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.
Saturday, February 6, 2010
Tuesday, December 29, 2009
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.
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.
Sunday, December 13, 2009
The Invisible City of the Kidnapped
I have been shanghaied. Taken and stored in a terrible stinking rotten crate aboard a vessel I have not had the courage to name. I have waited for this since Willa’s diagnosis. We knew it was out there, on the high sea, waiting to come in on some moonless night to snatch us away and hold hostage everything we have built up as a wall of defense. We are defenseless. Willa has cancer.
Right after my last post Willa had her routine ultrasound. The Radiologist came into the room and said, “the baby has a large mass in her pelvis.” Again, the darkened quiet room. Why do we always get the worst news in such places? There was a television on in the background playing a cartoon that Willa has no interest in. She smiled at the doctor. She waved. She laughed.
I knew what it was, the nails were hammered into the crate, we were loaded onto the ship.
Next followed the storms of diagnostic testing, the bone scans, the biopsy, the CT, the bone marrow pull… We were tossed about becoming bruised fruit at the feet of those with power. We had word quickly. Rhabdomyosarcoma, Stage III, to date inoperable.
We were transferred to another vessel. Willa will have a year of chemotherapy. Every week we now go to CHOP and she has poison poured into a port by her collarbone. She smiles. She waves. She laughs. My crate has been thrown overboard. I am barely floating, more submerged in a reeking ocean of foreign garbage and dead fish.
But still, I purse my lips and lift them above the water line inside my new home. I keep breathing. I have learned so many lessons of survival from Willa and that knowledge is being tested most acutely now. I have to hope that someone will find me out here. The waves will push me into shore. That some strange ocean animal will befriend me and share what they know of this place. I will gain new sea legs. I may grow gills to breathe.
In the hospital my heart breaks for the other parents. They never saw this coming. They had perfectly healthy typical children and then were given such news, their child has cancer. They wander about the halls with crazy eyes. They cry when pouring their coffee. They mutter under their breath and the smell of fear is everywhere on them. I smile at them as much as I can. I speak when they can hear me. I look them in the eye and try to offer calm because I know that fear. I am just more prepared for this. For us it was a fixed mark on our permanent horizon. We hoped to avoid it but now we are here.
Willa has lost her eyelashes. Her hair is following and then her eyebrows will depart too. She looks different. Her coloring is profoundly altered, her stomach swelled with tumor. Her belly button pushed out, the skin taught and shiny and horribly horribly wrong. But the weeks have passed. The medicine is running like wildfire through her veins and the mass that spelled such tragedy is shrinking.
Our goal is to remove it as soon as it is small enough. She is too young, too delicate for radiation. The protocol is chemo and extraction and more chemo. This ship will be at sea a good long time. This is my message in a bottle. I had feared saying these things out loud. I feared the permanence of writing them down, of thinking them, of sharing because when others read, hear, see, it is real. Totally, unchangeably real.
Willa has cancer.
Will we ever know the feeling of solid ground? Will she ever have a release from all this hurt? Will we continue to have the strength? Can my fingers web? Can my skin grow scales? Can my back allow a fin to break through by which to steer myself in the right direction? Or will we die, locked in these crates, the worms making a deep-sea meal of our hopes?
We are truly invisible now. No one can see us. But hearts beat in these boxes. Their rhythms will make the waves. We will make our own weather.
Right after my last post Willa had her routine ultrasound. The Radiologist came into the room and said, “the baby has a large mass in her pelvis.” Again, the darkened quiet room. Why do we always get the worst news in such places? There was a television on in the background playing a cartoon that Willa has no interest in. She smiled at the doctor. She waved. She laughed.
I knew what it was, the nails were hammered into the crate, we were loaded onto the ship.
Next followed the storms of diagnostic testing, the bone scans, the biopsy, the CT, the bone marrow pull… We were tossed about becoming bruised fruit at the feet of those with power. We had word quickly. Rhabdomyosarcoma, Stage III, to date inoperable.
We were transferred to another vessel. Willa will have a year of chemotherapy. Every week we now go to CHOP and she has poison poured into a port by her collarbone. She smiles. She waves. She laughs. My crate has been thrown overboard. I am barely floating, more submerged in a reeking ocean of foreign garbage and dead fish.
But still, I purse my lips and lift them above the water line inside my new home. I keep breathing. I have learned so many lessons of survival from Willa and that knowledge is being tested most acutely now. I have to hope that someone will find me out here. The waves will push me into shore. That some strange ocean animal will befriend me and share what they know of this place. I will gain new sea legs. I may grow gills to breathe.
In the hospital my heart breaks for the other parents. They never saw this coming. They had perfectly healthy typical children and then were given such news, their child has cancer. They wander about the halls with crazy eyes. They cry when pouring their coffee. They mutter under their breath and the smell of fear is everywhere on them. I smile at them as much as I can. I speak when they can hear me. I look them in the eye and try to offer calm because I know that fear. I am just more prepared for this. For us it was a fixed mark on our permanent horizon. We hoped to avoid it but now we are here.
Willa has lost her eyelashes. Her hair is following and then her eyebrows will depart too. She looks different. Her coloring is profoundly altered, her stomach swelled with tumor. Her belly button pushed out, the skin taught and shiny and horribly horribly wrong. But the weeks have passed. The medicine is running like wildfire through her veins and the mass that spelled such tragedy is shrinking.
Our goal is to remove it as soon as it is small enough. She is too young, too delicate for radiation. The protocol is chemo and extraction and more chemo. This ship will be at sea a good long time. This is my message in a bottle. I had feared saying these things out loud. I feared the permanence of writing them down, of thinking them, of sharing because when others read, hear, see, it is real. Totally, unchangeably real.
Willa has cancer.
Will we ever know the feeling of solid ground? Will she ever have a release from all this hurt? Will we continue to have the strength? Can my fingers web? Can my skin grow scales? Can my back allow a fin to break through by which to steer myself in the right direction? Or will we die, locked in these crates, the worms making a deep-sea meal of our hopes?
We are truly invisible now. No one can see us. But hearts beat in these boxes. Their rhythms will make the waves. We will make our own weather.
Friday, October 16, 2009
Prayer
The night we sat in our kitchen, the words Costello Syndrome ringing in our ears, deafening, insistent, inevitable, I said to Colin, “I think these are the moments when it helps to be religious. To feel like there is a reason, a purpose for this. That there is a God that chose this and all we have to do is have faith.” But we are not. And there was to be no such reassurance. We would find that somewhere else.
Not that religion gives pat answers. Not that God cannot be argued with, challenged in his wisdom, asked for more. Children are born with syndromes, medical anomalies, challenges and futures we could never have imagined, and there is nothing you can do about it as a parent. The helplessness is absolute.
Over Willa’s 18 months we have had many people tell us they are praying for us. Many people we do not know. Many people we have never met. Word has spread in circles we have never ventured that there is a child, a family, that needs help from God. Candles are being lit.
I am so thankful for all of this. I have found myself saying my own prayers, not to anyone in particular but to whomever may be listening. It can’t hurt. I haven’t found religion in all this but I have found that there is a beauty in prayer, in the way it connects people. To know that someone closes their eyes and offers up hopes and gives energy to our daughter, an act of kindness that makes us less invisible.
So many ecclesiastic words are bandied about in regards to children with special needs. They are “angels” they are “gifts from God” they are going to teach us lessons about love, forgiveness and strength. But that doesn’t tell me why I had a daughter like Willa. I had learned many lessons previous to her arrival, believe me. I know a lot about love, forgiveness and strength.
For me, seeing her Costello Syndrome as a statistical short straw is liberating. We have no burden from this “gift.” It just happened. It just happened to us. And so we have to find a way of dealing with it.
And still, I pray. I pray for all the other families I see now who can no longer be invisible. I pray for the families who are about to be rocked to their very core. I pray for these children that their lives be happy. That they find acceptance and love and are seen in turn by eyes who will see beauty and illness, despair and deep contentment.
I pray for us, I pray for Willa, I pray that someone is listening, I pray that if I am meant to learn more lessons I am worthy of the extra knowledge and will not fail the challenge of my life. While I cannot find peace in religion I can find peace in myself. In the mash of all I feel and hope for and am confused about I do think that there is great purpose to all things. I’ll light candles too, something to light the dark and perhaps enough to see by.
Not that religion gives pat answers. Not that God cannot be argued with, challenged in his wisdom, asked for more. Children are born with syndromes, medical anomalies, challenges and futures we could never have imagined, and there is nothing you can do about it as a parent. The helplessness is absolute.
Over Willa’s 18 months we have had many people tell us they are praying for us. Many people we do not know. Many people we have never met. Word has spread in circles we have never ventured that there is a child, a family, that needs help from God. Candles are being lit.
I am so thankful for all of this. I have found myself saying my own prayers, not to anyone in particular but to whomever may be listening. It can’t hurt. I haven’t found religion in all this but I have found that there is a beauty in prayer, in the way it connects people. To know that someone closes their eyes and offers up hopes and gives energy to our daughter, an act of kindness that makes us less invisible.
So many ecclesiastic words are bandied about in regards to children with special needs. They are “angels” they are “gifts from God” they are going to teach us lessons about love, forgiveness and strength. But that doesn’t tell me why I had a daughter like Willa. I had learned many lessons previous to her arrival, believe me. I know a lot about love, forgiveness and strength.
For me, seeing her Costello Syndrome as a statistical short straw is liberating. We have no burden from this “gift.” It just happened. It just happened to us. And so we have to find a way of dealing with it.
And still, I pray. I pray for all the other families I see now who can no longer be invisible. I pray for the families who are about to be rocked to their very core. I pray for these children that their lives be happy. That they find acceptance and love and are seen in turn by eyes who will see beauty and illness, despair and deep contentment.
I pray for us, I pray for Willa, I pray that someone is listening, I pray that if I am meant to learn more lessons I am worthy of the extra knowledge and will not fail the challenge of my life. While I cannot find peace in religion I can find peace in myself. In the mash of all I feel and hope for and am confused about I do think that there is great purpose to all things. I’ll light candles too, something to light the dark and perhaps enough to see by.
Wednesday, September 2, 2009
Thursday, August 27, 2009
Talking To Myself
The other night, like many others, Willa and I were in the kitchen making dinner. She sat in her bouncy seat on the floor while I, in my culinary habit, walked a mile in between trips to the sink, the stove, the refrigerator in a distracted yet somehow successful rite of nightly passage. At 6:00 pm Willa gets dinner 1 (dinner 2, the sequel, follows at 9:00), and so while she is happily marooned in her seat she is being fed via g-tube. I hang her enteral bag on a cabinet knob and the pump does its work from the floor. Willa gets dinner and I make dinner in our family’s version of normal.
As I go about all this I keep up a steady stream of chatter. I tell Willa what I am taking out for dinner. I tell her that I am opening the box. I tell her that Daddy particularly loves his vegetables and won’t it be wonderful when one day you dear baby will be able to share in this meal we will soon eat. I go on and on.
It reminded me of people I saw in my pre-Willa days. People on television: documentaries or human interest stories about illness. It reminded me of something I had seen in coffee shops or hospitals or bus rides. I remembered all these women talking to children who did not respond. They were either incapable of it for cognitive reasons or medical ones. The eyes of the children seemed vacant to me. The exercise immensely depressing. I thought how incredibly sad that these women must talk to themselves, all day, all alone, pretending that their beloveds can hear them.
I stopped dead in my tracks in my kitchen. I looked at my daughter. She looked at me. I realized that we had been having a conversation, not a mommy monologue. As I had been opening the olives, turning on the water, being careful cause the stove is hot! she responded back in kind. She laughs at me. She listens. She is accumulating knowledge. She is feeling close to me, and most certainly I to her.
What I had never allowed for in my vision of those “poor mothers” was that they were having conversations too. There is no talking to oneself. If the mind be slower, if the body feeble, if the eyes cannot quite follow the linear progression of words in sentences wrapping all around it does not mean that there is no one there. They are there. In a look come the words. In a tremor of the body come the responses. In sighs and breaths and winks and tilts of heads paragraphs bloom.
I think of people catching us through night windows. A mother talking to a daughter who cannot respond and I wonder what they might think. I hope they can see how much fun we are having. How much we have to share. And I am now very much comforted by the fact that in kitchens all around us such wonderful discussions are being had. We are all connecting and connected.
As I go about all this I keep up a steady stream of chatter. I tell Willa what I am taking out for dinner. I tell her that I am opening the box. I tell her that Daddy particularly loves his vegetables and won’t it be wonderful when one day you dear baby will be able to share in this meal we will soon eat. I go on and on.
It reminded me of people I saw in my pre-Willa days. People on television: documentaries or human interest stories about illness. It reminded me of something I had seen in coffee shops or hospitals or bus rides. I remembered all these women talking to children who did not respond. They were either incapable of it for cognitive reasons or medical ones. The eyes of the children seemed vacant to me. The exercise immensely depressing. I thought how incredibly sad that these women must talk to themselves, all day, all alone, pretending that their beloveds can hear them.
I stopped dead in my tracks in my kitchen. I looked at my daughter. She looked at me. I realized that we had been having a conversation, not a mommy monologue. As I had been opening the olives, turning on the water, being careful cause the stove is hot! she responded back in kind. She laughs at me. She listens. She is accumulating knowledge. She is feeling close to me, and most certainly I to her.
What I had never allowed for in my vision of those “poor mothers” was that they were having conversations too. There is no talking to oneself. If the mind be slower, if the body feeble, if the eyes cannot quite follow the linear progression of words in sentences wrapping all around it does not mean that there is no one there. They are there. In a look come the words. In a tremor of the body come the responses. In sighs and breaths and winks and tilts of heads paragraphs bloom.
I think of people catching us through night windows. A mother talking to a daughter who cannot respond and I wonder what they might think. I hope they can see how much fun we are having. How much we have to share. And I am now very much comforted by the fact that in kitchens all around us such wonderful discussions are being had. We are all connecting and connected.
Wednesday, August 12, 2009
Hospital III or The Invisible City of the Wait
I walked her to the operating room in my arms. The sedation made her body heavier, denser, more like muscle moving through deep water: uncoordinated, sleepy. When I handed her over she reached her tiny arms up for me. My body snapped. And then, the long nervy wait for her release from that room, the place we were not allowed to follow her.
Then, for us, life in the Invisible City of the Wait. It is a place where time can only be time. It does not pass. It does not stretch. It sits upon the clocks, choking them, smothering all life out of the moving hands, the numbered faces.
You pass through a world of seaweed, kelp forests of jangly nerves, deepest underwater fears, clingy hopes and darkness. You cannot tread in these waters. There is no footing either. All senses are sharpened points. Every sound could be news. Every person could bring word. Every sight is hope of report.
But the answers cannot come. They cannot swim. Somewhere on a foreign beach, past the twisted morass you are locked in, they are baking on a beach, bleached by the sun, taking their place amongst the shells, the driftwood, the matte shards of sea glass.
In the Invisible City of the Wait you drown, choke, are clogged, wrapped up in your fear, your desperate need for your child to be alright. But they don't know this. Because while you are trying to breathe, to fight to the surface, to see the sun again through the blackened filament of panic, you appear to all others to be "holding up well" perhaps a little "nervous." You drink coffee, you pace, smile at the nurses solicitously. There may be magazines involved. Because in the end remember, this city is invisible...
Then, for us, life in the Invisible City of the Wait. It is a place where time can only be time. It does not pass. It does not stretch. It sits upon the clocks, choking them, smothering all life out of the moving hands, the numbered faces.
You pass through a world of seaweed, kelp forests of jangly nerves, deepest underwater fears, clingy hopes and darkness. You cannot tread in these waters. There is no footing either. All senses are sharpened points. Every sound could be news. Every person could bring word. Every sight is hope of report.
But the answers cannot come. They cannot swim. Somewhere on a foreign beach, past the twisted morass you are locked in, they are baking on a beach, bleached by the sun, taking their place amongst the shells, the driftwood, the matte shards of sea glass.
In the Invisible City of the Wait you drown, choke, are clogged, wrapped up in your fear, your desperate need for your child to be alright. But they don't know this. Because while you are trying to breathe, to fight to the surface, to see the sun again through the blackened filament of panic, you appear to all others to be "holding up well" perhaps a little "nervous." You drink coffee, you pace, smile at the nurses solicitously. There may be magazines involved. Because in the end remember, this city is invisible...
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