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.

In the Shadow of the Moon

There’s dying from cancer and there’s living with cancer. There are two worlds, or more specifically, there are two sides of a single moon. It is out there, orbiting, changing our tides, causing domestic battles and inspiring young children. This moon lights my night. It darkens all my days.

Cancer is that strong: planetary, cold and omnipresent. I see its reflection in my morning coffee, in the face of my daughter, in the voice of my husband. Cancer exerts its own pull. These two sides, the living and the dying are in constant concert. They dance so closely you cannot tell one step from the other. They sway across the sky of my life, locked together, locking me in their pull.

Willa, today, is living with cancer. Willa, tomorrow, may be dying from it. We do not yet know which way balances will tip. I still do not know if there is a tip, if there is a balance. I think in my deepest places that cancer will do its work. That the moon is, in the end, uninhabitable.

But this is not defeat. This is life. This is the business of living with a power that you have absolutely no control over. We seek treatment, we pray, we bargain with the universe but the universe is not talking back. It keeps its secrets.

Willa has just completed her seventh week of treatment. In a month we will do another CT scan. We will assess the tumor once more, prod its corners, learn its secrets, face the damage done and ask one question. Can it be removed? If it can then we use a very particular language. We use words like, “cure.”

If the tumor cannot be removed, if it is wrapped around the vessels, if it has invaded Willa’s abdomen like a mass of snakes then we use another dictionary altogether. We do not use words like “cure.” No, that will not be made available to us. We will use words like “prolonging life,” like “palliative care.”

I had been making my adjustments. We drive into the city every Friday. Willa takes her medicine. Through the port they pour the poison and we pray. We wait. We laugh, we read stories, we play with toys. Because we make every minute count. I had found a new rhythm. I had worn a new path in the ground for my steps to follow. It was getting easier after discovering my own orbit. I could find it in the dark.

But the moon switched face. We learned this new fact. That in one month’s time we will be shown one of two faces. The living, or the dead. Only the universe knows, and again, the same stubborn silence.

This is what cancer does.

It is not the disease. It’s the surprises. It’s the cruelty in hope, in thinking, “well, we’ve got this figured out. It’s hard but we’ll get through it.” Because really, you may not. At least, not altogether.

Tonight the wind blows so cold the house moans. Lacking arms it cannot wrap its limbs around to warm itself. I feel that way too. Something has been taken from me that I needed. We live with cancer but cancer kills. We live with cancer but cancer changes. We live with cancer but cancer will exact its price.

The moon hovers in the frozen sky. Diamond-hard and winking its one eye. All my life has been frozen and smashed to shards.

But I still believe in the sun.