All the Things That Died

Willa died. Then our car died. Then our phones died too.

A month after we were on Plum Island. It was hot but perfect and August. B. hadn’t seen me since all this and she took me around the rented cottage, pointing out all the things about it that fascinate a three year old. This lasted a while. She knew that Willa was dead. She knew that it was something very big.

At one point we were in a little room off the living area. They had stored their bikes in there. Out of the window you could see the driveway. She pointed at her car. “Our car died.” She looked at me. Her eyes widened. “Or car died too” I said. She had started to really circle the thing now. I knew it was coming. She had said the word.

We left the room. Moments later we were all in the kitchen, Colin and I, her parents. We adults were pouring wine and opening bottles of beer, salting fish to wrap in aluminum foil for the grill. B. said, “Willa died. And she’s not coming back.” Her eyes panicked. She had said it in such a strong clear voice. It was a phrase that had been worried into diamond hardness in her mind. It came out a gem, uncomplicated, sheer, ruthless in its beauty.

I nodded. “That’s right honey. Willa died.” B. ran to her mother’s legs. She buried her face in bare knees and cried.

I remember this all perfectly. I remember the stunted sound of the waves coming up over the dunes, the radishes next to the salt and butter, the phones ringing in other houses. I remember the light. Perfect summer night light, still warm, moving toward orange and pink. It would be light for a while yet which felt wonderful because it would be cooler but not dark. The dining room table was wood. It was beautiful and used and dark and covered with sand and wet and crumbs. I remember the smell of the salty fish. I remember the wine in the glass, water forming to slide down a stem I hoped I would remember not to snap in my fingers.

These are memories made after Willa died. I will not have any memories of Willa that are new. Only memories created around her absence. Colin and I have photographs, videos, toys, clothes, medical records. We have the crib, the car seat, the highchair. But we have been cut off from bringing Willa with us into our future. She won’t touch anything new.

Willa died. Then the car died. When we took the car seat out of it her sunglasses were revealed. That’s where they were. There were stains on the upholstery from the times her feeding tube came detached in transit. And we left the car. We bought a new one. She never saw the new car. There are no stains in it Willa made. It is our car now, Colin’s and mine. Not Willa’s.

Then our phones died too. Colin and I used our phones almost exclusively to take pictures of Willa and video. All day while he was at work in the city I would send him updates. So he could see what she was doing. Because she was so funny. Because she loved to be on camera. Because he missed her so much. Our phones were choked with images of her. Then they died. We had to buy new phones. She is not here to take photos of anymore. There is no new video. She never held these phones. She never saw all the wonderful things they could do. She would have wanted one. I know. She would have thought they were absolutely magical.

Someday we will try to sell this house. We will move to a place she never lived. Those walls will not echo with the sounds she made a long time ago. There will be no phantoms there of memories. She cannot touch the taps. She cannot bathe in the tub. She cannot make marks and stains and crumbs because she died. And she’s not coming back.

It scares me because there are my memories, the ones that live in my mind. And then there are the photos, the video, the pictures of her. Which is more reliable? The pictures start to invade the place memories live. Do I really remember that or am I making it up based on an image I have of her? Which is real? Which is more real? If all the memories become those of the static page, or the 30 second video, will I forget the more nebulous ones? Will they take over and destroy what cannot be corroborated?

I look at the pictures. There are only so many. There will only ever be a very specific number. That will be it. I can get no more. No new pictures will bring Willa into the future, will flesh out her life, will expand the time we have with her, will break the incredibly sharp limits of her time here. We only have so many. I am so scared of what that means. I am so scared of thumbing them to death. Of working the images over so many times that they take her away from me. They take away my full, rich, deep memories and replace them with this limited version. And again, that means that she really is dead and gone. She isn’t coming back. I can never have more. I will never have any more of her.

We just saw B. before Christmas. She loved the locket I was wearing, the one with Willa’s picture and a lock of her hair inside. “Willa’s hair was very short. Mine is long” B. tells me. “When she grows up it will be long. “ For a three and a half year old just because she may never come back doesn’t mean she doesn’t still have to live by the same rules. Hair grows.

And so it does, even on the dead.

Questions and Answers

And then there are the questions we must answer.

How do I answer the question, “Do you have kids?” Actually, I know exactly how to answer that question. The problem is what that answer does to the asker. What it makes them feel, how it makes an open face turn into a clenched fist. Never in my life have I seen this incredible transformation occur in people. And of course, I completely understand. I understand so much I don’t want to answer. I don’t want to see the terrible effect of saying, “I had a beautiful daughter named Willa, but she died in July.”

When you are pregnant a ripple gets sent out in your local air. It enters the consciousness of everyone around you. How can it not? You are a walking beacon of impending arrival. Days are counted down. Excitement builds. So when the baby is born everyone asks about it. It’s wonderful news.

When Willa was born she very unexpectedly had Costello Syndrome. And when the questions came one after the other, “how’s the baby?” we had to learn the answer. We had to figure out ourselves what it all meant. The answer was not so simple. The question brought up things people did not necessarily want to hear. “She’s wonderful, she has Costello Syndrome, but she’s a joy.” It seemed there were endless caveats. Nothing could be clean. You couldn’t just say, “She’s great!” That would have been a lie. Willa had major medical issues and would have for her entire life. Willa would have never lived independently. There were many things that Willa would never do, have, say. Of course none of this means anything now.

So you learn as the parent of a child with special needs to make it ok for the askers. You employ every trick, you sell it. You use humor. You master the blithe toss of heavy words. You work to assuage the fear, the embarrassment and the discomfort of others because you want them to accept your child. You only speak about the hard truths with those who can truly understand: the other parents, the other families. You do everything you can to protect your child from judgment, starting at an impossibly early age. You start immediately. You start with how you answer the question, “Oh! You had the baby! How is she?”

And it makes you stronger. You start to embrace the fact that it really is ok. You learn yourself to laugh, to be blithe, to remember that she is, in fact, a joy. And then life takes over and you are a family, like any other, just with extras.

We learned so much about how to answer questions. We learned so many answers. We built an arsenal of them. I could summon and toss off the right thing to say to the friends, the casual askers, the close acquaintance, the family member. We learned to make the clothes that fit. And we ourselves were comfortable in them.

Now Willa is gone. She died. She died on July 9^th. And there are people in this world who do not know this. So it happens, often, in small talk, in chat with strangers when they ask me, “Do you have kids?” This is an answer that I cannot make fit. This is an answer that I can find no humor for. I cannot sell this. I cannot make the asker comfortable with the answer. I cannot create a world wherein the words, “We had a beautiful daughter named Willa, but she recently died” okay. It’s not okay. It opens a chasm between me and the asker. I have literally had people turn around and walk away from me without another word. I have seen the most paralyzing fear shoot into the eyes looking at me. I have seen pure panic and the desperate wish that they had never asked cloud the faces of too many people now.

I find myself talking to fewer and fewer people I don’t know. I am just trying to avoid the whole exchange. Because, helplessly, I cannot say anything but the truth. There are no options. To deny Willa’s existence feels like a total betrayal of my daughter’s life, her spirit, the fact that she fought so hard to live. Anyone with that much will to survive cannot be ignored. I will not let her be, not even if it means I have to suffer these exchanges over and over.

I wish we still observed a period of official mourning. Not in any gothic, hair pulling, chest beating way. But in the quiet but completely disclosed and obvious methods of wearing black, of not observing holidays, of muting happy occasions out of respect for the incredible loss in our lives. I want to sit out happy times for a while. I take no joy in life now. There is no joy in a world without her. I know I will find it again. Life is stubborn in its pleasures. But for now, I want to sit quietly. I want to wear black. I want everyone to know so they aren’t surprised by my loss. I want people to understand why I am the way I am.

When you have a child with special needs you fight so much for understanding. You want people to know what it’s like to live the life with extras. You want people to know what is the same, how very much is the same. And you want them to know how big the differences are so that maybe people get why you act the way you act. Why you may be tired, why you may be more appreciative of something infinitesimally small. You want people to look at you, to see you, to have a postcard from your invisible cities. Maybe they can never live there themselves but they know someone who has traveled within them. And they have had a glimpse of their workings.

When you have a child who has died you ache for understanding. You ache for arms. You ache to feel like a person again. You ache for the times when you felt like you lived in the world. When your child dies you no longer live anywhere. You are lost.

But Willa taught me everything about learning new ways of living, of recognizing new things in people, and most importantly myself. Above all else she gave me a world in which I had to learn new roads to happiness, understanding and connection. I will use everything I have to get there again. And I hope that one day I will be able to navigate these questions and answers of my life with a peace that is a testament to my beloved girl.

The New World

I thought I knew about Invisible Cities. I had committed the roads between them to memory. I had the maps. I had walked the paths. I recognized the shifts in landscape, from the craggy sharp jutting shale, to the humid and salty marsh, to the long stretches that never seem to end. I traveled as a tourist. I lived in them for many years. I owned property. I fled. I set up shop. I bought postcards. I couldn't leave. I sat by fires.

I can see these cities perched on top of a flat disk, like the way we thought the world was shaped hundreds of years ago. I see my Invisible Cities like a platter, a feast. Heavy with every different person, laden with the challenges of a life with a special needs child, rich in the incredible bonds that tied everything together.

I have fallen off my world. A sea monster came and thrashed our ship. The masts smashed to splinters by cancer and death sending us reeling, toppling, charging over the side of the world.

But I am still alive, though she no longer is. I come to in darkness. My arms are empty. My heart is shattered. What was blood has dried to stone in my veins. She is not here. No matter how much I call her name. I am in a world without the sun, moon and stars. I have entered a place more invisible than I could have ever imagined. Ghosts are more real than this place. They have more life, more body, more to tell us about ourselves.

In here, (is it a box? an ocean below all other oceans? the space inside your mind where you lock the door?) time is measured in seconds since she died. The weather changes all around you but you do not feel it at all. My eyes are turning black from lack of light, the pupils pushing the iris out to the furthest reaches of a border, coloring all I see with black black black. I cannot see because she is not here. I cannot hear because it is too quiet. The only noise is the sound left over. It is the sound of absence.

When you are tumbled by waves, lost in the ocean, you must go limp. You must wait to breathe and then, seizing your moment, follow the bubbles of your life up to the surface, where you will be able to breathe again.

I’m going to drown here. So much of me will die. But I am new and do not know what that means. Because even dead I am still alive.

Willa's Eulogy; A Letter

Dearest Willa,

I am at our desk sweetheart, looking out the window to the grass beyond, watching your birds and your bunnies, your butterflies and your flowers. The house is very very quiet, a mouse house, where all the sounds are littlier and the light diminished because you are not here.

Daddy and I want to tell you some things angel. This letter is to be read out loud in front of everyone who loves you because with all the hearts beating in this room the message will be carried further, will reach you on wave after wave of love and memory and feeling.

When you were home you generated our days. You were our rising sun, our endless moon. You made such light that cars driving by could see it pour out these same windows I now watch your friends through. The floors reverberated with you. You traveled over them a great explorer; from the dining room to the kitchen in the red scooter to the basement you would request trips to, to be thrilled by the darkness and cobwebs. The walls talk about you still. The sinks cry from the faucets.

Willa we have never met anyone like you. You taught us how to see the world with eyes forever changed. You taught us to see our lives with hearts expanded. Every challenge you were set you ripped through as if it were paper. Every hardship, pain, hurt, discomfort, limitation you bore with a smile and then a kiss, always a kiss as if to show us how simple it was if we remembered to just love.

You loved so much it made your heart very fast. You loved so much I think it wore you out darling. You gave us everything and we are so very grateful.

Thank you Willa. Thank you for signing “daddy” over and over, for demanding I bring you upstairs to the studio to see him. Thank you Willa for saying “mama” out loud, even the day before you died. Thank you for learning the greatest mysteries were contained in your MeMe’s purse, for knowing there are few better sights that Pop Pop in a funny paper hat. Thank you for taking into your home all the people who came to care for you, to help you, to give you love and to brush your teeth and to make you sit, then stand.

Thank you for making us better people for knowing you, because we are now Biscuits. We are better for learning about true effort, about true hardship. We are better for learning about true love, true laughter. You broke the boundaries of what could have been an invisible life, a quiet life away from the typical. You threw away all the maps on us darling. Then you made the new ones. We were all fellow travelers on your journey, we explored with you the life that could be forged from stubbornness, desire, hope, curiosity and sheer, pure joy for living. You had a gift for living.

Today we are here thinking about you. We are remembering your birthday party, your dress with the cabbage roses. We are remembering Christmas, Friday treatment, Block Island, the waiting rooms of the hospitals. We are remembering your smile and we feel again your light, we feel it continue to change us, to give us new energy for living, to forever change the boundaries we think we live with. Willa you are and will always be our rising sun and our endless moon. Willa you are and will always be our most precious girl. We love you.

She's Gone

Willa Clementine Hunt
3-23-08 ~ 7-9-10

Pain Management

Willa and I share pain like a stone. Hers is a boulder of tumor, all nervy sharp edges and colored like the ugly part of deepest mines. Mine was once jagged as well: the pain of fear, the sadness of diagnosis. It settled in my heart. It sank down to the bottom. Over the past two years I have worried it constantly so that now my stone is worn smooth, glossy, oval, almost polished into a gem.

Willa’s continues to grow, it conquers new territories, it takes on her whole body, turning her entire being to marble. It is as if the cancer were some mythological creature, if you look into its eyes it will turn you to stone.

The pain in my heart has almost become another heart, one that sits next to the heart I once had. This new one beats heavier, faster, with more purpose. It hurts, all the time. But it gives me the strength of new blood in the veins, more blood, more ache that tells me my body is still alive.

This past week we discovered that Willa’s tumor is growing again. The chemotherapy is no longer working. Her pain is increasing. Her pain is growing over the back of her head, arching forward over her face, shrouding her in its final awful act.

We have stopped treatment. We met with hospice yesterday. Willa is home and here she will remain. We will do everything we can to dull the edges of her rocky last weeks. We will smooth the path, pushing away the pebbles and gravel, making slick shiny slate out of this last part of her journey.

I can hear the blood rushing in my ears. I can see the blood filling my eyes. I can feel the blood pooling in my organs, overflowing, drowning me in pain. The gem heart splinters, sending off shards to every corner, constant reminder, constant hurt.

Willa and I have shared everything and now, in this new place, I realize she must go forward without me, without her father she adores. She must emerge from her shroud of cancer, hurt, and fear into a place where she will finally be free of all that. A place where she will have nothing to anchor her to the earth. She will be chiseled loose from her limitations and can join the stars, those rocks in the sky, those hopeful far off worlds upon which we gaze at night, in cool air, in hopeful dreams.

Her pain will end but mine will become a forever part of me. I will wear it always, on my face, in my hands, across the years and into the deepest folds of my life. I will wear it like an anchor around my neck, the largest granite boulder possible. But I pray that the effect of this weight is that I may never forget anything of Willa, not her smell, her expressions, her laugh, the color of her hair, the way she uses her fingers to touch, her fight, her grit, her incredible transformative power. Her pain will be shattered so that I may bear it for her and make something of it, use it to remember all the beauty that existed because she was here.

The Invisible City of Lost Pieces and Gathered Light

We have been living in some dark places of late. The moonlight blown out by some stronger force of strength, the sun pounded to oblivion by a hand passing over our lives.

In this darkness I find myself in bits around the house. Walking up the stairs I may stumble upon an arm. Fingers are left in the refrigerator crisper. Ears sit on windowsills listening to the birds outside. I try to gather what I can find. I try to reassemble. But they all fall off again when I hear some latest medical news, when Willa is feeling ill from chemo, when I think about how much time we all have left.

And yet…

I find other things too.

I find rays of light in the flowerpots. I find glimmers of sun off water in the bathtub. I find beams sneaking under doors, around objects, flashing in corners of rooms, illuminating good things that stubbornly exist. Like Willa’s laugh, her shocking good humor, her signing “I love you” at the breakfast table unexpectedly. Then the room cracks open and light pours in like tidal waves. Waves and waves of sun filling the coffee cups, drenching our skin, blinding all sadness.

I squirrel it away. A little goes in the kitchen drawer. Some gets shoved into deep pockets. I eat a little. So that now in the places where something falls off a phantom appendage grows, born of light, determined to balance the dark.

And that’s what Willa does.

And that’s how it goes.