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.

The Invisible City of the Long Long Fall

There is that point as you are falling down the hole when you stop screaming. When the terror, though at your fingertips, recedes long enough for you to realize that you have not yet been smashed to a million pieces at the bottom.

That you cannot even see a bottom.

That you are still falling.

That you may be here for some time.

I am in the invisible city of the fall. In this darkened tunnel I can see nothing but a faint dimness ahead. It is not a light. It is the death of light. Or at least what light looks like when it is dying. And yet, and stubbornly yet, I am still alive in here. My heart beats. I can taste my last meal in my mouth. Should I be able to scream I would hear my voice. I know that the world exists up there from where I fell. People walk the sidewalks. Animals prowl the back alleys. Babies cry at night and stars, oh the many stars are out. I just no longer am with them.

Willa has a mysterious constitution. We hope we may have another year with her. I am infinitely grateful for this. A year at least! Of course there are the endless caveats soaked in legalese. We really have no idea. She has always, from her beginning written her own story. But we can hope.

I have learned some interesting things about the limits of one’s strength. I have learned some interesting things about the duality of a daily existence falling into an abyss. Endless falling, no impact. That it takes energy. That there is endless energy involved in continuing to breathe. That it takes energy to remember that the end is not yet here. (Don’t rush it by thinking too much about what is coming. It will be here soon enough.)

I have learned that it takes energy to watch television with your child instead of placing them in front of a sunset, an Easter egg hunt, a dolphin breaking water. It takes energy to give yourself liberties. It takes energy to allow for bathing, sleeping, dressing; the business of life.

Because Willa is not going to die tomorrow, only sooner than we would have ever wished. And in the meantime, we fall, but the heart still beats, we still hear the voices of those around us, we still have to eat, dress, rest and allow for all the weakness brought forth by the incredible energy lost in this battle to keep it all together.

I am falling down and down. Deeper and deeper into a world I never hoped to explore. But the more I fall, the further I get, the more I realize that it is a warren of interconnected tunnels here. There are wires lining the earthen walls, connecting to other wires in other tunnels, in other free falls. There are caverns connected to caverns reserved for parents struggling to maintain life while death surrounds them. There are the sounds of other screams down here. There are silences shared between parents who are falling parallel to each other, in our own invisible ways. We may not be able to see each other but the deeper I fall the more I feel them out there. The more I feel you all out there.

There is that dim light growing more distinct every day. The light that signals an end to all this. But it is still a long way off I hope. I hope for time. I hope for mercy. I hope for all of us to survive the fall.

When There Are No Words

Yesterday we found out that Willa will die from her cancer. The tumor in her abdomen, the mass that has been growing and receding but all the while doing its terrible business in her tiny body has wrapped itself around the major blood vessels of her left side. If we proceed with surgery she will lose her leg, probably her bladder, and without seeing with the coldness of the eye who knows what else. The tumor will take her life.

I have just begun today to say these things. I have just begun to feel the words in my mouth. To taste the filth of them. To spit them out in disgust upon tables underneath harsh lights. These are the most real words I have ever said. But on the examining table it amazes me how little they seem. These words are so small. Even “cancer.” Just two syllables, lower-cased, a mark on the page.

They mean nothing compared to what I feel in my heart, in my stomach, across the scar on my abdomen, the scar where Willa emerged, the scar she would have a mirror image of should she have been able to have surgery.

What grew inside of me was pure life and what grows inside of her is pure death and there it must stay locked away, trapped, all-powerful and final.

There are words that have not been born. Made up of letters no one has ever seen. There is an entire vocabulary that parents know who have lost a child. I think that is what we see behind their eyes. It’s a language I have not yet mastered but I will. It is a purer expression of that it feels to lose your baby. To lose the life you made, the life you put all your life into.

I have no ability to express what I feel. I don’t think it is ever a thing you can share. It is more invisible than our most lost places. It is more invisible than anything I have yet experienced.

When you have language you can express your fears. You find ways of telling people what you are most terrified of and by these sentences you build roads, you make pathways, you fashion worn trails back and forth from mouth to ear, rivers of understanding flowing parallel to them. You make whole worlds of connection and hands holding, reaching out and making purchase.

With no language to do this I am scared. I am scared of the questions I have locked in my heart, my stomach, my scar. I am scared of asking these questions in words that do not express true meaning, my truest intentions, accuracy of feeling. They do not sound right as:

When Willa dies so much of me will die with her, will I have anything left?

Will I still be a mother?

Will I learn to live without her?

Can I forgive myself if I do?

If you drive past my house today you will not see anything amiss. It is not draped in black. It is not on fire. Tomorrow I will go to the pharmacy and pick up Willa’s prescriptions. I will not be dressed in black. I will not be on fire. When I drive home I will steer myself true. I will return to the driveway. I will not drive into the house. I will not set the world on fire. But inside me everything is black, everything burns, the world is ashes and there is just no way to say it, any of it. Not what it feels like. Not what it means. Nothing.

There are just no words.