.

Our new chapter has begun.

Now what?

*****

Today I watched as two cicadas completely left their exoskeletons and began a new chapter in their new skins, so bright green they were almost turquoise. They hung there from the branches of a tree, clinging still to their old shells, transparent wings spread, contemplating new destinations, new purpose.

It was stunning… I’ve never seen anything like it. For three weeks now I’ve been listening to them singing their songs outside, surrounding me with constant tropical melodies. I’ve just never seen a cicada before, not even in a photo.

Everything changes, nothing stays the same.

Impermanence... I see it when I look in the mirror. I look different than I did last summer. I look different than I did two summers ago. I think I look different than I did a few months ago. I’ve reluctantly left my exoskeleton, sometimes hesitating to leave it completely behind. Longing for it, for simpler times.

My old shell consists of all the mes I’ve left behind, said goodbye to, willingly or not.

It’s this next place I’m not so sure about. This after the transformation place. I can so easily tell you how changed I am from the person I was before I knew Tikva. I can describe in vivid detail how she transformed me, and for the better. But I’m not exactly sure what that means for me now… now that I’ve been transformed by knowing, loving and losing my child. Now that I’ve undergone a change I never in a million years would have chosen. Now that I’ve gotten kind of used to this new person that I am.

*****

How many children did you bring with you to Cincinnati? he asks my husband.

We have two children, but only one living. We’re here after a year off, since we lost our second child last summer, my husband answers.

I say nothing, look away even, let my husband tell him. Then I look at this new acquaintance and see the sadness and searching in his eyes as he looks at me then quickly looks down. I know what he wants to say. After a year, I am so aware of the sadness I’ve held in other people when they look at me after learning about Tikva. Some days I can take it better than others. This time I just notice it, allow the compassion to flow in silence. Nothing needs to be said.

*****

I hoped to be carrying another child by now, but I’m not yet. Still, I can feel that child’s spirit close, waiting. Sometimes I can’t distinguish it from Tikva’s spirit. I don’t think that matters. Baby spirit energy is one and the same. I think it comes from one big well.

I watch my older daughter and feel how powerful is her desire to be a big sister to a living sibling.

I wish I had a sister to play with who wasn’t a spirit, she says.

Me too, I answer. Me too.

She would have a sibling who would be almost two right now, if I hadn’t miscarried in between her and Tikva. Then there would never have been a Tikva… Strange.

Tikva would be 14 months now, would probably be walking. She would be so beautiful, that I just know for sure.

For two and a half years we have wanted to give Dahlia a sibling… One who can play with her.

We still do.

*****

It’s almost the new year on the Jewish calendar. The biggest time of the year. This is supposed to be a time of reflection, of going inwards, of making amends, making peace. I always find this time tumultuous inside, unsettling, unsettled. I guess that’s the point. I don’t know if I’m ready for a big time right now. I’m feeling especially un-Jewish right now, which is ironic as the wife of a future rabbi. Really, I just feel like climbing under the covers and not coming out until October. Until the new year, a new season.

Last year at High Holy Day services, less than two months after Tikva died, I alternated between sitting next to Dave in the sanctuary, crying, and running outside to cry alone. I resented everyone dancing in the aisles all around me. I felt no joy, no peace, no serenity. I felt isolated, empty, lost. Dave wrote angry messages to God in his journal. I did not fast on Yom Kippur. Dave and I got into a fight about something, I can’t even remember what. Afterwards I went with a friend to a candlelight vigil for babies who had died. It was one of the saddest days of those first few months after losing my Baby Girl.

I don’t feel especially compelled to fast this year either. I don’t feel especially inspired to do much that is Jewish, to be honest. Keeping kosher – in the limited way we’ve been doing so for several years – feels kind of trivial after what I’ve lived the past almost two years. That is not how I connect to something bigger, by eating my meat and my dairy separately… by fasting on Yom Kippur.

*****

There is a new layer of sadness churning deeply in me right now, a layer I’m not quite ready to shed. A space I just need to exist in for a while. I’m not entirely sure what it’s all about, but I do know that it’s less tidy, more raw than I’ve felt in many months.

It’s not the part of me that wondered how I would ever survive losing my child, terrified at the thought of forever having to hold that experience. I’ve survived, relatively intact. But I’m not settled. In fact, I’m feeling rather unsettled right now. In a new kind of limbo, an in between place.

Now what?

Now life goes on. Now life continues.

That’s it? It just continues? Just goes on, business as usual, except that I’m completely transformed in the middle of a world that hasn’t really changed much at all?

Yup.

How come I have to adjust to the same old world around me, and no one has to adjust to me?

Because you’re not the majority.

I’m not? I know and know of so many parents who have lost babies, our numbers grow every day, and we’re still just a minority? But this is all I know. What am I supposed to do with the transformation I just went through? With this new self I am sort of used to and still getting acquainted with?

*****

Tikva? Are you there? Are you still close? Is that you in the giant yellow and black butterfly I saw yesterday? In the turquoise under the transparent wings of the cicada? In the tiny bird eating an Oreo cookie outside the ice cream store yesterday?

What do I do now… still without you?

I will let myself cry for as long as I need. There are no rules around how long is enough before being done with the sorrow. You are never really done, are you? Here in this place, we know better than to create those kinds of boundaries. Here we feel what we need, when we need, how we need to.

I miss you, Tikva. I miss you differently now. But oh how I miss you still, my Tiny Love.

.::.

Where do you find yourself now? Are you comfortable here? Is it still new for you? Unsettling? Do you feel like an old hat? Transformed, for better or worse? What do things look like now, here, for you?

Handling the shattered nutcase

I'm not there yet. Still got a ways to go before the World can pass through me without pain.

Julia talked of toes mashed and unreasonable expectations of accommodating thoughtless acquaintances. Tash spoke of awful, awkward silences and evasions within her own family. It broke my heart to read their words. I've experienced shades of each in various circumstances. Facebook is a series of landmines of super-happy-family-ness I can barely handle. Farmer's markets bombard me with babies and moms and dads with kids on shoulders.

There is no way for them to know what it does when they tell me that he's ten months old, and he's keeping her up every night. I look the toddler in the eye and shatter, but you'd never know it by looking at me.

I'm shattered all the time. I don't have to hide it here.

Thankfully, family and friends have been extremely supportive and understanding. I don't feel rushed in my grief. I don't feel like a total nutcase that must be gently handled. They take us face front and let us tell them--as well as we can-- exactly how we feel and what we need.

Often what we need is space and compassion. But not too much space. If I don't get enough attention I start to freak out. Sometimes I feel the disappearing act I'm trying to pull on my grief is working too well.

And not too much compassion, cause seriously, what the fuck? I can handle it, whatever it is. Obviously I can handle anything because otherwise I'd be long gone by now.

Of course, I'm terrified of what else is out there that needs to be Handled, so be careful with me, okay?

Email, instant messages, txts, posts on messages boards, comments to our blogs, they give me strength. They give me a web of words and understanding that transcends time and space.

We Skyped into a birthday party for our friend out in SF. It was mesmerizing to see the faces of our friends that I can usually only hear in my mind as I read their various written missives or enjoy as their disembodied voices over the phone. This was their presence in a powerful, almost magical way.

Through the digital transformations and subtle human cues I was able to pick up that they loved us so much, and missed us a million times over. We toasted beers through the cameras, but the hugs didn't quite connect. Too many square edges on the MacBook.

It was amazing to be with our friends clear across the country, for even a few minutes. And to know how much they wanted us to be well and happy, it was heartfelt and true.

Should I feel lucky for that? There must be a better word. There should be a word for good-feelings-in-the-middle-of-disaster. Because it is that, still, every day in one way or another. The wrenching wrongness of everything we are not doing with Silas is a brutal and confusing burden to bear. We aim for grace, but like Kate said, sometimes fuck grace.

I just want to get by without breaking anything else.

My heart breaks easily. I feel it as a slice from my breastbone to the deep reaches of my gut where everything falls into nothing.

Baby carriage. Pregnant belly. Offhand baby-talk.

Slice, slip, drop.

I attempt to fall through the vacuum of his absence into a calm acceptance of whatever comes next.

The everyday awful, the sliced gut and bottomless stomach, sometimes it makes the good parts feel especially rare and fragile. When I feel happy I'm often doubly amazed. What's the word for that one? The knowing-it's-good-because-you've-had-it-so-bad?

I also know this post doesn't make much sense. But how am I supposed to make sense of the fact that it has been almost a year and... and... everything? All of this. Every word from here to a year before. Every day we've half-lived wondering what the fuck just happened to us?

But I'm not trying to understand why. What I am trying to understand is what his life and death means to me and to Lu, and how I will navigate the rest of my life with his absence in my heart.

So far, this year, all of the World has passed through that hole. There is no other way into me anymore. He is the lens through which my everything is sharpened and transformed.

I wonder if that will ever change. I wonder if there is a way to ever feel whole and true. I wonder if I want to.

~~~~~~~~~~~~~~~

Do you?

I heard the news today, oh boy

My baby died.

Our lives entered some state of suspension, bits of grief floating in gelatin, still, timeless.

Everyone else, though, rushed -- and rushes -- on. Breathless. And there is news.

I suppose in the old state, there was good news and bad news, but filtered through the prism of Maddy, the news onslaught all seems painfully blinding. The good reminds me of what I am not, what I lack, what I was. The bad piles on, pours salt in the wound, kicks me while down. All news hurts because it means time progresses, the earth continues it's orbit, while ours sits stagnant. Others actually have news while our news remains the same, day after day, week after week, month after month. My baby died. Our child died. There is nothing else to report.

Anonymous events filter in: typhoons, random accidents turned fatal, economic shit storms, another soldier killed by a roadside bomb. This celebrity is pregnant, that celebrity had twins, yet another lost all her pregnancy weight in two months. A great new movie, a shiny new car, a championship won, a true love uncovered. Headlines can be scanned and papers recycled, televisions muted, and websites clicked off.

But the news of family and friends is not so easily negated with a remote. There are pregnancies and births, weddings and divorces. Someone discovers cancer, someone wins a three-week vacation. An elderly relative dies, a friend adopts a puppy. Someone loses a job, someone crashes a car, and lo! Someone lands on their feet -- walks away unscathed, and starts the employment of a lifetime with a corner office a week later.

Somehow, it's all a punch in the gut.

Herein lies the conundrum: if all news hurts to some extent, do I want to hear about it? And if so, how exactly do I want to hear about it? And what does my current state of griefdom mean to the messenger?

Because unlike black and white type on paper or a stately correspondent talking in a flat voice, this type of news is typically told to us, orally or in writing, directly from someone else -- someone with a link to us, someone who knows. I wonder, how hard is it for someone else, someone not in our immediate situation, to tell us their news? To tell us of someone else's news? Because we're not the same anymore -- we're different. There's a fine line somewhere in there between "Please don't forget my child, please be gentle when you tell me" and "Please don't treat me like I'm fucking batshit." And perhaps I should give people more slack in the line when they're hemming and hawing and running through how exactly to word what it is they're about to say given our new status, but part of me thinks . . . is it really so hard?

Because sometimes instead of just coming out with it, people decide it's easier not to tell you at all. It's easier for them. There is no awkward moment, no watching you break down into tears. No need to remember that horrible awful thing that happened or even bring it up peripherally. And I suppose to convince themselves of their righteousness on this point, they assume that you're fragile, weak, sensitive, outright crazyloco. Can't handle it. Maybe they think they're doing you a favor by not saying anything! This is helpful! Aren't they being wonderfully in touch with your needs!

What news are you being deprived of? Are you sure you know everything that's going on? Are you being apprised?

Because in the end, we found out. And discovered that everyone had run circles around us for the better part of a year. And now it's not the news itself that hurts me -- oh no. It's the realization that everyone thinks I'm bananas, and can't deal with other people's lives. It's also the realization that people around me don't care enough about me or the reason behind the new me to be uncomfortable for a few minutes. To take a risk that I might sniffle and need a kleenex. That I won't heed the warning not to harm the messenger. It's the understanding that Maddy is an inconvenience to them -- that I am an inconvenience to them, and why would I want to continue in their presence if they feel they can't freely speak about their news? The way their time is flying by and events are occurring at breakneck speed? None of it is possible if I'm in the room with my big technicolor elephant at my side.

How hard is it really, to just begin a sentence: "I need to tell you something. It may hurt to hear it, and for that I'm sorry, and I understand how it could -- but I didn't want you not to know."

We found out about the pregnancy, after the birth. And truth be told, the idea of a healthy newborn doesn't hit me nearly as hard (if it does at all, anymore) as the idea that I am a pariah, a leper, a fragile freak. Maddy is nothing more than an annoyance, my grief a nuisance in the daily ongoing of hands moving around the clock. It is easier, not to speak with me, not to bring It (capital I) up. Two and half years later, I am once again alone, sitting arms akimbo in my still pool of gelatin, while time whizzes by -- this time laughing, pointing, and gawking at me.

Have you discovered family and friends hiding news from you after your loss? How did it make you feel, and how did you deal with it? When family and friends delivered significant news that might effect you differently now, how did they do it? How and what do you want to be told -- if at all?

Duty

People have stepped on my toes before. Many have done so and walked on by. Whatever-- people are self-absorbed, I know, and I try not to take it hard. I am OK at it, I like to think. You forget how much work I did on this one project last year? Harrumph, of course, but I'll deal. An extra latte, perhaps. Oh, yes-- just the thing. In fact, I discovered, that extra latte is a cure for great many things, people being inconsiderate prominent among them.

Except. Except when they are being inconsiderate about my dead baby. Scratch that. Not all people-- most people, people who don't know, who are just randomly passing by, who know me, but not well,-- from them it will sting, sometimes a lot, but it won't sear. They, I reason, do not owe me consideration. Not any more than any random person. And though I, myself, may aim for considerate at all times, I know that not to be everyone's standard. And so I don't hold most people to mine.

I watched the pilot of The No.1 Ladies' Detective Agency this spring purely on the strength of the previews. I stayed for the series because I liked the pilot. And because the main character, Mma Ramotswe, is a dead baby mom. They might've laid it on a bit thick in the first episode with a violent flashback (not that there aren't things to have violent flashbacks about in her particular dead baby story-- more like that the one they picked for a flashback isn't entirely believable), but from then on I really liked how they handled that part of her story. It's in every episode, and only occasionally overtly.

Most of the time it's something that I bet many a viewer won't even pick up on. It's subtly written, and subtly played. But if you know, if you've heard these things yourself, you can see it, plain as day. Like the time when a client of her detective agency, not thinking much of her suggestion that perhaps it wouldn't be a good idea to hire a detective to spy on his 16 year old daughter, tells her that she, as a childless woman, must take his word for what's the right thing to do there. Mma Ramotswe doesn't say a thing, but-- and this one goes to how good an actress Jill Scott is,-- you can see just where that hits her. 

In the show, as in life, the context is everything. Mma Ramotswe tells another client, a woman looking for a son she believes probably died in Africa many years ago. But not this man, because, and we all know it, it wouldn't make a difference to him where his daughter and the need to spy on her is concerned. Besides, perhaps this is not the type of man you want to trust with that most sensitive of personal information, and likely not something you want him to know in a professional context anyway.

So context. Context is what I've been thinking about. When it's a friend who steps on my dead baby toes, or, as I tried to explain to a group of friends recently, when it's friend who hits my open compound fracture, the existence of which fracture is something the friend in question is most certainly aware of, that's not something I can just latte away. But it is, for me, something that can be reasonably turned into the proverbial water under the proverbial bridge with a simple and direct "I am sorry."

What has me bewildered even now, more than two weeks after that conversation, is the statment by another in our group of friends, that she thinks we must consider other's feelings in how we react to what people say. As in, don't make a scene. You know, don't you, that people don't mean to be hurtful, and therefore, even if you did point at your compound fracture and wince in a way that should've suggested to the person continuing to hit that very spot, that perhaps it would be best to stop now, you shoudn't, before hightailing it outta there, finally raise your voice to suggest that the person stop-bleeping-hitting already.

I guess a more accurate description is that I am by turn bewildered and infuriated, and working hard to stay with the bewildered (because infuriated may end up fracturing the group). Because you know what? I don't think we have a duty to be nice to people hitting us where it hurts. We might, as Mma Ramotswe does, not want to say anything, either in a particular situation or at all. We might not want to be party poopers, or we might not feel up to talking just then, or, indeed, ever. For our own reasons we might choose not to speak up. But what gets me is the suggestion that we ought not to, or that if we do, we be super extra tripple nice about it.

I do not believe we owe it to anyone to keep quiet. (I'll go further-- some of the shit people say, they really should feel bad about.) I don't think the one in pain should also be responsible for gracefully articulating where and exactly how much it hurts. Luckily for me, most of my friends don't think that either.

And what do you think? What do we owe those who are hurting us with their words? Does it matter if they are friends or random passers by? What, if anything, do you think people owe us?

yours sincerely, the clinical genetics dep't.

"The cause of her demise was early onset cardiomyopathy."

Commonly referred to as DCM. The knew from day one what was wrong with her heart. They credited my instincts for sensing something was off, for bringing her to the A&E that morning. I was worried about her loss of appetite. Never in my worst nightmare did I envision we'd end up riding to the children's hospital in the back of an ambulance by mid afternoon.

They also told us that day that they would likely never be able to tell us the underlying cause.

Unacceptable. Horrifyingly unfair. You are DOCTORS. Giving me the information I need to help her get better is your JOB.

We had absolutely zero control over the situation from that point forward. She struggled for the next week before we lost her after the longest night of our lives.

"I am pleased to let you know that again, no abnormality was identified. Whist this is good news, it leaves us with an uncertain situation once again."

That's it? That's ALL you can give me? After a year of candidly discussing how much of her DNA was left, your desire to preserve the precious reserves in the event that some discovery was made? THAT IS MY BABY you're talking about in goddamn remaining measurements, for the love of all things remotely sensitive.

"We have tried to explore the possible options as to the aetiology of the cardiomyopathy identified in Sadie and we remain without a definitive answer."

Then honestly? What the fuck ARE you good for. Honestly.

"This means that we are left with a small residual risk of similar problems happening again in any future pregnancy."

A small residual risk. How do I wrap my head around 'a small residual risk' as it applies to the life of my child? I can wear a helmet. I can tell him to put a condom on. I can wait for a green light before crossing. What can I do to mitigate the risk of going through it all over again? Much more importantly, putting another child through it all over again?

"I would advise you to contact me when you confirm a pregnancy at home in order to enable me to arrange the relevant scans for you."

Well if I were you Honey, I wouldn't go out and buy stocks of Clear Blue Easy any time soon. Trojan, perhaps?

.::.

I'm going through a bit of a bitter phase lately. I hate that I still get angry at the world, but it's still there, simmering right under the surface. It gets worse the more I put pressure on myself to gather the proverbial balls and start taking folic acid.

I like my questions to be answered, and I typically 'need' to make my decisions from an informed point of view. If I'm being really honest, I regularly wonder why it couldn't have happened to someone else. Someone awful and cruel. Someone who 'deserved it'. 

Without the control I would normally exercise in another paramount life situation, I am left feeling weak. Feeling weak piques my temper. I'm not proud of this, but there it is. As I work to not let it seap through the seams to stain the relationships in my life, I wonder how thousands of other parents in our situation have learned to deal with the same situation.

.::.

I think this time around I am asking for help.

I would really, really love to hear from parents who have been through experiences with genetic counselling, whether your results were definitive or inconclusive, like ours.

I would really, really love to hear from parents who went on to have more children despite the risk of a recurring condition.

.::.

If your loss was due to a potentially genetic condition, how did you deal with the decision to try again? Were you able to put the stats from your mind and forge forward with hope? What did you find helped you in the process?