Author Archives: So Here's Us.... life on the raggedy edge.

About So Here's Us.... life on the raggedy edge.

I'm a bookworm, nature lover, kick-boxer, candy fiend, sci fi geek, home body, progressive Christian and part-time student. I love my crazy life and the messy, fun, stubborn, silly, brilliant people who populate it.

Day 10: Letting It Go

I made a commitment to blog 31 days in a row. I’ve never been one to take this kind of thing lightly. I am a completer, a finisher of tasks.

Yesterday began all too early and filled up before I could blink. Somewhere along the line I realized that I hadn’t had time to think about writing, much less do it. I might miss a day.

My stomach began to twist, that toxic flavour of obligation and failure on my tongue (not only am I super-responsible, but absurdly melodramatic). Somewhere deep inside a voice piped in “Stop it! Don’t be stupid. This isn’t a real problem. Hobbies are meant to be fun, to make life better not worse.”

So I stopped. I didn’t waste another second feeling bad about my imperfect 31 Day track record. I’m writing this today, because I want to. And I may post it… if I feel like it.

How novel. To do what I want to do with my free time. To do what I want to do without apology.

That book I started reading that just isn’t capturing my attention, the one that everyone raves about and I really ‘should’ read… I’m letting that go. But I’m still counting it on Good Reads (cause I’m a rebel like that).

Not gonna beat myself up about unanswered emails and friends I don’t have time to catch up with either. Turns out, I can’t be all things to all people after all. And this friendly introvert is pretty used up most days.

Hopefully most of you are finding this pep talk kind of ridiculous. Wondering who would obsess about such silly little things. That means you live in the kind of freedom that has eluded me most of my life.

I have a hair trigger guilt reflex. All too often, I’m tangled up in invisible cords of should. Bound up. Weighed down. Constantly tripping over the harsh expectations I have of myself. Until even my hobbies feel like jobs.

It’s bullshit.

That’s the only word that fits. Nothing polite, nothing trite or gentle will do. I won’t coddle this bad habit anymore. There are enough real problems in the world, I don’t have time for false guilt and perfectionism.

I don’t even believe it anymore. I used to think I was more responsible, more spiritual, more likely to succeed this way. But it’s just pride wrapped in self-loathing, having nothing at all to do with God. Also, really exhausting, because life was never meant to be one long grueling self-improvement project.

Life is for living.


Are you tired? Worn out? Burned out on religion? Come to me. Get away with me and you’ll recover your life. I’ll show you how to take a real rest. Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won’t lay anything heavy or ill-fitting on you. Keep company with me and you’ll learn to live freely and lightly.”

– Jesus (Matthew 11:28-30)

Day 8: The Government

For those of you who don’t know – Canada is in the midst of a Federal Election. And it’s taking forever. The longest election in modern history for some indecipherable reason.

Not that I’m at all bitter (I am). This is a tough time for all of us. With 4 political parties to choose from, it is easy to feel torn. If only we could create our own political hybrid. I’ll vote for this immigration policy and that economic plan and their compassion for Aboriginal women, Mulcair’s experience, May’s common sense and top it off with Trudeau’s hair (of course).

There’s no such thing as a perfect solution. I wish I could be a true believer. Personally, I’m voting to keep someone from returning to office more than anything else.

Regardless of where you stand, or what level of frustration/confusion/apathy you feel, the only wrong move is no move at all. Living in a democracy is a privilege and a responsibility. Not because we’re infallible political experts. We’re not. I’m not.

Government isn’t some random bureaucratic monster. It’s our bureaucratic monster. It’s us. It’s who we want to be and how we plan to get there.

The system’s not perfect. And it’ll never be perfect. But we have to try.

I’ve always been proud that we see ourselves as a community, not a bunch of individuals. I’d like to think that selfishness and fear are patently unCanadian.

So, I’m digging in and trying to figure it out, because there’s only 11 days left. If I don’t vote I have no right to complain about the government, at all, until the next election.

And where’s the fun in that? After all, I love me some Rick Mercer…

Day 7: Deluded

I try to fill the spaces of my life with words, words, words.

Desperate to connect ends with means,
to fill up empty places,
to overwrite uncertainties,
to tame unruly emotions,
until it’s all neat and orderly
and easy.

I’m totally kidding myself.


Day 6: The Assumption of Agency

We had another long day of medical assessments today. It went well. My boy ate barium-laced food without complaint and sat still enough to swallow for the camera. He was quickly distracted from the sting of eye drops by the surly teenager across the room who was playing video games (tried to climb onto the poor boys lap). He watched YouTube videos about the solar system for hours during examinations and team consultations. We checked a number of worries off our list, with only a few small additions to the reasons-why-I-stay-awake-and-feel-guilty list.

A good day.

A long day.

One of many still to come.

I decided I would simply add an inspiring Ted Talk video as my blog today. So much better than what I might say anyway. Naturally I got sucked in, watching one more and then another and another. And here I am an hour later. Better informed I’m sure. But somehow more tired than ever.

And discouraged. Not because the talks aren’t motivating and exciting and chock full of good ideas. They are.

But so much of it won’t work for me. Not right now. As I watched a talk about dreaming the life I want and taking bold steps to get there, I realized why I feel so left out.

Not just Ted talks, but parenting tips and elaborate holiday plans and the latest greatest decorating fad on Pinterest – all of which my kids would demolish in seconds.

Our society assumes we have the agency to make anything we want to, happen. That we are in the drivers seat of our own life. That we determine how it will go. If we use the right technique. If we work hard enough. If we pray the right prayers. If we eat the right foods. If we make the right decisions. If we want it bad enough.

The truth is, I don’t have as many choices as most people in my social circle. When the speaker asked, after a dramatic pause… NOW where will you be in a year? My answer isn’t all that complicated. Exactly the same place.

That’s the best case scenario. That we’ll have only 6 months of chemo left and a new cycle of medical assessments among other things. And if I’m dreaming really big, a few less pounds and a few more online courses under my belt.

Even that, is far more control over my own life than most women in my situation, in other parts of the world, or in all of history have ever had. I’m incredibly privileged when I extend my sight beyond my Facebook feed and my immediate surroundings.

Yes, there are some doors that open so much slower for our family and some that will always be closed to us. And it’s a rub. I’ll probably stumble on new pockets of grief all my life.

In the end, I gotta believe it makes me see life clearer. Because we really aren’t as in charge as we think. Contentment is less about taking control of my life and more about accepting it. Happiness and self-worth based on accomplishment is fleeting. And exhausting.

Success is completely different from one person to the next. It’s deeply personal. And I doubt it’s pinnable.

Day 5: Embrace Plan B

Describing today… the words that come to mind are: ‘insanity’ also ‘gruelling’ and ‘why-on-earth-do-we-have-so-many-kids/appointments/medical issues. Today I’ve spoken to an OT, 3 SLPs, a dietician, 3 Pediatric oncology nurses, a nursing student, a child life specialist, a lab tech, a PT, a social worker, and 2 psychologists (if you know what all these are you likely have a child with special needs or work in the field). Tomorrow will be even busier.

For some reason, in all my wisdom, I made plans to make an elaborate (for me) dinner tonight. I’ve been craving meatloaf and mashed potatoes. After a day of driving and appointments and cajoling little patients into cooperating… this part of the day was for me.

Until it all fell apart. And I can blame the traffic jam and the skin infection and the doctor having other responsibilities – and possibly universe itself because, of course, when does anything go smoothly for us?

When I realized my meal plans weren’t going to work out I handled it like a mature adult. Teeth gritted. Deep breaths. Low level anger trying to gnaw it’s way out of my chest.

On top of that, a layer of guilt. Because this really isn’t a bad day in the scheme of things. I had cried over a heartbreaking Facebook post from cancer friends earlier that day. In a world where stuff like that happens, my ruined dinner plans should barely register.



I made another plan – Daddy makes dinner tonight.

Kraft Dinner and spinach salad to be precise.

Not my favourite meal plan. But what a relief. Now I had time to catch up with an old friend in the midst of errands. And there wasn’t any rush to get home. And when I got there we all sat around the table and laughed together and shared our stories and it was the best part of my day.

And the food wasn’t bad either.

So, I guess my point is this: often my worst enemy is my own expectations. Life goes smoother when I hold plans loosely, and flex with the situation. Especially on days like today.

Day 4: Humanity Starts Here

Today, I offer you this.

It’s a difficult, even painful gift to give. It’s a soothing and beautiful gift to receive.

It’s the basis of meaningful friendship and the key to fulfilling our purpose as humans.

It’s also a skill. Meaning: it can be taught and improved and built up in one another. It can be sharpened most of all by our own suffering. Which sucks, since I’d so much rather learn through Ted talks and cute animated videos. And it only grows when I allow it. Which is hard, because it will inevitably be uncomfortable. And we’re so very good at avoiding uncomfortable.

Having received this many times, I can tell you it makes all the difference. It’s something I have great capacity for, now more than ever. But it’s also something I have failed at spectacularly before. Because it’s easier to minimize, to discount and disbelieve, to compare, to rush, and keep everything pleasant and superficial. 

Pleasant and superficial has its place, but it never made anything better.


The cure for what ails us as a species.


Day 3: Stillness, Meditation and Other Weirdness

Quiet is an unnatural state in our world. It is difficult to attain and nearly impossible to hold onto for long. Yet, nearly everyone can agree that it is an important part of emotional and physical health, and a vital aspect of prayer in almost every belief system. The constant noise of modern society, the clatter of opinions, the hiss of my own fears and worries, even the happy rhythm of a full life, can drown the soul.

Even now I can hear an inner voice sneering about the “hippy dippy nonsense” I’m dishing out. Maybe I am laying it on a bit thick. Maybe I wrote and deleted that paragraph several times. This stuff used to be too weird to me. Too other-worldly and nebulous. Too easily filed under “Other’ – new age, Buddhism et cetera (which at the time were not paths I respected).

It’s strange, because there is a long tradition of mindfulness and meditation in both Jewish and Christian traditions. Be still and know that I am God. At some point we’ve lost sight of the discipline of silence. There’s so much we can learn from each other.

I am no longer threatened by the practices of other belief systems. While I choose to remain in the traditions of my youth, I can appreciate and embrace goodness in all its forms. Mindfulness, meditation, even an awkward version of yoga have found their way into my repertoire. Honestly, I’m not sure it could be called yoga at this point, more like clumsy stretching.

The girls and I do Yoga with Adriene – ‘Yoga for Complete Beginners.’ At first B sat on the couch and laughed at us, but eventually she joined in too. She does a mean downward dog. It’s surprisingly hard. And relaxing.

Silence is a rare commodity in my life. Something I need to pursue and protect more. I need to turn the radio off during my commutes. And take walks in the woods by myself.

I’ve found guided meditations are helpful too. Kind of a shortcut to stillness. Especially actual physical escape is impossible.

One of my favourites is this free app – Stop, Breathe and Think. Although it is intended for teenagers (maybe because it is) our family has found it helpful. While in the hospital B would occasionally ask to listen to the “lady” when she felt overwhelmed or had trouble sleeping. It’s like auditory Prozac, soothing and disarming.

‘Relax, Ground and Clear’ is our standard pick. Ostensibly secular, yet I can’t help but experience The Divine through it. For what is God, if not the source of peaceful calmness, the energy of the earth, and the vastness of the sky?


The structured, purely-intellectual prayers I used to aspire to are of very little comfort these days. I can no longer A-C-T-S my way through a list. I am often beyond words.

Instead I sit and listen.

And sometimes I even hear the quiet.

* * *

On a lighter note… here’s a guided meditation for the dark days. For those of you who are comfortable with extreme profanity and morbid humour. Not at all family friendly.




Day 2: One Foot in Front of the Other

This may be the least profound and the most important tool I have in fighting off life’s monsters.

Breathe in. Breath out. Focus on the moment I am in right now. Do the next thing. Put one foot in front of the other. Keep going.

There are times when the next five minutes are all I can handle. Keeping life as small and manageable as possible. There is no shame in this. It is amazingly adaptable. I let go of the past, because I can’t change it. I trust my future to God’s hands, because I can’t do anything about it either. I keep my sights on the moment. And I do the best I can right now.

When it comes to fighting the Big Bads in life, we need to keep it basic.

I’ve always been a planner. Lists of goals. Detailed schedules. Purposeful routines.

The first time reality overwhelmed my need to organize the world was the death of my son Noah. Not only was I reeling from his loss, from the trauma of delivering my silent, perfect little baby, but the doctors had removed my kidney the week before. I was recovering both body and soul.

All I wanted to do was nothing. Lie down. Listen to the same sad song over and over again. Stare into space. At nights I wandered the house and surfed the internet.

It was harder and harder to get out of bed at all. And that scared me. I asked my mom “what if?” What if I crawl into bed and never crawl out? What if I can’t do this? What if I’m not strong enough? What if I get stuck?

She told me that she and my husband would pull me out if needs be. That if it got that bad, there would be medication and therapy and they would carry me through. And it would get better. She would know… my brother Bradley was stillborn too.

So I started a strange little ritual. For the first time in my life I started wearing make-up every day. I was less likely to climb back into bed once I had lipstick and eyeliner on. Even if I did nothing else all day, this was the start. It wasn’t a big thing, but it got me out of my bed, down the stairs and eventually back into life.

When B was in the hospital week after week, I leaned on this ritual again. Especially when she was in isolation, so very sick and sleeping all day long. There was little to set the days apart from the nights. Some of the rooms we stayed in were closet sized, others had no windows at all. Daily make-up became a sign of strength for me; very little to do with vanity, much to do with intentional living.

It doesn’t always feel like strength. Some days it’s hard to do even this. But I do it anyway then. Especially then.

Everyone has their own rituals, daily steps forward, simple everyday signs of life. Ones that may seem miniscule and silly to others, but are statements to ourselves: that I am not beaten, that I can do this one thing, that I am still me…

For me it’s make-up, writing, laundry on Mondays, prayer at dinnertime and goodnight hugs. How ’bout you?

When life spins out of control. The monsters at my door are despair, discouragement, and depression. Do what you have to do to get through. Remember that the best you can do, is all that you need to do.

Keep it small.

Keep it manageable.

Keep moving.


Day 1: Battling the Monsters

Recently, monsters have returned to our house.

The imaginations of my oldest two kids, now teenagers, have long outgrown them. It’s been years since we had to check under beds and sing “God is bigger than the Boogie Man” until they could breathe easy. My what-is-real-and-what-is-not talk is pretty rusty. Also, I feel a little guilty trotting that one out on the same day that the tooth fairy visits.

Our littles, as we call the two youngest, have been more preoccupied with concrete fears. You know, the real terrors of life, like having to wash your hair, or wait your turn, or *gasp* go to bed at nighttime.

I’m sure it’s no coincidence that monsters have returned this year amidst the upheaval and struggle and all too often, pain, of childhood leukemia. B herself does not believe in monsters. Nor does she fear them. In fact, she informs me she is “very, very, very brave.” A fact I can attest to. Sadly, her most loyal companion – Pluto the stuffed dog, is quite frightened of monsters. Little brother has caught wind of this and he too will run to mommy shaking and crying for help. And the darn things seem to be popping up more and more often.

Sometimes a hug, a song, a prayer, maybe even a snack is all it takes to vanquish the monsters. Sometimes the kids actually tell me what to say – they know what it is they need and are so much better at asking for that sort of thing than I. The only certainty is that monsters are not meant to be faced alone.

As so often happens, the invisible monsters and the imaginary friend are helping us deal with real things in their lives. Complicated fears. Deep confusion. Issues small and large that are too slippery for little hands to carry.

The kids aren’t the only ones. I’ve got monsters of my own, now more than ever. A few big and scary ones – like Cancer and Fear of My Child Dying. They’ve all but moved in. I’m learning to simply make room. Because this is our life now.

In the day-to-day it’s the little ones that trip me up the most. The thoughts, feelings, and habits that haunt me, intent on dragging me down. I want so badly to be and do better than I actually am. Most of all, I want to make peace with myself in the meantime.

Every person I meet has their own personal demons, some obvious and others deeply hidden – fear, grief, addictions, illness… Then there is society itself, plagued with systemic monsters of rape, racism, violence, greed, extremism… And what about evil itself, as a force of darkness with its own aims and purposes; is that real? Does it matter how it works? Clearly the world is full of monsters, within and without.

Some days it seems frightening. And overwhelming. And the monsters start scratching at my door even louder – perfectionism, fear, defeat, anger… The harder I try, the worse I make it.

These days it takes very little to push me to a complete meltdown. We’ve been in survival mode for so long. Our whole family feels fragile, on edge. We need a battle plan.

The key to battling monsters isn’t what you might think. It’s not a tough-as-nails hard-charging warrior that crushes them into dust. Rather, it’s a flawed-but-improving, overflowing-with-love simple human being that can make them small again. More Mother Theresa than Dirty Harry. That’s what we need. That’s what I’m going for.

So here’s me, for the next 31 days, blogging in the 31 days challenge about: Battling life’s Monsters.


For myself. For my kids. For the world.

Pretty damn heroic, right? Which is the point. Because writing variations on “I’m just trying to get my shit together” for a month sounded lame.

Here goes nothing…

Day 2: One Foot in Front of the Other

Day 3: Stillness, Meditation and other Weirdness

Day 4: Humanity Begins Here

Day 5: Embrace Plan B

Day 6: The Assumption of Agency

Day 7: Delude

Day 8: The Government

Day 10: Letting it Go

Day 11: Making it Enough

Day 14: The Blame Game

Day 15: Honouring Our Losses

Day 17: Four Hugs a Day

Day 21: Hide and Hope to be Found

Day 22: Catharsis: The Cheap Alternative to Complete Meltdown

Day 31: Peace in My Time

The Best Thing About This Year is: You Being You

Your hair fell out this year, all of it. It’s not something that happens to most ten year olds. Not something you understood. Not something we knew how to parent through. But you handled it. Better than I ever expected.

There are moments of sincere sadness; “I miss my hair” is a familiar refrain in our house. A hug and understanding comment is all you need to be comforted and move right on with life. You’re quick to find humour in the situation – apparently, it is both hilarious and wonderful that you now look like Uncle Lex and Grandpa Bill. Not all bald people share your perspective, so loudly pointing it out to them is a habit we’re going to have to work on. You do love attention more than most. You’ve never acted embarrassed or self-conscious, and why should you?

When I finally shaved your head, you objected more to having to change your shirt after than the act itself, even though I was gulping back tears. The only part of this that truly angers and offends you is when some helpful soul points out that your hair will grow back. “NO! No, no, no, no…” you shout with a disgusted look on your face. Who wants that gross old hair, that fell out in chunks and left you with hairy clothes and pillow cases and even food?

You are growing new hair. This is the only thing you want, to move forward. It’s the only direction that makes sense. Preferably with blue or yellow hair, depending on your mood. The baby soft half-inch that’s grown back so far is a lovely brown, something you’ve not quite resigned yourself to. But I’m sure you’ll make peace with it, the way you do with everything. Honestly, wholeheartedly, with a lovely and unique perspective.

Losing your hair was a hard thing, but not nearly the worst part of cancer. The long months in hospital, the repeated isolation orders, the pain, the machines and wires and tests. The near-daily treks to the clinic when you finally got home. Being too weak to walk up the stairs, too tired to get out of bed. The yucky tummy that still hasn’t gone away, the “diiiiiis-gusting” medicine, the tube in your nose, and the many, many pokes that you hate with a passion. Having to be held down for this procedure or that one. Mostly, being so very out of control so much of the time. For you, that is the hardest part.

You are the toughest person I know. Really. I can’t wrap my mind around everything you have endured, are enduring still.

You have a spark of life that fights through. You are you, and nothing will ever change that. You make that clear to everyone who steps into your domain. You are not a passive patient. There is no way you’ll allow anyone to examine you or do their work until they earn the right. It is exhausting sometimes, but good for all of us. Sometimes we grown ups forget to be human when we’re focused on getting things done. You love the “cleaning nurses” and the “food nurses” best of all – demanding names from each of them, asking for them when they’re gone. In your mind, they are the most valuable, because they bring something tangible to you and you can count on them to come back day after day (and never poke or prod).

Your little rituals make life feel safe. Fred (the IV pole) has had several new faces taped to him over the year, but he’s a constant friend and someone you are glad to see and drag around the hospital with you. Pluto may be a stuffed dog, but he’s an old pro at getting his vitals taken. When we get home you play “Dr. B” and give him many of the same treatments you’ve endured yourself. He’s also the one who feels things the most, crying and woofing when he’s feeling scared or shy or sad. Hearing you comfort him gives us the clues we need to know what you need. On hard days you watch the same show over and over again, or ask to listen to “the lady” (a meditation app on relaxation) whose voice could induce a deep sleep while reading the phone book, or we listen to “A Whole New World” as you tell me all about the magic carpet ride you’re going to take around the world, and all the things you’ll see and do. When eating is hard, as you feel both ravenous and horribly nauseous, we watch the Food network all day long and write menus in crayon.

It has been a hard year. A horrible, scary, and somehow life-affirming year. It’s such a terribly cliché thing to say that you’re my hero (cue cheesy 80s music). As a writer I should be able to think of a better way to say it, but it really has been such an exhausting year. I’ll just say that loving you is one of the best things I’ve ever done or ever will do.

Happy Birthday!



Happy Birthday to the spunkiest 11-year-old I know!

Where to even begin describing all that you have been through this year? When you turned 10, we had no idea that you were about to embark on the hardest year of your life – a year that no child, no person, should ever have to face.

When I think about this year, the first word that comes to mind is “unfair.” It is not fair that you got cancer. It is not fair that you lost your hair. It is not fair that you had to spend half your year in the hospital, miss Halloween and Christmas, rarely leave the house, never see your friends, have to face a million hard and painful medical procedures, deal with infection after infection, get woken up every night for medicine, and generally feel miserable all the time. My heart hurt for me, and for your mom, and for your sisters and brother… but most of all, it hurt for you.

But you never ask questions of fairness. You don’t wonder why this happened or when it’s going to end. You just deal with what comes your way each and every day. Not always happily (and who can blame you), but always bravely. There have been a lot of tears this year, for sure, but there have also been a lot of laughs. Nothing – NOTHING! – can destroy your spirit.

Instead of moaning about losing your hair, like I would, you’ve made jokes about how you look “like Uncle Lex,” and assured us that when it grows back, it will definitely be blue. When you have to swallow yet another gross medication, you talk about how the “strong medicine” is chasing the unhealthy cells away. You barely even flinch when we do six toe pokes a day each month when the wretched diabetes returns.

On the night we got the news, I carried you to bed and looked at your peaceful face, trying to convince myself that nothing had changed. Of course, I was wrong. Almost everything had changed. Most of all, that was the night you became my hero.

So here’s to you, my inspiration. It’s going to get better from here on out, and we’re going to celebrate every step of the way – starting today, with your birthday. Happy Birthday, B!





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