Molecules

Willa was in treatment for cancer eight months before she died. We knew she was going to die. We knew before we began treatment. We fought it: in our hearts, in our thoughts, in the choices we made for her care.

We fought the truth that she would die in everything we did over those eight months. I bought her clothes. I made plans for a family vacation to Massachusetts with all her grandparents. I found books I knew she would love when she was a little older. They did not stop the clock however. I have shoes in her drawer she never grew into. We never made it to Massachusetts. The books have pristine bindings and collect dust on the shelf. She still died, or I should say, regardless.

Before the morning of July 9^th I was haunted by what that day would be like. I thought about the possibilities, the scenarios, the furniture in the room, who would be home. How would she die? What would I do? Would I crumble? Would I scream? Would I just go dead? I wondered all the time about that day, what it would bring, how we would survive it. It consumed all my dark hours at night. I was haunted by my fear, my panic.

And then that day came.

It was a beautiful day, sunny, summer. The kind of day people wake up and are thrilled about for all that it promises. It was a Friday. And our daughter died right in front of us.

I remember thinking, “so this is it, it’s finally the day. “ But this means nothing. You don’t even know what’s happening. And you won’t for a long time. Sometime after the funeral, maybe a week or so after, that’s when you start to catch up. It’s the worst time. Because the pain is a kind of cushion. You go into a coma of grief that muffles what you really feel. You are barely even functioning. But there comes that time, about a week after the funeral, when your body starts to want to catch up. When the truth of what happened starts to come into focus. Then you’re really in trouble.

We were in Maine when that happened. When I am in times of worst pain I go to the sea. I grew up on the water and must have learned it there. When I am most in need of care I have to be where I can see the ocean, sit next to it, hear it, smell the salt and perhaps be reassured by its incredible, permanent power. This force that is so much larger than me.

This time the sea was no match for my grief. But I am glad we went. I was glad that when I was first feeling the truth of Willa’s death I was not home. I was in a place where I could just let it wash over me. Let everything wash over me, in wave after punishing wave. For me it had to be this way.

You realize that on the day she died there were still molecules in the air that had been in her body. That we were in a room filled with air that we were sharing. That her breath still hung about us, holding us. Its last embrace. Things still smelled of her. Her voice was still in the rooms. Echoes of her life immediate.

These molecules are all gone now. We have only ghosts of all these things. The loss is stupefying. All the preparation, the hope, the blind desperate hope of parents who do not want their children to die, the clothes that were never grown into, the books unopened, all the things that lay for us in a future we knew we would not have eat at me like cancer.

I live in Pennsylvania. There is no ocean here. I want to go to the sea again. I want to look at the water and talk to Willa. I want to feel the spray from the waves on my face and imagine that they are a kiss from my girl, salty yet sweet and powerful. So very very powerful.

The Invisible City of Lead Weights

There used to be a lightness to me. There were even moments when I became a dirigible and viewed the world from a lofty effortlessness that came with happiness. Things used to be easier for me, like walking, like moving my arms, like breathing and showering and eating and talking. Now when I speak my words fall on the ground like stones as soon as they leave my mouth. Attached to my arms, my legs, my fingers and ankles are lead weights. I wear a weighted jacket that compresses my chest when I lie down. I can feel it crushing my ribs. It makes it hard to sleep.

Where once there was a relationship with gravity that allowed for the occasional flight, now there is only the pull of the earth, holding me firmly in place. My feet have to be peeled off the ground. It takes great effort and so more often than not I just stand in one place feeling myself sink into the floor, the dirt, the sand. There are deep impressions of my feet in front of the sink, in front of the stove, in the shower outlined in cracked porcelain and just inside the door of Willa’s room. I stand in these places and cannot move.

I used to see the world around me, but my eyes are too heavy now. The tears that constantly run from them are pieces of marble. You hear them clink clink clink in the sink, you see them collect in a concave depression on my pillow. They blur all vision.

I used to see people who stood in one place. They looked like lampposts, gravestones, markers for other people to navigate around. They just stood there, in front of the laundry, at the outskirts of a party, at the dinner table. I could not then see that they too were held down by lead, burdened with immeasurable weight. Just trying to remember how to untie the strings, or, trying to discover how to make the knots tighter.

In the Invisible City of Lead Weights we are never alone, though we have no idea of this. Our thoughts do not travel, and none come to us. The air around you grows stale without use. From overhead comes the faint sound of propellers and you just hope that one day you will be able to fly again.

Heart Walk

Today I take a walk in my heart. Crawl through vena cava and ventricle. Revisit all the old places. I feel my love for you all around. It pounds in my ears. I take a seat in the chamber and watch the scenes from our life as they play out across the walls. Blood cells slip through my fingers. In the air they flit and hover like ash, or petals. Remember when you were inside me my heart was right above you, an apple on the bough? Your heartbeat was the first thing we heard, no, saw of you. The senses are befuddled translators in such subterranean things. I close my eyes and let the atria beat out the code. It goes over lines made of vein, filled with ash and petals. I must be careful. I am a platelet. If I stay too long I will seal something that needs to be kept open. But you, you are my heartbeat, insisting you are still here.

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.