I’ve tried to start listening to more podcasts in the wake of Serial, but it’s hard because many of them hit close to home in an upsetting way. I listened to Radiolab’s show on value, and the value of life, and my thoughts were exactly like those described here by another babyloss mom… If I had done a show on the same topic, I would have asked much different questions, and to different people. Radiolab recently did a segment on the semantics of PTSD, during which it seemed clear that the people speculating and debating about trauma had little of their own personal experience with major trauma.

On the other hand, there have been many stories shared by survivors of the 2004 tsunami. Their experiences resonated strongly with me at the time of the tsunami; in fact, watching the coverage on TV during winter break from college was a main factor in inspiring me to pursue medical school. Now, I really know what they’re talking about. The author of Wave talks about wondering whether her whole past was even real. I’ve definitely been there. I still go there, sometimes.

Maybe I’m not quite ready for podcasts. I’m not ready for people saying anything at any time, without taking what I’ve been through into account. My thoughts and memories still aren’t solid enough yet, so I get confused and thrown off (in a way that I didn’t know was possible until the moment my son died and I had to leave his body at one hospital so I could go back to the other hospital, because I still had an open wound, a catheter, a blood count so low I couldn’t even sit up and pain so severe that I should have been on an epidural PCA instead of riding down the highway…).

Sometimes I want to rejoin the rest of the world and speculate impersonally about the monetary value of life and the semantics of PTSD and the normalcy of having children around.

But that’s not where I am. That’s not who I am right now. I don’t know how much that will change, and how much of my “new normal” is here to stay. It’s a scary and painful transition. There’s dead skin to slough off in all sorts of unexpected places, and the newly-cleared regions are so raw. I know I just used a snake analogy, but what I really feel like is e.e. cumming’s newlY born horse, only I’ve been thrust into an unwelcoming reality rather than a welcoming dream. I’m also a breathing, growing silence who is someone… someone new and unknown.

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We’ve been travelling. I’ve been listening to a lot of radio and podcasts. Often, the stories i hear bring me to think about different aspects of grief. Sometimes, they allow me to explore new facets of grief, to better understand the processes i am going through. So here are a few recent radio-induced thoughts.

Radiolab, a show i enjoy despite some of its problematic aspects (i.e. it’s is very white/western- and male-centered) tackled a complicated topic this week. Its team attempted to “put a price on the priceless”, including human life. In a conversation about what we collectively should spend on keeping people alive with the help of high-end drugs, they ask what is a month of human life is worth. How much is it ok to spend to extend someone’s life for a year? They discuss these questions with different specialists but also ask people on the street…

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“Do you have any kids?”, “How many kids do you have?”, “How old are your kids?”

All people who have lost children struggle with the normal conversation-making questions about families and family structures. Our stories just don’t fit into that conversation.

Overhearing others going through this discussion in a smooth, unencumbered manner has been heart-wrenching for me. I know that I’ll never have that easiness, that normality.

It turns out that coming up with a response to those questions, one that feels peaceful and authentic, is a big part of the challenge of being your child’s survivor.

After several months of trial and error, I stumbled on the response that feels best to me. I just nod sadly and say,

“He died.”

That’s as honest as I can get, in a way that simply honors both Sacha and me. I don’t feel like I need to try to explain something so inexplicable, or make something so awful seem less awful than it really is. I don’t need to tell a story about angels or raindrops in the ocean: if they have a concept that fits in with their religion, they can call that up on their own. I don’t feel like I should worry excessively about making others feel awkward – I feel awkward all the time, and I’ve survived! It should be easy enough for them to say “oh, I’m sorry to hear that,” and if it isn’t, they should work on that. I don’t even feel like I need to sort through which people should hear this, and which people shouldn’t – I didn’t invent the truth, after all, I’m just living through it (sometimes a longer conversation follows, sometimes not, and that’s fine with me – I try to let that be more organic and situational, rather than driven by my own mental gymnastics).

I’m not in an emotional place to think about going through another pregnancy and childbirth. I don’t know if that’s something I’ll ever consider. But, I have often thought about a question I received constantly during pregnancy: “Is this your first?” I was asked that everywhere from the grocery store to the NICU. If I ever were to have another child (I can’t imagine making another from scratch, but maybe that will change, or maybe I’d go a different route), I picture myself simply responding “My oldest died.”

Back in August, when I began to communicate more about what I’ve been going through, I started posting on Instagram and on this blog at around the same time. Prior to that point, I really tried to minimize what I’d experienced. My thought was that it was awful enough that Sacha and I (and Amilcar, and our families) had been exposed to such a horrifying and brutal aspect of life. Why would I want to expose anyone else? But eventually I realized that I couldn’t live an authentic life if I kept myself in a little “me” box, separated from the “everyone else”, the “normal people”. I can’t be a functional person while I quarantine and dissociate my most significant experiences. I had to learn to integrate my experience into my daily life, and especially into my social interactions.

That’s what people do when they’re healing from trauma and grief, I’ve learned. They don’t “get over it”. They integrate it. Which means thinking about it, and talking about it. So people who already feel exceptionally vulnerable and wounded, have to try to open up and be trusting with their stories – even though their trust in the universe and humanity has recently been enormously violated, in ways that others really can’t begin to understand. Dude. That is hard.

Anyhow. I’ve found amazing outlets and communities both here and on Instagram (among people I know in real life who are accompanying me through this, and among other moms who have lost their precious kiddos). I keep trying to cross-post my Instagram feed to my blog, but it hasn’t worked!

If you want to look me up on Instagram, I’m @kvanarsdell (and Sacha is #sachamayu).

If you’re a babyloss mama who hasn’t checked out Instagram yet, I highly recommend it. It’s been a good place for me to go throughout the past year. During the first months after Sacha died, I spent hours looking at the beautiful pictures posted by @usinterior in attempt to calm myself down and get to sleep (I had to rapidly scroll past the pictures of baby animals, and even budding plants, because any sign of young and continuing life was so upsetting to me — luckily, there were plenty of pictures of rocks and rivers to balance out the plants and animals). Now, I’ve found all kinds of women sharing their stories of grief through pictures (usually beginning with a happy, innocent pregnancy announcement… followed by pictures of a growing belly and then, a few months later, by the horror story and the aftermath). It’s a wonderful normalizer. Seeing others who are brave enough to speak up has helped me find my own voice.

Come find me and check it out!

I’ve been influenced by Atul Gawande as much as the next young doctor. I have Complications and Better sitting on my bookshelf, and they’ve travelled with me from New York to Chicago to California, set aside in my “keeper” pile through multiple book sales and donations along the way.

His new book, Being Mortal, is about end-of-life care. It’s getting attention as one of the best books of the year, but the entire premise bites and gnaws at me. It was so clearly written by, for and about people who have a certain kind of modern life experience. People who bury their elderly parents after a long illness, and who will be buried by their own children after a long illness. I know this can’t encapsulate Gawande’s full professional experience – after all, he is a surgeon, and has been exposed to all manner of unexpected tragedy. But, as he explains, it does seem to encapsulate his personal experience. And that personal experience (and lack of experience) strongly impacts his work (even though the book is non-fiction).

For example, he writes,

“The striking thing is that if you go back to the 19th century and before, people were at risk of dying at every moment in their lives. Families were bigger because you would lose a child, commonly, sometime through childhood. Mothers would die in childbirth. Being alive was associated with a special risk of death! Now we can live our lives without really feeling our lives are fragile at all. Without feeling there are limits to what we can do.”

This makes me want to scream: I am alive today, and it is not the 19th century. You’re describing my modern-day lived experience of life as thought it were a strange relic of the past!! My son died in (very early!) childhood and I was at high risk of dying during childbirth. I know that any moment of life, from conception onward, is associated with a special risk of death. I really feel (know) that my life is fragile! I feel (know) that there are limits to what I can do!

Who are you writing about, Atul Gawande?? Who are you writing to? Who is this “we”? Your “we” has nothing to do with me or my family. This book’s ideas about what medical students know, what residents think, how doctors function, is so far removed from what my life is like, what my brain is like, what my practice of medicine is like.

This discordance makes me feel isolated, outcast and misunderstood. I know this is a book about people dying in old age. But is facing mortality through the early death of a young loved one truly such a unique experience? Is the rest of the modern world as innocent as Gawande’s treatise makes it seem? Is he just expressing humility about his own knowledge level, or have I become so different from everyone else?

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I’m about to share the romance of pregnancy in a way that might be difficult for those who are trying to conceive or suffered an early pregnancy loss… in the right moment, though, it might help facilitate the grief of those experiences? Just a warning.

Purity Ring – Fineshrine

This is my jam right now. It wasn’t written about pregnancy or motherhood, just a love song, but.. I can’t help but think that it really is about motherhood. There are intimate relationships, and then there’s the one relationship so intimate that it actually involves carrying the other person around all day within your body. We may fantasize about having that kind of intimacy with our lovers, but we can only ever truly have it with our babies.

The video has a lot of parallels to baby loss as well — loving someone who is shrouded, almost as in a dream, then discovering they cannot love you back (“turned to stone”, just like in so many fairy tales, just like in the Bible). And suddenly they’re gone, as though they’d never been there. The only trace is the physical injury, the physical change.
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“Give sorrow words; the grief that does not speak knits up the o-er wrought heart and bids it break.” ~ William Shakespeare

I love these words that Hae Min Lee’s mother gave to her grief. They speak so strongly to my own:
On this day, through a translator, Hae’s mother speaks. She tells the court about her daughter. She tells the court about a Korean proverb that says, when parents die, they’re buried in the ground, but when a child dies, you bury the child in your heart. “When I die, when I die my daughter will die with me. As long as I live, my daughter is buried in my heart.”

I’ve also enjoyed small glimpses into Adnan’s magical thinking: Could the girl he sees in a magazine really be Hae? How can Hae be dead, if her number is still in Aisha’s phone?

I still have bouts of magical thinking and bargaining. Usually, for me, it’s the very real sense that if only I can explain Sacha’s illness and death in the right way, to the right person, they will be able to save him. All I need is the right explanation, and the right person. Then I’ll have Sacha back.

It doesn’t quite register that what I need, more urgently and impossibly than anything else, is to have had those things in the right moment – both the right moment in Sacha’s particular life, and also the right moment in the progress of medical development (those two moments may have barely coincided… but more likely, they missed one another by a few years). I know I can’t mix and match my timelines, the way that Jay does. Not in real life. But sometimes, I forget.

I work with an enormous group of people and there’s always someone around who doesn’t know much about what me and Sacha, so I have to fill them in.

When you tell someone that your baby died, one of three things happens.

1. It Sinks In And They’re Supportive
They say “I’m so sorry.” Or “Wow, I just don’t know what to say,” “That’s so unfair,” “The universe just doesn’t make any sense.” Those are all awesome and perfect things to say. Or they give a sympathetic look and a little hug, which is good too. We should all try to be in this group whenever possible, for anyone going through any sort of tragedy. I know that I don’t always make it to this group, myself!

2. It Sinks In And They Shut Down
They shut down and stare ahead saying nothing or run away. Truly, people turn and jog out of the room. That doesn’t feel great. It used to make me feel like I shouldn’t have shared at all. But often it’s necessary to talk about it, so I simply have to trust that other adults will be able to cope with whatever difficult feelings my story brings up.

3. It Doesn’t Sink In And Things Get Absurd
They’re caught off-guard, deflect what I’m telling them, and say something completely absurd… People are just resistant to bad news – even very kind and highly educated people. They skim over the pain, offer up rationalizations, say strange things.

I know that many people tend to hover in Group 2 because, while they’d like to be in Group 1, they’re afraid of falling to Group 3. But the truth is, if my words have sunk in to the extent that you’re concerned about my feelings in that moment, you’re already way ahead of the game. This is how low the bar is:

“I’m on a different schedule because I had a baby, but he died in the NICU.”
“Oh, my son spent time in the NICU!”

“I’m having a hard time because so many people have had babies in the past year, and it’s a constant topic of conversation. I had a baby, too. But mine is the only one that died.”
“Wow, well, at least only yours died. I mean at least none of the others did. I mean, I guess not for you, but…”

Last week, I accidentally attended a support group for parents who have lost children of all ages. I had been at my very first “yoga for grief” session, and after we came out of savasana I was surprised to see everyone pull chairs into a circle and begin to chat.

When I realized what was going on, I almost left. I had heard so many times: “at least you can have more kids”, “at least you didn’t get to know him”, “it just wasn’t the right time for you”, “well, he was sick anyhow”, “you’re too young to let this get you down”. Those comments burn deeply. They make me feel like I don’t belong at the parents’ table, or at the bereaved parents’ table (there’s a term for this: disenfranchised grief).

But the night was young and the free refreshments looked yummy, so I decided to stay (it’s what all the hip, young Bay Area singles are doing these days!).

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When it comes to sharing about personal experience – whether it’s infant loss or any other aspect of life – I tend to be more private than most. I second-guess my feelings, invalidate myself and worry about being selfish or burdening others.

Luckily, my medical training helped me recognize and (attempt to) accept my emotional experience of grief and trauma. I’m now learning first-hand that acknowledging and honestly sharing emotions is a difficult but crucial step toward recovery; it is essential to find opportunities to let the bad out and let the good in. Lately, I’ve been trying to honestly share my sadness, anger and fear, in the moment, in real life, with people I know to be supportive. That’s a terrifying thing for me to do.

I rarely feel safe enough to be emotionally honest, because of the things that I learned about feelings – and about myself – when I was just a little kid. Now, as an adult, I’ve been pleasantly surprised to find that people are not harmed by my emotions. In fact, everyone benefits from a more open relationship.

In case anyone out there happens to be “trapped in the cage” of their own silencing internal dialogue, I’m going to leave this right here…

“If you can’t say something nice, you shouldn’t say anything at all”? That is not the law. “Stop crying or I’ll give you something to cry about”? That is against the law.

Tina's Tidbits

loving dad This dad looks like he’s saying, “It’s OK. I’m here with you.”

Did you ever hear these words when you were a kid? Have you said them yourself?

If you were told, “Stop crying, or I’ll give you something to cry about,” here’s what you learned:

1. The world is a dangerous place.

If Mommy or Daddy or Grandma or the babysitter threatens to make you cry, what might a stranger do?

Trust is necessary for healthy relationships. Children learn to trust others by experiencing safety with them.

How safe do you feel around others when you’re having strong feelings today?

2. You can control how you feel.

Why would someone tell you to stop crying, unless it was possible?

The instruction to stop implies that you have a choice.

If you were convinced that you could and should control your tears, you must have come to believe you…

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Last year for Halloween, I taped paper circles on my preggo belly, put on very tacky bowling socks, and went as a bowling ball. It was the first time I had taken a picture since finding out I was pregnant (from July through October I quietly avoided cameras, because I was afraid that pictures would bring bad luck. FYI: avoiding cameras does not bring good luck, and after suffering the worst outcome, I treasure every single picture and memory that I have). By Halloween, I’d finally reached the “viability” milestone with a healthy ultrasound under my belt. For the first time during pregnancy, I felt safe and happy instead of nervous, and I wanted to celebrate that.
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This year I avoided Halloween entirely. Instead, I embraced the Day of the Dead. I was lucky enough to have an amazing friend to celebrate and honor my son with me. The Day of the Dead came as such a calming, affirming opportunity to mourn in public, communally.

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My son is always present to me, in an invisible but very welcome way. The Day of the Dead was a chance to make that presence visible to others, and to acknowledge the fact that so many others are also accompanied by their own dead loved ones (especially those who have lost a spouse, child, parent or sibling). Though each death is an awful tragedy, it’s reassuring to know that others have died as well. You just can’t see the dead at the park or point them out at the grocery store.

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In the past, the festive and aesthetic aspects of the day struck me as a morbid indulgence, a chance to play with taboo. Now, though, that open acknowledgment and celebration of my son’s current physical state, morbid as it might seem, encouraged a bit of acceptance and even made it easier for me to be around other babies – if only for a moment. Thinking joyously about what he is made it easier to cope with what he is not. It was as though I could say to Sacha, “You died and that is okay, I still love you. The living have one holiday, the dead have another, but we all belong. We are different, but not so different. You are dead, little boy, but you exist for me.”

flower crown

Flower crown by Melody Smith

After all, each vivo is part-muerto, maybe even mostly muerto. We only hang on to life for a short time before our muerto nature wins over.

I felt truly comforted for the first time in weeks. I only wish the day didn’t have to end.

haunting beauty

Haunting Beauty by Melody Smith

But of course, Monday came. This morning, a colleague unexpectedly brought her newborn to work, and an awful flashback-y spiral ensued as the tiny baby’s cries reminded me of my Sacha’s cry. The combination of relief and horror and joy that I experienced when I heard Sacha’s cry, just as a code was being paged — unsure which one of us the code had been paged for — convinced it must be for me since he sounded so healthy — prepared for my own death, so ready for my own death, had already arranged my will and prepared my insurance so that my son would always be cared for — never imagining that my crying baby would bleed to death in the nursery hours later — and why, why was no code paged then, when he had stopped crying, when one of us was really dying, when he was kept so far away —

I tried to stay, but could not focus; my heart and mind flew out the window, so I sent my body after them. That’s actually progress for me – to show myself the consideration of getting up and leaving, instead of fighting to remain. But it also means that I missed a special conference I’d looked forward to for weeks, something I’d hoped might help me to identify new and different roles within my career, now that so many of my goals and interests have changed.

How am I going to get through the rest of my time as a vivo? I don’t know. But I don’t take life for granted these days; I know that living is ultimately a finite task. I’ll have my Sachita muertito along with me until my own breath runs out.