Abigail's Journal - Letters
Note to readers: These letters come straight from the heart of a mother dealing with the terminal illness of her two-year-old son, Charlie Waller. They are raw, unedited and unapologetic in their expression of love and grief. They can be difficult to read, but they are shared in the hope of educating others, and opening up difficult conversations about the devastating impacts of the illness and death of a young child.
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 it’s 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 doesn’t 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 don’t 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 – utter, sweet, innocent, joy. For these are the good days Charlie. It’s 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 don’t 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.
(Testing for pre-school)
You start ‘school’ 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 “other health impairment”.
(First day of school)
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, “Mummy, I’m okay now. Me be by myself now. You okay Mum.” 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?
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 don’t know what your pain is and I cannot soothe it away.
(Letter to Esther, Charlie's big sister - age 7)
Sweet little Esther. Always listening. Always just a few steps away. Always trying to understand and trying to make it better. You are a funny little one, so strong and so very fragile too.
I try to be honest with you Estie. For this is a problem that is not going away, but soon will get worse and there is nothing we can do but prepare for the outcome. I remember the day after Charlie was diagnosed you came to the hospital with Grammy and Poppa. You sat in my lap in the hospital chair and watched your brother sitting on a mat angrily tossing plastic animals around the room. He did not look quite right. They had just started him on very high doses of steroids. This was the very beginning of the 7 hellish days in the hospital when Charlie’s behavior was frenetically obsessive and filled with scary rage. The doctors and nurses had to hold him down to get blood or even to take his blood pressure. He left the hospital with night terrors, not knowing who he could trust.
You turned to me on that second day in hospital and asked what was wrong with Charlie. I explained as best as I could to you, our dear 6-year-old, that Charlie had a mass, a lump in his brain that the doctors couldn’t get rid of. You looked at me quietly and said directly, ”is he going to die Mum?” And looking you in the eyes and holding your hand I replied “I don’t know - maybe”. You abruptly got up from my lap and ran down the hallway. I ran after you. When I reached for your hand you pulled away and said “I hate you!” A few minutes later you came back into the room and stood by my side. We couldn’t talk as there were people around. So we just held hands.
Without you my love, this story would be very different. First of all I wouldn’t be so tired!! You talk non-stop! Even when you are sick you just keep going! But you keep me strong, you make me want to fight. I’m trying to get everything in place for you too, my love. I have spoken to your teacher, the school social worker, and a therapist this week. I know you are scared. It’s going to be hard for you Esther. I will always be there for you in my heart, but there will times when I cannot be there when you need me, and I am sorry. I am so very sorry already.
You are a wonderful sister Esther. So caring, tolerant and such pure fun. You have a hard time at bedtime. The other night you were crying and wailing insisting that I sit by your side as you fall asleep. Charlie was crying too wanting me to lie with him. Usually Charlie ends up winning and I go to his side. But this time I know you needed me and so I left Charlie screaming to sit by your side. When I reached your bed and stroked your hair, you took a deep breath and bravely told me that Charlie needed me more. I returned to Charlie but heard you quietly crying – you tried to be brave but I know you are suffering and need me too.
The other day I saw what you wrote in the very corner of the white board in the study –“ Please, please god help my brother get better”. When did you write that? How long has it been there? You are so quiet in your pain.
Hang in there my love. We are going to be okay.
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,
“Look Mum - he is happy now. He asleep and warm and has dinner too.”
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 can’t 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 can’t curl my tongue, like you, daddy and Esther all can. You cup my face with your hands, and while stroking my hair you say,
“That’ right. You can do it just like us. Good girl Mum. I love you.” (although the last bit sounds more like “Goo’ gul, Mum. I wuv woo”).
I cuddle you tight, tickling you gently to let you know I don’t fall for your compliment.
October 30, 2011
Our sweet little boy. It’s October 30th today. What does our life look like? It looks good…..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 daddy’s 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 don’t 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.
P.S. on October 31, 2011
It’s 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 haven’t 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 hadn’t put deodorant on.
So I went upstairs. You and Esther, my little shadows, both followed. “Can I put some on too?” Esther smiled sneakily. “When you grow up you’ll get stinky too, and then you’ll definitely have to put some on!” I teased.
Then I heard a little voice, “What about me Mum?” You looked at me, frowning seriously.
Do you know? Do you know that you will never be stinky?
I took a deep breath and swallowed my tears away, “Yes, honey, you too” I lied.
December 1st, 2011
It’s been 7 months today since you were diagnosed with terminal brain cancer. You’d 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 it’s not sinking in, and I don’t get it, and it hurts all the time. You fill our world 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 don’t look sick. You don’t act sick. We are not giving you any medicine to make you better. I don’t understand this diagnosis or anything about it.
It’s so very wrong and unfair. I want to cry out and stamp my feet and say it’s 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. It’s strange that I can peak into their worlds like this, while knowing it will be our turn soon.
January 2nd, 2012
(A New Year!)
New Year’s day was difficult. It hurts thinking about what’s 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 don’t feel like being strong anymore. Cracks are forming all over.
If we don’t 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 it’s 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 don’t 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 can’t keep you alive Charlie. I can’t 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 it’s 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 don’t keep score, I can stop it from destroying us all, our family, my marriage and adding more wounds to your heart, Esther.
It’s 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 won’t let him hurt my husband or my daughter. I will fight!
With all my love forever,
January 25th, 2012
(Waiting for the MRI results at the NIH, Washington, DC)
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 “Sleep mama, sleep”.
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.
“Fight Charlie, fight”, I whisper.
(A visit to Ele’s Place)
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.
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 patient’s 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. I’m used to hearing other people’s stories, stopping and listening, being moved and feeling sad – and then, quite simply, moving on with my own inconsequential worries.
Now I no longer know who I am in this new narrative. I don’t 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)
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 Esther’s story and how she had difficulty sleeping.
I also explained that she has terrible anxiety right now because she worries about her brother’s 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 doctor’s 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 Charlie’s 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)
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, “Be happy Mum. Everything’s okay now. I love you.”
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 don’t want to live in a world without you, Charlie.
Please don’t die Charlie!
[Note: Charlie Waller passed away on December 5th, 2013.]
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.
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.
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!
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.”
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.
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.
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.
To my sweet Esther,
I am so so sorry. I am sorry you feel alone and lost now that your dear little buddy is gone. I am sorry that at age 9 you held your dead little brother in your arms. I am sorry for the quiet sadness that hangs over our home and in our hearts.
Sweet little Esther so strong and fragile too. You have lost so much confidence. Since the night Charlie died you have slept by my side or in my arms. Your anxiety is high and floods endlessly through your body and mind. Your safety has been violated in a terrible way.
You hold tight onto terrible and irrational fears and you can't keep them away. You ask me repetitively if you have tetanus from walking barefooted outside. You think you might have brain cancer because you have a headache today. I showed irritation when you cracked your knuckles. Now you think this has given you unsightly large knuckles and that you have arthritis. Your worries are constant. You worry that you might have clicked on something inappropriate on the I Pad and that you have lost all our photographs of Charlie. I try to soothe you and chase your worries and fears away but they have an incredible persistence and determination. When Daddy went away for a couple of nights for work you asked if he would die too and if you would ever see him again --- you shook, you cried.
Another day you casually asked if someone can die from sadness.
You showed me a poem that you wrote. In the last line you said that since your brother died you felt 'like a flower with no petals.'
It's so hard to watch your pain. I would do anything to make it better for you. I want you to see what I see. The incredible little human being you are becoming. The night Charlie died you were gentle, calm and loving. After I woke you up at 2 am to tell you Charlie had died you crawled up next to his warm dead little body, tenderly kissed him, then slipped off his Halloween sock and placed his sock on your foot. You wore that sock for five days after Charlie died. (You only took it off because I insisted on washing it!)
In so many ways you are my medicine you are helping me heal my own broken heart. I hope that doesn't scare you too much. I hope you don't feel the pressure of curing your parents from their pain.
You are silly, you are tender, you are clever, kind, and perceptive .
I watch you at school. You wear your mask. You smile, you giggle, you whisper with a special friend. Nobody knows your fears at school, they don't see your heavy heart. You don't want to be the girl who lost her 5 year old brother.
But you are my sweet Esther. And your wounds will be woven into the tapestry of the incredible little human being you are becoming.
With all my love,
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.
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.
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,
October 31st, 2014
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.
December 5th, 2014
One 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
Awkward moments and averted glances.
No more curiosity about our lives.
Lost acquaintances and distant friendships.
And then more silence.