i'm gone and i'll never look back again

Laying flat on my back on the couch surrounded by the darkness in my heart is how I have spent many bright days and long cold nights over the last three years since Silas died. I was not new to the idea of sadness and loss and hardship, but it was a revelation to be consumed by it so completely.

After all, there is nothing as completely devastating as the loss of your son or daughter.  We know our parents and grandparents are not immortal, but it seems like a given that our children will outlive us long and strong, healthy and true.

But now I know.

Silas's death transformed my guts.  I used to shit perfectly.  Once in the morning, once at night. Solid, honest craps each of them.  But now I'm erratic.  Sometimes the toilet sucks, and I know I'm not good when I'm not looking forward to that daily event.

Do you know the gurgles?  When laying flat on said back completely annihilated by how painful it is to miss my son I feel the slow crawl of tension mixed with terror sleazing through my innards in the dreadful, lonely night.  Lu is next to me so I'm not alone but the loss is endless.  Like the night will never end.  Like the gurgle slip-slithering through my insides will never end in a solid shit.

It is the gut-pit we all know.

It seems clear to me that all the sorrows of all that is known can fall endlessly into the despair that parents feel for the loss of our little ones.

Based upon my own experience, it really is that fucking bad.  You can't hyperbole the shitiness of this shit.

Our arms are made to hold them close, even when they are not here.

Here he is, though.  Absolutely present in my life.  My son Silas.  He exists more concretely in the typing of his name than in his physical existence.  I held him briefly hooked up to tubes and then later when it was only us, but I've held him even closer in the way I think about him, the way I write about my life without him.

I've learned to think in a certain way that seemed invaluable to survival.  Music was my first refuge.  I fell in love with music that made me feel Silas's absence with crystalline clarity.  After music it was laughter.  My brothers helped to remind me that bitter laughter is better than none at all.  And if I could find my way to open my mouth to speak or yell or maybe even laugh, then food and drink would surely find it's way in.

Look at me!  I'm a normally fuckitioning human.  Yeah that's right.  Fuck you functioning.  Good as fucking new.

Slowly I re-learned how to present a relatively normal facade, but always at the center of our focus was creating Silas's sibling.

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

I write to you now from the other side.  Stop reading if you are angry about not having a child, or if your loss is so fresh everything is enraging.  Read that top part again, and keep fighting.  Don't let anyone stop you from being exactly who and how you need to be.  Do not stop.  Do not stop.  Get up, stand up, throw those fucking hands up.  Push out the night.  Hide from the daylight.  Embrace your endless, enraging tears for your child, your daughter, your son, your big sticky stinky shitting fucking life.

It's true, it really does suck this much, and it always will.  Always always always.  It will always suck exactly this much that you and me and my wife and your grandparents and our siblings lost a life that was going to be amazing.

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

Stop reading if you're not pregnant yet with your next child, of if you're in your pregnancy and are freaking out all the time like we were.  Stop reading if you're me a year ago and I couldn't stand to read about the next, bright part of people's lives.

I'm on a futon in the living room and Puck is digging his furry, feline head under the folds of my sleeping bag.  The detritus of baby surrounds me.  In what used to be my bedroom: my wife, the other cats, my second son Zephyr, all sleeping & feeding & crying & pooping as babies do, and sometimes moms and kitties, too.

I stopped believing in hope and now it's my full-time fucking job.  I hope he's okay.  I hope that rash is no big deal.  I hope he's not crying because he's deathly ill.  I hope I get to see him more tomorrow.

I have to hope, and I've trained myself to stop that silliness and deal instead with exactly is right in front of me.  Except now, what is right in front of me, in my arms, is a son I feared to hope for.

The gurgle is in my heart, now.  The gurgle is in my brain when I see Zeph's little-old-man-new face staring back at me, absurdly alive and utterly clueless to how powerful he is. He has annihilated time.  It reminds me of when we first lost Silas and day or night meant nothing at all.

It is so much better now.

I didn't want to write this part.  Lu thought it was necessary, though.  She wanted people to know that there is still always hope of some kind.  We were the worst kind of unlucky to lose our son Silas, but we are profoundly fortunate to have Zeph with us now.  She never let go of that possibility while I continued to prepare for exactly what was, every day, over and over again, no matter how shitty.

She's in there right now using her breasts to feed and grow our son.  I'm out here on the futon writing about our insanely brutal and beautiful and sad and hilarious lives as Airbag blasts from little speakers, my toes tucked into the sleeping bag and Chumby our cat curled up on the couch.  I will sleep tonight completely enraptured by the endless darkness of Silas's absence and the now-ever-present force that is my other son Zephyr who is brilliantly alive and utterly confounding.  How do we do this now?  How does anyone?

Okay, I hear tears.  Maybe time for a diaper change or midnight dance-party.  Different day, better shit.

What physical aspects of your life changed when you lost your child?  What have you reclaimed since then, what is forever altered?  Has the lack of physical connection with your lost child forced you to find other routes to feeling close to them?  What are they?  What else do you want and how will you get it? 

courtesy, common?

I drive to work about the same time every day. Most of the time the soundtrack for that is news. I drive home at all different times, depending on how many students came by that day, what else I have on my plate, where else I have to be, and how soon. And so the soundtrack for the drive home is a mish-mash. Some days, it's mp3s of the stuff I downloaded over the weekend, some days-- CDs. But some days, depending on what I stumble upon when the car comes back to life, it's radio again.

And this is how sometime last week I was introduced to Philip Galanes, who, as I found out that day, writes the advice column Social Qs for the Sunday edition of NYTimes, and now has a book out by the same name. I started driving part way through his conversation with the Fresh Air host Terry Gross, and stayed on the channel. There was something very human and kind about Mr. Galanes, and it made me think that the program wouldn't be a bad thing to listen to all the way home.

They spent some time on peculiarities of the modern, technology-enabled world, touched upon dinner party etiquette, but by the time I was flying down the highway, the conversation turned very personal. First, about Mr. Galanes's childhood as a family "fixer," and then, tragically, to the death of Mr. Galanes's father, by his own hand. Deep, personal pain. Feeling responsible, as many suicide survivors do, but in his case because he was, you know, the family fixer. And, for years, not something he could talk about honestly. Eventually, he could.

So what do you think happens when someone answers a question about, say what his parents do by saying actually, my father committed suicide when I was 23?

"One of the shocking things about suicide too is that people feel very entitled to start asking really wildly inappropriate questions. Like the first thing generally people will say to you after you say that your father killed himself, is that they'll go oh, how did he do it? They might say oh, I'm sorry or oh, that must be terrible for you. Then they'll go how, how did he do it? And I don't know if that's some macabre thing coming up or what it is."

I wish I could say I was shocked. But I am not. Not even a little. The thing is, I learned, people feel very entitled to start asking really wildly inappropriate questions and to start dispensing really wildly inappropriate advice in all sorts of situations. Like, to take a completely random example, when you answer a question about children in a way that does not leave out your dead one(s).

What I did find a little surprising, what I am still mulling over, and why I am writing this now, is Mr. Galanes's response to the follow up question on what makes for an appropriate answer to a wildly inappropriate question like this. Because his response, and, perhaps more importantly, the spirit of his response, is much-much kinder than I am inclined to be to the wildly inappropriate. His response is meant not just for suicide survivors, but also for those encountering other kinds of drive-bys. A common ones, in his own description, are the various incarnations of the fertility-presuming questions aimed at quietly and desperately infertile. But there are also the ones aimed at conspicuously single, and, I imagine, many other kinds of vulnerable.

So in his own words: "I think the best response that I have been able to come up with is "Why do you ask?" Because it delivers the question back to someone in a way that lets them see it, hopefully, for how inappropriate and - I don't want to judge the people. [...] Most people are just thoughtless. They didn't mean to hurt your feelings. So by saying why do you ask, you give them an opportunity to really consider, wow, that really was pretty inappropriate."

And later: "But no, but you're quite right. There are lots of ways. It's also entirely appropriate to say gosh, I'd rather not discuss that. But I find the less that my response is like a slap across their face, the more I feel the possibility is for the two of us to go on and have a nice conversation that isn't going to be about how my dad killed himself or why."

And I think it is this presumptive kindness that really gets me. Because I certainly see what he is saying, but I can't say that I am fully on board. Or maybe I am not fully on board in case of the kind of loss common to us here. Because here's how I look at this. The person doing the asking, the wildly inappropriate one, is not the one who needs kindness. Or not the one who needs it more. The person whose heart is, again, ripped open by the question, that's the person in need of tenderness and kindness.

What I think Mr. Galanes is doing by committing to this kind of a soft and gentle mirror-holding, is accepting onto himself the extra responsibility for the feelings of the offender. I find the kindness of such an impulse commendable, but more than that, I find the imposition of it unfair. That is, I rebel against accepting his advice as the norm for myself or anyone else. The fine line I am willing to walk here is that I am ok with any individual who voluntarily decides to go that way, but I am firmly against deciding as a society that this should be the norm of behavior for the offended party in the conversation. Because see, this imposition of self-restraint then normalizes the wildly inappropriate, makes it an ok thing to ask, and assumes that the burden of not letting the conversation escalate rests on the already vulnerable.

I've said from almost the very beginning that I do not so much mind the random questions as I mind the clueless and hurtful reactions to my answers. It is the truth of our society that people ask personal questions, some of them shrouded in wording that implies judgement about your choices, and some of them worded entirely neutrally. So people ask. But I find it cowardly and unacceptable to only be prepared for the shiny happy answers. Mr. Galanes says that people blurt out stupid stuff because they are unprepared, because you in your answer have "just laid something unexpected down." It may be unexpected, but it is not outside the range of human experience. And that is what upsets me about the wildly inappropriate-- they are ready to carry on a long and fluffy conversation when your responses fit their expected pattern, but God forbid you should bring in a real painful truth and you can almost hear the circuits in their brains frying, resistors popping like popcorn.

Angry? Who, me? Actually, I prefer to think of it as indignant. I think the difference is that Mr. Golanes wants to fix things, and I want things to be fair. Not, you know, in the cosmic sense-- I know that's impossible, as attested to by the very need for this site to exist, by the abundance of the RE offices, and by the suicide survivor networks, just to name a few,--  but in an everyday sense. In the sense where the courtesy Mr. Golanes wants to show the wildly inappropriate, the courtesy he feels obligated to show them, I want them to feel obligated to show it to us. If the courtesy is to be common, I want it to be well and truly common.

To give Mr. Galanes his very deserved due, he doesn't call for the vulnerable to always show the soft spot. He himself lied for years about how his father died, trying on this illness and that. He appreciates that the vulnerable's need for safety, as his was during those years, and as the woman in the midst of a serious cancer relapse whom he very recently provided with a dispensation to lie until she's ready, that this need is more important that the other's need or want to know. But maybe there are some soft spots that burn more painfully when hidden. After all, when Mr. Galanes lied about how his father died nobody around was presuming that he didn't have a father or that he didn't love his father. In contrast, a desperately infertile woman, years into treatment, might want to expose her needle-poked flesh to wipe that smug smile off the face of the presumptuous fool who is going on about how she must enjoy the opportunity she has to sleep in on weekends. And a bereaved parent might, just might, want to point out that the hardest decision a parent has to make is really not the one about whether to spend the money on that expensive toy your kid really wants. I am just saying.

The thing is, I have, on occasion, myself used the relatively gentle "why do you ask?" And at other times, I have been far less kind. As I say above, it is the mandate of always picking choice (a) that I shirk. And maybe, as Mr. Golanes suggests, the difference is in whether I want to have the conversation continue peacefully or whether I want to explode the biggest bomb in the middle of the room. I don't like scenes. I do not enjoy scenes. And for certain I do not want to use my son as a weapon. But there are ways to be quietly dignified and yet to deliver a memorable punch. I reserve those mostly for repeat offenders, but I have delivered those too. The way I see it, the wildly inappropriate has already hurt me. How I react to it will not make the hurt less. But maybe, if I am memorable, it will make it less likely that the person will go on in the same vein. Maybe, just maybe, I will help spare another bereaved parent down the road the tender mercies of this particular wildly inappropriate person. Maybe.

So what are you-- a fixer, a justice-seeker, something entirely different? And where do you come down on this? How should we respond? How have you responded?

Beautiful Empty

It was a Saturday, 8:30 in the morning. I was humming down Orange Grove Boulevard on one of those rare, glorious Los Angeles overcast days. A gray fog hung around lazily while the landscape seemed to be collectively exhaling, on account of the sunless sky, which normally burns and glares and sears until this desert landscape is charred brown. Trees drooped in thanks, flowers lay still, doing their part to not jinx the unfamiliar sky. Even the sidewalks and streets were near empty, as if work and play and errands and coffee were traded in for longer sleep in darker rooms.

I was alone. My mind seemed to match the stillness with one of those rare states of near nothingness, where thoughts and ideas and people and conversations and to-do lists and worry are replaced with what is only visible to the immediate eye. Red light. Green light. Trees, houses, fence. Turn left. I relished the unusual clearness of mind.

It was in this peaceful state, this nothingness, when Margot suddenly rushed up to the surface. Her being, her name, the idea of her seems to have taken up residence in my pores and under my skin and in all of the recesses of my mind that I never knew existed. Out of all these places, she rose up, speaking to me in this nothingness. But this particular morning, it was just her.

Her. Margot. Without everything else.

There weren’t any questions about the future state of our emotions. Will we be happy again? How happy? Will our grief continue to evolve? Will the sadness ever really feel lighter?  What happens if she starts slipping away? There weren’t any thoughts about friends who have let us down or those who have been there. There wasn’t any anger. There weren’t any concerns about impending situations of social anxiety. There weren’t any dark thoughts about her death and cremation. Or frightened memories of the hospital and almost losing another life. There wasn’t any confusion over the philosophical questions of life that have resurfaced. There wasn’t any anxiety over the possibility of future children or losing the living one we still have. There wasn’t any jealousy over the happy and innocent families that took their babies home. There wasn’t any hurt over insensitive comments or those who diminish or ignore our heartache. I was free of disappointment and depression and regret.  In this moment, it was just my Margot, in the purest form of missing, without all the baggage that usually clouds up her absence. It was, perhaps, the first time the missing held me completely captured since the first time I held her in a darkened hospital room.

I pulled over and cried out for her as I did in the hospital. I screamed her name. I spoke to her as a Father speaks to his children. The brokenness was as raw as ever, yet it left me hanging delicately in a state of calm. The missing felt real, felt good even.

How nice would it be if grief were this tangible, this straightforward? How convenient to simply miss our kids off and on through the days and years, not having to face the other elements that come with grief?

Because so much of the time it’s not just her anymore. Somewhere along this lonely path, the worries and jealousy and concerns and confusion and hurt and anxiety and over analyzing and constant evaluating have ganged up, in an organized mob attempt to distract from the very core of what matters.

My daughter, my second child, the one who should be pulling ornaments off the tree, is missing. And, well, I simply miss her.

Are you able to simply miss your own children, or do you feel the weight of other elements of your grief? Does the simplicity of the missing grow over time, or do all of the other elements to grief get stronger?

The Sound and the Fury

I am a sharp and pointed thing. My tongue is quickly poison-painted. Fighting talk? My words are weapons, and I’ve used them to wound. There is a cruel satisfaction in leaving a barb in an opponent’s tender places.

I am not proud of this. But it is my truth.

photo by sedeer

Over time, I have learned to wrap my rage in cooling sheets and camomile. Now I am a real-life-card-carrying-grown-up-woman-lady-with-responsibilities I practice caution. Hurting people is not Nice, you see. It is Unkind. I want to be loving and nurturing and other good things. I believe in Kind. ‘Kind,’ I say to my living children, ‘be Kind.’ That’s the most important thing, to be Kind.

But sometimes all becomes hot. My rage bubbles and boils. Kind evaporates rapidly, and all that’s left is the salty residue of Mean. And that’s when I unleash the wicked tongue. And it is merciless.

I often thought that grief would make me good. But it has just made me more of who I am. Damn it.

I see a counsellor. We talk about the Mean. We talk about the way that seems to be the essence of me when all the rest is boiled away. We talk about a special, stop-shouting-at-hapless-acquaintances strategy.

‘TRY THIS’ she says (she is very loud my counsellor)

‘WHEN SOMEONE DOES SOMETHING THAT YOU FIND UNACCEPTABLE, THINK “ASSERTIVE” NOT “AGGRESSIVE.” YOU SIMPLY FRAME IT LIKE THIS:

‘WHEN YOU.... ‘(insert description of provocative behaviour. Note I said  description. Not judgement)

‘I FEEL .....’ (insert feeling. It is OK to have feelings. It is OK to name your feelings. But do not blame.)

‘NEXT TIME I WOULD PREFER THAT YOU....’ (give a suggestion or a solution. Something constructive.)

‘Thank you so much’ I say ‘What a delightful and pleasant way to interact. That would be a better way to deal with my rage. I shall try it as soon as I am given the opportunity.’

And so, I do. And in situations that do not involve dead babies, I promise you I am being the MOST constructive, assertive, shiny-eyed Kind person I can be.

But then...

But then...

Then all becomes hot. My rage bubbles and boils. Kind evaporates rapidly and all that’s left is the salty residue of Mean.

‘WHEN YOU...  appropriate someone else’s dead baby tragedy to illustrate what a heroic, selfless paragon of virtue you are for taking round a frozen lasagne once and then never speaking to them again...’ (Judgmental, moi?)

‘I FEEL... like stabbing this pencil up your nose and into your brain.’ (What? I’m just naming my feelings.)

‘NEXT TIME I WOULD PREFER THAT YOU... did not bring the worst of yourself to dance all over the most painful part of my heart, but rather fucked off and bothered someone else with your solipsism.’ (Well... it IS a suggestion. They don’t HAVE to do it.’)

And there I am. Mad mama of a lost baby. Raging, raging at an unfair world where lasagne doesn’t make it better and all the assertiveness training I could have won’t take that that salty Mean away.

Are you angry in your grief? Do you ever boil over, or does your rage simmer quietly? What soothes your temper, and where can I get some?

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?