Abigail's Journal
 
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My Earlier Letters from 2011 to 2012
 

February 10 2013

Dearest Charlie,

I am sorry I havenít written in a long time. I havenít written because there are few new themes to write about. It has been 21 months now since your diagnosis and we still remain in shock. There is no moving through stages of acceptance with this one. Yet we are not fighting for your survival either. This is what continues to hurt most.  Living without hope. Living with the finality of your terminal illness. Yet you look perfectly well. Youíre smart beyond your years and growing every day. You are deeply loving and affectionate, often you wake me up by kissing me on my lips and stroking my face (and when you are being woken at 5am it makes all the difference being woken in this way!).

And you are so very funny - and definitely cute. Amidst living with the heartache and heart wrenching pain of your illness, I find myself smiling and laughing with you all the time. When looking at you play and chatter on, my heart pounds fast and loud with love.

 A month ago I did have hope, just for a few seconds.  It felt blissfully wonderful and painfully scary. Iíll try to explain.

In December you had an MRI. You have double vision all the time now and every few days tell me you have pain in your legs.  So we thought the scan would show that the tumor had grown. But that MRI showed no growth.

When the doctor put two comparison scans up on her computer, your Dad and I looked at the two brain images on the screen. For a moment we thought the tumor had grown. We saw a larger black oval hole on the more recent scan, but quickly realized that this was a ventricle. And it was larger because less pressure was pushing on it. So did this mean the tumor had shrunk? It had not.  The doctor reported no change in the overall tumor size.

Yet when the doctor said with a smile that she had no explanation for your symptoms and that it appeared that there was less pressure, I allowed myself to hope, and ask "what if?".

What if this tumor doesnít kill you? What if you go to Kindergarten next year? That hope felt wonderfully soothing and pleasantly unfamiliar. Then I felt panic and fear about you living.

I know he tried, but I donít think Daddy really understood this range of emotions. You see, Charlie, if you live, I have to change the way I am parenting you. I have to make sure you brush your teeth twice a day, at least once a day every day would be good. I have to give you clear consequences for your actions - you have no idea what a Ďtime-outí is. And maybe you should not be sleeping in our room anymore - itís so unfair to Esther and she complains about it all the time. And then I have to change your preschool lesson plan too. I havenít really pushed your ABCís or 123ís and your fine motor skills are not so good and you find it difficult holding a pen and coloring-in and I never really challenge you.

And your imagination is so beautifully wild. We spend hours together deep in fantasy play. So maybe itís time to be more practical with the hours we spend together. This morning since 6am you have been in full-on pirate mode. Pirate outfit, making pirate maps, hiding pirate treasure, making pirate lunch (in case others are wondering, pirate lunch is normal food but all individually wrapped with paper towel and purple ribbon!). And then there is the worry about the radiation damage ÖÖyou are very short for your age, so did it harm your physical or cognitive growth?

But what I have been teaching you is love. Sometimes I like to think that if I just love you and hug you enough maybe I can keep this tumor at bay. I have this silly (but only somewhat silly) belief that a loving touch might keep a person well.

And then there is the more serious topic of your individualized preschool curriculum. Slowly, gradually, but at every opportunity I am introducing you to concepts of life and death. When leaves fall, when flowers die, when that dead squirrel is in our path, I donít walk away but use these moments to prepare you and teach you. Not long ago we watched Charlotteís Web. As soon as you caught on that Wilbur was going to be killed you began to cry. Big huge tears rolling down your face. But I did not turn off the TV. You sat in my lap and we talked about Wilbur and Charlotte and the different reasons why their lives appear to be coming to an end.

Oh dearest Charlie, can I tell you a secret? Please donít tell Daddy because I know heíll worry about me. I know at some level that I do not have hope. I know all about this bloody tumor, and how there really are no long-term survivors.

I can talk calmly about when you die to others. And itís okay when I say it. When someone else says it as a rigid fact - that you will die soon, a wave of nausea comes over me. It feels like a punch in the stomach of my soul. Oh Charlie, I donít want to give you up!

Yet I see signs. Oh Charlie, shit -- I see it coming. I see that bloody tumor beginning to hurt you. And again there is no one to tell, and no one to make it better for you for us.

Love
Your Mum

 

To Charlie --  while in hospital
August 2011

Dearest Charlie
 
My little boy. I am so sorry. I am so sorry I cannot protect you. We have started fighting this battle together. But it is you my little soldier that will have to fight this to the end.

I wish we did not know the outcome. I wish we could not peek into the future. But we have had a peek. We have heard the stories of the other little soldiers. And itís not good, my love.

It still does not seem real, Charlie. A piece of me still does not really believe what they have said. Surely you are different from those other little soldiers? Those other little soldiers that so bravely fought their bloody battles. Just like you they did not know they were going into battle. Just like you, they will have lost their battles before being giving a fighting chance to win. This is the piece that I find so utterly wrong -- so wrong that we know we have lost the battle before the fight has really begun.

I wish I could protect you from the pain to come. I wish you could have my life instead. But it doesnít seem to work like that. And now I must stay here to protect and look after Esther and Daddy. For soon they will need me even more.

But until that day I now must prepare you. Prepare you for a long and painful battle that you will surely lose.

The first step in the preparation is to coat you in love. A thick armor of love. We are trying to do that at every moment my love. We want this to be the thickest, strongest, toughest, suit of armor imaginable. This will be the most important weapon I can give you. I watch you sleeping in the hospital bed picking at your lips. Oh, little guy, you must be so scared. It must be so confusing when the strangers come throughout the day and night to

Oh little guy you must be so scared.  It must be so confusing when the strangers come throughout the day and night to poke you in the arm, or chest or finger. We love you so deeply. We are so very proud of you. You have shown such strength.  You have fooled all the doctors and nurses but you donít fool us.  The way you shut down, turn your eyes away and become lethargic  when they enter the room.  They think you are sleeping. Know that we love you with all our being. And trust these strangers that do not know you.

The next step is to fill your days with joy Ė utter, sweet, innocent, joy.  For these are the good days Charlie. Itís windy, there are occasional drops of rain, the sky has patches of darkness I hear the thunder rolling in the distance but I still see the sun and the storm has yet to hit. And so I know we must enjoy these days. And I do my love. I utterly enjoy you. You are funny and quirky, tender and loving and kind. You know so much and you are so very little. Lean on me. Hold my hand. Do not push me away. Do not be afraid. I will always be right by your side holding your hand as you fight this nasty beast.  Be strong my love.

The third step is to get you physically strong. For sometime soon your body will let you down. It will be scary my love. And I donít want you to see the fear in my eyes when those days begin.  I imagine it will happen slowly.  Your swallowing, talking, walking, toileting and breathing will all decline.

I treasure you with all my being. I am here, standing at your side, holding your hand - until the end.
Your Mum

 
 

To Charlie --  testing for pre-school
September, 2011

You start Ďschoolí next week. So today the psychologist came to our home to evaluate your cognition. You had slept terribly the night before and I was concerned that you would just ignore the psychologist and not answer any of her questions.

It was not like that, not at all. Oh my love it is so bittersweet. I knew you were perceptive, but I had not realized how smart you really are.

You sat so still at the dining table while the psychologist prepared her materials. Then she began with the testing and I watched, trying hard not to interrupt to help you.

Then I wanted to cry. How very unfair. Charlie, you kept getting her questions right! Your comprehension skills were stunning. It sounds so terribly disloyal - I found myself  silently wishing that you would not get the next question, but you kept getting all her questions right.

Oh honey, later the psychologist told us you scored in the 99th percentile for much of the test.  You are only three years and two months, but some areas you are functioning at a 6 years 10 months level!

It hurts knowing this. It hurts because I remember all the conversations you must have overheard. And it hurts knowing you will be so acutely aware when the time comes for your body to fail you. And it makes it all seem even more unjust.

So despite still having a language delay, you no longer meet the criteria for special education services. Considering your current feeding tube, and knowing that your motor skills will deteriorate, we still feel it makes sense for you to attend this early intervention program for a couple of hours a day (that is of course if you enjoy it). So your official special education diagnosis is now ďother health impairmentĒ.

 
 

To Charlie --   and then on to school
September, 2011

Monday, and your first day at pre-school. You were so very proud that first day. With your little backpack on you strutted into school. I saw a swagger in your walk. When we reached the classroom we sat together and played with the dinosaurs.

Then you turned to me and gently stroked my face and said, ďMummy, Iím okay now. Me be by myself now. You okay Mum.Ē It was a statement and not a question - reassuring me I would be okay.

Without you for just two hours I felt directionless. What will it be like when you are gone forever?


 
 

To Charlie -- worrying signs
 September, 2011

Dear Charlie,
Last week was difficult for all of us.
I saw you rub your neck and then soon after while in a shop you had an intense tantrum. Oh honey, this was not a normal three year old tantrum. There was something wrong. And prior to your diagnosis you had some huge tantrums. You were happy one moment and the next so very angry; kicking, yelling, not letting me comfort or distract you. After a while I picked you up screaming and kicking and took you to the car. And the tantrum continued and continued. Unable to get you in the car seat I sat in the back of the car with you. You would not let me put my arm around you but lent your body into mine. Were you in pain? Did your head hurt you? Is it the trauma that was triggered from yesterday? Are you trying to push me away because you know you are going to die? Oh little Cha - your fury and rage was out of this world and I could not soothe you. You worked up a sweat, I worked up a sweat. You cried, I cried. This went on for an hour in the back of our car. I find it so hard when I donít know what your pain is and I cannot soothe it away.

Love  Mum

October, 2011

Yes, it is true! You ARE getting cuter. We watch your language skills, your pretend play, and how your personality grows every day. You are funny.  You are mischievous. You know how to wind up your sister, and yet you are tender, perceptive and kind.
Your love for animals as well as people is deeply moving.
I watched you play on the deck the other evening. You found a dead bug, picked it up, then asked for help to go down the steps into our garden. You looked like you were on a mission but you did not explain. Then you took my hand and showed me. I saw the dead bug on a large leaf with a little leaf covering its body and some grass placed neatly next to it,
ďLook Mum - he is happy now. He asleep and warm and has dinner too.Ē

These days we spend a lot of time just sitting and cuddling.

 At times we have a ritual - you ask me to curl my tongue. You know I canít do this, but you like to watch me try. And so I stick out my tongue and I attempt to curl it. You pretend you have not noticed that I canít curl my tongue, like you, daddy and Esther all can. You cup my face with your hands, and while stroking my hair you say,
ďThatí right. You can do it just like us. Good girl Mum. I love you.Ē (although the last bit sounds more like ďGooí gul, Mum. I wuv wooĒ).
I cuddle you tight, tickling you gently to let you know I donít fall for your compliment.

 

Your Mum
 
October 30, 2011

Dearest Charlie,

Our sweet little boy. Itís October 30th today. What does our life look like? It looks goodÖ..mostly... sort of. You are so very well. So very happy. Your tantrums are improving. But it hurts. It hurts all the time. I cry maybe two times a day. They are short acute bursts of tears. The tears are often triggered when you and Esther are at your cutest playing so sweetly together. Or when I read an email from the DIPG group and read in detail of the decline or death of a child.

The other day we dropped Esther off at school and walking across the parking lot I saw a little girl holding her daddyís hand. I burst into tears when I saw she had no hair. My tears caught me by surprise and yanked me back to our reality. Despite wanting to protect you from all and every pain, I want your hair to fall out, I want you to vomit, I want you to take the nastiest medicine imaginable. Because I want us to fight this beast that lives in the shadows of your brain. But we donít fight. We just wait for him. Always watching you, terrified for any sign that might mean the beast is no longer hiding.

 We thought we saw him the other day. You cried at bedtime holding the back of your head. It was a different type of cry. A brave type of cry. You calmly told me that the back of your head really hurt. Then you whimpered and closed your eyes bravely. Daddy wanted to take you straight to hospital to ease your pain. We waited. You settled down and soon you were asleep. Just like any three year old in any family.

But we are not like any family. We live in a new reality

 
PS.
October 31, 2011

Itís Halloween today. You are dressed up in your dragon suit.

Can a dragon look adorable? You roar and pretend to blow fire on me. I pretend to cry out in pain from the fire burn. You walk over to me and kiss me gently and stroke my hair telling me you are a nice dragon now. I smile. You proved the point.

I am okay today. I havenít read any emails of children dying. I have seen no little children with bald heads. Today you did not tantrum uncontrollably, leaving me wondering if the beast had returned. You have not held your head in pain.

I was okay today, until I remembered I hadnít put deodorant on.

So I went upstairs. You and Esther, my little shadows, both followed. ďCan I put some on too?Ē Esther smiled sneakily. ďWhen you grow up youíll get stinky too, and then youíll definitely have to put some on!Ē I teased.

Then I heard a little voice, ďWhat about me Mum?Ē You looked at me, frowningseriously.

Do you know? Do you know that you will never be stinky?

I took a deep breath and swallowed my tears away, ďYes, honey, you tooĒ I lied.

 

 December 1st, 2011

 

Dear Charlie,
Itís been 7 months today since you were diagnosed with terminal brain cancer. Youíd think after 7 months of having this knowledge it would be sinking in and we would slowly ever so slowly be coming to terms with the devastating knowledge that your life will be coming to an end within months or maybe just maybe another year.

But itís not sinking in, and I donít get it, and it hurts all the time. You fill our worldCharlie with elk horns with love and meaning. Everyday you are growing into the most delightful little human being- so kind and so very fun. At night time or at random moments throughout the day you put your little arms around me and say "Cuddle me tight." And when I cuddle you, you say, "More tight Mum, it needs to be more tight." And you smile so lovingly and cheekily as you hug and hold onto to me tightly. You are full of life. You donít look sick. You donít act sick. We are not giving you any medicine to make you better. I donít understand this diagnosis or anything about it.

 Itís so very wrong and unfair. I want to cry out and stamp my feet and say itís unfair a thousand times. But I am the grown up; the parent; and what good would that do anyway. Never could I have imagined that we would be faced with something like this- a cancer with no hope.

Almost daily I still read about the other children that are dying or have died and the mothers who are then seized by the lonely darkness of grief. Itís strange that I can peak into their worlds like this, while knowing it will be our turn soon.



To Charlie -- a New Year!

January 2nd, 2012

Dear Charlie,

New Years day was difficult. It hurts thinking about whatís in store for us this year.

I feel weak just imagining. I want to curl up, put the covers over my head and go to sleep. I donít feel like being strong anymore. Cracks are forming all over.

If we donít tread carefully we are at risk of losing it all. As we wait for your murderer to return, we try to go on and live a normal life when nothing is normal anymore. Life feels as if itís about to spin into chaos at any moment.

But then I feel a little bit of strength. Amidst the chaos and growing dysfunction I actually feel lucky. You are a gift Charlie. You are utter joy and love. I feel lucky I am your mother; the chosen one to be by your side on this journey. I feel honored.

For now, I donít get comfort from religion. I have not been taught it and it does not come naturally. But I get comfort from your extraordinary love that you are giving us all. This makes me strong.
I canít keep you alive Charlie. I canít keep this monster from growing in your brain. But then I think about what I can control. But I can mirror your love right back to you. I can find calmness within if I search, and I can mirror it back to you, and to Esther; and to John.

I can hold you and tell you that itís going to be okay. I am so sorry I cannot stop the tumor from killing you my son. But if I try, if I really try and donít keep score, I can stop it from destroying us all, our family, my marriage and adding more wounds to your heart, Esther.

Itís hard to find strength when we have been told that there is nothing more we can do and we have lost the battle before the fight has really begun.

But with my boxing gloves back on I realize the beast is after us all and I feel strong again. I wonít let him hurt my husband or my daughter. I will fight!

With all my love forever,

Your Mum

Waiting for the MRI results at the NIH, Washington, DC

January 25th 2012

Dear Charlie,

Daddy and I are sitting in the waiting room in the hospital while you have just been sedated and are lying in the MRI machine. You were simply incredible just now.

I could see the fear in your eyes. But then I saw the way you held my gaze waiting for my reassurance, the way you avoided eye contact with the other people in the room, the way you did not cry when they poked your chest with the needle. Most of all, I saw the way you smiled at me and tickled me gently on my neck to make me laugh before you went to sleep on the MRI bed.

Every day I fall more in love with you. This morning you woke me up by kissing me gently on my lips. And last night when you felt my body restlessly tossing around to find a comfy spot, you stroked my hair and softly whispered ďSleep mama, sleepĒ.

I think about the day you were born. How you came quickly into this world. Less than an hour after arriving at the hospital where you were born, I was holding you close on my chest.

Then I think about the day you will die. Will it be quick the way you came into this world or will it be a slow decline? Will I scream and not let go of your dead body or will I remain in silent shock and slip into a catatonic state as they take you away?

Oh Charlie, sweet little Charlie. In the past three and a half years I think I have become dependent on you. Dependent on your smiles, your laughs, on your life bringing meaning and simple joy to mine. I feel like throwing my body down at your feet and pleading you not to die.

Or maybe I should just put you in time out and tell you how naughty you are for getting this nasty thing in your brain.

Sometimes when you are fast asleep I whisper in your ear. I tell you to fight and stay strong and be confident in my love for you.

ďFight Charlie, fightĒ, I whisper.

A visit to Eleís Place

 June, 2012

Dearest Charlie
It has been 14 months since your diagnosis. Now 4 years old, you continue to thrive and have grown into a warm, happy, affectionate and smart little guy. How very proud we are of you. I love loving you; it's so fun and easy. I love who I am when I am with you. Cowboy

In loving you, I find myself. I discover endless patience and I see beauty in the world. Getting you to smile or giggle brings all the meaning I crave.

Yet I am still in shock, in shock that nobody can help us, in shock that all we are doing is waiting for the inevitable signs of decline. It is so lonely. Every moment it hurts. I feel utter desperation. I want to run down the streets and knock on all the doors.

Surely someone can help us? I'll do anything. Please, someone, listen. There are no doctors now. No team of professionals fighting with us.

Last week I left you with Grammy and Poppa and took Esther and Daddy for an intake at Ele's Place. It is a center for grieving children. I am constantly looking for someone to help us, to support us through the journey of losing you.

But it felt wrong not to include you in this. It was so hard finding myself in the other chair, now the victim in the patientís chair.

A year or so ago, and a mile down the street from ELE'S Place, I had sat in the professional's chair, asking the questions, helping the family that needed help.

Sitting now in the other chair, it does not seem like my life. It does not seem like my story. Iím used to hearing other peopleís stories, stopping and listening, being moved and feeling sad Ė and then, quite simply, moving on with my own inconsequential worries.

Now I no longer know who I am in this new narrative. I donít want to be the one that is pitied. I want to be, perhaps need to be, the helper not the helpless. But I feel helpless -- just waiting for the attack, for your body to be seized, harmed and killed. Sometimes I feel like I am the one dying.

My love for you runs deep into my soul.

 
A visit to the doctor's office

 July, 2012

We saw a doctor today, but not for you. It was a follow up visit for Esther who had her tonsils and adenoids out a year ago.

We were new patients and when the doctor came in the room, I filled him in on Estherís story and how she had difficulty sleeping.

Spiderman CharlieI also explained that she has terrible anxiety right now because she worries about her brotherís illness. I explained your diagnosis.

The doctor looked terribly confused as you sat in my lap, giggling and turning pages of a monster book. He shook his head and frowned trying to understand that this happy healthy looking boy in my lap was actually terminally ill.

He looked at me, looked at Esther, and looked at you, perhaps still trying to understand this strange family that just stepped into his office.

Then I saw the doctorís eyes well up with tears. He tried to blink them away, but that only made more tears build up. He excused himself from the room, leaving us alone.

Then I burst into tears. Esther burst into tears and hid behind me. But you kept reading your book sitting on my lap holding my hand.

I had to fix the situation. How confusing this must be for Esther, seeing a doctor cry, seeing her mother cry. I put the lid on my tears, and ,as calmly as I could, I explained to Esther that everybody cries sometimes and sometimes just talking about Charlieís cancer makes people feel sad.

You may not have minded, Charlie, but I am sorry Esther had to see this. Or am I just sorry for myself?  It might have been unprofessional for that doctor to cry in front of us. And yet it was also so powerful and validating. Our abnormal and painful world has become our normal. Having a professional outsider remind me that this is shit and sad, and so far from normal, was, for me, deeply therapeutic.

I understood, perhaps for the first time, how healing comes when real emotion bares the soul and reveals our common humanity.

A hot summer's day

July, 2012

The temperature hit 103 today, a first time record for Lansing.

You and Esther were fighting as I strapped you both in the car. It was so terribly hot. It was the end of the day.

Before that Esther had screamed about not wanting to leave the house. Before that she had screamed because I had gone upstairs to the toilet, but had forgotten to tell her where I was going.

I snapped at both you kids. I was angry, swaddled in self pity, as I reversed the car down the driveway with a frown on my face.

Then I heard your little voice, ďBe happy Mum. Everythingís okay now. I love you.Ē
I turned around and looked at you in your car seat. You had the sweetest smile, the kindest eyes, and my anger, frustration and self pity just vanished.

How will I do all this without you Charlie?

It is difficult enough now, knowing of and living with your death sentence. Yet that is nothing compared to what lies ahead.

I donít want to live in a world without you, Charlie.

Please donít die Charlie!  
(Is this denial that's creeping in?)


Cowboy
 
 
 
     
     
     

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