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 99^th 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”.

 December 1st, 2011

Dear Charlie,
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 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 “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.

 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 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.

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, “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!  
(Is this denial that's creeping in?)