The sum of all fears

I was lucky. I've said it before, and I will say it again. I was lucky to have had the level of care I did in my pregnancy with A. I was lucky to have had Dr. Best then, and for the subsequent pregnancy too. I was lucky, because in the end I was left with no guilt. I was worried a lot in that pregnancy, and Dr. Best took me seriously every time. Every time. There was nothing we could've done. Nothing anyone could've done. And so when A died, when he was born, when we went home without our baby, we were sad and we were crushed. But I didn't feel guilty.

I can't tell you anymore whether I appreciated the significance of the not feeling guilty right from the get go. I can tell you that one of the first things Dr. Best said was that it was not my fault. He was very emphatic about that, though I told him I couldn't find fault if I wanted to. I understand now that he has seen too many women blame themselves, and I love him all the more for trying to care for me in this way even as I lay there still pregnant with my dead son.

I can tell you, though, that once I was functional enough to find the keyboard, once I found the world of bereaved blogging, I knew. I knew how incredibly lucky I was every time my heart broke for another mother feeling guilty. Guilt over the betrayal of one's body. Guilt over decisions. Guilt over listening to medical professionals who turned out to have been speaking out of their asses. Guilt over a stray remark, over thoughts. Guilt, guilt, guilt. I wanted to take it all away. I knew I couldn't. I didn't know how they did it-- the grief was terrible, overwhelming, heavy enough. To think about others out there having guilt piled on top of the whole shit pile? But it seemed cruel. It seemed too much. I know, and I knew then, that we all carry what we have, that we do it because we have to, because there is no other way. And yet I still feel sad for anyone having to carry the extra burden. If that is you, I am sorry. I am so sorry.

We talk about fears often. There is a good discussion happening on our discussion board now on that very subject. Sometimes we call our fears our crazy. Nothing wrong with a good shot of crazy, if you ask me. But see, I don't think of my biggest fear as crazy. I think of it as a very rational response to my experiences. Can you guess what it is? I bet you can. It's not a thing, really, it's a feeling. I am afraid of guilt.

When I became pregnant with the Cub, I told Dr. Best I needed to cover my ass. I needed to know that every little thing was been checked and rechecked, that everything humanly possible and impossible was been done. Before I was pregnant, when we were gearing up to try again, I told Nurse Kind that I didn't think I was broken exactly, but that another loss would break me. By the time I was pregnant, I knew that wasn't true. I would live and I would function, because, DUH, I'd have to. But please, oh please, I didn't want to think about having to lift the guilt too. 

We got lucky, and the Cub came home with us. Though the aftermath of that pregnancy is still messy and complicated and still doing a number on my head despite over a year of therapy. But even in the here and now, in the non-pregnant world of mine, my biggest fear, I think, is still guilt.

I shudder to hear of a death of a child. Any child. Anywhere. And I'd be lying if I said I never think about some stupid ass accident or some horrible disease taking one or both of my living children away. Or my husband. Or my sister. Or my parents. Oh, I'd be lying. But I'd also be lying if I said those were my worst fears.

Last year JD had a whole load of business trips, some on the long side. His business trips mean various things for the family schedules at different times, but they nearly always mean having to get Monkey from gymnastics at least once right around the time of Cub's bedtime. Which means having to take him with, and can mean him doing a command performance as one of his favorite characters-- Crankasaurus or worse, the Drama Prince-- upon our return home. There's exactly one escape hatch from Drama Prince bedtime, and that is if he falls asleep in the car on the way home. Unsurprisingly, driving back I tend to glance into the rear view mirror, trying to see whether we have liftoff.

So this one time I saw Cub losing his epic battle with the sleepies just before the light where we hang a left, not two minutes from our house. He wasn't out yet, certainly not out enough to be transportable to bed, but it was a matter of minutes. So I drove the long way around. Straight through that light, left at the next, three blocks up, back on the parkway, around the roundabout, take the fourth street, straight, left, and finally right onto our street. You know what I was thinking about the whole time I was driving the extra oh, I don't know, 2-3 miles? The whole barely five minutes of it? While also, I note, having a conversation with Monkey about, I think, her new and improved bar routine? I was thinking, see, how stupid it would be if we got hit by a drunk or sleepy driver while taking the little detour. I wasn't, notice, thinking that while I dragged the Cub with me to pick Monkey up, even though had JD been home, I would've gone by myself. But for that tiny little detour? Yeah, baby, I was. I decided it was because the extra drive wasn't strictly necessary. I didn't have to be there-- I was doing it for convenience. And sanity, but you know, mainly for convenience.

A couple of months ago I was trying to catch up on my reader. I'd fallen hopelessly behind, but now I was trying to come back to blogging (again... sigh). A few weeks before I did the "mark all as read" thing, but since then the reader began accumulating posts again, and so I was trying to scan through those. One caught my eye, a post from a bereaved mother about an acquaintance of hers, and I read every word of it. I could tell from the start it wasn't going to end well-- can't tell you exactly what it was but my spidy dead baby sense was tingling like crazy. Sure enough, it ends with a dead baby. Dead toddler, actually. Which would be horrific any day of the week. But the toddler, see, she died in a bathtub accident. And the thing that made that story so horrific for me, so completely devastating, was the thought of the guilt the parents must now be feeling. Whatever actually happened, whoever was supposed to have been watching the toddler, you know the parents would in the end feel responsible. How could they not? For days I thought of that story, for weeks even. Chill, every time. Frozen horror.

In the world of dead babies on of the horrid things is that we know not very much about our dead children-- likes, dislikes, the sound of their voices, their laughs, often not even the color of their eyes. Not knowing makes the void seem somehow more cruel. Toddlers, they have personalities, adorable little bits of shtick, a sense of humor. To have all of that taken, snuffed out-- must be horrible. But that wasn't what was making me cold and clammy every time I thought about it. I wasn't maniacally hugging the Cub, wasn't imagining what I would do if he was gone. No, I was trying to comprehend how on Earth you get up and make breakfast for your older kids when you should be making it for all of them, and when you don't have to think very hard to feel guilty over her absence.

This is also, I believe, why I was obsessing over that detour-- to differing degrees these two scenarios are about the what if of not being able to escape the blame in my own head. I've told so many bereaved mothers that they are not at fault. And I know had we been hit while taking that detour it would've been the fault of the one doing the hitting, but I also know it would've been hard to convince myself I had to have been there for them to hit.

So I own it-- I am afraid of guilt. I am afraid of the unfixable being my fault. I am used, now, to the weight of grief. I recognize it when it reminds me of its constant presence, when it pokes me in the middle of what had seemed like a harmless conversation at work, at the park, at a store. I recognize it and nod back-- I know you are here, I know you will be here, it's ok. Perhaps I lack imagination sufficient to see myself in that kind of a relationship with guilt. Guilt seems uglier to me, more demanding, it just seems like more. I know we all do what we have to do, and carry what we are given. But I am lucky, and boy do I wish to stay that way.

What is your relationship with guilt? Is it part of your grief or have you too managed to escape it? What is your biggest fear? Is it something you think about a lot or something you do your best not to think about at all?

other women

The groom’s sister looks pale and smiles wanly. Her black cocktail dress fits trimly over her belly; she looks six, maybe seven, months along. In the reception hall she is seated alone across the table from me. Her place setting is adorned with a small white candle and a photo in a black felt frame— her father, who died a few years ago. 

I happen to know that hers is an IVF baby. That she is 39, single, and has decided to parent alone. Her grief is so palpable and familiar—alone with sadness at a happy event— that I find myself wondering if this is her first pregnancy attempt, or if there is a loss in her past, or if her baby has complications. She looks so ethereally sad for someone whose brother is getting married. Maybe she just misses her dad.

I should ask her. This new, compassionate me, who is supposedly unafraid of grief, should ask, How are you really doing? But I don’t. I make small talk. I am embarrassed.

I am faking this wedding. I am going to have a good time, dammit. One of my best friends is getting married, the banquet hall full of old acquaintances, and I just want to pretend I am okay. So I do. For the first time I put a huge parenthesis around my dead baby and prattle on about my beautiful stepdaughter, my great new husband, our upcoming move, and how beautiful the bride looks. This is how I get through it. This is how I have a good time.

Later I regretted this portrait of my life. Not because I hid my baby daughter—there isn’t a person in the room who meant enough for me to share her name with them. But because of the other women I might have wounded with my fakery. Because in that moment I chose to continue the cycle, chose not to break the silence.

At the wedding, I try to be cheerful with Alice, who is spending the evening at the edge of the terrace, the edge of the ballroom, the edge of the crowd. She is fidgety with an angry look on her face. Her very tall husband smiles at everyone, mingles, brings her drinks. I’ve met her only once, at a shower she threw for the bride. There she let something slip about how painful fertility testing is. I see the look on her face tonight and wonder. How many losses? How far long? How many failed cycles? How many bad test results? To me, she looks like grief.

photo by laura mary

When I approach her, she barely responds. Her husband swoops in with drinks. Conversation falters. We end up chatting about my stepdaughter and her adventures at summer camp. This is stupid, given what I know. I want to say, How is the testing going? It’s okay to talk to me. I know something about this. But I don’t. I smile and mention Lilly’s name too many times. Finally, we sidle away from one another. But I watch her all night.

Later I find Nissa, a vivacious Filipina in her late 40s with a poet for a husband. I used to pal around with her and the bride, but that was years ago. She wants to catch up and hear my news. I tell her I am a stepmama, and that I am about to move to her old stomping grounds in the west of the state. Her husband points out that they grow good weed there, not that he’s tried it. We laugh.

As I speak, she hears happiness in my voice. She doesn’t hear the parenthesis. So you like being a parent?, she asks. Oh, that is so great, oh…. She looks up at her husband, and I see the pain cross her face. They have never been able to have children. And now I am the jerk, bragging about “my child” to the childless. I could have told her then about Angel Mae. She would have been kind about it, but it would have felt like backtracking. See I am not really a jerk because my baby died and I haven’t been able to get pregnant again either…

But at that moment, I don’t know how to say it. She is wearing a bridesmaid dress and has a champagne glass in her hand.

Jane is on the dance floor. I haven’t seen her since college. She moved to Colorado, then Paris, then back to the Southwest. She is lively and nerdy and gorgeous, just as I remember her. It has always been hard to get a negative word out of her; she smiles broadly even as she tells me about rupturing her Achilles tendon a week before her wedding. The kids are doing great, she says, total opposites in personality, though. Her younger one is adopted.

I could ask why they chose to adopt. I wonder about losses and secondary infertility. I look for answers in her face, but she is still smiling and grooving as Prince’s Seven blares loudly from the speakers. Maybe she adopted simply because she was adopted herself.

She asks if I am on Facebook. I tell her I used to be but not anymore. Why not? I dodge the question.

Maybe this is just me, seeing loss everywhere. Maybe these women felt fine and could have cared less what I rambled about. Maybe I should mind my own business. Maybe it’s a good thing I didn’t make myself into the crazy dead baby lady at the wedding.

Maybe. But I’m pretty sure I’m right about this—that at such a happy occasion, there were sad hearts wandering the ballroom. So I’m still thinking about those women, wishing I had spoken up, wishing we could each have felt a little less alone. But silence was my survival that night. Maybe it was theirs, too.

* * * * * * * *

These days, how are you with other people’s pain and grief (hidden or revealed)? Has your own loss made you bolder about being with others who are hurting? What is it like when you say the wrong thing, or nothing? Have you ever publicly broken the “time and place” rules because you needed to talk?

afraid of the dark

photo by Jenny Kristina Nilsson.

I feel small. Alone.
 
It is suddenly upon me. Takes hold of me. I am a small molting creature. I want to crawl under something. Or play dead. Or turn the exact shade of my bed covers. I kick my legs and turn over. Then turn over again. It is always night when I feel this weight on me, or rather all the skin off of me. Always night when I become terrified of mortality. Mine. Yours. My parent's. My children's. And then the fear turns to some kind of vortex in the time-space continuum. Time folds in on itself, across my year and into old age. I no longer feel, in those moments, as though I am thirty-six, but I gag on that withered end-of-life taste. I can smell the sweet orange cleaner that covers old age. And see myself wanting to believe in something. Life seems so fucking fast now. My kids and their kids are going to be old before I can even process how amazing their youth is.
 
I existed in a miniature terrarium before Lucy died. It was a self-constructed sterile world with plastic signs that read, "This is your home. Nothing can hurt you here."

I can see beyond the glass now. It was rather silly to begin with, surrounding myself with moss and other tiny soft things. I didn't realize I was doing it, after all. I just sought comfort, like any animal.  I thought I was a Buddhist. I thought I was an existentialist. I thought I was an existentialist Buddhist. Death. Life. Mortality. Morality. There was some bullshit zen place I felt I had gotten with death. Death happens. To everyone. I thought I made peace with that. Until someone so loved and daughterly died inside of me. Then I realized I was only prepared for other people's deaths, not my own or my own child's death.

:::

After Lucy died, tectonic plates shifted in me. Whole continents of me are no longer flat. My body navigates the outside world and then my new and ever-changing internal landscape. First, twisting and moving around other people's fears of death and child loss, and then, of course, charting a course through my own. I have become terrified of gravity. Plagues rest right over the horizon, ready to capture my children. Even Daddy-wrestling seems wrought with portent and disaster. The most pedestrian of activities have become the potential for the most dramatic of endings.

A small green plaque now reads at the base of me:

The Caution Mountains.
Elevation: Not High Enough to Hurt Yourself.

The truth is I cannot protect anyone from death. We are all going to die. We don't know when and we don't know where. And it makes all of this impossibly oppressive. We all know this, but did I really know it? Did I really understand that? Not until Lucy died and I held her small, lifeless body and wished it warm again.

If I needed to pick one word to describe grief for me, it would be fear.

Fear of death. Fear of disaster. Fear of the unknown. Fear of others. Fear of myself. Fear of the market. Middle of the night fear. Shaking fear.  Fear that feels like the dysentery. Fear that feels like indifference and apathy. Fear that feels foolish. Fear that does not resemble a labyrinth, but rather the exact opposite--a maze with no outs.

No matter how much bubble wrap I had, I could not have kept you safe, daughter.

This fear isn't debilitating. In fact, it is so functional and so understandable, I allow it to exist without medication. "You are afraid," I say, "because your daughter died. You are afraid because you don't want anyone else to die. You are afraid because you don't want to die. You are afraid because you have seen person ash and it is not clean and smooth and easy, it is lumpy and different colors and includes someone you loved more than the sun. And the others are afraid too. It is normal to be afraid."

So much of who I was died the day Lucy died. Not just the happy one, the non-grieving Angie, but the secure one, the peaceful one, the one who wasn't afraid of shadows and boogey-men. The existentialist Buddhist one.

In the past eighteen months I have talked about these two people with my name--the Old Me and the New Me. By the sounds of it, the Old Me is a pretty terrific person. The Old Me was pretty. Kind. Light on her feet. An athlete even. She was a positive person.  A non-grudge holder. She meditated and practiced ahimsa. The Old Me remembered your birthday. The Old Me was striving for selflessness and enlightenment. She sat with discomfort for wisdom. The Old Me was funny without being bitter and sad. The Old Me talked about your stuff with you. She was a good listener. The Old Me also wore crazy earrings. You would have liked her.

The New Me is bitter. Angst-y. The New Me is a sad person. Defeated. The New Me is afraid. She is anxious, biting her nails and pacing. Up late at night thinking about things she cannot change. The New Me doubts. Often. Constantly, even. She doubts her abilities as a parent. She doubts her diligence in everything. She doubts her beliefs and unbeliefs. She doubts truths. She doubts justice. She doubts knowledge. She doubts herself.

The Old Me/New Me dichotomy is cruel, because I was never that great, nor am I that horrible. It is also a lie. This is just all me. Me. This is just me grieving. This is me soul happy, but body sad. This is me afraid. This is me parenting two live children and a dead one. The truth of it is most of the world saw the commercial of me. The me with make-up on, drinking a bourbon on the rocks, laughing at irreverence, riffing on a story with an old friend. I was selling an idea of me. That was me socializing. A very different me. This is the rather unchangeable borderline agoraphobic me trying to figure out how to live this life without my child.

What one word would you pick to describe your grief? How has anxiety manifested itself in you after the death of your child or children? How do you deal with your middle of the night anxieties? Do you believe that there is an old and new you? What is the new you like?

Warrior Position

Angie, a writer, poet, and painter, joins us today at Glow in the Woods as a regular contributor. With the stillbirth of her second daughter Lucia, Angie began writing at Still Life with Circles. She shares a piece of art, music or writing from a bereaved parent or family member every day at the year-long creative project still life 365. Angie resides near Philadelphia.

Angie is kind, thinky, and an occasional firecracker. And so here, among us, she just makes sense. Please join us in welcoming her as yet another glowy cabin host.

~ Kate

I don't want her to notice me, but I keep staring at her. I will myself to simply ignore her, but then I look back to make sure she is not looking. My attempt to avoid her gaze wrenches her towards me.

"I know you. Where do I know you from?" My eyes fall on the eighteen month old girl staring at me from her shopping cart.
"Prenatal yoga."
"That's right! How are you?" And her eyes fall on the car seat propped in the front of my basket.
"How old is he?"
"Twelve weeks."

She bends down to see in the front of the car. Math is happening. Confusion is settling in. She stares at me, unsure what to say. I have a three year old and a three month old. Nothing is calculating. Awkwardness has just split again and again like some kind of quickly reproducing virus, filling the air around us, suddenly and oppressively.
 
"My daughter, from that class, died. She was stillborn at 38 weeks."
We drink in the conversation suddenly diseased by death.
"Oh my God. I have chills."
"Well, to be honest, I have chills too. I haven't talked to anyone from that class, or the instructors, and some of the most loving memories of my daughter is prenatal yoga. I have been afraid to see people, or even go back to a yoga studio."

I said it. Out loud. I am afraid of you. I am afraid of yoga.

:::

With Lucy in me, I felt more beautiful than I ever have in my life. I wore long flowing dresses and walked in the grass barefooted. I reveled in being rounded and beautiful. I was able to grow beautiful baby girls, and it made me feel like magic. I took yoga to connect with Lucy, my second daughter, after chasing my one year old all day. Prenatal yoga was the time of the week that was solely ours. As I practiced, I would think how incredibly happy I was on a deep fundamental level. Every cell of my body was contented. I wanted this exact life at this exact moment.

photo by virginia zuluaga

The  prenatal yoga instructor made each of us promise to email or call within 72 hours of our births. So she could tell the others. So she could know about our beautiful babies. She said the same thing every class for the new people and to remind all of us. She. Was. Serious.

I did, you know, tell her in the 72 hour window after Lucy died. I sent an email to every person in my address book with our impossibly sad news. It was the worst thing I could imagine at the time--having to tell someone in the supermarket that my daughter died.

We received many condolences. The ones that were most surprising to me were the ones that weren’t there. There was nothing from the prenatal yoga instructor. I wish I could say that I didn't keep score of such things. But I did. I remember every "I'm sorry," no matter how awkward. Every. Single. One. Weeks passed and I sent her another email about continuing yoga. And then a few more weeks, I sent another. Written delicately between the lines in invisible sanskrit, I wrote, "Please help me, Yogini. Certainly, you of all people have sat with a grieving mother. Certainly, you of all people can help me trust this body again. Certainly, you  of all people can shed a beautiful light on this darkest of occurrences. Certainly, you of all people have wisdom about death."

Two months and another email later, I received an email from the yoga instructor with many excuses about why she didn’t say she was sorry earlier. “I wanted to give you space to grieve,” she said. Because emails with a simple “I’m sorry” are always so disruptive, I snarked in my head. She gave me ten free sessions and wished me well.

To be frank, I forgot she ran a business. I considered her part of my holistic maternity care. We talked long after class about birthing. I thought she loved and cared for each little baby growing in each lumbering body that came to her studio. I thought she was a healer, some kind of secular shaman and a person comfortable with life as well as death. How do you soothe people, help them find a center, when you ignore a huge part of this human experience—death, grief, mourning and chaos? Can you sit with life if you cannot sit with death?

:::

To the beautiful pregnant hippy mother I once was with Lucy in my belly, I am now the ugly punk rock girl with pins through her face and a mess of fried green hair. I feel scabby and damaged. I reject yoga. The mind/body connection feels like bullshit to me now.
 
It is acute in this market, talking to this mother. The refrain in my head is, "The fucking yoga instructor said nothing."  But this yoga mother is different. She speaks with sincere compassion about my daughter. If she had only known, she said. She wears her health and happiness, her spirit and her graciousness, like war paint. I wear my grief and sadness like a Kevlar vest. I protect myself against who I once was, maybe who I want to be. But she made it easy for me to talk to her simply by dint of her not making excuses to get away. She listened. There is no magic formula to being a good support in my grief. Listen. Be brave. I want you to work out. I am rooting for you.

Sometimes I think my subconscious is a neodymium magnet. I didn't want to talk to her. I felt nauseous and unnerved when I saw her. But maybe I did want to talk to her. Maybe I want to invoke Lucy's name. Maybe I wanted one of the yoga women to know my baby died, while theirs lived. Or maybe it is this little girl staring at me. I don't usually imagine what Lucy would be doing, or where she would be in her life. I am not that imaginative. But maybe I just wanted this specific experience--Little Girl: Aged Same As Dead Daughter.

I thanked her for standing and talking to me a bit. Maybe, I muse, talking to you might help break that fear I have of going back in a studio and practicing yoga again. But deep down, I know it won't. I don't measure my growth in long speeches, but perhaps a sigh here or there. One day, perhaps, my warrior position will be different. Perhaps it will hold both life and death.

:::

I believe in the mind-body connection sometimes. Other times, I think it paints the world with a broad magical brush, especially when it comes to pregnancy. 'Just buy into the organic / yoga / no lunch meat / no alcohol / left-side sleeping / meditating / positive thinking thing and your baby will be fine.' And I think that is bullshit, even if I think all those things are good to practice in pregnancy. And I think it's okay to call bullshit.

What about you? What large part of who you once were have you rejected after your child's death? What schools of thought, or spiritual and mind/body practices have you retained since the loss of your baby? What have you discarded, and why? What have you found that's given you some comfort?

Dear Friend,

I'm so sorry you thought of us when your friend's newborn died this week.  I'm sorry for your friends and their lost child most of all, but I'm sad for you, and for us, too, that we are now experts at this.  But fear not, you contacted the right people.  We can help you help them.

First of all, start cooking.  Do laundry, clean the house, take charge.  Keep it up for at least a month, with the help of other friends.  Right away, order her to bed and give him a beer or nine.  Yeah yeah yeah alcohol is dangerous and addictive and all that, but I swear to whatever god is out there, delicious malted barley and fermented hops probably saved my life in those first days.  Way better than the anti-depressants or valium they'll probably want.  But let them have them, too, for a little while.  Obviously, not together.  But a little bit of numb is fine.  They are in shock-panic-disaster-mode.  All their alarms are going off and nothing makes any sense at all right now.  Let them grieve, but help them be calm, too, if you can.

And frankly, yeah they are probably a little suicidal and a little crazy and definitely extremely lost.  Their souls have just been shredded by the Universe itself.  They are fucked up and they need help.  That is why you have to hold them tight and keep them close.  Do it in shifts.  Be with them, but don't overwhelm them with people.  If anyone manages to make either of them laugh no matter how dark and awful the humor, that is an extremely good sign.  Don't bring in clowns, but aim for a little bit of black humor if they are the type that needs that.  I did and my brothers did me right.  Those moments of dark levity were less-awful-spots in a terrible, incomprehensible time.

Don't make them have to make decisions.  In the first days after Silas's death I could only think a few minutes into the future and not all that successfully.  "Should I get up?  Should I eat?  Should I bother even thinking about any of that?"  I felt alien and awful in the outside world.  I'll never forget my first errand out to the bank and a Walgreens after he died.  I returned worn out from a ten minute ride up the street.  I was crazed with grief and overwhelmed by the fact that the world just kept on going even though mine had come to a complete stop.

Do anything you can to make them have less to think about.  Right now they are trying to figure out what the fuck they are supposed to do with their dead child, with their demolished hopes, with their annihilated lives.  Don't make them have to think about chores, too.

And yeah, she's worse off than him right now in a more immediate, physical way.  But then the other way around, that also makes it worse for him, too.  His disconnection from the physical bond mother and child shared is also a loss for him.  Mentally, emotionally, chemically, he was preparing to meet and bond with that child, just like the mother, but now he has even less than what she had, in a way.  Really all I'm saying is he's working hard to stay strong and upright for her, but don't mistake courage for strength.  I always felt like I was on the verge of a bottomless, endless void.  Stand there and face it with him if you can, and don't let that void consume either of them.

A death like this can be a poison to their souls.  It will take a great deal of patience and time for either of them to even begin to fake normalcy.  Shower them with love.  Talk about their child, use her name.  Look them in the face and the eyes when you discuss the absurd awfulness of their plight.  Tell them how much you miss her.  Do not be afraid to be direct and honest and clear with them.  The death of their child is like a blazing nova of utter blackness and its awful light reveals everything about their lives, their hopes, and about their friends and their families.  Do not be afraid to stand directly next to them and face directly into that palpable pain if you want to keep them alive and keep them protected and keep them as friends.  Those that cannot handle what they are going through won't stay around long, and they will know very quickly who they can count on.  Be someone they can always count on, because right now they can't count on anything at all.  The Universe itself has turned on them.

Never say that everything happens for a reason.  Never try to mollify them with talk of angels and meant-to-be's.  Never say that God works in mysterious ways.  Never compare a trivial loss in your own life with what they are going through.  Don't talk about babies.  Don't talk about hope and somedays and futures.  Help them deal with the immediate dilemmas of everyday life (ie what show to watch, what time to eat, that it is okay to not shower) and don't even consider trying to tell them anything about the true nature of reality and what good might someday come.  Any of that is just dressing up a shit sandwich with rotten tomatoes and wilted lettuce.

I'm sorry.  I love you.  I miss your child.  I'm here for you.  Let me do that for you.  Those are the only things you need to say right now and each and every one should be followed with a tight and true hug.  Cry with them.  Be silent with them.  Talk with them if they can find any words at all.

Lastly, don't forget to take care of yourself, as well.  Work with your friends to always keep someone close, but make sure to sustain your own life so that you are strong and ready when you are with them.  They will be strange and sad and difficult, but if you love them and are patient you just may keep a flicker of light alive in their souls.  But don't worry about sanity right now, that's a lost cause anyway.  Just leave breadcrumbs on the trail back and help them be a little bit okay for a little bit of one day, each day, every day, hour by hour, minute by minute.

They are on a whole new timescale now.  They are now counting the moments since they lost their child, and nothing will ever be even remotely the same again.  They need company in this new landscape, though, and that means you need to help them find their way step by step.  But don't call them baby-steps, they just might punch you in the face for that one.

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

What else everyone?  What advice can you give to the friends and family of someone that has just lost a child?  And what do you disagree with from what I said?  This path is completely different in so many ways for each and every person so I'm sure my advice is anything but exactly right for everyone.  What did I miss or get wrong?

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?