She's In California Somewhere

I was supposed to call him back months ago. He had left a simple message:

Hi, this is Eric from One Legacy. I’m calling in regard to a question you had. Again, this is Eric at One Legacy. Thank you so much.

It was a message we had spent a year waiting for. And it was there for the taking, for calling back, and I sat idle on it, pressing mute, or pause, or whatever it took to buy myself some emotional strength.

They had made it clear from the beginning of the donation process: after one year we could find out if our daughter’s heart valves could be used to help another baby.

One year. I remember wishing the time away, as if knowing what happened to her valves was all that mattered, as if I could skip facing grief and living in sorrow and missing the most important year of my life.

And then the moment was suddenly upon me.

I yearned for good news. I begged for science and circumstances to align in such perfect harmony for there be some life that was made easier, or saved, by the freak accident that took my darling Margot. I desperately wanted there to be a child crawling around somewhere with a part of Margot inside of them. The constant thought of this miracle materializing, of her valves fusing together with ventricles and atriums of another human being, seemed like concrete evidence that something beautiful came from her.

I have taken gifts from her absence, things I have deemed beautiful only because I don’t seem to have a choice to think about them any other way. I have taken the experience and carved out lessons and wisdom from it, become more fully human, more content, more thoughtful. But even all of the gifts in the world seem so trivial in comparison to what Margot got out of the deal, the one who didn’t even get a breath.

But these heart valves. This felt like something real. A gift directly from her to another, not a gift that was painfully extracted by her parents, but entirely, physically, from her.

+++

The nurse told us that if we wanted to donate, we only had a few hours left with her. They needed to keep her cold, she said. They needed to take her in for open heart surgery.

I opened her delicate eyelids and unwrapped the swaddle around her body. I studied every solitary fragment of her flesh, memorizing the shape of her elbow and the curl of her lip, tracing the outline of her sizable hands. I helplessly pleaded with her to miraculously wake up, even though I knew it to be in vain, and then pleaded and begged none the less. Rain cascaded down the window of our third floor ICU room, and I watched the dark ominous sky hovering over Los Angeles, as if nature and the state of my brokenness were in some mysterious union.

When it was time to say goodbye, we were sleeping together on a fold out bed, my arm wrapped around her chest, my nose pressed up against her hair. I placed her body in a clear plastic basin and watched her disappear around the corner.

Almost all of her returned to me a few days later in the form of ashes. Everything but those valves.

+++

Fear has me in a noose. What if there isn’t good news? What if her valves weren’t right? What if they sat idle for too long and were terminated somewhere, thrown into a bin, or saved in a jar.

I’m locked in my bedroom, phone in hand.

Hi, Eric. My name is Josh Jackson and I’m calling you back in regards to my daughter Margot. She died in March of last year and we donated her heart valves and I wondered if you had any information on those valves.

The words come out like one continuous sentence, sputtered out shaky and broken. I feel exposed, laid bare by a year of grief that has slowly eroded the confidence and security and strength that once filled my being.

Yes, hello Josh. I am so sorry for your loss. Let me see what I can find out for you.

There is a kindness in his voice that makes me want to weep.

Thanks for waiting. It seems that we haven’t yet found a match for them, but her valves have recently passed a follow up test that allows them to still be used. Usually our donations get used within the first year, so I would expect them to go to someone soon.

I don’t know what to ask next, even though the questions are streaming through my mind like flashcards.  How do they test usability? What happens if they find a match? Can we find out the name of the recipient if there is a match? Should I call back later?

Silence.

Where are her valves right now? The one question I hadn’t thought of, the one question that matters.

Silence.

They are somewhere in California.

Suddenly I’m thrust into this primal act of fatherhood, still looking for my missing child, as if I somehow forgot that her valves, still workable and life giving, were my daughter.

WHERE? WHERE EXACTLY IS SHE? WHAT IS THE ADDRESS? WHERE ARE THEY KEPT? I HAVE TO SEE HER.

I want to shout and scream, but the words never make it out of my mind. It’s all I can do to hold myself together, to keep myself from running out the door and into the drivers seat and to every lab and hospital in California, in search of what is left of her.

I thank him for his time and effort and grace and vow to call back in a few months, as if I’ll somehow forget.

Eighteen months later and I’m still searching.


-----


How far out from your loss are you? In what ways are you still tangibly confronted with your child’s death?

4 years gone

Tomorrow is Silas's birthday.  He would be four years old.  Imagining our four year old son cavorting through this house, the yard, our lives, is painfully impossible.  I can imagine what that Universe would look like from the outside, but not how it would feel in there.

It would have the same hint of crimson in the leaves and the same gorgeous fall breeze alight on a brilliant blue day.  There would be the same cool and colder nights and suddenly hot September afternoons.  But maybe I would not notice the touch of decay creeping into the shadows.  Certainly the first falling, orange leaf I witnessed would not carry the weight of death and despair like it always does now.   With my amazing son's fourth birthday helping to usher in autumn, I probably would not hate this time of year.

September makes me cringe.  With the flip of the calendar I know what is coming, but I have no idea how to deal with it.  I doubt I ever will.

Taking a quick inventory it appears that this year's emotions are: helplessness, fear, anger, disbelief, confusion and a deep and abiding despair.  In other words, same as it ever was.  In detail: I can't change the past.  I'm afraid of anything happening to Zeph, ever.  I'm still quite upset with the midwives, and at my foolish, naive trust in them.  That this is my life and that my firstborn son is dead remains impossible.  Four years now I still don't know how to properly prepare for and honor his birth/death day.  And of course, still, always and forever, I am profoundly sad I don't get to share my life with him and see what kind of man he would have grown into, and how he would have changed me.

I always feel all of that on some level, but this month and week and final days compress and tighten in my veins like my blood is being replaced with liquid concrete as my memory unfolds the events of that long night and longer day.

Growing up my mother would always recount the events leading up to my birth.  I loved hearing her tell me our beautiful, shared history.  But Silas's day is made of silence.  No one wants to hear that story and I can barely stand my own mind as it ticks off each milestone and moment.

The outpouring of love and support from friends and family as Sept 25 approaches yet again has been... nonexistent.  I'm shocked that is the case, frankly.  Maybe they are planning a surprise grief party, but I doubt it.

Our families had been incredibly supportive and understanding as Lu and I thrashed in agony in the first years after he was gone, and then they continued to handle us gently and kindly as time passed.  But maybe four years is enough for them.  They did their best, and now that's pretty much it.  New son in our life and new babies all around means new beginnings and big happiness for everyone and it's time to move on and let Silas drift into our past, as if his life was just something that happened, instead of something that is.

There will be a few friends that are conscious enough to make a call or send a text or email.  And I almost wish I could steal all knowledge of Silas from my amazing mother debilitated from MS and my incredible father taking care of her, if only just to save them from any more hardship and sadness, but I know they are crippled with despair over the loss of their grandson, and I know they know what is about to happen once again.  I wish I felt that same conscious understanding from others, but the fact is people are mostly wrapped up in themselves, and if you want anything from them you need to tell them clearly and loudly exactly what you want.

But that's the problem.  I can't say, "Hey it's going to be Silas's birthday in a few days and it is still really really tough, so I need you all to just say his name to me and tell me you miss him and show me that you remember."  Because if you have to remind someone to remember something, they're not really remembering at all, are they?  They are just responding to your clearly spoken need without any of the actual remembering or forethought.  And that fucking hurts.  It's that same expectation game all over again, but I don't really give a shit.  They should remember.  They should tell me that.  They should reach out and grab me as the calendar winds up to Sept 25 and launches me to the edge of the Abyss once again.

Instead we'll do it ourselves, and take care of each other as we always have.  We are going to Silas's tree tomorrow. This will be the first year we have a living, breathing child in our lives and it definitely makes it far better than it has ever been before. Of course as we sit there around his older brother's memorial tree I am not going to be able to stop thinking about the fact that someday I will have to share this deep sadness with this gorgeous, innocent child.  And that, of course, is awful.  I don't have any idea how I'm going to handle that or how his understanding of this awful history will affect him as he grows up.  I already feel terrible that we will have to break his heart someday.

Me, Lu and Zeph are going to Silas's tree tomorrow, and we're going to plant tulips and have a little lunch picnic and cry our fucking eyes out and laugh at our amazing son who loves to play with sticks more than toys and enjoys eating rocks as much as fruit.  He loves both of us so vividly he almost can't handle it sometimes.  He's a wonderfully wild and alive little child and I wish with every cell of my being he had an older brother to torment and grab and run with and learn from and squeeze just as hard as he yanks on us.

I'm not working at all tomorrow.  I'm just spending the day with Zephyr, as I always do on Tuesdays.  It should be his older brother's birthday party.  Instead it is something else I wish no one would ever have to endure.  With silence all around and everyone consumed by their own lives, we will embrace each other hard and make this awful day slightly less unbearable just by doing it together.

The concrete fills my veins drop by drop as this day approaches, until I am immobilized by sadness, and my soul shatters with every step I take through his birthday, his deathday, his impossibly brief life.  I will settle into bed as dust tomorrow night and I will dream of his stars and wish his younger brother had Silas in his life.

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

How has the day of your child's birth and death changed over the years?  How many years have gone by since you lost them?  What has changed about how you deal with that day?  How have the people around your responded (or not) to that anniversary?

shopping with my daughter

Em is a mother of four children. As she describes it, "Three sons on earth who bless me daily and one daughter in Heaven who has impacted more people than I know in her too-short life here. I miss my daughter with every breath." Em writes about her and her life after Eva on her blog After Eva. Em's essay was selected in the spring guest post submission process, and we are so pleased to welcome her words here today. Please join in the conversation in the comment section. --Angie

I took you shopping today, my sweet.

First we dropped off your brothers with a friend. You didn't mind being left alone in the truck for a few minutes while I brought them inside. Then we went to the second-hand store the church runs on Friday mornings. My heart was heavy within me as I caressed you in my pocket while I drank coffee with another mum. The other children there were so demanding. Not you, my sweet. You were quiet as a mouse. I saw a pair of shoes on the shelf. Little shoes that should be just your size. I wanted them. I ached for them. I left them there.  Actually I had donated them to the store a few weeks earlier. They were to have been yours, my dear.

Then we went to pick up some photos. Photos of you, my sweet. It's amazing how good a deal photographers will give you  when the child in the photographs has died. They couldn't find them. Never mind, I'll pick them up another time.  We went on to the grocery store. I bought milk, tomatoes, yogurt, cucumbers... I didn't buy any baby food. We don't need any in our house. You don't eat it anymore, my darling.

Next stop, the mall. This special stop is why I brought you with me, my treasure. This is why you accompanied me shopping today. We stopped in at the little booth that does engraving. The lady there commented on how cute the little rocking horse was that I wanted engraved. She held it up and looked at it. She asked what I wanted engraved on it. I told her it was you she was so casually holding in her hand. You, my sweet, encased in a rocking horse that should have been a piggy bank for a living girl, not an urn for a dead one. You never should have been able to fit inside that little horse. We engraved your name:

Eva Ruby Christine-October 15 2010 to August 15 2011.

Beloved Daughter, Sister, and Granddaughter. There are so few things I can buy for you, so few ways I can mother you.  So, I get your urn engraved. I caress your name etched into the pewter and the tears stream down my face at how beautiful it looks. How beautiful you are, my sweet.

We left the mall and carried on. We had many stops to do today. You didn't cry or fuss about your car seat. I took you out of my pocket when I was driving. Let you get some sunshine. We went out for lunch together. I put you on the table in front of me and I ignored all the people who looked at the tears washing down my face as I ate my lunch with you. I thought about how different it would have been  to have lunch with you if you were breathing. I wouldn't linger over coffee, and what would you be eating my darling? Would you want to hold a french fry in your chubby hand?

We drove back together, along the road we had come. I caressed you again in my pocket, rubbing my thumb along your newly engraved name, and we went to pick up your brothers.  They came tumbling out of the house. Full of joy. I gently showed your little rocking horse to my friend who babysat your brothers.  She didn't know what she was holding as she commented on how surprisingly heavy it was. That's when I told her it was heavy because it was full of ashes. Full of you, my treasure.

I didn't let her hold you long. I jealously reached back for you, and safely ensconced you in my pocket once again.

If you chose cremation, where do you keep your baby's ashes? Do you ever carry them with you? Have you ever taken them out with you? If you did not choose cremation, tell us about the ways in which you carry your baby or babies with you, i.e. through memorial jewelry, t-shirt, trinket, or tattoo.

be our guest.

Submissions are now open for guest posts. We ask that you follow our guidelines for submission and read through the work on this site to get an understanding of the kind of writing we publish here. Work must be submitted using our submission form. This submission form will remain active until October 15, 2012, when the open call for guest post submissions will be closed. If you have any questions, please comment on this post, or send me a private email here. 

You can submit your essay for consideration here.  And thank you for being part of this amazing, supportive community.

balancing, act

I like Matthew Perry. Not, as many people of my generation might, because of his role on Friends, but rather because of his guest spots on The West Wing followed by his starring role in the sadly short-lived Studio 60 on the Sunset Strip. (If you love musical theater and good comedy, look up their second episode, The Cold Open. I still smile when I think of the number that is the namesake of the episode, the one they are working to the whole time. But maybe it's just me. Likely, even.) So it is not entirely surprising that even though I usually try to watch what I can in DVR delay so that I can fast forward all the commercials, I stopped and watched the ones NBC kept running for Perry's new show, Go On. The show premiers tonight, but the pilot episode has been sitting On Demand since Olympics, when they started running the relentless promotion.

Do I sound like the TV Guide up there? Sorry... I think I got that all out of my system now. So let's get on with the main event-- the show and what we think of it. Well, what I think of it for now. Though I am hoping that (provided my description doesn't make you want to destroy the TV rather than watch the show, which I hope it does not) you watch it at some point and chime in. Or vote early, vote often-- comment before you watch, comment after you watch. Heck, comment instead of watching.

Why, you ask, am I darkening your screen with a post about a TV show? For one, the main character, Perry's character, is grieving. We learn in the very first scene that his wife is dead and that he shows up back at work way before anyone is expecting him to be there. Shortly after that, he is told to get his loudly protesting self to group therapy. Grief sitcom, then? Why, yes, and I am not telling you this to forewarn you from ever going near the thing. Because when I began watching the pilot, I rather expected to end up disappointed if not outright hating the thing. What I got instead is a heaping bowl of recognition, with a side order of wait, are they going THERE? And yes, yes they did. As suggested by one of the promos you might or might not have seen, Perry's character really does stage a March Madness style head to head Pain Olympics tournament. No, really! What's even crazier, for me? It works.

If you know anything at all about the grieving me, you know that I hate Pain Olympics with a passion. In fact, I caught myself playing Reverse Pain Olympics. In the four plus years since I wrote that post, in this particular area of my world view, nothing changed. I still hate Pain Olympics, and I still think that nobody but each individual grieving person is allowed to say to themselves that it could have been worse. So how is it possible that given this world view, I am on board with the Go On's treatment of the subject?

I think that in a strange and completely unexpected way for me, what they do is actually affirming, not dismissive of each person's pain. First of all, they all agree. They all sign up, and they all accept the rules. Second, there seems to be an underlying and thick layer of good will. Those who fall in the earlier rounds are shown getting into the cheering on of their group mates. Even in "losing" a face-off, there can be recognition of the depth of pain. The character who is so distraught over the death of her partner that she can't pull out salient details to tell the story in brief to fit in the amount of time allotted is told that she is losing the bout "on technicality." That seems validating. And? they manage to do that without completely dismissing the dead pet character who "wins" on that selfsame technicality.

What was really profound to me, what sang to me with piercing clarity of a single string going on after all the rest of the instruments have faded, what I appreciated both as honest depiction and as a fearless move by the show's creators, were the brief vignettes of the characters in their own spaces, on their own time. I dare you to remain composed through the whole sequence, especially when they show us where the Pain Olympics winner's crown comes to rest. And may I remind you now that this is supposedly a half hour sitcom?  

So if, against my every intuition, this works on a sitcom, does it mean I just changed my mind about Pain Olympics in general? Does it mean I am about to offer sign ups for the blog cage tournament of doom? Hell, NO! What I now think is that the show creators have managed to find one of a fairly small set of circumstances where something like this might work. Which is why, I suppose, they are getting the big bucks.  I think that it works partially because the characters have suffered different losses, not all of them losses of people, and not even all of them losses of another being. As such, when they are showing off their wounds, they are presenting the general outlines of the wound, not measuring, if you will, the depth and circumference of the wound. In contrast, it seems to me that doing a thing like this in a community of people whose wounds are all the same general shape is a very bad idea. Mostly because comparing details of losses where the relationship between the lost and the bereaved is the same takes us perilously close to deciding whose lost loved one mattered more. And that is still something I can't abide.

The other reason why I think it works on the show, is that the "tournament" takes place within a defined period of time, in a small real-life community. In other words, it happens in defined space within a defined period of time. Live people interacting, in competitive spirit, yes, but also with compassion and humor and understanding, with other live people, most of whom they have known for some time. This is not something that is easy to ensure happening on the internet. People wonder by, reading the posts they stumble on. When we as readers react to an entry on a blog, something written in a particular time and influenced by particular events and emotions, perhaps even in response to particular events, for us what is said is very immediate, right now. But the person who said it may have changed their mind, may have even changed some as a person, and certainly may simply not be in a headspace to "go there," to engage the topic again. Which, if the post in question is of the Pain Olympics variety, might just leave a late comer reader feeling belittled in their loss instead of supported in good humor.

So I am still a firm "no" on unleashing Pain Olympics into the wild, but a cautious "yes, for now" on the new show. I hope, for their sake and for ours (because wouldn't it be nice to have a popular culture education on grief?) that they can sustain the tight-rope balancing act of being authentic and entertaining at the same time. And I really hope the weird guy's alone vignette doesn't mean he's a bereaved father. Not because we don't need to be represented, and not because bad things don't happen to weird people, but because if I had my druthers, I'd wish for us to be represented by someone painfully "normal" and average.

So what do you think? Have you seen the show? Will you? Are there other popular culture representations of grief in general or perinatal bereavement in particular that you find either particularly authentic or particularly offensively cartoonish?

lachrymatory

photo by Jenny Downing.

If I collected my tears in lachrymatory, placed them on dark wooden shelves, I would have a museum to missing you. Maybe no one would visit, but I would. Bottles of my weeping would line the walls, sun streaming through the windows. Fancy blown glass filled with oceans of grief, the tear bottles would refract the light, make prisms on the walls. Small beautiful points of your lack of being all around me, in every color except black, reminding me where you are not.

I quote the Bible to defend my mania. "You have noted my grief; store my tears in your flask. Are they not recorded in your book?"* David asks it of God on my behalf. Grief is sacred and should be hunted and gathered from all the dusty corners of you. Work it out of your muscles, squeeze it out of your eyes, dissect each event to find it, then catch the grief tears in delicate bottles with pewter stoppers. The Ancient Romans collected tears in jars, buried them with the dead. The Victorians poured them on the graves after their grief period ended. But I covet the tears I shed for you. Grief opened my flood gates.

Before you died, I only cried in anger. Those tears were more bitter than salty and I hated the weakness it revealed about me. When I was a girl, my father mocked crying. Even when I was very tiny, he would stand in front of me, and pretend to cry. "WAH WAH WAH. I'm so sad." He would laugh. Shamed, I would hide my face in terrible humiliation until I couldn't cry anymore. 

After you died, I could not control my tears. I dreamed about oceans and seas and salt water lakes. I searched for you in the water. One minute, I was holding you, and then I somehow let go. I could not find you in the waves. I'd flail my arms and search the blackness below me. You were gone. I lost you. (This was a nightmare.) I lost you again. I felt the drowning overcome me too, and woke in a panic, knowing it was my tears covering my face. I cried at night, and in the morning again. I cried all day. I cried at all emotion--sadness and joy in equal measures.

I appreciated that gift you gave me--the gift of crying. Now, I can cry when it is appropriate. I celebrate it, pour my tears out and let people see them. It is why I make the tears into art and history, a monument to my humanity, because without tears, I felt less than human.

The tears transmute sadness into adoration, emptiness into substance, absence into a being. It is the alchemy of grief. The hole that formed in the center of me when you died was the physical manifestation of absence. The hole itself became liquid, and flowed out of me, like blood. Tears are the blood of a soul wound. Keening is the physical work of missing and love. I put the curved bottle to my eyes, allow the tears to run into it. I wear the lachrymatory around my neck on a long black ribbon, to catch the sorrow that might overcome me in the market.

There is a point when you are supposed to pour the tears out, Daughter. Soak them into the grave, so you can taste my missing and know that it has the same flavor as love. But you are daughter-ash, and besides, tears are all I have of you.

Tears and ash and the memory of not being able to cry.

* Psalm 56:8 translation from the Oxford Study Bible, Oxford University Press, 1992.

What did crying mean to you before your child or children's death? What does it mean now? Were you comfortable crying in front of others? Alone? How has grief changed your ability to express your emotions?