in search of a happier medium
The sea rises, the light fails, lovers cling to each other, and children cling to us. The moment we cease to hold each other, the moment we break faith with one another, the sea engulfs us and the light goes out.
—james baldwin
What is it about the loss of a baby that either a) brings all the assholes out of the woodwork, or b) inspires ordinarily sensible people say asshole-like things?
I have a vested interest and will therefore be the source of your enlightenment a voice intones without speaking.
Then, paraphrased:
Look at Family A, the ones with the daughter who lives in the bubble. Or Family B with all that divorce and the alcoholic and the foreclosure. Or Family C with the boy who is disabled.
You’re not the only one in the world who hurts. Stop dwelling, stop spilling your guts on the internet. Think of all the people around you who need you to be uplifting. Be like so-and-so. She’s always so positive.
All of the above implies that I am a falling-down mess, a naval-gazing embarrassment despite being a mother and a moneymaker and some reasonable facsimile of a wife, at least when I’m not wearing those revolting yellow sweatpants.
I sit ball-gagged with graciousness, almost too confused to be wounded. From where I sit, you see, I am doing well. I’m fiercely proud of myself and my family, a year ago and today. Made to live through it again I would choose to be, do, say and feel the very same without hesitation.
I’ve never been so expansive of a woman as I had to be last year. It was messy, but I swam in it. I wore every aspect of it like a bloody sandwich board around my neck because that’s just what I had to do.
For two months I pumped and cuddled, loving both of those boys regardless of speculative outcomes. I forced myself to stare unblinking at the horror until I could see the beauty underneath all the wires and tubes and bleeping because dammit, if one or both of them were to die, I wanted to remember their hearts, their eyes, their soft skin and wee grunts. Not just machines and misfortune.
Then I went home and rolled around on the floor with my two-year-old, tickled, grilled cheese, daisy-chained, story-read. Then to bed and up again in the morning for my NICU commute, indoctrinating myself to the live version of Bob Marley’s War because it was the only music I could tolerate—a message of hope and hopelessness on such a vast scale that mine might seem manageably provincial in comparison.
Then those double doors would swing open and I’d step across the threshold, the lone good guy at the wild west saloon, guns at my hip, death-defiant. Don’t mess with me. Don’t you fucking dare.
Despite all that, the occasional message persists, a year later: You’re making everyone uncomfortable. Who do you think you are, anyway? Do you think you’re special because of all of this?
What’s almost worse, aside from the logistical nightmare of faking one’s own alien abduction? The flip side: the silence.
What a crummy spring we’re having... too much rain, eh? he mumbles as he fidgets and stares at his shoes. I know he knows. He knows I know he knows. He stands in front of a wrinkled, grey, twenty-foot trunk that spits peanuts against his forehead with a shwuck! schwuck! schwuck! as he shrugs elephant? what elephant?
I’m being considerate, the silent majority congratulates itself. Best not mention it. Easier for everyone.
Chickenshit, I say to the latter. Chickenshit with whip cream and a cherry on top.
And in the face of the former—the forcible enlightenment barbershop chorus—I fantasize sticking up for myself without regard for friction.
I’ll do it in my dreams, if nowhere else. In my magical fairyland where the sea rises, the light fails and we hold each other, keep faith with one another, lest the sea engulfs us and the light goes out.
+++++
Through the weekend as it sat on the backburner, this post overheated until it stuck to the bottom, blackened and tough, tainting the rest of my brain with a faintly ruined flavour.
We are a prickly bunch, are we not?
I fish for evidence, cling to outrage. I walk through the world with my arms folded across my chest, daring people to prove me right. And when they act human—when I trigger their own demons and nightmares and they prickle at me for it—I hold it against them. Or when they naturally recoil from deadbaby cooties, as I would have done myself, I scorn them for it.
It's exhausting.
I need Zen and the Art of Spirit-Baby Motherhood to figure out how to be patient with the universe. To redirect misspent energy. To help those who make tentative steps feel welcome standing beside me, even though their attempts may not always be graceful. To be sure of my own truths. To forgive.
A year out, if you've reached it yet, where did you stand?
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You are plugged in by the pain, direct wiring and I feel so inadequate to the tsunami that you are surviving in. I have admiration and awe for your strength and courage just to perform the apparently ordinary in that context.Thanks for trying to be patient! While I have not had my child die I have to work hard to be generous with people's awkwardness around her disability so that struggle resonates for me. Ironically, what has helped me is recognizing that I too can be so ungraceful and frankly inadvertantly cruel when faced with a situation beyond my own experience. However, the internet is full of trolls and deliberately insensitive idiots and that is a different story where outrage is completely appropriate!
My mantra in 1991 was "consider the source". I can't tell you how old that got...but it was helpful...for me. This is a powerful post and what was said...needed to be said.
Oh I just want to slug anyone, inside the computer or standing face to face with you, for offering you anything less than understanding and recognition for it all. Man, this has been a damn hard, unexptected, emotional and exhausting road for you - for all of you. * I ran into that woman I told you about, on your blog, who lost her 2-year old in January after two years of struggling to keep his heart defect from taking his life. This woman used to be so upbeat and smiley; she was a common 'jokester,' even to casual passersby at the dog-park. Yesterday, at the mall fountain, she approached me with a friend we both know - she's here in town visiting for the first time since Luke died - and while she is still beautiful, while she looks all put together and pretty, there is an edge to her now, an obvious one if you know her; and as our conversation went there, because of course I asked how she's been holding up, her tears were on the surface, as though they sit there all the time, waiting to bubble over. My heart just opened up at the thought of it all, how she carries this weight with her, of her son's loss, every minute of the day. It's been six months. * She got a tattoo with his name on it, on her shoulder; it's perfect. I love the idea - not sure if you are into that kind of thing, Kate, but C said it helped her a lot, tp permanently carry him with her once again...XO
you've said so much here. I agree it's all exhausting. a year out I was headed to grief counseling. with a huge burden to bear. wishing you well.
Kate, through your writing we have seen your world on a roller coaster. The before, the pregnancy, the calm before the storm... You showed us these beautiful miracles-two lives that I will never know, but that have impacted my thoughts...
Motherhood in itself is its own club, to bare the belly is a right of passage, the scars left afterwards are merely reminders... But you have shown me a light to something I never imagined-the worst case scenario... You've guided us through your chaos, through your turmoil, through your grief. You've exposed your wounds and still have so much fight left in you. You give me hope-to know that if I, or any other woman I know had to experience your same journey-that there are still days worth living, still fights worth fighting, that there are people out there that will be your net.
I know you don't want to hear that-that you'd rather have your three babes safely in your arms. That it'd be easier to write about their new experiences than your experiences to deal with the tragedy...
It blows my mind that people could be so insensitive, that people would compare their pain. That they try to out-do, that it's their only way to tell you to get up and get over it. who the fuck do they think they are?
What I'm trying to get at-
Your grace, your truth, your words... Your strength and ability to open your wounds-even with all the salt. You're a healer, an inspiration, and a wonderful mama. A mama, to three very special boys-who all have their purpose in this world...
Thank you. for fighting the fight.
Seeing a couple of you here that I know face different kinds of motherhoods - this reminded me to say thank you, and welcome. I've been meaning for the longest time to write a bit of a housekeeping post to remind our community here that all comments are appreciated and received, no matter if you've lost a baby or not.
All the other voices that chime in are our friends and sisters, and we need your perspective too, as we do in life. so thanks for being here too.
xo
Kate,
all I can say is, I get every word. But only you can write it with your grace.
So much truth and raw honesty in your post. Definitely struck a cord. I'm about 18 months out, and I don't know where I'm at. A new mother (single, my age, 5 kids, different dads, not married) comes with her new baby girl who she just rolled her eyes at about having to feed, and nursed her next to me in the nursery (I was in there with my 3yr old).
It's a small nursery. It was mother's day, to make it all better. She starts going on and on about how having a baby girl is the best thing ever (not to me, but another woman in there)
I had to leave. Some days I think I've got it all together and am doing so well, so far in my grief process. And other days, like that day, I feel like a wild beast who wants to just...do wild, awful beast-like things, and make these dummies GET it. Make them have compassion and understanding, and not this self-important insensitivity.
So where am I? I am here. And somedays, that's all I've really got.
*hugs*
JEN
ooh, a Zen and the Art would be fabulous. write that, will ya?
a year out i was newly immersed in the kind of motherhood that involves a live baby, and was busily trying to pass as normal, trying to heal. but the way that people seemed to treat my living child as an "all better now" really hurt me and angered me...because it felt as though it was more comfortable for them brushed under the carpet, as if Finn's disappearance and invisibility were more pleasant for them than my reality of juggling loss with joy, learning to balance.
i do think people who utterly avoid all mention of other people's sorrows, whatever those are, are chickenshits. i understand the discomfort and uncertainty, and i experience it myself, but i do scorn complete avoidance and those who practice it. yes, we're prickly...hurting people are. yes, there's no right thing to do that will make it all okay. but to me the onus is always on those who are not currently suffering to be a little braver, a little more willing to weather someone's hurt in hopes of reaching out and offering comfort.
If your house burns down, it's not for me to say "thank god you have your lives." It's not for me to say "Well, at least they caught it early," or "I've seen people get by on one leg. At least you have your sight."
If YOU want to talk about those comparisons, because it helps you define the parameters of your grief and pain, I will listen with you. But it's not for me to judge how you define them, and if you change your mind about it all tomorrow.
So I wish, wish, wish, people would quit setting our parameters for us, judging for us, reminding us for the boundaries. They have no boundaries. It's not for them say.
I'm so depressed and tired of these people too, Kate. I keep thinking the next time I'm just going to blow and let them know, but I never do. I think I'm always so shocked people can be so heartless and cruel.
I'm wondering if we need a GITW line of t-shirts: "It's not about you," "check your shit at the door," and "Don't have a horse in this race? Then DON'T JUDGE." Beautiful post. It hurts on a lot of levels to read this.
I think a year in, my mantra went something like ...'it's ok if they want to pretend he didn't exist...it's their issue...'
I was angry too but I think I was in the middle of learning to accept the way people are, uncomfortable, unforgiving and judgemental to those who are open to their grief. I was also getting very good at masking my grief to the unforgiving mass and would only unmask for a few trusted friends.
Everything you write is so true. Like looking into my own heart
I'm not a year out, not even a quarter of it yet, but I've had my share of the insensitivity and the chickenshit.
I visited my work a few weeks ago while still debating my return. My (former) boss made up my mind for me, as I listed to her tell me, repeatedly, that what had happened to us "in the great scheme of things" was really not that bad, how she could think of many worse lots in life, and how I was "lucky". What made me even more furious was that I let her say it. I even nodded at times. I can't believe I did that. I can't believe I sat there and listened to this lecture and not yelled and screamed that she was so, so wrong.
So, we're forced to deal with this, and then there are those that don't mention anything and make small talk hoping you won't mention it either.
Thanks for the moving post. In a frustrating way it's helpful to know others suffer the same hurdles. Beautiful writing, BTW.
about a year out, a person at work found herself alone with me in the restroom and uncomfortably fumbled her way through a conversation about how i was and how her sister had this and that happen to her and then said "maybe some people just weren't meant to have children". i said out loud in my most snarky voice "hm, that sure is an interesting thing to say" and left. i was proud that i actually said something instead of smiling and nodding my way thru their discomfort, but i was most proud of walking away and not crying, instead laughing and thinking "holy shit that is the dumbest thing i have heard yet!". and honestly at this point, one and a half years out, i am kindof arming myself with snarky zinger comebacks for more people who say dumb crap. i am finding strength through mean streaks, is that weird? im tired of dealing with peoples discomfort and i want to own my mess, not feel shame for it.
also, thanks as always for putting into words exactly how it feels.
Grief freaks people out...my dh held it all in and avoided all his friends when his dad died.
It messed him up in ways he didn't even comprehend.
When his mom died last year...he was more open to sharing the pain..but people are horrified that he has lost BOTH is parents...they were only in their 60's and we Gen x'ers are not prepared for that sort of thing really.
LUMP on Scotts death a few months later and that is some heavy burden...you feel it on him..like a cloak of death.
Neighbours avoid us now.
They just watch and gossip about us....
Grief is all around us yet yes..we must play with our kids and joke around and still live our lives....
It has been 7 months since we lost Scott and 10 months since dh lost his mom.
I'm not a year out either, just a little over three months from a termination, but I can say that the chickenshit and the silent annoy me the most. What is wrong with these people who think after some small amount of time, you're all back to normal--wtf is normal anyway? So, to deal with all, I run a lot. My husband helps me when I get mad by telling me to try and focus on me and us, not them, and just take a deep breath and feel my own good energy. It actually works. I love him for that (but don't think he's some kind of strange saint b/c believe me, a day or so later, I'm doing the exact same thing for him). Anyway, that's how we're doing it--how we find ourselves pushed away from a peaceful center and struggling to get back to it, day after day, after day.
Beautiful post, Kate.
Not a year out yet, but I have an event tonight where I see coworkers that I haven't seen since William died almost 8 months ago. I hope for silent chickenshitness, but I know tomorrow morning I will be sad that none of them said anything.
Double edge sword, I guess. Silence in golden, especially when beer is involved.
You know what I think of the chickenshits. I try to be indifferent to them, not give them the energy that is in my anger, but I do not, as a rule, succeed. The thing that annoys me the most is that they get to then congratulate themselves on their own sensitivity in not bringing it up. Chickenshits, you know...
The ones with the life lessons I find easier to deal with, because I am, in fact, and by any measure allowed to respond. And so I do. Because damn. Snark. Never leave home without it.
I'm not a year out yet, and I certainly have my major ups and downs. I also have my list of best terrible things people have said to me:
"After the rain, the rainbow"
"You're young, you can still have another"
"Just think, if you'd been further along, that baby might have survived" (The person who said this to me said it at my daughter's funeral. My best friend had her back to her, but heard everything. The comical look of horror on my friend's face was so hysterical I was able to respond very graciously to this incredibly insensitive comment.)
"Better luck next time" (Also spoken at my daughter's funeral - accompanied by a friendly little chuck on the shoulder.)
"You'll get over this" (My personal favorite, spoken to me less than a week after I had returned to work after my maternity leave. My favorite because I assure you, I did not take this lying down!)
But I agree with many of you here - the worst are the people who look away, or pretend she didn't exist. One woman came up to me not too long after I delivered, and said, "you're skinny! You had your baby!" When I told her what happened, she mumbled something apologetic and very obviously spent the rest of my husband's tennis tournament deliberately avoiding me.
At a year out, I was angry...angry at the world for forgetting my son, angry that my surviving twin was no longer a "twin" to the outside world, and angry that no one ever mentioned his brother’s name. I was also very angry at myself for not protecting him and being able to get him here healthy and safe.
The hardest thing to hear was comments made from my own family like, "At lease you have another baby.”, as if one replaced the other. I also got the usual crap of "you wouldn't want him to have to live this way". When did they become god and get to choose how my child should live. I was ready for the challenges of his medical problems. They are welcome in the face of watching him die.
My brother and sister in law had twins last Friday. By the way my family acted, you would never have known that I gave birth in that same hospital to my twin boys 20 months ago. I didn’t want to take away from their happiness, but it so hard to smile and act as if all is ok. The elephant just keeps getting larger in the room.
Thank you for the post. All so true.
ummm.... here's my advice... ew-scray em-thay.
the end. it's YOUR blog. YOUR pain, YOUR joy, YOUR life.
think of all the lives you've touched. think of all the women who have identified with all of you. because of your blog and her blog and her blog and this blog.
people say the dumbest stuff when they don't know what to say. maybe they were trying to help.
screw them.
"I fantasize sticking up for myself without regard for friction."
I do that all the time. I mean really tear them apart in my daydreams. I picture myself standing directly in front of them with a megaphone right in their faces screaming my own defense.
In addition to the "You're too sad" or "Nothing ever happened la la la" people, I have another group telling me how to feel: If I look happy, or laugh out loud, or smile or anything of the sort, these people say "How can she be totally fine? What's wrong with her? She must be heartless or completely insane."
People begrudge me of my tears AND my smiles, as rare as they are. And I haven't gotten to a place where I can shrug off their criticism. I just scream at them loudly with my thoughts, and wish for a day when people can be comfortable enough with themselves to just let me feel the only way I can.
After a year or perhaps a little less, it was almost as though a spigot had been turned off and I stopped actively grieving. Not that I wasn't sad or that I didn't have regrets, but the sharpest hurts seemed to vanish.
I dunno, guys. I guess everyone is different (yeah, that cliche again) but I appreciate the silence. At this point, I really don't want to be reminded of all that I went through. Maybe people feel like they're being "considerate" or "understanding" when they bring it up. But it hurts me to have to think of something appropriate to say in response.
people say stupid things and often open their mouth without regard to what they allow to stream out of it. i am sorry that you even have to expend energy on digesting it. if they cant be proud of you - i will, i think we all are proud of you here in this etherworld!
beautiful post!
Kate, fantastic post.
6 years out for me, and I often still look for ways to say William's name or tell people that there was a first brilliantly red-headed boy before his two younger brothers came along. Do people still respond with discomfort and fear...yup (not always, but usually).
I have an aunt who did up a family tree a few years ago - she purposely chose to leave William off it. Her reason...she didn't want to upset me by listing him as born and dead...wtf!! I crave anything with his name on it. I need him to be talked about and remembered. Sadly, most of my family didn't meet him, so what they remember is that he died, but isn't that better than pretending he just didn't live at all! 'Cuz if you died, then you must have also lived.
My dad is also regularly quoted as saying he has 4 (instead of correctly saying 5) grandchildren. And when asked if he is getting any more, his standard response is "they tell me that's all I'm going to be given". Nice one.
It isn't always the comments of strangers that make anger and sadness swell up inside of me.
Denise
I'm not a year out (only 5 months), but had a stupid comment today that I just have to share somewhere.
My daughter was a still born at term, with no known medical cause. I was telling a co-worker that the doctor said to think of her death as SIDS that happened before she was born. My co-worker's response, "Oh, SIDS. Wouldn't that be awful to have your baby at home for a month and then have her die?"
Um...yes...but so is birthing a dead baby, and never getting to take her home...and that's the pain that I know...
How in the world are you supposed to respond to a person like this?!?
Kate I've signed myself up for therapy just for surviving the NICU so I have nothing but admiration for the way you choose to handle your grief.
People avoid us too, just because Julia is ill and it hurts, though I understand it is human nature and it makes me think of all of the babylost mamas and how it wrong it is for your children to not be recognised. Reading all of you has made me speak out more, made me talk more often to my friend about her son who died and generally be more supportive of people who I know want to talk about their lost babies.
thanks as always for writing so beautifully.
A year out I was so tired of it all. I was so tired of repeating myself...yes we had the baby but he didn''t make it...so tired of the awkwardness, the silence, the shock. You said it perfectly. Everyone has their own journey but 4 years out..I am in a calmer place most of the time. Finding this site has been a welcome chance to mull things over and revisit Matty's life and death with some time passed. The edges do soften...the comments aren't so jarring eventually. Also...I say bring on the friction if you want to. Maybe they will learn not to be so stupid when it comes to people who are in pain. Thank you so much for sharing your heart with us.
10 years on, lots of things don't hurt at all, and then one day someone will say something stupid, and it will hurt all over again.
It gets better, but it never gets to be a perfect armour, does it?
We are half a year into learning about our child's rare syndrome. We haven't told our family yet (we are far away so this is do-able). I sit here in fear of the shitty things people say. I know it will sting. I know it will tear my heart. I know it will make me so angry I will see black spots. The worst is that no matter what I say over and over and over, they will never understand and so I am alone. Period. I am hoping to hide out until I can build up enough strength to deal with 'them' and not lose it when they utter puke-worthy things. No one will be helpful because as someone else put it--they are not in the same race-- and as I see it, their words are useless. I'd prefer silence. But its not their fault. I was them prior to this. I love my child and yes, I see my child every day. But every day I am freshly reminded of what is and the shit and sorrow and anger and pure hell that is to come as this thing unfolds and my child grows more aware. Every morning, I feel like retching.
Oh, M. I'm so sorry... sigh. I can't believe with everything else you have to worry about a lack of understanding. That just sucks. Keep your bubble as long as you can, and your distance too...
I'm so far behind, no one will ever see this comment, but....
I had forgotten until I got all the way down to M.'s comment that I used to worry about our Biscuit being bright enough to understand that he's mentally retarded. What with MR being part of the definition of Down syndrome there's no escaping it. But do I hope that he is as bright as bright can be and then realizes there are heights he cannot reach, or do I hope that he is less bright and so less cognizant of his limits? I forgot to continue torturing myself with that one. ;-)