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Abigail Waller
East Lansing, Michigan, USA
 

 

Anniversary - December 5th 2014

 

AbbyandCharlieOne year ago today our beautiful, funny, sweet, loving five and a half year old son Charlie, died of terminal brain cancer. 

Soon after diagnosis we took Charlie on A Make a Wish trip and when tumor progression began an amazing Michigan foundation called Believe in Miracles, sent us on our last family vacation to Disney World.

In the two and a half years that followed we learned how to live wholeheartedly  in the present. Each day we lived knowing that it could be our last one with our son. Friends family and strangers rallied to support us. Charlie continued to grow and thrive into an intelligent, compassionate and insightful little boy. His bond with his sweet big sister, Esther was extraordinarily special. Amidst the abnormal and unthinkable, life was incredibly beautiful and it was our normal.

 

And then Charlie died.

Then the worst Michigan winter imaginable rolled in.

Then the silence crept in.

No more Charlie hugs, or smiles, or cheeky giggles; no more siblings laughing and playing for hours; no more children's toys scattered around or sibling squabbles; no more children's Halloween parties or kids dance parties or zoo parties or "horsey house call" parties. No more little kid play dates. No more appointments with doctors or researchers. No more discussions with friends about fundraisers or experimental treatments.

No more relatives visiting from overseas. No more foundations stepping in to help

 

Silence.

Awkward moments and averted glances.

No more curiosity about our lives.

Lost acquaintances and distant friendships.

And then more silence.

 

 

 

 

 

 

 

   

Halloween 2014

Hi Charlie,

It's October now. You seem a thousand worlds away. I don't know how we are we are going to make it through this month.
You loved Halloween all year round – zombies, ghosts, skeletons, skulls, spooky graves, sticky eyeballs, cobwebs, creepy spiders, bloody plastic fingers, and a plethora of costumes. I am not sure how we are going to make it through this month.

I suppose it was fitting that you began to decline on Halloween. You seemed ok when I dropped you off at school, but then at lunch time your teacher called and told me you didn't feel well and wanted to come home. You came home, insisted on having some lunch and then rested on the sofa.

And then you vomited. And that's when I knew our time with you was running out and rapid decline and death would be close behind.

I felt like vomiting too.

You whimpered with discomfort. I cleaned up your vomit and then I slid next to you on the sofa and cuddled you tight in my arms.

"More tight, Mama," you whispered.
As instructed, I cuddled you tighter. I gently stroked your hair until your eyes began to close. When you were calm and resting I went to the basement and called the doctors, feeling hopeless. They all reported, as predicted, that there was nothing to be done – progression of the tumor had begun. An MRI was already scheduled for tomorrow.

Sitting next to you again, your eyes still closed, you whispered, "I want to go back Mama— I am going back to school."

Then you sat up and insisted on putting on your costume. Oh, sweet little Charlie you could barely sit up!

You must have had the most unbelievable headache, but you insisted on going back for the school Halloween parade and you wanted to be well enough to go trick or treating with your girlfriends.
I gave you some Tylenol then drove back to school. I watched you in the rear view mirror as I drove. Your eyes were closed your head leant against the window. Before I carried you into school you stared seriously into my eyes and said, “I'm scared Mama.”
“I know honey - I'll be with you the whole time."
"Never let go Mama."
“I'll never let go Charlie."

We join your class just in time to begin the Halloween parade. The next hour plays in slow motion in my mind.
Parents and small children lining the hallways cheering and clapping as Halloween characters walk the hallways.
Your costume is the best one I've ever seen. On the outside you look like a pirate. You may be a sick pirate with cancer, but you wear a convincing mask of a happy carefree boy.
You don't let on that you are in unbelievable pain. You don't let them see that you have difficulty walking. You smile at your girlfriends and gently tickle them under their chins to make them giggle.

My costume's not so bad either. I look like a normal kindergarten mother, enjoying the controlled chaos of a school Halloween parade. I smile at little children and give hugs to other mothers.
But inside I want to scream and, invisibly, I am collapsing. How can my child be dying while I am at a school Halloween parade not fighting for his life?

I tried not to have hope. But over the two and a half years hope managed to slither its way in.
Halloween was the last day you ever went to school.
That evening somehow you mustered up all your strength and went trick or treating with your pals Lola, Annika and Alison.

Two days later a hospice nurse came to our house and told us you had only a few days to live.

October 2014

 
   


September 2014

Hi Charlie,
It's Mummy here.
In five days it will be 9 months since you died.
It seems like worlds ago.
It seems like this morning.
Sometimes I like to imagine you walking into the room and it feels so normal, so right, and comforting.
My imagination is controlled.
I imagine the every day.
I imagine picking up your trail of mess.
I imagine you sitting snuggled up in my lap watching Scooby Doo.
I imagine you and Esther squabbling over the remote control.

I don't like to talk about you as much as Daddy loves to. Daddy loves to hear stories about what you did or what you said. He still needs to hear that we did our best for you and you didn't suffer too much. I don't have those same nagging concerns. My relationship with you is private. I only want to share my tears with you. I want you to be remembered don't misunderstand. But sometimes when people talk about you in a whimsical way and throw around your name in the past tense, I feel a tightness in my throat, a throbbing pain in my chest and my stomach flips. I guess I'm still getting used to the idea of you in the past tense when you continue to be such an important part of my life.

Daddy is still so terribly sad. His heart is so heavy with sorrow for you. He was doing better for a while. It was good for him to go back to England this summer.

How different we all are in our grief. When you died we received nearly $5,000 insurance money. Although we have many bills and also expenses from your illness and death, what felt right and healing for me was to give your money to Esther – to open a bank account in her name something we never had the extra finances to do before. I needed to focus on the living.

But Daddy had different ideas what to do with the money to help us all heal. Daddy wanted a beautiful memorial bench to be made with your name on it and was able to get permission for the bench to reside in the beautiful churchyard in the Cotswold village of Great Tew, England. After many months of arguing, and tears, I knew this argument with your Dad had to be put to rest. Our relationship was being damaged. Slowly I began to accept his need to be ridiculously extravagant in purchasing a bench that would be thousands of miles away from us. Slowly I began to understand that Daddy needs a little bit of you to be in the church grounds of this village that he treasures and in his home country. But it was hard to let this fight go Charlie. Even in death it felt like you were being taken far away from me.

Oh Charlie, remember last summer when you ran around that church graveyard in Great Tew? You stopped to admire wild flowers, fat slimy slugs, wet cobwebs, and then you did something that we'll never forget. You found the smallest grave stone and knelt down next to it and wrapped your arms tight around it. You assumed by its size it was the grave of a small child. We couldn't find any dates or name, the grave was far too old. But you gave your biggest smile and insisted that we take your picture standing next to it.

Oh sweet Charlie what did you understand? Did you know that would be the last time we would ever visit that village with you?

Missing you more than ever –
With all my love as always,
Mummy


 
   

July 2014

I don't want to live without you Charlie.
I feel like I am walking around with missing limbs.
There is no going back to life before you were born.
Sometimes I experiment and try and forget that you ever existed.
But everything is different now.

Oh Charlie how do I stop pebbles rolling into my heart? How do I learn to live without you, without becoming bitter and hardened?
Charlie, so many people don't dare acknowledge our broken life. They turn their heads away not wanting to witness our pain. But friends find it too sad to come to our home. There is no 'fixing' our grief so they think there's nothing to do or say. A relative won't read our words of pain or barely say your name.
Our special friend won't look at your spot on the sofa. She asked us if we're still grieving.
They dismiss and wave our pain away. They tell us we are “just stuck in the anger phase."

Yes, I am angry.
I am angry that you suffered.
I am angry that my dearest little pal is gone.
I am angry that I can no longer see your gentle mischievous little smile or hear your roaring giggle.
I am angry that so little is said now.
I am angry that your pals are all now six and you remain 5 and a half.
I am angry that the sun keeps rising and our hearts keep beating without yours.

Mummy
July 2014








 
   

June 2014

Dear Charlie,

Oh, Charlie! I saw someone today that looked like you. A happy little blond-haired boy about your age who was being carried on his father's back. The boys legs were wrapped around his father's waist his arms tangled around his father's neck. Without wanting too I thought about you. I remember how I carried you everywhere.

For five and a half years you were glued to my side, or my back, my front, my leg or just to my hand. We did everything together. We ate, we slept, we toileted, we laughed, we cried, we dreamed, we played and we played again and again and again. And then one day you were gone and I was no longer the mother of the sweetest little boy.
My soul aches and yearns for you in the deepest way. I am still in utter disbelief that the kindest gentlest little person was taken from our lives. I am still not used to the idea that we could not save you and this cruelty happened to you, to us.

Sometimes I imagine I am on a big stage and the show has come to an end. I am satisfied with my performance, quite proud actually, so I take a slow and steady bow and then exit stage right.

Oh, Charlie, nothing is working without you anymore. Daddy and I fight all the time. He's so terribly sad. Our family life is broken all over the place and I don't know how to fix it.....I want to give up.

Exit stage right.

But I don't know how to do that either. All I know how to do for now is put one foot in front of another and hope that one day we figure out how to live without you, without becoming tangled in anger and the unfairness and cruelty of losing our family life.

Forever,
Your mum
June, 2014



 
   
   

To my son, Charlie

February 12, 2014

 

I am an addict. I have a deep craving that can never be satisfied. I think about my addiction from the moment I awake. I yearn for my drug. For fleeting moments I forget that my drug can no longer be obtained. My drug, my addiction, is you, little Charlie.

My body craves to be nestled into your body -- to stroke your hair, to hear your voice, to see your smile. Just one more hug, one more conversation, that's all I need. I wasn't ready to give you up. I have so many things to tell you still.

My withdrawal symptoms are physical, materializing in varying forms and severity throughout the day. My heart pounds, my head spins, there’s a lump in my throat. Sometimes I cannot hear when other people talk ­ I only hear the pounding of my heart. It hurts deep into my soul. Bubbles of grief rise to the surface from nowhere. They are my new constant.

On my toenails remains the nail polish that you helped me paint before our trip to Disneyworld. I think about the day when I will look down and the polish will be gone.  There’s the squishy eyeball stuck on our ceiling still, the one we threw up together before your Halloween party.

Oh, please don't fall, nasty squishy eyeball stuck on our ceiling!

In every bag, or in any item of my clothing with pockets, I am still finding your squishy bugs, hard plastic animals or zombies with missing heads. In our piles of paper around the house your drawings surface from time to time. Your pictures are of dying pirates, bloody zombies, tombstones, hearts, rainbows and the four of us holding hands. 

 
   

Pen

 
   

 

Our family doesn't work so well without you Charlie. We wobble -- everything feels off balance. We don't know where to eat our meals now. We can’t sit in front of the TV because then we think about you and the shows you liked to watch.  It seems too formal to sit at our dining table, and we only have two stools by the kitchen counter. So Esther sits on her stool and Daddy and I tend to stand or take turns on your stool.

Going to the supermarket is hard. So many foods I no longer need to buy, aisles I find difficult walking down now.  You were so clear about what foods you liked --  Annie’s Mac and Cheese with ketchup swirled in, fruit strips, Cheerios, pickles, and applesauce. 

Somewhere you heard the saying, “an apple a day keeps the doctor away”, and you used to ask if eating lots of applesauce counted. You loved the idea of candy. You would plead for a “lollypop”, have a few sucks then ask for a ziplock bag. It was, you said, to save the rest  for a special day.  Yesterday I found four slightly sucked lollies in separate ziplock bags in your little giraffe backpack.

 

Pen

 

 

Picking Esther up from school is hard. Watching the other parents collect their children is hard. Coming home without you in the car is hard. When Esther and I get home we don't know what to do. That was our time we all played together, or your time with your sister to play.

Bedtime is hard too. No longer can we say, “Let's get the kids ready for bed.” There is no kids bed time anymore. Just one fragile kid remains in our house. Now Esther’s bedtime is the same as mine. We climb into bed together. This is my time to hug Esther and hold her close. This is the time she never pushes me away.

Esther has slept in our bed ever since the night I woke her up to tell her that you had died.

As I picked her up in her deep sleep state, at first I did not say you had died. All I said was that she needed to wake up so she could kiss you goodbye. When Esther saw you swaddled up in Shannon's ghost blanket she was calm and she knew you were dead. Tenderly she kissed your forehead. As she kissed you, I saw your hand peeking out from under the blanket, and tried to look away.  But it was too late Esther saw me staring at your hand. Your sweet little hand was so limp and white and your fingernails had already turned black.

“What's wrong with Charlie’s fingernails?” Esther whispered.

"Oh honey.....” I wanted to protect her I wanted to say something.  “Before he died he wanted me to paint his nails. You know he loves Halloween and loves the color black”.

"Oh." She replied.

The lie had tumbled from my lips. What an unnecessary and silly little lie.

Esther reached for my hand and we sat next to you, hugging waiting for someone to tell us what to do next.  Esther let me get away with that ridiculous lie. Thank you, little Estie!

 

Pen

 

 

Do you know that I think about you, Charlie, every time I go to the toilet at home! Does that make you smile? It makes me smile. The last month plus of your life we shared the most intimate moments by the toilet. It was getting difficult for you to urinate. You never had an accident and you could hold your urine for hours and hours. But in the middle of the night you would need to go to the toilet. Once we got to the toilet no urine would come out.

You would sit. Then stand. You were in obvious discomfort. As the days passed, your pain and discomfort increased. We would sit by the toilet for twenty, maybe thirty minutes. You whimpered in pain. You sat. You stood. I encouraged you. You could no longer sit or stand without support.

I held your body weight, stroked your hair, and whispered words of encouragement. Along with the physical pain, I know your pride was getting injured. I know it was scary and confusing when your body was declining. But you didn't cry. You hardly ever cried. Then began our ritual: When finally you peed, I would ask for your help to lift me up from the bathroom floor. I pretended I needed your help. You had little strength. But with your light and delicate touch you held my hands and “lifted” me up. You could barely stand unassisted. Then I would stand up, pretending your little hands alone were lifting me. The muscles in my legs shook.

“See Charlie, your Mama needs you too. We all need help sometimes. Thanks for helping me Charlie.”

You smiled. You held my gaze. You knew my little game. “Thank you, mummy. You know I love you more than fish love water.”

 

Pen

 

 

I shouldn’t really tell others about when I go to the toilet, but it highlights how losing you has affected everything in my life.

Remember when you used to wake up at 4:00 AM and insist on going downstairs to watch TV on the sofa? Remember that first time you did not want me to leave your side to go to the toilet? Remember how I decided to pee in your potty? Remember how we both laughed when I did? After that first time it became acceptable to use your potty, our new normal. Well, you'll be glad to hear Mummy doesn’t pee in the potty anymore. Esther doesn’t either. With you in the house it was acceptable, but with you gone, it is no longer.

 

Pen

 

 

How I loved you in the deepest way. Can I tell you about the brief moments before and after you died?

Another time I want to tell you more about December 5, 2013, the day you died. For now I will tell you about those moments.

I had been lying all night by your side on the sofa. After a while I became aware that your breathing was more labored and I began to feel less connected to your body. Daddy had gone up to bed around 10:00 pm. He was exhausted and needed to sleep.

At 12:20 am Daddy came down again. He sat next to you and I moved away.  I stood not far from your side, watching Daddy tenderly stroke your hair, kiss your lips and place his hands on your loudly moving chest. 

Then it happened. You died. You took in a deep loud breath. The sound is so very clear in my memory. You never breathed out.

I remember feeling no longer connected to your body. But that didn't matter. I felt.....I felt your soul enter my heart, into my soul. I felt completely swaddled in your love. I felt safe. I felt complete disbelief.  I knew that my brain could not quite grasp the depth of what just had happened .

It was time to be practical. Emotions had to be stuck away in a box to be explored in months to come. I jotted down the time – 12:25 am – on a scrap of paper. I took your last photograph. I called the after-hours hospice number.

Oh Charlie, you clever little guy. You waited for Daddy before taking your last breath.

 

Pen

 

 

It’s been more than two months since you left us, Charlie, and I must tell you that Daddy's having a hard time. He's a bit of a mess actually.

He just misses you so much and deeply admires the person you were. His world is very different than mine. After Christmas he had to go back to work; teach a class, write a book, set up a new scholars’ program. Yet he holds it together at work. He doesn’t see or hear how people care, just focusing on what needs to be done.

But at home he sometimes falls apart – grumpy, irritable and so very sad. He needs to talk about you all the time. He needs to talk about your quirky little sayings, things you did, things you liked, how you hugged, how you loved. But I don't need to talk about you Charlie. Is that OK?

Sometimes Daddy asks me, “What did Charlie say”, or “How did Charlie say that?”

I try to answer, but I am sorry, Charlie, often I can't remember. I forget so much of you already. When we were together we just did. To remember exactly what you said is like remembering every movement of my right arm during a day, or each bite of food I put in my mouth.

A few weeks ago, Esther and I were talking about you, sitting on the floor outside my bedroom and hugging each other. I don't know why we were sitting there. But then we heard a peculiar noise. We listened.

Esther jumped up and shouted, “Boston's home!” (Our neighbor Kris has been looking after Boston, our dog).

I grabbed her arm to stop her before she could run downstairs.  I had realized it was not the excited cry of a dog. It was the sound of Daddy crying for you, Charlie. I wanted to make a noise to mask the crying, but it was too late, Charlie. I couldn’t protect Esther or Daddy.  

“Daddy . . . ., John!” I shouted down in a light hearted way. “We can hear you. Come on up and join us."

"It's OK,” I said, smiling at Daddy as he came upstairs. “It’s OK to weep for someone you loved so dearly.”

Then the three of us embraced and we wept for you together.

Oh Charlie we'll be OK. Somehow we'll figure out how to live with this grief that sits deep in our hearts forever.

 
Pen   PenPen    

 

 

Sent from my iPhone

Abigail's Note:

This was  some stream of consciousness writing over the past few days, typing with two thumbs on my iPhone. I wrote it for myself. It's rather personal and is a bit dark -- but I feel the need to share.

 
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