This is a re-post of the blog originally posted November 1, 2018. I’d like to explain what happened but I just don’t know. Gremlins. Science. Computer stuff. Who knows - I’m just putting it back… Leah

Today I sat on the same bed in the same room in the same hospital where they told me it was cancer. 

Six years ago, I held my sleeping fevered 15-month old daughter in this room.Theroom is where it all started to come apart. The room where my mind raced through all the possibilities. The room where I shivered and sweat and rationalized. The room where all my plans and all my confidence evaporated with a diagnosis. A prognosis. A reduction of spirit and energy and life so far to a disease. 

And today, back in this room, this is where my daughter - after hundreds of pokes, scores of procedures and too many sleepless nights to count – finally asked me the question that I've been dreading since crossing the threshold of thisroom: 

 

 "Am I going to die?"

 

As the alarms on her monitoring systems sounded and nurses shuffled around the gurney in the too small room to access equipment, she turned her wide blue eyes to the only person in the room she could see – me. Cheeks wet with tears, snot coursing from her nose, she yelled at me – she called to me – through the barrier of the oxygen mask she gripped tight to her face the one question I don’t want to answer. 

As someone who has been secretly harbouring the fear of this moment for my entire lifetime as a parent, I found myself shockingly unprepared.

Turns out worrying about something, fearing it, dreading it doesn’t do shit to prepare you. 

Throughout the course of her disease and treatment, her relapse and some dark and scary times we had talked about just about everything else. 

We had these sober conversations late at night with the hum of machines in the background, in the hallways or, if we were lucky, as we laid together in our bed – still and quiet but with sleep just out of reach. 

We promised ourselves and each other that we would always give her the information that she asks for, the information she wants or thinks she needs. Taking into account her age, her ability to comprehend we felt she had – in her short life – earned the privilege of access to the same facts as we knew them. 

Fairy tales with happy endings were beneath her. Disrespectful. A betrayal. 

It was an act of love to be honest. To tell the truth.

As she grew up, we braced ourselves for tougher questions but trusted we would be able to figure out howto answer these questions in an honest, direct and appropriate way then, we supposed.  

Later, we told each other.

Down the road, we said to ourselves. 

Maybe never, we hoped but never articulated. 

Never was not to be. Later was right now. 

But telling the truth was harder than I thought. Fairy tales felt easier. Lies tasted delicious in my mouth. They danced on my tongue as I considered the ultimate betrayal.

Somehow I stayed the course. 

A moment of strength or a lunacy. But that does not mean I did it well. Let’s factor in the reality of how the person now accountable for delivering this truth. 

Me. 

I'm not now, nor have I ever been, “well-filtered”. Perhaps this is an optional part – like an appendix or wisdom teeth – that the highly evolved or slightly defective are born without. But unlike the unseen appendix and teeth, this lack of filter can be perceived as the curses and brutal truths and ‘what everyone else is thinking but now one is saying’flows out of my mouth the way wine flows in. 

It is my blessing and my curse. 

And now my unfiltered, anxiety ridden mind is navigating new territory. 

Uncharted territory. 

Unlike the cancer, what we manage now – the downstream side effects of her transplant, the unintended consequences, the fine print of our deal with the devil – is ambiguous. 

There are some similarities. Common is that what we knowis usually a small list compared to what we don't know. 

We are not un-used to taking a rule-it-out or rule-it-in approach to things. We start with a long list of scary shit and try to eliminate things – in scary rank order. But with cancer there was always a hunt to find the culprit. As we ruled things in and out and narrowed it all down, there was always another test or procedure or drug. 

Now? Once we rule out the scary shit, and even the not-as-scary-but-still-worrying we still find nothing definitive. We are left holding a bag labelled “other”. A diagnosis of idiopathic <insert name of symptom here>

Idiopathic is the Latin for beats the shit out of me but it’s not getting worse so let’s just watch and wait and see and hope we caught a break.  

No wonder Latin is a dead language.

And much like I am a factor in the truth telling exercise, so is she. 

She's crazy smart and the last six years have only made her smarter. She's funny and insightful and has the hearing of a bird of prey. She is fascinated and fascinating and has surpassed all of us in her wisdom and perspective. 

Like her mother, she has many gifts. Some similar –a sense of comedic timing that simply cannot be learned – and some very different, courtesy of her father. Her musicality, her spatial awareness and drawing ability. 

Her patience. Her kindness. That she does not get from me.

I’m not sure which of us she gets her bullshit-detection-filter from but it’s there. 

Like a sieve. Like a metal screen. Strong metal that doesn’t rust.

The weave is dense and almost nothing but the purest of facts and truth can pass through. 

This means that lies – no matter how tempting –  are out. 

Fundamentally she knows she is different. We can say special or unique or extraordinary but for her, it has always been something she has assessed and measured in units of  ‘different’.

When she started Junior Kindergarten, I was the only mum who showed up at lunch time to give her some milkshake via her G-tube. 

In the early school days, when she got a bug, she didn’t get a few days on the couch watching Home Alone re-runs and carte-blanche on the popsicles; she got an IV and  a week in hospital  - but she still did well in the popsicle department. 

She's smaller than her peers and she can't run as far or as fast. 

She takes medicines that make her cheeks round and carries a puffer and knows the difference between and CT, an X-Ray and an MRI.  

She didn't get to "go back to school" this year at all to protect her lungs from the petri dish that is Grade 2.

And the older she gets, the differences get more difficult. Not because they are bigger or more numerous, but because her awareness of them is so acute. The unfairness of it is palpable. The willingness to accept them a rapidly dwindling resource. 

She watches school buses load and unload and walks slowly by the yard of the school so she can watch them play. Other times she walks quickly or we take a different route so she doesn't have to see. The trips to the library and our made up field trips are small consolation for the loneliness and isolation that she feels being away from her friends. 

Being away from school. 

Being different.

It's hard for her to be different and, as a parent, it's hard to watch your child feel different. Others might say that these experiences broadened her mind and perspective and made her who she is and blah, blah, blah. 

But no one would choose these ‘experiences’ This is not an upgrade to life. Anyone who has lived it, regardless of the outcome, would give it two big thumbs down. The reviews on Yelp and Trip Advisor would be unconditional in panning it. 

 I can’t un-recommend this experience enough. It’s balls.

Every parent wants the same thing for their children - Everything. 

I am no different. 

I want my child to have allthe options. Nothing is off the table. The world at her feet. Life as a true choose-your-own-adventure. 

Like the best salad bar ever. 

She should get to decide if she wants guacamole (we know – it’s extra). 

I don’t want her to be sent to a separate line where there is only shredded lettuce, processed cheese and one type of olive. And any parent who says otherwise is a liar. 

One type of olive? That’s. Madness.

 

But that's not how it works. The buffet options do change. 

Sometimes they run out of the stuff you like or strawberries are out of season or you develop and allergy or you turn forty and you can't eat allthe cheese anymore. Or at least not without serious consequences. 

And even though that's how life works, it still makes me angry. 

It makes me angry that so many options have been taken away from her so early in her life. It makes me furious to watch my smart, thoughtful and sensitive girl realize she has fewer options than everyone else. I hate watching her feel the unfairness of it and not be able to do anything about it. It devastates me to see her process what this could mean for her now and in the future. 

 

It hurts my heart to have her be afraid. It makes me seethe with rage hearing her articulate this knowledge into questions that a seven-year-old should not have to contemplate, let alone ask.

In the end, no one comes out of this alive. 

Everybody dies. 

Our mortality is the common and constant that makes us all violently the same. No exceptions. No exemptions. 

The only difference is the details. The when, where and how is, for most of us, the unknown.

 And with no preparation of any value and my own fear coursing through my body, the truth that we all die - in that moment - was irrelevant. 

And it wasn’t really her question. 

 

So my answer – like love – was simple:

 

"Not today baby"

 

Not if I have anything to do about it.