gratitude

It’s gut wrenching how much I long for her these days.

A whirl of small brown leaves flies against the windshield of my car as I drive by their tree, almost bare.

Hello, Beautiful…

I feel her close, I really do.

And also, deep in my gut, everywhere in my heart, in all of me – the awareness that my child in her body is missing.

For about a month, we’ve had her picture close by in the dining room of our new home. It’s in a temporary frame… I’m working on something much more grand, much more beautiful. But her sweetest face is there in all its 8x10 glory, peeking out at us as we eat, draw, do homework, putz around on the computer, talk. As I write this.

There she is… and yet that’s not her. It’s just her photograph. Sometimes I feel her there. Sometimes she is in the leaves. Sometimes in the occasional milkweed seed that reminds me of the oh-so-sad-so-terribly-incredibly-painfully-sad week we spent in the mountains after we said goodbye to her. Sometimes in the red tail hawk that flies above Cincinnati, though much less frequently than she did in San Francisco.

When I look at that photograph, I just miss my Baby Girl… in the flesh.

I am reminded each time I look at it just how beautiful she was. And how much she struggled with each breath. That’s when the tears come, when I remember those days in between,

She’s doing surprisingly well… this is what she’ll need in order to come home,

and,

She just can’t get enough air into her small fragile lungs, even with all this support.

That’s when I imagine what it would be like now if things hadn’t turned, if she had come home on oxygen and continued to get stronger.

*****

I know how lucky I am that I got to know her when she was alive. I know how lucky I am that I got to hold her, to kiss her, to sing to her, to touch her soft skin, to look into her eyes as she looked into mine. I know we didn’t all get that in this community of deadbabyparents… I wish we all had. I wish all of our babies were still here, in the flesh, alive and well.

Maybe I have more photos of my baby, but it doesn’t make it easier to have lost her. Nothing can make it easy to lose a child. Easy isn’t a word I identify with anymore. As a word, it feels trivial and doesn’t serve me much. But hard… that feels too simplistic. Sometimes it isn’t hard. Sometimes it just is.

Strange feels more like it these days. Strange because I can simultaneously feel acceptance and disbelief. So many days that is my normal. I still say to Tikva, several times a week, silently or out loud,

Oh Baby Girl… you died. You died.

Then a voice within me will remember, will insist,

But you lived, too. I won’t ever forget that you lived. And for that, I am grateful.

It may have been a blink of an eye, like a daydream… but I wouldn’t trade it in for forgetting the loss of you. Not ever.

*****

I was terrified last year at this time to spend Thanksgiving with our family. I was terrified to be up close and personal with Tikva’s cousin, who was born during the weeks in between my daugther’s birth and her death. I was so scared of being face to face with the reminder that my baby wasn’t there, that he was here and she was not. The fear became something bigger than itself, and I almost spent Thanksgiving separate from my entire family.

But in the end I went. And I sat with this beautiful little boy on my lap, felt his newness, looked into his big brown eyes that reminded me of Tikva’s. And I saw his bright soul, felt his pureness. The ease of being with an uncomplicated soul that a baby is. Connected to him as his own self, not as a reminder of what I didn’t have. He had no idea that he had a cousin who died shortly after he was born. One day he will, and forever he will remind me of the age Tikva would be if only…

But in that moment he was just pure love. And I let myself take that in.

And I looked around at my family all over the house, watching football, taking one more bite of pie while talking and drinking coffee. And I felt so deeply grateful for every single one of them who had held me together before, during and since Tikva’s life. The loss of the months leading up to last Thanksgiving didn’t take away my gratitude for all that remained.

I felt I was still here because of them. Because of my husband and my incredible and brave older daughter, my Dahlia. Because of my sister and my father and my family and my friends – my community. Because of my city, my ocean, my park to walk in, my hawks flying above. My yoga classes to cry silently in. My work to go to for a day’s worth of distraction from my thoughts, and time to read a babylost blog when I needed to go in.

And because of this place I stumbled upon in the early months after Tikva’s death. Where I breathed a sigh of relief that I wasn’t alone, and soon felt the uncomfortable mingling of that relief with the realization that the only way I could not feel alone here was for other parents to also have lost their babies. Where you just get it without my having to explain.

Thank you.

*****

I’m not much for holidays honoring consumerism and the massacre indigenous peoples. I’m not a huge fan of turkey and the gluttony that accompanies this holiday, especially when I know that many of us aren’t blessed to eat every day, much less such a feast. But I do get swept up – just a little – in taking pause for gratitude.

For me, gratitude after loss is different. It’s too simple to say that because of all I have lost, I appreciate what I have so much more. It has something to do with the impossible-to-shake-now-and-probably-forever recognition of just how fragile it all is… that all I really have, no matter how much time I get here, together with those I cherish, is this moment I am in. That understanding just doesn’t let go of me, and neither does the gratefulness I feel that seems to go hand in hand with it.

Because if all I have is this moment, then I better kiss my Dahlia one extra time today, better eat that last piece of dark chocolate waiting for me in the cookie jar, better call my dad to tell him I love him, better tell my husband one more time just how proud I am of him… and I better be kind and gentle with myself.

*****

Thank you, Tikva, for awakening me to the present moment more than anyone ever has. Because with you, I could do nothing greater than be completely present – unconditionally – for as long as we would get together.

And beyond.

.::.

How does gratitude feel to you now? Is it there? The same? Different? If you do feel it, what makes you feel grateful?

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?

replacement

With our surrogate, Kyrie, just a few weeks away from what we hope will be the safe delivery of our son, I've been thinking a lot about the relationship between this possible new baby and the twins we lost a little more than two years ago. Of course, this new child can't be a literal replacement for the twins. But there's less to distinguish them than one might think.

 Part of that is simply the mechanics of IVF. One afternoon in April 2006, on the third floor of a big hospital in the Northeast, ten embryos were coaxed into being. Curled in their petri dishes, cells dividing, the embryos, from my point of view, were interchangeable. I hoped that at least one of them would grow to be my child, but I didn't care which one and I didn't give much thought to what would happen to the others.

The doctors chose two embryos -- call them A and B -- to transfer and froze the rest. A and B became the twins and we all know how that turned out. So, in April 2008, they unfroze embryo C, which is now, at least theoretically, the baby due at the beginning of January.

Although the selection of which embryos to transfer wasn't entirely random, chance clearly played the guiding role. Right now, I could just as easily be mourning the loss of embryos D and E or cautiously celebrating the impending arrival of F. And that cascade of contingencies make it that much harder to attach significance to the individual identity of any of them.

Moreover, over time, the twins themselves have become mostly an abstraction. I have almost no actual memories of them -- a positive pregnancy test, a dozen increasingly ominous ultrasounds, a month or two or flutters and kicks. What memories I do have are really about myself, my hopes, my wishes, my painting an imaginary future in pastel shades of pink and blue. And, though much more hesitantly, I find myself now thinking almost the identical thoughts, transferring the old dreams to this new child and wondering whether I can see this child -- at least in some non-literal way -- as one of the twins returned to me.

Because I tend to think in metaphors, and extended and heavy-handed ones at that, let me put it this way. Imagine you're looking into a series of lighted kitchen windows at dinnertime. In one lucky house, all the chairs at the table are filled with cheerful family members. In the house next door, there are chairs with no-one sitting in them, but you notice that they're drawn close to the table, still part of the family circle. In yet another house, the table at first seems full, but if you look in the next room, you'll find the unused chairs carefully, lovingly stored away.

And then, in the house I hope one day to live in, there's a chair that, in the manner of Schrödinger's cat is simultaneously occupied and empty.  And in it sits a little boy who is at once here and, well, absolutely elsewhere.

Your thoughts on the concept of the replacement child? A dangerous or unfair idea? An understandable rationalization? Something in between?

What does your dinner table look like?

journey's end

My father and stepmother were in town, so they took me out to dinner at a restaurant a good deal more upscale than the ones I usually frequent.  The menu, printed in copperplate gothic bold, featured a smörgåsbord of resolutely non-kosher choices -- Curried Tasmanian Crabcakes, Ginger-Wrapped Skate, Pork Loin Dulce de Leche.  I asked the waiter what the soup of the day was, but he said he couldn't tell me because "The chef personally creates it based on what he finds freshest at the market that morning." 

We reviewed my nephews' soccer season, wondered why my sister never seems to be able to find a job or a boyfriend, critiqued the recent Supreme Court decisions on money laundering, and lamented the housing market in London.  

At the end of the evening, as we were saying goodbye, my stepmother reached out to hug me and said, "We were so worried about you, Niobe.  We didn't even know what to say."

"I'm fine,"  I said.  And I meant it.

After the twins died, I read a lot of articles about bereavement and mourning.  They said that the journey of grief goes on for a lifetime.  They said that you never truly get over the death of a child.  They said that the child who died will always have a special place in your heart. 

They didn't say what to do when you come, unexpectedly, to the journey's end; when your fingers fumble, searching for that familiar hole in your heart, only to find it's no longer there.

The Rule of Thirds

“Keep in mind the rule of thirds:  one-third of your friends will be supportive of your need to mourn, one-third will make you feel worse, and one-third will neither help nor hinder."

--From Alan D. Wolfelt, Healing A Parent’s Grieving Heart:  100 Practical Ideas After Your Child Dies

A good friend who lost her husband very suddenly to a brain tumor in ’04 sent me this book last year after Maddy died.  She liked the “Spouse” version, and being cut of a similar cynical edgy sports-lovin’ foul-mouthed cloth as I, thought I might appreciate Child version.  I did, it’s the griefbook I appreciated most, and still find myself picking it up a year later.  One thing I really like about this book is that every page is a topic with a few bullet points, so you can open it randomly and discover something, and if something sits wrong on a particular day you can just flip to the next page and see if that feels better.  (Or put it down, and pick it up months later.  I find it to be rather timeless that way.)  No need to sit and feel like you need a few hours to go through something linear.  I also like that, for-all-intents-and-purposes, it’s genderless and can be applied equally to a husband or wife -- and let’s face it, very little out there on this subject can be.

I'm sure I read this particular passage long ago, during the first pass, but wish it had stuck.  It did not.  And so I am constantly amazed at those thirds who fall at the ends of the spectrum, the ones who surprise me with their understanding and kindness, and the ones who floor me with their inability to show even a modicum of compassion.  The other surprise for me was that this “third rule” included family.

Let’s start with the innocuous middle third.  There will always be those who will treat your life-altering experience as a vacation:  you were gone for a while, you came back, maybe shared some pictures and stories, people mingled around the water cooler for a few days to follow up, and then it got dropped and life moved on.  At some times I’m a bit taken aback at what appears to be complete ignorance (“Did I tell you?  You do know that my kid died, right?”) and yet 30 seconds later am so fucking relieved to be deeply involved in a conversation about how maybe I should pay attention to the  Penguins in the playoffs this year.  Aback that they wouldn’t say anything, relieved that they said nothing, all the while rather pleased that they don’t view me as some bad jinxy hex that needs avoided altogether (although I may be missing some crucifix and garlic waving when I turn to leave).  And frankly I’m at the point where I’m rather pleased that I can go places and talk to people WHO KNOW about things like books and dogs and whether the Steelers did right in the draft (another quarterback?  really?).

I’m constantly surprised by the bookends.  I’m blessed to have some very good friends and family in my life that I knew would be supportive, and they are, but I’m always so impressed by how much.  These are people who have such grace, they make it seem so effortless to say the right thing at exactly the right time.   I end up thanking them, they are just so meaningful and classy, and they look at me as though I’m thanking them for breathing or combing their hair – they simply can’t understand what it is they’re doing that warrants praise when it is simply how they are.  And I realize:  I probably wouldn’t be one of these people if I were on the other side of this mess.  I’d be tongue-tied, never knowing what to say, not horribly sure of my own emotional sanity, and probably wind up in the innocuous middle chatting about the NFL draft.  

But I know I give thanks, and am so surprised by the outpouring of kindness, because of the other end of the spectrum where people shock me with their unsympathetic cruelty.  I don’t think in a million years I would’ve thought that someone could turn my baby dying against me, but indeed, some have.  If someone had told me the day after Maddy died that friends and (gasp) family would not just behave awkwardly around us but actually treat us poorly I would’ve scoffed.  No way.  People are not that stupid and cruel, are they?  (are they?)

Um, yes, gentle reader, they are.  It really began in earnest around six months after.  And suddenly  people began leaving signs in fluorescent paint:  enough.  Stop.  You’re wallowing.  Party poopers.  Isn’t it time to move on?  How dare you suck the life out of someone else’s joyful event.  Don’t want to call me?  Well, two can play at the game.  Apparently six months is about the time when the people of little patience move into that end of the spectrum, and begin a not-too-subtle dance of pushing you, hurrying you, belittling you, ignoring you.  I think it dawns on others, if you’ve ignored them for this long for other reasons (say, they have children that would’ve been the age of your deadone and they haven’t been horribly involved anyway, staying in the middle third for so long), that you’re avoiding them.  No, you’re angry at them.  They develop a complete psychosis about how you must feel about them, without them asking you.  And if you’re unlucky, someday they’ll dump it on you – like one of my neighbors did.

Perhaps most surprising and upsetting to me was that family fell into this category of the “make you feel worse” third.  I should add a disclaimer here that I do have a couple family members – one who I assumed would handle the situation poorly given past experience, and another who had a baby shortly after who we ceased contact with – who have flabbergasted me with their solid appearance in the front end of the spectrum.  They are patient, articulate, compassionate, and the latter even defends us against the detractors despite the fact that we haven’t seen them much since the birth of their son.   But to think your own flesh and blood would grow tired of your grief -- tire of hearing of their relative!  Maddy!  Don’t you miss her too? --  impatiently try and hustle you along through the alleged grief steps (“They must be in that anger phase”), wonder if you’d ever snap out of it.   And then do things like fail to show up at a memorial service for your daughter after promising they’d be there, refuse to answer your calls (even on holidays) after telling them they were disappointed, and as Julia so eloquently put it a few days ago:  refuse to check their shit at the door.  It’s not about them, none of this.

I’m torn; while I’m relieved to look around the blogverse and realize other people’s families let them down too and we’re not the only dysfunction to arise from the ashes of a deadbaby, I’m also saddened that it seems to be such a pattern.  There’s a dissertation to be written here, about the pressures such tragedies put on extended families and how they deal with them long term.   Are they more invested in our happiness than our friends, neighbors and coworkers?  Or does the law of averages simply say that a third of the people you run with, no matter their relation to you, will fall over there, off the edge into a pit of selfishness and denial and ignorance?

But when they get me down, I flip over and revel in the wonderful part of the spectrum again, and wonder why it is that everyone isn’t wired like that.  I would like to think behaving that way is human.  It’s clearly not.