Tag Archives: Write31Days

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.

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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.

Argh.

Fine.

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.

Empathy.

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?

sbt

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.

31dayslinky

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


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