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.
November 21, 2018

Another Word

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

I’m feeling a need to write through my feelings again. After crawling into a post-cancer cocoon for the past year and a half, I’m back.

I started so many posts over the past few years. Fretted and fussed about getting “back into it” but quickly set it aside when it started to feel like pressure. I do not need more of that dreaded s-word in my life (by this I mean Should, but the other one fits too).

So here I am again WANTING to write for the first time in I can’t remember how long. Because once again I need to process my experience and nothing works quite like this. Throwing it all up against the wall to see what sticks.

Fair warning, I doubt it’s gonna be pretty, or witty, or all that inspiring. Also, there will be swearing. I swear now. I want to honour my family and my beliefs, truth, justice and the Canadian need to apologize frequently… but I’m too tired to self edit that much. Or at all.

This morning we got another official diagnosis for our little B (who remains happily in remission from leukaemia). I say little, but she’s actually 14 with all the sass and hormones that this entails. I’ve long ago made peace with the words “Down Syndrome,” “OCD” and, yes, even “cancer survivor.”

on your sleeve like they say from Flickr via Wylio

© 2008 Andrew Malone, Flickr | CC-BY | via Wylio

These are our words. Not who she is, but an important part of our daily life. Words that describe but do not define her.

She remains feisty and adorable, soaking up all the attention in the room. She’s challenging, very much so. She likes to be in control. She never stops talking. She’s often inappropriate – belches loudly, talks about poop, ignores people and makes us laugh every day.

She’s a lot of work. And she’s worth it!

But she wasn’t outgrowing some of the quirks that we used to chuckle over. In fact, they were getting much worse. More rigid. More controlling. More strange words and tics and coping rituals.

And while she remains an attention sponge, she has very little interest in actual friendships. Her social interactions follow specific scripts, whether they make sense or not. She continues to introduce herself and ask the names of old acquaintances, even family.

She loves imaginary play, but it sticks tightly to “the plan.” If you try to improvise or cut her scenarios short she gets very agitated. Her obsession with her favourite stuffed dogs (Pluto!), previously a helpful incentive, have become a hurdle. They’ve been banned from school. And the bus. And helping mom drive the van.

Hardest of all, she perseverates. There’s a ten dollar word for you. It sounds kind of admirable, like perseverance. According to dictionary.com it means: “to repeat something insistently or redundantly.” According to me, it is a very efficient means of causing mom to lose her ever-loving mind.

All kids do it sometimes, but B is a world champion.

Standing beside my bed in the middle of the night while I’m sleeping: “Mom, mom, mom, mom, mom, mom, mom, mom, mom, mom, mom…”
x 578 900.

Now louder and with more feeling: “ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM!…”
x 1 987 638.
(It should be noted that she is extremely lactose intolerant and not permitted ice cream these days.)

So we wondered. And we remembered the handful of voices that had suggested it in the past. And we asked questions, read articles, visited the paediatrician and the psychiatrist and then waited, waited, waited (for almost 2 years) for her turn to be assessed.

The psychologist we saw initially gave us a pretty clear (and horribly depressing when compared to every typical 14 year old girl in the world) picture of B’s cognitive ability. I hate those stupid IQ assessments and as a parent find them entirely pointless. He also cautioned us not to expect a positive diagnosis. She’s just so outgoing and engaged and nothing like the stereotype of this diagnosis we all know so well.

But stereotypes while sometimes true, can also be total bullshit. (For further proof: kids with Down syndrome are always SO happy and angelic.)

If you haven’t guessed where I’m heading with this, the developmental paediatrician we saw today said it was a slam dunk. We’ve added yet another word to our lexicon – autism.

I’m not surprised. Some studies suggest that 10% of children with Down Syndrome (DS) also have Autism (ASD). While mysterious there’s clearly a genetic link. These dual diagnosis kids often present different, seeming more social and expressive.

After years of hearing the grumbling in DS circles that the ASD families get all the money, I was hoping we could cash in on superior funding. Also, we were tired of having to explain that B isn’t just like every other cute kid with DS that teachers and workers and friends knew. Most of all, we craved the validation that something else, something more is going on, we aren’t just over-reacting and under-parenting.

I’m not surprised. I thought I’d be thrilled to hear it.

I’m not surprised. But I am strangely devastated.

It’s just another word. It describes our reality. It doesn’t change a single thing. And knowing officially will probably make things better for all of us.

But it’s another damn word. And she has so many already.

There will be a day that I need to rally and focus on possibilities, find the silver linings and tell the pretty stories. But today, today I’m just sad and angry and so fucking tired.

 

3 Comments   |  tags: , , , | posted in grief, special needs

May 10, 2016

Not Fine

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

Dear Whole Wide World,

I’m not fine.

Really, really not-fine. And it seems like our culture is built around a number of fleeting encounters that ask the question, but discourage real answers. Too time-consuming. Too uncomfortable. Too intimate. How am I?

According to the doctor, I’m depressed. Post traumatic stress says one psychologist. Another told me my blood must be pure cortisol at this point.

Which pretty much means I’m a mess. The truth is, it’s been a long time coming. And while we still have nine months of chemo and a pretty sick girl stuck at home this week, this is as close to peace as we’ve had in a long time. Everyone else in the family seems to be doing relatively okay. Which is probably why my body/mind chose now to short circuit.

It’s not what I expected. I’ve got quite a bit of up close and nearby experience with depression and anxiety at this point in my life. I’ve even accrued a substantial resume of grieving for myself, which I’ve always thought of as a close cousin to depression. But seeing and being are vastly different animals.

I told my friend Liz that I knew I was going to break down eventually, and when I did it would be spectacular. I imagined something alarming… cinematic. Michelle Pfieffer in The Deep End of the Ocean when she realizes her baby is missing. Scarlet O’Hara in the face of defeat. Scared Sorority Girl number three.

No dice. I still look pretty much the same. Except my shirt may be inside out and I probably haven’t brushed my hair. Oh, and I wear glasses now, because contacts require effort. I place one foot in front of the other and somehow no one notices. All the screaming is inside my head.

Meanwhile my family gets to see me unravel every day. Playing ‘Pleasant Citizen’ doesn’t work at home; I just don’t have the energy. I crawl back into bed a lot. I hulk out over the smallest problem. My feelings are delicate flowers, wounded by the smallest slight (and I have teenagers, so you can imagine how well that’s going). I can’t fall asleep. I wake up in a panic and run to check if my children are still breathing. I clutch my chest to try and lift this weight off of it. Overwhelmed. At any moment, and sometimes for no reason, completely overwhelmed.

I used to whirl around in a tornado of efficiency – packing lunches and dispensing medications and solving problems. Now I just whirl around and around and around and forget what I’m supposed to be doing. I put the milk in the cupboard. I forget to start the car and am confused when it won’t drive. I need people to repeat things to me several times before they make sense.

I thought depression would be sadder. I still laugh and enjoy things, though nothing is as bright or clear anymore. I’m so touched and grateful that my family is picking up the slack and giving me the constant reassurance I seem to need.

And every once in a while I just feel fine again, confident that the worst is over and I can be myself now… wondering if maybe I’ve been overly dramatic in presenting this to my doctor and counselor. Then I unload the dishwasher and must retreat back to bed for a nap.

So why am I writing an ode to my mental dysfunction for the whole wide world?

Partly as an apology, because as irrational as it may be, I still carry a lot of baggage with me about being selfish and letting people down. I’m trying to figure out where it all came from, but I suspect it’s largely inborn. So, this is me, giving notice that I’m going to be taking care of myself first for a while. Because there’s still a lot riding on Mom, and I can’t take care of them if I’m not a healthy me.

All these months (years, let’s face it) of suppressing my own emotions and needs have been necessary. We’ve done the best we can, and we’ve had SO much wonderful support, but there’s a reason cancer parents have high rates of PTSD. In the face our worst nightmare we put on a brave face, sing a song, make a game of it… anything to make it easier for our babies. And our own trauma gets stuffed way down. Just yesterday I had to bring her in for another blood test. I crawled up into the bed with her, wrapped her in my arms (and legs) and tried to distract her while she cried and struggled and screamed. It was an easier one. She’ll never know how much it kills me inside, because Mom is always calm in the hospital.

I guess I’m also writing because I want the world to know that even though you might see my calm Mom face too, I’m not really okay.

And I’m okay with that.

So, if you ask me how I am, I might give you a polite lie and move on, which is probably easiest on us both. It’s not a social convention I love, but it’s the way things work. I’m getting good at evasive but true answers like “still kicking” or “hanging in there.” Sometimes, probably more often than is socially acceptable, I answer truthfully. “I’m not doing well at all.”

It’s a relief for me. It doesn’t need to be a burden for you. I don’t need to be fixed or saved. I don’t need platitudes or sermons or super-human effort from you (though I know these are coming from a good and generous place inside you). I just need to be seen and heard. “That sucks; I’m sorry” is the best response for me.

Someday you might want to give an honest, but uncomfortable answer too – on those days, I’m your gal. Not Fine is an awful and important part of being human.

falling down from Flickr via Wylio

© 2015 PYLmom, Flickr | CC-BY | via Wylio

 

So here’s me, learning this thing called ‘self compassion’ via counseling, writing, art, meditation, prayer, fresh air, silly tv shows, hot baths, talking, talking, talking, dates with my husband, anti-depressants… and most of all, lying in bed.

 

15 Comments   |  tags: , , , , | posted in Cancer

April 17, 2016

Ordinary Transcendence

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

Sometimes, it’s a good day.

As entrenched as our family is in the business of Not-Dying, we need days like this. Even a moment like this. To remember the point of it all…

To live.

To breathe. To savour. To flow with the grain of the universe.

A few weeks ago I pulled over to the side of a busy road, hiking back to the creek I had crossed a thousand times. I sat on the edge of the bridge and scribbled a poem in an old notebook I’d found in my purse. I was late to my next appointment, but I’m not sorry. I’m beginning to think these small joys are actually the big purpose. The mysterious how-to-be we spend so much time and energy and money chasing.

Click.

Grinding gears slip into place.
Tension unravels,
clouds clear,
calm within the storms.

Spring follows winter.

Sunshine,
dandelion smiles,
cherry blossoms,
the perfect song on the radio.

Caress,
nest of safe and warm,
giggling children,
a dance twitching through my limbs.

This is only a moment.

small

transient

meaningless

meaning everything

Thank You!

tulip

It’s important to see the beauty everywhere. Even here, at the side of the busy road… Maybe especially here.

So here’s me, praying.

3 Comments   |  tags: , , , | posted in poetry

March 17, 2016

That Was Easy.

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

In the olden days, before PVR and Netflix, we used to watch television commercials. We didn’t like it, but the only other options were mute and dragging my lazy butt to the kitchen for a snack. So we endured. If a marketing department had done their job well, then a piece of those commercials would stick with you for days, even years. A jingle, a logo, an image… haunting you in the most annoying way possible.

Staples Easy Button Display 10/2014, by Mike Mozart of TheToyChannel and JeepersMedia on YouTube #Staples #Easy #Button from Flickr via Wylio

© 2014 Mike Mozart, Flickr | CC-BY | via Wylio

Staples Business Depot had one of those mental burrs – the easy button. The ad goes like this: a harried office worker runs into a problem, is utterly overwhelmed and in desperation presses a large red button with the word ‘easy’ printed across it. POOF! – the issue is resolved through the magic of superior business supply mojo. Meanwhile, the narrator declares, “That was easy!” The ad campaign  became so popular that they actually began to sell the large plastic buttons in their stores. We had one kicking around the office I worked in. Most do.

I never really got the joke. At least, I assume it’s supposed to be joke. The directions on the package instruct you to identity a difficult issue. Push the button. Listen to the message (a tinny voice declares, “that was easy”). Smile. And move on with your day.

I spend a lot of time wishing for an easy button in my life. I’m pretty sure a lot of my worst habits can be traced to this desire. I’m pretty sure a lot of our first world problems can too.

My daughter was in hospital again this week.

We’d been passing a head cold around the family for days (proving it’s not always good to share). But she seemed to be on the mend, just in time for spring break and, best of all, music camp. We decided to take advantage of our in-house babysitters and go on a date, before the teens left on their camping trip. On the way to the restaurant, Big Sister called to let us know that B was acting sicker than before and her temperature was climbing. By the time we raced home she had spiked a real fever, then coughed until she threw up. Cue the familiar and frantic dance of cancer families in an emergency.

Things can go very wrong, very quickly these days. We’ve been spoiled with several uneventful months cancer-wise, and I hadn’t even realized how much the terror and exhaustion was fading. I sat by her bed for hours and felt sorry for myself (I do that a lot these days).

Even with modern medicine on our side, something I am so deeply, deeply grateful for, there aren’t many shortcuts or quick fixes for our girl. The options range from uncomfortable to grueling, and even then there’s no guarantees. While there are times when it’s a blessing that she lives entirely in-the-moment, there are other times when it’s so frustrating being unable to reason her through the procedures she most hates, especially when she’s feeling rotten. Even though it’s necessary, I am heartily sick of holding her down while she screams and thrashes and cries in betrayal.

Pneumonia has, thus far, been one of our easier emergencies. We’re now home in our own beds, and every morning we drive back to the hospital for a few hours. I found myself telling a friend how everything pales in comparison to the heaviest chemos. Which is the most horrible thing to celebrate.

I think about that stupid easy button a lot. Imagining a world where it actually existed. Not just for cancer, but for all the things that make my life hard. POOF! Problems solved. Sickness cured. Anxiety gone. Disabilities erased. Relationships restored. Everyone agrees with me. Happy. Happy. Happy.

Why can’t life just be easy?

I don’t actually have an answer. There will probably come a time when I can wax eloquent about the beauty of struggle or the lessons we learn through the fire or some sentimental drivel like that. But right now I’m tired and frustrated. And I’m in no mood to ice over the shit and call it cake.

Life is hard. It just is. It’s unfair and it hurts. One of the things that seems more clear to me now than ever, is that we waste an enormous amount of time and energy distancing ourselves from sitting in this reality.

If not engaged in outright avoidance, we prefer to channel our experience of suffering through some pre-determined narrative to make it more palatable. You know the stories. The ones with a villainous other who we can blame for all our troubles – because anger feels so much more powerful than pain. Or the one where I am an overcomer, harnessing the power of <insert religious or self help or political or whatever story line> – where any feeling or experience that exists outside the lines must be brutally repressed.

There may be some truth in these interpretations of events – either an injustice to fight against or a power which transcends my suffering. I’ve certainly experienced both. But there’s more to every story than that.

Life is not easy, and neither is it simple.

That should be a depressing thought, but I find it liberating. No more tilting at windmills. No more sticking to a script. Instead I can just be.

After all, easy is a modern invention. Fast food and instant everything grooms us to expect POOF! Humans have been living hard lives, even harder than mine, for thousands of years.

Can I trust life, and God, and my own humanity enough to face reality head on… to dig into it and let it unfold? Unedited. Unpolished. Unrushed.

Life is hard and life is complicated. Important things usually are.

So here’s me, just as tired and frustrated as ever, but feeling a little less sorry for myself.

 

1 Comment   |  tags: , , , | posted in Cancer

February 27, 2016

An Apple a Day

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

There are 740 unopened emails in my inbox. I used to blog at least twice a week; this year I’ve posted once, all year. I can’t remember when I last scrubbed my toilet, mostly because I forgot where I keep the toilet brush. I know I have one. Somewhere.

It’s probably not a surprise that I spend an inordinate amount of time staring blankly into space. Thoughts come and go, but the energy to shape and communicate them coherently remains elusive. I have wondered if this is depression. But it seems nothing like the dark heaviness that others have battled through. If anything, I feel emotions more sharply: incandescent joy, crushing sadness and chilling terror – and that’s just a night of Netflix. Don’t get me started on American politics.

There is so much right now. So much everything. And I feel unpeeled.

Which sounds like one of those dire, but vague status updates on Facebook. Obnoxious with its lack of information and obvious in its desire for sympathy. I apologize. Listing my every struggle and concern seems equally distasteful, but it does make me feel better. After all, writing is cheap, accessible therapy for me.

I have teenagers. I have special needs children. I have chemotherapy to administer each night and a marriage to maintain. I have homework from a university course (Spanish) as I inch toward my English degree. I have four children in three schools; two only part-time. I have physiotherapy exercises and pounds to lose. I have meals to make, friends to call, medical appointments and therapy sessions to coordinate, laundry to fold, lunches to pack… all the side effects of a wonderful, overwhelming, messy life.

And the driving. Oh, the driving.

It’s exhausting.

Life is very much right now. Small and urgent and in the moment. It reminds me of our brand new baby days, when my own identity was wrapped in and around the life of another; when ‘survival mode’ became normal.

Last month they wheeled my baby girl out of the operating room after injecting chemo into her spine. As they hooked her up to oxygen, a SAT monitor, a blood pressure cuff… I calmly ate my apple. She isn’t able to eat before a procedure so I’ve learned to snack while she’s getting her lumbar puncture. She has one almost every month.

It used to be a nightmare. I’d cry every time they ushered me out of the room and wait on pins and needles. The oncology nurse looked at me oddly as I crunched away on my snack. There was nowhere to put it down. I considered throwing it out, but it was a particularly good one, crispy and sweet. Ambrosia, my favourite kind. And I was hungry. So instead I shrugged my shoulders and kept chewing. I told her, “I’m pretty sure you can get used to just about anything.”

In the room next to us a mom was crying her heart out. Her child had been diagnosed that day. There seems to be at least one of these each time we visit. The other reason parents might be crying in the oncology department of Childrens Hospital is something I cannot bring myself to consider.

Here I am, in the middle of all this, eating my damn apple.

 Apple a day from Flickr via Wylio© 2012 Patrick McFall, Flickr | CC-BY-SA | via Wylio

So here’s me.

7 Comments   |  tags: , , | posted in Cancer

January 18, 2016

Resolution for the Rest of Us

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

My new year started out with a familiar deluge of upbeat, life-is-your-oyster, choose-to-be-your-best-self, God-has-good-plans-for-you messages. All across social media, on the radio and even on TV I’m confronted with peppy advice and positive perspectives; hints for finding success and happiness in our first world lives.

There’s nothing wrong with them. Some are inane and trivial. Some are actually quite brilliant.

But they hurt.

They sting, because most of the time they don’t apply to me. Not this life. Not this year, especially.

2016 is not going to be ‘The Best Year Ever.’ I’m not going to accomplish daring goals. I’m not even going to set daring goals. I’m just going to try and get through the day.

Cue wallowing.

That parenting article that makes me feel so small. The inspirational TED Talk which I’d love to implement, but can barely find time and energy to watch. That mocking meme that hits a little too close to home.

It’s not so much that I’m feeling sorry for myself, but I’m frustrated with a culture that assumes we all have the same choices. Cutting diatribes cast people as winners or losers, right or wrong. Simplistic solutions are peddled without compassion. Complexity is whitewashed away. We act like everyone is on the same page.

I suppose it’s inevitable that humans take our own power for granted. No doubt a terrified Syrian refugee would read my blog and wonder why I’m so whiny. Yes, our family must wrestle with cancer, special needs, mental illness and sleep disorders, but we have a comfortable home, modern healthcare, a supportive school system and more options than most people in the world can dream of. My normal is one person’s dream. And another person’s nightmare.

We live in an airbrushed world. We worship the polished finished product and disdain the messy process. We desperately deal in miracle cures and magical thinking. We cut this out of our diets and add that. We lay blame. We turn up our nose at those ignorant schmucks on the other side of the latest debate. We put our faith in believing the right thing and eating the right thing and doing the right thing.

Anything to avoid the niggling sense that maybe, just maybe, we aren’t in control. That shit happens. And sometimes it happens to me.

I’m the same. My life may be extraordinary compared to most, but I’m not. It feels like failure to admit my limitations, even to myself. Like something to be ashamed of.

Each year I pick a word. One word as a focus and a mantra; my year long prayer. It’s supposed to be inspirational.

This year my word is:

crawl

Which seems like a sad joke. After all, my last blog post was about arthritis and my newfound limp. I’ve realized that success looks different for each of us. It looks a little different each day. Maybe each moment. We take what we’re given and do the best we can.

Some days I’ll rise up on wings like the eagles; others, it’ll be all I can do to keep moving. That momentum is the difference between anger and bitterness, between taking a break and giving up, between living and existing.

There’s a unique beauty in the shuffling gait of the overwhelmed, the imperfect. It’s not smooth or pretty and it’s not going to win any ribbons. But it’s authentic and human and real.

crawl

So here’s me, still moving. And that’s resolution enough these days.

 

10 Comments   |  tags: , , , | posted in OneWord 2016: Crawl

December 11, 2015

Limping Through Life

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

I’m not training for a marathon. I never have. I probably never would have. Apparently it involves a lot of pain and work and people all around and the possibility of peeing your pants (or worse). Even if I were in tip-top shape, that’s not my idea of a good time.

But I liked that I had the option… that I didn’t do marathons, simply because I didn’t want to. Alongside thousands of other opportunities I never knew I valued. Not the doing, but the choosing. The happy delusion that one day (if I wanted to) I would climb every mountain, ford every stream and follow every single damn rainbow.

I realize now that I’ve been downplaying it for years. “Just bad knees.” After injuries and surgeries and therapies I’d gotten used to the snaps, crackles and pops. The sounds really gross my kids out, which is always fun. Even the doctors made light of it – “might have a little arthritis, not much you can do…”

I’m knock-kneed and flat-footed and at 19 the orthopaedic surgeon told me the structure of my knee was “weird.” I knew I could anticipate arthritis eventually.

Frankly, arthritis seems like the kind of eventually that happens to old people. Maybe I’d get it at 60 instead of 80. But I honestly didn’t anticipate hobbling around on my 40th birthday.

I went to the doctor this week expecting surgery, perhaps more drastic than before, but still – the man’s a surgeon, isn’t that what they do? Snip, snip… take it easy… back on your feet in no time.

Image from page 110 of "The classification and treatment of diseases commonly known as rheumatism" (1910) from Flickr via Wylio

© 1910 Internet Archive Book Images, Flickr | PD | via Wylio

I did not anticipate him telling me that the injury I’d gotten last month was the least of my worries. Driving home the point was the sound of bone grinding on bone as he noted the complete destruction of all the cartilage under my knee cap. There’s a few treatments: physiotherapy, lose weight, Tylenol, shots… but it’s all symptom management. Eventually, when it is too painful to walk, they’ll replace my knee with an artificial one.

In the meantime, I fell back into old habits. Downplaying. “This is so annoying! I don’t have time for this…” I said (as if it’s merely inconvenient). I declared myself grateful not to be a hard core athlete (glossing over the activities I actually do enjoy, like: hiking, kick-boxing, skiing, dancing in the kitchen with my kids and walking up the stairs one foot at a time). I told everyone that this is the least of our problems (how dare I cry over this when there’s cancer in our home, when others are dealing with so much worse). There’ll be good days, when everything works and feels better (don’t think about the bad days, don’t think about the bad days…). I tried to act like it didn’t bother me. I tried to feel that way too.

But it’s not working.

I just turned 40 and I’ve got degenerative arthritis. I have to wear a knee brace to walk and it hurts like hell and it might never get better. No matter how I play it, to myself or others, I’m actually freaking out. Frustrated, worried, disappointed, and sad – with undertones of embarrassed and guilty (not sure what that’s all about).

I was working on a blog post titled “Lessons from the Vortex” the past few weeks. It’s the kind of writing I find easiest to publish. ‘Look at me, all wise and heroic, finding order in chaos.’ Isn’t that nice?

Woman-in-process material is a lot less inspiring to others, less flattering to me. I’m not feeling particularly eloquent on the matter. The only words buzzing around my head these days are: can’t, can’t, can’t, can’t, can’t…

It sucks. I hate it.

I’m not ready to mine it for lessons. Or pretend that ‘God never gives us more than we can handle.’ That’s not a real thing, by the way. I’m sure the woman in my online cancer mom support group can attest to this – while one daughter is in hospital with a cancer related illness, she’s at another hospital giving birth to a stillborn baby.

There are so many stories like this, far worse than mine, far more overwhelming. Life is full of horrible shit, layers and layers of hurt and loss. Those of us trying to swim to the surface can’t bluff our way out. Though some try, and take longer than ever to surface, the truth is… we’re drowning.

Eventually we lose our grip on ‘nice’ theology, a first world philosophy of life where the only people who fail are the ones who just didn’t try hard enough or believe the right things. What’s left in its wake is sturdier and more compassionate anyway: knowing that we all get more than we can handle at some point. That’s the human condition.

My whole life is a marathon these days. Apparently it involves a lot of pain and work and people all around (some of whom are peeing their pants regularly). I’m hobbling and barely keeping pace, but I’m still moving.

Maybe I’ll see the lesson in that tomorrow.

3 Comments   |  tags: , , , , | posted in grief

November 6, 2015

So This Is Forty

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

I’m waiting. Cursor blinking. Bated breath.

For the epiphany.

The flash of insight that will make this birthday somehow mean more, and less, than I expected.

We’re none of us really grown up on the inside. Being comfortable in your own skin is the best gift of all. These aren’t wrinkles around my eyes, they’re laugh lines, and that makes all the difference. Age is only a meaningless number (also insert ‘weight‘ and ‘income‘ as needed).

Yada, yada, yada… heard it before. Said it before. Sometimes I even mean it.

I’ve always approached birthdays, milestones especially, with intention. That same personality quirk that compels me to contemplate my life and think deep thoughts and talk about it ad naseum to all the world (INFJ). Shouldn’t forty be the same?

I wanted revelation, existential understanding, spiritual discovery… instead I’m slogging through the mire. Literally. The raccoons got in the garbage again last night. B has a viral infection, so there has been plenty of vomit and now the other… I’ve just started yet another load of laundry. After a day and night in hospital the backlog of grimy dishes seems overwhelming. The floor is sticky where I spilled a syringe of morning meds. What clean clothes we have are impressively wrinkled after a week in various baskets.

If that’s not enough to make me cry, our weekend plans, for Glen and I t0 spend two glorious days and a night at Harrison Hot Springs – without kids, are postponed indefinitely. B is home from the hospital on a pass, but we’re expected back this afternoon. She’s too sick to leave right now.

Except.

Except, I don’t feel any need to cry. I really thought I would. My life is somewhat of a shit show these days. I’m tired and feel older than my years. I’m in the worst shape of my life and beyond sleep deprived. None of my plans are working out. None. My life is not my own.

They take pieces of me, these ones that I love. Carving away my time and energy… slice after needy slice. Sometimes I feel like there’s nothing left. Fifteen years of non-stop diapers and accidents and cleaning up someone else’s crap. The worry and the hassles and driving, driving, driving.

*break. I had her tucked up into my bed while I washed the sheets from her own. Now I have yet another load of laundry to do. She’s cleaned up again, but broken hearted that Team Umizoomi is gone from Netflix. She just doesn’t understand. How could you do this to us Netflix? Why? WHY?

Back to my Reason-I’m-Not-Crying-Today. It’s not because I’m some kind of saint. Or ‘so strong’ as some people suggest, which is always embarrassing because I feel like I should explain how ridiculous it is so as not to feel like a phony. Marriage and parenting has made my ability to be petty and selfish and extremely, extremely whiny abundantly clear (see above for proof). Frankly, there’s absolutely nothing wrong with crying when life is hard. It’s a healthy and necessary reaction. And there will be crying at some point. I have no doubt of that.

But right now. Right now, I’m happy. This is a happy birthday.

It has nothing to do with being forty and wise. Or having reached my goals. Or having any thing at all.

My life is not my own. But those I share it with, share their lives with me too.

This morning they tried to let me sleep in. Twice the boy snuck away and tried to climb into bed with me. “I missed you so much Mommy” he’d yell (the inside voice/outside voice lesson isn’t really sticking). When it was time, he snuggled up beside me, then on top of me, then kissed what parts of my face he could reach. His gift: that I am his favourite person in the world and I will never run out of hugs and kisses.

B made a unique and sparkly necklace at school. She likes to point out every single colour of every single bead over and over again. She’s absolutely tickled that I wore it today. Every once in awhile today she gasps and says “happy birthday Mama!” – each time as if she’s realizing for the first time and is blown away by the magic of it. I know from experience that this will carry on for several months. Her gift: that I am celebrated with genuine enthusiasm, that everything I do matters and I will never, never go out of style.

My teens made me beautiful gifts also. The kind of art that I appreciate for its own sake, as they have grown in creativity. From L, a painting that represents each family member, symbols we’ve talked about before. From C, a beautiful and insightful sketch of her sister – putting her fight with cancer, her imagination and her dreams of the future all into one image. From both, a ‘flower’ arrangement made out of my favourite candy. Their gift: that I am heard, that I am a small part of the people they’re becoming and the ways in which they’ll make the world better.

My husband gave me a gift that was a true surprise. It’ll cost him more in worry and stress than in funds. He remembered my futile (I thought) longing to try para-gliding and has put the plan into motion. His gift: that I am known and understood, that there are always adventures ahead and someone who’ll hold my purse for me.

What’s more, I have birthday wishes from amazing family/friends and virtual strangers and everyone in between.

As I sat down to write this, a friend texted me a picture – she had her baby. Today! A sweet, tiny little human, with her whole life ahead of her.

Baby girl – you can count your age in hours, while I have forty whole years under my belt, but we have a lot in common. All the stuff that really matters.

It’s terribly hard work being born. And sometimes, it’s terribly hard work living life. But we are surrounded by people who love us fiercely. We have a world of opportunities ahead of us. There are so many things to learn and experience; mistakes to be made, for sure, but masterpieces to create and friendships to build as well.

Old people like me make it all so horribly complicated. It doesn’t need to be… Love. Be loved. Enjoy a nap when you can.

There’s a chill in the air, the first taste of winter, and it’s raining outside. It’s a good day to be alive. It’s a good day because we’re alive.

Happy birthday!

 

4 Comments   |  tags: , , , | posted in Uncategorized

October 31, 2015

Day 31: Peace In My Time

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

The challenge was: blog every day for 31 days in October. I’m actually laughing thinking about it.

I knew it was a stretch. I knew my husband had not one, but two trips away this month. I knew I had a number of hospital days and appointments. I knew that I was barely making it through the days as it was, only to add another layer of complication. And all this sounds more and more like a recipe for disaster; one more overachieving pipe dream to add to my “Reasons-I’m-a-Giant-Failure” diatribe whenever emotion overwhelms reason.

But it actually helped.

All 16 out of 31 days that I actually succeeded, and even the other six posts I started but never finished.

I told my stories. I put thoughts and hopes and confessions into black and white and sent them out into the world. Somehow those parts of my life make a little more sense to me after that. I suspect it’s the magic behind talk therapy, sympathetic pastors and bar tenders, and the best in-case-of-a-rainy-day friendships.

It’s important to feel the feelings, even the ugly ones… especially the ugly ones. To parse our own words, finding some amount of meaning and purpose in every experience. To be heard and see the reflection of our thinking in another.

A commentor raised some good questions about the nature of anger a couple weeks ago. My friend made the point that anger itself is healthy and possibly necessary. The counselor I saw yesterday poked the same spot.

Could it be that the emotions and the experiences I label as ugly are simply human? Unpleasant, maybe. Difficult, for sure. But not the enemy. Why do I default to a binary interpretation of the world? As if I must filter everything I feel, everything I am, into good or bad.

Freedom from Flickr via Wylio

© 2011 Isengardt, Flickr | CC-BY | via Wylio

Maybe life isn’t full of monsters after all. Not even the messy, scary, hard things… Maybe this is just life. God knows I’ve spent a lot of time and energy trying, trying, trying. I’m no more or less: loved, and acceptable, and the person I should be, for it. The verse keeps coming to mind: “It is for freedom that Christ has set us free…” (Gal 5:1). Freedom. A free life.

It’s time for me to stop battling every little thing and just live. That’s what I’ve learned this past month. Battling life’s monsters has become living freely.

Finding the beauty. Pressing into pain. Giving myself permission to struggle, and fail, and try again. Giving other people permission too. Hoping for the best. Forgiving. Deepening faith. Letting go.

The monsters aren’t so scary after all.

Except for cancer. Cancer can still kiss my ass.

3 Comments   |  tags: , , | posted in 31 Days Challenge

October 22, 2015

Day 22: Catharsis, the Cheap Alternative to Complete Meltdown

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

I punched cancer in the face yesterday.

For real. My hardest right hook. Which would have been a lot more impressive if I wasn’t crying and blubbering at the time.

In days past I belonged to a kickboxing gym and I’ve recently joined again. It’s not quite as bad-ass as it sounds. A cardio circuit for women only called 30 Minute Hit; more like Curves than training with Van Damme. But I feel pretty tough when I’m there.

I feel guilty saying it, since I’m actually a pacifist, but it feels really good to hit things.

I’m not a fan of exercise as a genre, but this is something I enjoy. Glen said it’s because I have a lot of repressed rage. At the time I disagreed. Repression isn’t usually my thing.

Yesterday was my first time back in years and, as the ache in every single muscle of my body can attest to, I’m in the worst shape of my life. I probably should’ve eased my way in gently. That was the plan.

punch cancerBut then there was the t-shirt… on the rubber man at the final station with the word “cancer” on it. And I had to give it the beat-down cancer so richly deserves. While crying like a baby.

I then poured my life story out on the trainer. Who was also a bit teary at this point. I got hugs from both the staff on my way out the door. If they didn’t remember me before this, I bet they will now.

Phew. Felt good. Slightly embarrassing, but mostly good.

Catharsis (from Greek κάθαρσις katharsis meaning “purification” or “cleansing”) is the purification and purgation of emotions—especially pity and fear—through art or any extreme change in emotion that results in renewal and restoration.

That’s what this blog often does for me: cleansing of emotion through art. Apparently punching works as well.

We’ve been in survival mode for so long I haven’t even begun to feel all the feelings. After the first week of diagnosis I hardly cried; barely a tear during six of the worst months of my life. And that was a good thing: adaptable, practical, neccesary. But the feelings won’t be put off forever. The good, the bad and the ugly, the many, many, many feelings cooking away in here. It’s time to clean house. If I can get myself back into shape along the way, all the better.

4 Comments   |  tags: , , | posted in 31 Days Challenge