glass castle

Jessica is a mom to five, four in her arms and one in her heart.  After the loss of her infant daughter in 2007, she left the corporate world behind, vowed to soak up every living moment and found her writing roots again. I've been reading Jessica's beautiful blog for many years as she has grappled with life after the death of one of her triplets. You can find her wearing her heart on her sleeve at her personal blog Four Plus an Angel. —Angie

photo by Ayrcan

You have played that game, on the computer, the phone, in life, where the water is rushing through pipes and you have to turn the pipes in the right direction so they fit and the water can continue to flow.

You find a straight one, then one that turns to the right, then to the left, some that cross over each other and some that turn back the way they came and then you ultimately get to the end. Finding a piece that will connect it all, you realize that once it is placed, once you slide it into the correct position the flood will come. A path will have been sealed and the pressure that began at the start will find its way through your maze and seep out. It may trickle or gush or pour in buckets but once you have chosen to open gates so carefully guarded you will drown, you are sure of it.

So you don't complete the path, you leave that last piece tilted a bit to the right or jutting back to the left or you just keep picking up pieces and putting them back, knowing they are not where they should be and the pressure you have never released continues to pulse in the maze of your mind.

Life keeps rushing past even though yours stopped. You lost a child and with her went your optimism, your faith. You move and walk and breathe but not fully in or out or forward. Sometimes you want to scream at the world for continuing to spin and sometimes you want to whisper a question of how exactly they all manage to do it.

You are never fully anchored to the ground, your mind and your heart are divided between the earth and the sky and while you wish for a day to just cry, you are pretty certain that a day or a month or a year would not be enough.

Continuing to walk on ground left shaken, you tiptoe around cracks or stomp at the injustice and squelch the desire to pound your fists, because the walls might just come crashing down this time.

Grief and loss have become your glass castle, buried feelings and put off tears your pipeline that may never find land. You are suspended yet buried, trapped in a world of living without someone who should be. 

Does life after the death of your child or children feel like water rushing past you? Or rather, do you feel swept away with life? Do you feel untethered, or grounded? Jessica refers to grief and loss as a glass castle, do you see your grief as a building, and if so, what kind? 

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?

a girl on the train

I am going to tell you this story. I don't think I ever told it before.

 photo by .aditya.

This was a few years ago, and I was less than a year from Lucia's death, and I was pregnant again and coming home from a midwife appointment in the city. I was on the train. I was listening to Stereolab, holding onto a pole, staring out the window at graffiti and darkness passing underneath the city.

Then I saw her waiting for the train. I couldn't believe it. She walked onto the car, brushed past me. I smelled her without being weird. And she even smelled like I thought she would. She had dark hair and eyes like my husband. I couldn't stop staring at her. She was Lucia grown up. I mean, I thought Lucia could look like her. Then I guess I thought she was Lucia. She must have been twenty-two, or so. She looked athletic with wide shoulders. She wore orange and red, and carried a small purse crossed over her chest, nothing ostentatious. She checked her iPhone and listened to music and tapped her toes. She wore cool, sensible shoes. Clogs. Just like me. And a scarf around her neck.

I whispered Lucia's name, but she didn't budge. I turned away now and again for the sake of convention. But I situated myself so I could mostly stare at her while pretending to look through her, like she was a specter, which of course, she was. And when the train pulled into my stop, I stayed on. I stayed on the train to see her longer. To look at her face. Praying she would smile, or talk. She was my baby, but she didn't know it. I wanted to see the way her neck eased into her shoulder. It was a very adult part of the body, and Lucia was never adult.

My God. Lucia will never be an adult.

The fact hits me like I fell in front of the train instead of rode in it. Lucia will never kiss a boy. She will never go to college, or eat a peach or dance in a rainstorm. I will never run into her randomly on the train where we can ride home together. I sometimes forget the details of all she will miss in my missing. She will not wear sensible shoes on a Tuesday, or crazy heels on a dark New Year's Eve. She will not hate basketball, or love it, even. Lucia is missing everything too. This body, this youth, this sexiness, this life we lead when we are young and death is something conquered, not an inevitable destination. Lucia never left the station.

I have nothing left of her. A wisp of hair, and grief. If there was a tea to take away grief, I wouldn't drink it. It is all I have of her--grief. An astrologer said I ride the train through two worlds--the living and the dead. I will never fit in either place. It is my destiny, he said. By the alignment of the stars, and my birth time, and this life, he said, Remember,  you made this soul contract. You picked your suffering. To me, he said, it looks like you picked the express train to spiritual growth, which means this is going to be a hard life.

I want this grief, this dis-ease of the heart. The grief is love, I think. It is the aching part of love. It is the sad part of love. But it is still love. Grief ties me to her. Aching. Pain. Suffering. They are her calls to me, and in that way, the pain is sweet and beautiful. She is just a name now. To my children. They stopped asking me about her weight, and what age she would be. She is Lucy, the very sad story I told them one afternoon. She is a butterfly now, and maybe a ladybug. She is the dedication of a song, or a picture, but not a real girl. She doesn't ride the train, and listen to music. She doesn't wear her hair down. Not like the other sisters.

This ride home felt like a journey between two worlds. I am Orpheus, walking again with a lyre into the underworld, and it invigorates me. It is not unlike going into 8th Street station. It smells of piss and cigarette smoke. There is a darkness in me. One I finally see. If I embrace it, the astrologer says, I will be happier. Even way back then, before I knew about the darkness in me, I paid the conductor, and followed the girl that could have been my daughter. My Lucia is dead. Her ashes are lumpy (so is my soul.) I probably wouldn't recognize my little girl walking and talking like a twenty year old. After all, I never saw her live. But that girl on the train was her for twelve minutes. And I loved her like my baby. The girl gets off the train and runs down the stairs. I watch her disappear behind a wall. Lucia is dead again.

I cross the platform to the train going back to my home. It's only two stops. The car is empty. It is hard not to cry, so I don't fight it.

Have you ever seen a stranger who reminds you of your child? Is there any adult in your life that reminds you of what your child could have been? Who is it? Do you want to be close to them, or far away? What parts of your child's adulthood do you miss most? 

ghost town

I lost my daughter then I lost my friends. Not simply lost them. It was more like they drove me out into the country and told me to go run out in the woods for a while, they waited by the car.

"There, Angie, check out behind that big tree. A little further away. There is something shiny there. It is the internet and there are people on there whose babies died too."

"Over here? I don't see it."

"Just a little further. Go on now. Be good. I loved you once."

"Okay. I love you too."

And I watched their license plate become illegible in the distance. I walked back to town, determined to understand, only to find that they moved without a forwarding address. So, I suppose, they lost me.

photo by Denise ~*~.

Villages of friends were gone. I walk into the ghost towns of my past, sidle up to the bar. There is nothing left. I am not part of their tribe any longer. I slam the empty bottle of the long bar. They were drinking buddies, after all, not friends. For years, it made me angry. It made me angry that my daughter died and then I kept losing more and more and more until it was just me.

When it was just me, I saw you. And you. And you. And you. And you is beautiful and amazing. I told you all about the pain of losing friendships, and my daughter, and raising a daughter and every little thing about this experience. I listened to you talk about it too. We suddenly had a little boom town of the babylost. I felt normal.

Normal was all I ever wanted.

+++

Everything about my life changed after Lucia died, even though it looked exactly the same. And I feel attached to all those things I once was, like grape vines winding around the withered parts of me--my arrogance, my lightness of being, my inappropriate anger, my bravado, my aloofness, my old friendships, the confidence I had in my body. I cut the shoots, understanding that those bits of me are dead, but the tentacles grow back, clutching dearly again to something already gone. (I fear it takes the nutrients of my thriving, beautiful bits.)

In the weeks after, it became abundantly clear that I had no idea how to feel anything but anger and longing about her death. I was not emotionally equipped to handle the death of my daughter, except I had to handle it. It was awkward and painful. I clumsily talked to people, until I just couldn't do it anymore. I drank heavily. I watched the same safe comedies over and over. I was afraid to call friends and cry. I thought I would never stop--hysterical, uncontrolled tears. Keening. Misplaced anger. Blame. Fear. Blubbering. I heard the conversation before I uttered a word.

If I say I want to die now, you won't understand. You will think I am suicidal. You will call the authorities. You will take my only living child. I just don't know how to live this life without her. I don't know how to shop for groceries now that she is dead. I don't know how to make small talk. I don't know how to watch Law & Order. I don't know how to do anything.

And so, thinking they understood that about me, I expected them to call me. Surely someone calling a grieving mother would know what they signed up for if they called. It felt rude to call someone, even a very good friend, just to cry, even though, ironically, I longed for someone to call me in the early months and cry. I just wanted to be needed, not underestimated. I had once a month calls from a few friends, which were like tall cool glasses of water in a drought. I never cried during those conversations. I was almost maniacally positive about how fine I was doing. Then those petered away too. Mostly, it was silence broken by long, drunken tirade emails. 

Left to my own devices, I behaved badly. Oh, I behaved graciously here and there, but mostly I was angry, chaotic, impulsive, and afraid, lashing out at unsuspecting strangers in markets and yoga studios. The crying stopped eventually. The misplaced anger at other people slowed. I quit drinking. I figured out how to shop, and chitchat, and watch crime dramas. I learned how to feel all the emotions of grief, not just the loudest ones. I went to baby showers, and parties, and stopped expecting, or wanting, anything Lucia-related to be discussed. That took time, but it happened. The grief fog lifted. 

Being the me I was and grieving was fucking torture. So I changed stuff about me, like who I trust and when I trust and what I trust and how much I trust. I changed what I give and what I take and what I give personally and what I take personally. I changed what I complain about and what I don't.

I couldn't call those old friends after I changed. I didn't know what to say to them anymore. I wasn't over her death. I would never be over her death. But I learned to live with it. Time had moved forward. I moved forward. They moved forward. I missed so much, and they missed so much. Not many people stepped up. Those that did, stepped away eventually. I never called them to ask about the thing I should have been asking about--birthdays, illnesses, new jobs, old jobs, pets, boyfriends, girlfriends, new babies. When I came to fully understand that my daughter was never coming back, I came to understand that neither were my friends. I don't blame them anymore. I was a terrible friend--grieving and overly sensitive, impetuous and distant. I didn't and still do not understand how I could have been any better. I did the absolute best I could with who I was. Emotionally, I was stunted and small. And maybe they were too.

+++

I wrote because I didn't know what else to do with this ache in me. I couldn't speak it to my closest friends, so I wrote her birth story. I posted it on the internet. I thought that was everything I knew about her. I put it on a blog. Maybe someone will read it, maybe someone will understand. It was a flare shot into the night. Or a campfire, as we say around here.

Then I wrote about going to the market. Suddenly, people were there. Other grieving parents. I read about tears in the produce department. I wrote about my fears and anxieties and loves and revelations. I wrote like no one but babylost folk were reading, and sometimes, I wrote like they weren't even reading. I wrote with a kind of freedom that is both naive and slightly endearing. I found myself in the community I longed for since birth--supportive, honest, loving, compassionate. I made friends who appreciated my dark side, as well as the other parts of me. And I theirs. I had found normal.

Writing publicly about grief and pain and the darker parts of losing your child remains both incredibly comforting and absolutely terrifying. In most of my friendships that ended, the complaints centered around my blog and writing. My friends didn't like grieving, complaining, sad, disappointed Angie. 

You wrote about the friends! How unforgivable! You made it sound like we are terrible people! You write about your dead baby every week! That's too much! You make art and sell it! It is about the death of your baby! How terrible! How gauche! Everyone is sick of everything BABYLOST! It is unhealthy! It is wrong! We can't have it!

I never expected any friends to read my blog. It had nothing to offer them. It certainly had nothing to offer me for them to read my innermost, ugliest thoughts about the death of my daughter. I never imagined they would read, but they did.

I wrote because I had no idea what else to do. I wrote because my friends didn't call, and I couldn't call them. I wrote because I needed a community, to feel normal, to feel worthy of compassion. But it came with a steep price. 

Because I lost Lucia, I found something of myself tangled in the tumbleweeds of my emotional and physical defects. After everyone left, something dark and ego-filled, sensitive and critical, drunk and capable of sobriety, redemption, and forgiveness emerged. I forgive those friends, not because they have made amends, but because I have. I had to forgive my humanness. In doing that, I had to forgive theirs. I was grieving the death of my daughter. I did the best I could, and so did they. I sit with who I am now, a human being worthy of compassion. You taught me that. Thank you.

How have your friendships been affected since the death of your baby(ies)? Do you have a blog, or on-line presence? Do your before-friends know about your on-line community of babylost? Do they read your blog, or participate in your forums? How do they feel about it? How have you felt about being public, or not so public? Anonymous? 

Indelible

Who are we, now? Are we still ourselves, the people other people know, except, you know, grieving? Or are we changed forever, marked in a way that changes who we are fundamentally? Is there a middle path, a third option? I'd like to think there is, mostly because that is how I feel-- I am still me, but I am also marked.

I've often wanted to be marked in a physical sense too. To underscore, I guess. Sometimes also so that others could see-- though this desire is much less prominent these days, I've also from time to time wanted to make sure that others couldn't ignore my son. And a physical mark would probably make that somewhat harder to do. There are always the irreverent t-shirts, ones we've all fantasized about making and wearing. But fun as those would be, they are not permanent, and not exactly changes to our physical self.

This is likely why I am always at rapt attention when bereaved parents discuss their memorial tattoos. Some of these are true works of art, with layers of meaning and images in images. I wish I had the creativity to design something like this. But even then, I am so culturally conditioned not to get a tattoo myself (it's kind of a big Jewish deal, concentration camps and all) that I can't imagine breaking with that. So I admire the heartbreakingly beautiful work of others, and I think about how you really need to know the story already to see the entire story in the image. Which means that these are really for the parent, and not so much for the passers by.

So my body remains unchanged, except for what life does to it. And yet, I feel changed, I feel marked. I realize, too, that some of these changes are about my part of the story, and some are about A's, or rather about me reacting to his part. For example, the way pregnancy after is different, that's about me. That part is about what it feels like to be a mother whose child, whose baby, dies. And who then chooses to chance the fear and the anxiety and all the attendant crazy in hopes that another child might live.

On the other hand, the fact that I can't make myself fill out the part of my online profile with a cool local toy store that asks for children's birthdays because it numbers said children? That, I believe, is about him. It's about me knowing in my bones that he was here, and so I can't list the son who was born after him as "child 2." But at the same time I can't very well list the birthday of a dead kid under "child 2," not least of all because the store will then send me gift suggestions for him based on the age he should be for his birthday and various commonly celebrated holidays. And that? Might just break my heart.

So I am changed. But am I marked? Recently, I've come to believe that I am. Not in a way that others can see easily. The most striking of these little internal markings is the reaction I have to a very everyday thing-- supermarkets. Some of the food stores where I shop have flower sections right by the door. And I noticed that every time my eye falls on the fresh cut bounty, the first thought, and I mean the very first thought that enters my mind is essentially about which of the bunches on display I could take to the cemetery. This is more than five years later, so I think it's safe to say that this is not a passing thing. It is, in fact, so much a part of me now, so much not out of the ordinary for me, that it took me all this time just to notice. And I don't even go to the cemetery much now, so I think of choosing flowers much more than I actually do that.

When I did notice, it made me feel only a little sad. Mostly, mostly I think I was and am glad to have this. This change is no less indelible than the tattoo ink, even if less obvious to anyone else. In a weird way it's just nice to know that I carry my son with me all the time.

Are you marked? What are your markings and how do you feel about them? Are you glad to have them? Or would you rather not step on grief land mines as you navigate life?