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.

The Year of the Dead Eyed Shuffle

I was in a new year frame of mind last week. I even chose my One Word for the year. My annual weapon against resolutions and inevitable despair. A simple mantra and ongoing prayer all rolled into one.

I didn’t choose the words that first came to mind when I thought of the year to come, the ones that I try not to say in front of children. I may want to cross stitch this on a pillow some day. Though, come to think of it, that would be a kickass cushion.

But I was going for something more cheesy uplifting…

So here it goes:

2015, the year I will learn to “Treasure” what matters most.

Even now. Especially now. In the midst of all the horrible and crazy.

I was: Determined to be fully present, deeply grateful for each special moment and person in my life; Optimistic, filled with purpose, resolving to write/exercise/eat healthy/go to bed early/parent heroically… every single day… without exception; Deluded, convinced that I would, that nothing could hold me back.

The Crappy New Year of Cancer was not going to keep me down!

I am an Overcomer. Lover of Life. Maker of Lists. Unstoppable.

Did I mention deluded?

And so very stoppable.

It’s hard to say what tapped the brakes first. It was the culmination of a hundred little things. The stomach flu. Twisting my ankle. Traffic to and from the hospital every other day. A leaky toilet. Trying to keep a sick, needy boy separate from his immuno-suppressed, equally needy sister. My husband chipping his tooth on a brownie. A nightmare trip to an ill equipped local ER. A hole in my favourite sweater. A broken closet door. Another nasty infection landing B in children’s hospital after only three weeks at home.

Suffice it to say, my new year state of mind didn’t last long. Cue despair. Tears. Who was I kidding?

My prayers often start with one word. “Really. Really?”

This is our life. I can’t wish it, or manage it, or sheer positive will-power it better. I can’t even pray it better. I can’t do anything to change most of what’s coming our way this year.

But I can treasure it. Not in that phoney “let’s-pretend-this-shit-smells-sweet” denial way. In digging out what we can. In the glimpses of beauty, the sudden rush of fierce love and the bizarre epiphanies that only suffering supplies. In the everyday riches and common grace that slips below the radar. In the peach fuzz of a bald head, the passionate absurdity of a tantrum, the predictable rhythm of sibling conflict, even the easy comfort of an equally weary love.

I may not stride purposefully through 2015 as I hoped. I may not skip and dance in triumph. I expect it’ll be more of a zombie-esque lurch. One foot in front of the other. Sometimes I’ll stop dead in my tracks. But even then, through tears and exhaustion I’ll appreciate the smallest momentum all the more.

So here’s us, embracing life in all its magic and misery. What else is there to do?

Linking up to oneword365.com


So Here’s 2014

This year will always be defined by a single event. A single phone call on October 28th. A single word spoken by our family doctor. Leukemia.

It has subsumed almost everything in it’s path. But there was more to our life before. And there is more to our life now. That’s a good thing to remember.

2014 was mostly a good year. And life is more than cancer and chemo and hospital stays. Even there, it trickles into the cracks.

As B smiles and waves and calls out cheerful “hellos” to all the people we pass as the porter pushes her wheelchair to and from the oncology ward – her own personal parade route. As big sisters step into the gaps, mature beyond their years. As friends and strangers shower us with support in the form of food, money, gifts and prayers. As we find humour in the darkest places, like the generic gift assigned to B that just happened to be several bags of hair clips and a giant hair brush – worst. gift. ever. We had to laugh (especially because she loved that stupid brush all the same).

baldisbeautiful

Life is bigger than cancer.

Love. Hope. Faith. God. All bigger than cancer.

That’s what we’re banking on.

So here’s us, as seen through our favourite posts, in 2014…

January

shoes

Putting Myself in Her Shoes

There’s noise buzzing beside my head… loud, annoying. I hold my marker tighter. Lean closer, closer, closer. My nose is filled with the sting of ink.
scratch.
scratch.
scratch…  

February

couch

Once Upon a Marriage

It wasn’t easy, getting married as young as we were. But we were too stupid naïve, too thrilled with our new-found freedom and togetherness to care.

Remember the hideous second-hand couch we were so excited to receive? It was SO uncomfortable! But we threw a green sheet over it and decided we were really grown ups now. At our age uncomfortable seating didn’t seem like such a big deal. Besides, it was just temporary. Eventually life would get easier, better, more secure

Read More.

March

by michael svigel the christian post siftingpoint.com

by michael svigel the christian post
siftingpoint.com

Confession Time

I’ve been cheating.

Unfaithful.

Stepping out.

On my church. With another church…

Read More.

April

house

The Stranger: A short story

The Señor is enthroned in a frayed green armchair on the other side of the room. Straight-backed, legs planted wide, with a cane in his hand like a sceptre, he scowls over the coffee table at me.

“Well… you gonna come in, or what?”

I’ve never encountered a more intimidating stranger…

Read More.

May

life

I Live In Between

Most of my life is spent in a place of too much and not enough.

Too much to do, and not enough time.
Too much stuff, and not enough space.
Too much eaten, and not enough activity.
Too much spent, and not enough saved.
Too much stress, and not enough rest.

You get the picture. You probably live in this picture too. Most of us internet-trawling, Facebook-posting, smart-phone-clutching, Consumers-and-Users do. We don’t want to. We don’t plan to. We read and write and repost all sorts of things to avoid it. But, it’s the curse of modern life

Read More.

June

First steps in the door bringing our new son home forever!

Two Years Ago Today!

Unpacking

The tag on the back says “12 mos” – a measure of size and not age. I shake out the blue and white checked pants before folding them, tangible proof that our almost two-year-old is much smaller than most his age. Tiny shirts, pants, footie pajamas and an impressive array of cute onesies emerge from cloth shopping bags, filling the mostly empty drawers.

I move the size 2 outfits we’d purchased to the closet. The weight and height measurements we had gleaned from medical files did nothing to prepare us for the Lilliputian dimensions of our brand new toddler.

Brand new to us, that is. Up until now he’d been an abstraction, the idea of a son sketched out in black and white via e-mails and social workers’ reports

Read More.

July

Yes - those are hockey sticks. How Canadian.

Yes – those are hockey sticks. How Canadian.

Beyond Obligation

He has been contractually obligated to love me for 19 years. And I him.

Half my life. My entire adulthood tied up in another person. And his in me… 

Read More.

August

photo 2

Raising You is an Art, not a Science

Dear 12-year-old,

Before you, I thought parenting worked like science – laws and equations, inputs and outputs, theories to be proven and disproven with clear, quantifiable results. I may not have used those words. I may not have been aware that I believed this. But my first few years as a mother, and my experience as a daycare teacher, led me to calmly assume that I could manage and mold, if not control, my children.

Your sister, who’s always been predictable, logical and mostly straightforward, strengthened this approach. I had Opinions. I took Positions on the Issues.

Then you came…

Read More.

September

apr08 136

10 Lessons My Daughter is Teaching Me

Ten years seems like a long time. A long time to be alive and learning and growing and discovering new things – and that’s just us. You’ve had a lot going on too!

In the past ten years you’ve brought us to life in a new way and taught us what matters most and nurtured our best selves and made every day an adventure…

Read More.

October

cancerbegins

That Terrible Twist that Changes Everything

Two days ago the biggest worries on my mind were: securing funding for speech therapy, my children’s potential texting addictions, and getting my butt out the door for book club.

In the space of a single phone call that all disappeared. In fact, it feels like the ground beneath our feet disappeared too. A cosmic upending. As if some powerful hand has shaken our world like a snow globe.

We are left dizzy, reeling, surveying the damage to our orderly plans and expectations. And terrified…

Read More.

November

chemo

A Bad Cancer Day

…although I wax eloquent about sharing the real story in all it’s raw ugliness, I know that most don’t want to hear it. Cute and cuddly tales from the cancer ward are much more palatable – an uplifting message with a smiling picture to boot.

But this is life too. The low points. The bad shit…

Read More.

December

The Big “C” Doesn’t Stand for Christmas Around Here

‘Tis the season to put on a happy face, some matchy-matchy outfits and show the world how fabulous it is to be me; surpassed only by the sheer joy that comes from being one of my well-adjusted children.

It’s a festive filter. Not lies so much as a iron-willed determination to focus on all the happy, and only the happy. Absolutely nothing wrong with that. I’ve often looked at a carefully staged family photo and been encouraged. Because we are those people, the best and the brightest parts of our lives.

But we’re also the dark and the ugly… 

Read More.

So here’s us, in 2014.

maya3


The ‘Big C’ Doesn’t Stand for Christmas Around Here

It’s past time for an update from me.

Long past time. Those Facebook ‘year-in-review’ cards are taunting me. Also, the mailbox full of Christmas letters, which is something we’ve always spent way too much time and energy on in the past (we are a ‘family of writers’ after all). ‘Tis the season to put on a happy face, some matchy-matchy outfits and show the world how fabulous it is to be me; surpassed only by the sheer joy that comes from being one of my well-adjusted children.

It’s a festive filter. Not lies so much as a iron-willed determination to focus on all the happy, and only the happy. Absolutely nothing wrong with that. I’ve often looked at a carefully staged family photo and been encouraged. Because we are those people, the best and the brightest parts of our lives.

But we’re also the dark and the ugly. The bickering and the yelling and the gritted teeth between flashes, the self-obsession, the focus on blemishes and fat and who-done-me-wrong, the jealousy and dissatisfaction and greed. Also, the heartbreak and grief and utter confusion, the disabilities and disappointments, the pain and suffering and dark nights of the soul.

No one wants that stuff on the record.

Which brings me to my lack of updates. I’m not sure where to start. I’m not sure what can be put into words.

Since our daughter’s diagnosis we were assured that we had the best possible prognosis (90% cure rate), a fact I didn’t realize I was banking on, until we got the news that she has an unusual mutated form of leukemia. The new number, 65%, is not nearly so bankable. Better than some, and ultimately, just a number… but it was a blow.

She responded well to treatment, although she did develop diabetes due to the meds. Shortly after our not so great news, it became apparent that she had picked up an infection from her latest bone marrow biopsy – skin, blood and, likely, bone infections, actually. Layered on top of that, a UTI and kidney troubles. A week later, a highly contagious, and frankly nasty infection called c-diff landed us in isolation. Add just a dash of liver function decline to keep it interesting.

Suffice it to say, we didn’t leave the hospital after the first month as planned. We ended up staying almost 8 weeks.

On Saturday night, we brought her home!

That’s the upside. The happy holiday snapshot that makes everyone smile. It is SO good to be home! We go back to the hospital every other day, but even that feels like a relief, because her immune system is non-existent right now, her meds are complicated and we are nervous wrecks – we’re happy to get her checked out, just to make sure. These people are on top of it, and they don’t mess around.

The other upside continues to be the support and love of everyone around us. We’re overwhelmed with gifts and food and encouragement from all kinds of people – ‘cancer swag’ is the real deal. Something about this kind of struggle taps into the kindness of all humanity.

Bureaucracy, not so much. But that’s a dark side story.

There’s a lot of dark side too. A lot of moments that don’t make the Facebook feed. We are living every parent’s worst nightmare, and there are very few moments that I’m not aware of that.

We’ve got our game face on most of the time. That’s what parents do. Get through. Research. Dole out comfort/attention/discipline as needed. Wrap up presents. Cry in the shower. Turn on the Christmas lights. Check to make sure she’s breathing.

I’m good at being a mom.

I’m just not so good at being a person right now.

I can’t read anymore, I don’t have the attention span. I spend a lot of time on Facebook instead. The stupid quizzes, celebrity news, whimsical quotes – that’s the depth I can handle. I’m forgetful and touchy and easily overwhelmed. I eat junk food, even when it turns my stomach. I don’t even make plans to exercise. Mostly, I’m angry. Not like usual, where I fuss and rant then feel instantly better. This is a low-level simmering that is far more toxic. So much around me seems pointless. And I am running out of polite.

For instance, the service industry: full of seemingly cheerful people who are paid to make inane small talk with strangers, has become a perpetual irritation to me. I used to be a cashier. It’s the job. Especially at this time of year. I get it. But it still makes my skin crawl. I’ve encountered several versions of: “What fun plans do you have this year?” and, “So, how are you getting into the spirit of the season?” and even, “You look sad, cheer up, we’re celebrating the Saviour’s birth – Christmas is the most wonderful time of year!”

I’ve started giving them an honest answer. Strangely, it doesn’t seem to be what they want to hear. My reality rudely interrupts their peace on earth.

I secretly enjoy their horrified looks. So sick of this pressure to be happy, happy, happy…

bah. humbug.

So here’s us, with the least inspiring Christmas update you’ve ever read. Have yourself whatever kind of holiday you need to have. Life is about more than just the merry. And that’s okay too.


A Bad Cancer Day

I debated whether or not I should post this… Maybe just on Facebook. Maybe not at all. In the end, I decided not to.

I wrote it on day 3. And although I wax eloquent about sharing the real story in all it’s raw ugliness, I know that most don’t want to hear it. Cute and cuddly tales from the cancer ward are much more palatable – an uplifting message with a smiling picture to boot.

But this is life too. The low points. The bad shit.

We’re 3 weeks in now, and feel decades older and wiser and more exhausted. I had another rough night, one that I’m not at all ready to write about. So instead I’ll share this. And it feels like a relief to put it out there.

If you know and love my daughter, you may want to scroll past these ones. I’ll post something cute another day. There’s still plenty of cute.

* * *

It’s my first free moment in five hours. I might have taken 2 minutes to eat an ice cream cup for dinner. An ice cream cup I stole from the fridge full of patient snacks. That’s right, I steal from sick kids these days. Those IV poles slow them right down; I’m pretty sure I could take them.

Did I mention my inappropriate humour is on overdrive these days? I’m pretty sure there’s a psychological explanation to explain away anything I do and say right now. Carte blanche.

This afternoon, as I comforted my moaning and uncomfortable child, I assured her visiting uncle that a person can get used to anything. That even as her unhappiness caused him distress, I was taking it calmly in stride. Not because I’m a monster, but because I was getting used to being cancer-parent. Day 3 since diagnosis, and already a pro.

I’m just a fast study, I thought smugly. I got this.

Except for the part where I didn’t. And I don’t. At all. I don’t have any control here. I can’t fix this and even my best efforts are like fighting a forest fire with squirt gun. Useless. Helpless.

I’m relying on the professionals. And they really seem to know what they’re doing. And they really seem to care. But even with all their training and all their equipment and all their impressively long words, sometimes the fire wins.

Tonight discomfort turned to pain. My daughter screamed and cried and begged me to make it better.

I could only pretend to be calm. For her sake.

She may have an infection. Probably. Maybe. Or probably not. The story changes with everyone we talk to. While there are plenty of “infection fighting cells” in her blood (neutrophils) they aren’t doing their job that well. They only look the part. We’ve changed to a stronger antibiotic which we hope will kill that infection dead. If it is even the infection causing her escalating fever. It might just be the cancer. Maybe. Probably. There aren’t really many answers.

And the nasty leukaemia cells (blasts) are filling the marrow of her bones. Which makes them hurt. Her bones hurt. Not the achy, “maybe it’s gonna rain” kind of pain I’d imagined when I read this in a list of symptoms, but something much much worse.

And she had a small surgery to implant a tube into her, near her heart, which is a Very Good Thing in the long run – easy, painless blood samples, IV fluids and meds. But that means post anaesthesia nausea, soreness and a strange piece of hardware sticking out of her chest. Despite my “cyborgs are cool” pep talk, this is a horrifying thing to her.

As I lay down on the very edge of her bed trying to massage peace and calm into her body while she cried pitifully, I could only think: This is just the beginning.

I have to explain that, no, we aren’t going home anytime soon; and that she can’t take the tube out; and that even though she’s fallen in love with her nurse there’s a shift change right around the corner.

But her pain is the worst.

I have never prayed with such desperation. I don’t know that I was using words, but the meaning was resoundingly clear. They say there’s no atheists in foxholes. I don’t know about that. But I’m positive that even the most skeptical soul will be begging someone, or something for mercy, when their baby is in agony. It is a profoundly horrific experience. I would gladly, gleefully, gratefully suffer in her place if I could.

B is finally asleep, drugged into peace. Thank you morphine.

The moral of the story is… there is no moral that makes a story like this worth the telling. It’s just to be survived. Please God.

So here’s me, at a low point. Cancer is evil. I hate it more than words can express.


These Are the Days of our Lives: Hospital Style

I’ve been sick. A raging cold – sore throat, cough, headache, ache-y bones and general whininess. Not a big deal. Except when your baby happens to be in hospital undergoing chemotherapy.

Then it’s a huge deal.

But my body decided I needed to be sidelined. Daddy and Grandparents stepped up. I should be grateful. I am grateful. But it was also miserable not being there when she wanted Mama and I had to sing lullabies over the phone.

Last night I was finally back where I belong! Where I most, and least, want to be: in the oncology ward of children’s hospital. Just in time for another emotional roller coaster ride. Cause that’s how it goes these days.

Any illusions I had about long stretches of boredom during this experience have long since been obliterated. We have very little uninterrupted time in the day. Or the night. There are more people and procedures and poking and prodding than anyone should have to endure.

But this latest ride had an upswing. At least, as far as my daughter was concerned.

B has developed steroid-induced diabetes because of the meds she’s on. This has ushered us in to the wonderful world of glucose monitors and sub-cutaneous insulin injections, which isn’t as fun as it sounds (and it sounds horrible). After many days of screaming fits, freezing spray and restraining hugs, she decided it wasn’t that bad, and now merely complains and insists on choosing the exact spot for her needles.

Her blood sugars have been quite high. Consistently too high at night. As frustratingly unpredictable as her appetite. Revealing quickly to all involved that you can’t force my girl to do anything, least of all, eat.

While waiting for her bone marrow biopsy results they’ve put a pause on chemo, including steroids. Those results will determine the next step, so we might as well wait. Just one day, perfectly logical, why not.

Since her blood sugars have been extremely high this past weekend they’ve been treating it more proactively (read: more insulin). What they didn’t anticipate was her extremely quick recovery to normal blood sugar regulation. That, plus an even smaller appetite (without raging steroid hunger in the mix).

I stood my ground on the fast acting insulin. With her blood sugar already low and refusal to eat more than a few bites of dinner, it just didn’t make sense. I’m learning to stand behind my instincts as a mother. Even with professionals in the mix. The nurse herself seemed hesitant, so that sealed the deal. “Blame me” I told her, as she paged the endocrinologist again. “Tell them I won’t allow it.”

I should have questioned more. Or maybe it’s just one of those things. Her blood sugars have spiked overnight more than once, so a slow acting 12-hour insulin didn’t seem like a bad idea.

It was.

Thankfully they are monitoring her closely. I’m so grateful that they repeatedly stab her with needles while she sleeps – how bizarre is that sentiment? Her alarmed nurse woke her up to drink a large glass of juice and eat a snack. It took cajoling, but she is a fan of her new nurse (a man – which she finds fascinating) so she came around.

After the next poke, 15 minutes later, she was woken again with more urgency. We were relieved she was still responsive.

He came back to the room dumping handfuls of Halloween candy on her lap. I’m sure she heard the angels sing. After a week on a strict diabetic diet this midnight candy feast was like a dream come true!

She sat up in bed, cramming chocolate and gummies in her mouth as fast as she could, a huge grin on her face and a suspicious look in her eye.

Brent is now her favourite nurse. Ever.

I didn’t find this quite as fun as she did.

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So here’s us, living up to our unofficial family mission statement: Never a Dull Moment.


A Good Cancer Day

Today is my birthday.

Today my little girl started a new chemotherapy drug.

Today we cut her hair off, because it is going to start falling out soon.

This doesn’t seem like the recipe for a good birthday. Or a good day. Or even a tolerable one. I was fully prepared to let this whole ‘celebration’ concept slide. Not really feeling it. My smiles are pasted on, replicas of the real thing; polite reflexes to communicate my real appreciation for the ridiculous amount of support pouring our way.

There’s nothing like cancer to awaken the selfless impulses. Not the saintly ones forged in empathy, discipline and hard-won maturity. The parenting ones that roar to life in fear and desperation. I barely blinked when we cancelled our Christmas trip to Disneyland, and our 20th anniversary getaway to Mexico, and postponed my writing projects and school aspirations. I happily camp on a mat on the floor beside her bed. I hardly remember to eat or wash or go to the bathroom. Life and death is in play, and the world has narrowed drastically.

But this is no short term crisis. Life doesn’t begin after cancer. Life is right now. Two long years stretch ahead of us. And they will be different, hard, with all sorts of frustrations and heartaches. But if we’re going to make it through, we’ve got to live.

Today had it’s hard parts. Kissing my son goodbye with the vague promise to see him “sometime this weekend.” Holding my daughters arms and legs down so the nurse could hook the IV up to the tubes in her chest. Catching a glimpse of her cropped hair, looking shorn and strange.

But it was still a good day. Today I took a break. I woke up in my own bed, snuggled my son, talked to my big girls, ate a casserole for breakfast (so much better than granola bars and pilfered hospital food). Today I enjoyed a visit with a friend who just happens to specialize in cool haircuts, ate ice cream for lunch and hugged my husband. Today she felt good, her counts were up, the nurse hep-locked her IV and we got to explore the far reaches of the hospital, including a huge empty stairwell. Today I howled like a dog and laughed and sang and listened to the echoes without ever checking the clock, or worrying about the next thing to do, or feeling silly for acting like a child. Today I lay beside my daughter and listened to her breathe until she fell asleep. I can’t remember when I was more acutely aware of how precious each moment we have together is.

I suspect cancer, for all the many ways I abhor and despise it, will also make life sweeter. As long as I remember to live it.

So here’s us, on the brink of death, like every other human being on the planet. We just notice it more.

 

 

 


That Terrible Twist that Changes Everything

Two days ago the biggest worries on my mind were: securing funding for speech therapy, my children’s potential texting addictions, and getting my butt out the door for book club.

In the space of a single phone call that all disappeared. In fact, it feels like the ground beneath our feet disappeared too. A cosmic upending. As if some powerful hand has shaken our world like a snow globe. We are left dizzy, reeling, surveying the damage to our orderly plans and expectations. And terrified.

Was it God?

Or something less mysterious, some faceless force?

Chance?
Biology?
Cancer?

I blame Leukaemia.

Our 10-year-old daughter has it. Our tiny, charming, iron-willed sweetheart has this disgusting disease.

She wasn’t sick that day, the morning before we got the call, just infuriated as I forced another routine blood test on her. Screaming and betrayed by it, as usual. Then happy as a clam 20 minutes later, also, as usual. Everything seemed normal that day. She hadn’t been sick. We had no warning, no foreshadow, just a punch in the gut when we least expected it.

I’m writing to make some sense of all this. It’s moving so fast. And my brain is moving so slow. That feeling when you walk into a room to get something, but you can’t remember what. The fog. I feel like that – all the time.

They kept asking us “do you understand why you’re here?” Over and over. Were they expecting more tears? Are we doing this wrong? What a stupid thing to think at a time like this. But I need to know we’re helping her, somehow. Even by going through the right motions in the right way.

We must looked stunned and stupefied. Which, of course, we totally are. But I’m hoping it plays as competent and calm.

There are already sparks of hope in the story, hints of Providence and amazing wonderful generous people all around us, holding our world, and us, together. There will be more, I know. I’m grateful. I’m making a list.

But I don’t need to write about that, not now. Maybe not ever. There are already lofty, inspiring stories out there aplenty. After all, kids with cancer = sentimental goldmine.

Which, you know, kind of pisses me off. I’m so sick of being brave and inspiring and wise. Since I’m actually weak, scared shitless, and incredibly ordinary. In thousands of ways I cleverly conceal. Because who wants to be known as the mom who just fell all to pieces and swore in front of her kid (and in her prayers, and on her blog) and yelled at her shell shocked husband for sleeping too much and not helping out enough?

Well, not me. That’s for sure.

So I’m writing to process, to make sense in my own mind of all that is happening so quickly. And hopefully get through it with less yelling and falling apart, and more loving my family.

The best I can at least, because it is happening so fast. And I’m pretty sure when this stuff happens we’re all weak, scared, and incredibly ordinary in the face of it. That’s life.

Right now I’m hoping that they can surgically implant a tube near my daughters heart, so that we can pump powerful drugs right into her bloodstream. The sooner the better. That’s right. Two days ago we were planning for Halloween and tonight I’m praying for chemo to start ASAP. Surreal.

Feel free to follow this journey in my blog, but don’t expect the pretty version. So far this experience is raw and exhausting, yet somehow closer to the pulse of life than usual, with gusts to boring and mundane. A bizarre mix. That’s life.

Our daughter, meanwhile, is the hero of the story. As usual.

So here’s us, in the well staffed, cheerfully decorated hell that is children’s hospital.

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Losing My Baby

What’s it like?

Like nothing else
Like something I can’t explain
Like everything sad and profound and beautiful,
all rolled into one
Bittersweet love.

It’s common, but never ordinary:
A crushing, soul-deep pain,
A precious, primal connection.

Life spins on
Time races by
But part of me is always there,
back then,
Holding him in my body
in my arms.

October 15th is Pregnancy and Infant Loss Remembrance Day around the world.


The Lunch Outing

She bustles. She flutters. A beleaguered caregiver with a collection of tarnished keys jangling from the lanyard around her neck. Flitting from one charge to another under the fluorescent glare.

This one needs help putting the straw in. That one is fumbling with a cardboard container. Reminders to wipe messy chins. All the while her cheerful stream of chatter diffuses frustrations and awakens warm smiles.

The bright red and white industrial decor of this road-stop McDonalds softened when this crew shuffled through the door.

The eldest has bloodshot eyes, one trembling hand and another that lies useless beside him. His wheelchair is a bulky affair, nothing like the sleek, sporty machines I’ve seen with younger masters. He mumbles to the woman as she passes. She leans closer, peering into his eyes, before barking with laughter. The bemused shake of her head confirms my suspicion. He’s a rascal.

At the next table sit a couple in their fifties. I recognize the round eyes and wide smiles. My daughter also has Down Syndrome. They savor their lunch in slow motion. He filches her fry and she swats his hand with a grin. They move in sync with the rhythm of long-time friends.

In the farthest table sits a woman about my age – with a dented walker beside her. She mutters and squeaks throughout her meal, lost in her own world. Her companions pay no attention. But as they leave, everyone slows and waits for her to catch up. They murmur encouragement her way.

A staff member sings out a familiar farewell, “See you next week!”

I resolve to eat here again. This time, next week.

 

So here’s my Writing 101 challenge: Death to Adverbs. A detailed, descriptive observation of strangers in a public place, without using adverbs. Show, don’t tell. I’d hate to kill adverbs forever, but it does push me to use better, stronger verbs. A good exercise.


10 Lessons My Daughter Is Teaching Me

Ten years seems like a long time.

A long time to be alive and learning and growing and discovering new things – and that’s just us. You’ve had a lot going on too!

In the past ten years you’ve brought us to life in a new way and taught us what matters most and nurtured our best selves and made every day an adventure.

Usually, in these birthday letters, I talk about all the things you kids have learned and are learning that year. I encourage you in some areas of struggle and try to share a vision of the amazing person you can/are to become. This year I’m going to do it differently. This year I want to talk about all the things you’ve taught me and how you’ve made me a better person.

Because ten years is a milestone, not just for you, but for all of us. As I look back and as I look forward, the one truth that stands out, bold and CAPITALIZED, indisputably important, is this:

I AM BETTER BECAUSE I HAVE YOU!

  1. I laugh more. You are unrestrained in your enjoyment of life. When something strikes you as funny, you howl. When the music moves you, you dance with abandon. When you feel happy, you sing – anytime, anywhere. The best part is, a little bit of this seems to be rubbing off on me. You are teaching us to Carpe the heck out of each Diem.
  2. I am forced to slow down. This isn’t an easy lesson for me. In a world of rushing and pushing and trying to squeeze more in all the time, you insist on half speed. Whenever I say “hurry, hurry” you indignantly reply “no! slow, slow!” and deliberately downshift to Barely-Moving. At the time, this does not feel like a wonderful, life affirming lesson, nor do I calmly accept the defiance. BUT, I’ve learned to avoid rushing as much as we can. I’ve learned to see it as the enemy. I’ve learned that we need margins in our life, and have stopped apologizing for insisting on them. Quiet time each afternoon, early bedtimes, no to activities, yes to help… we’re not perfect, but we’re learning.
  3. I am showered with affection. I am not, by nature, a hugger. This does not exempt me from your extremely tactile love language. Turns out, all that snuggling is good for the soul. Not to mention the several times daily declaration: “Hey, hey Mom… I love you!” It’s a rare and beautiful thing to receive such unfettered, unfiltered, unlimited affection.
  4. I have become part of an exclusive, and usually encouraging, community. There is something that happens when I see another person with Down Syndrome, they are an instant friend (much like you and the entire world on a good day). There is a sense of kinship we share with all other families who live with special needs, even those we might not normally click with. There is an ever expanding team of professionals who are assigned to support us – behind the official designations and job descriptions I’ve found some of the most wonderful human beings and even, some true friends. Sure these relationships can be bumpy, the stakes feel high and sometimes we disagree and debate and shake our heads at each other. But we are united in our unshakeable belief that our lives are better for having you.
  5. I am becoming more patient. I was a strict parent before you, one with extremely high expectations. I don’t regret that, but I’ve had to adjust to your needs. Your life is very stressful. For a personality that craves control and predictability the world of disability is particularly trying. I can relate.
  6. I have a front row seat to the cutest show on earth. Seriously, you are the most adorable 10-year-old on the planet. Everyone agrees.
  7. I celebrate small achievements in a big way. We  don’t take your success for granted. You work ten times harder than the rest. Your determination looks a lot like stubborn, even impossible some days, but ultimately it is your greatest strength.
  8. I have developed compassion. I can’t pretend that this life is easy, for you or for us. It peels away any pretense I had about my own saintliness (sorry strangers in the grocery store who assume I deserve some kind of reward for “giving birth to an angel”). The truth is, I’m selfish and shallow and silly in ways I never noticed before. Aren’t we all? And each life is harder and more complicated than an outsider could imagine. I’m learning not to judge a person based on their neediness and messiness and general dysfunction, because I understand grief and exhaustion and being overwhelmed better than I ever did before.
  9. I will never go out of style. This one feels bittersweet. I will never have an empty nest, not really. Yes, I expect you will live independently and have your own full life. But you will always need me in a way my other girls won’t. I will always have a shopping and travelling and movie companion. I will always have snuggles and giggles and silly dancing to the radio.
  10. I see past the myth of normal, the social masks and the competitive games, to what really matters. Sometimes the rest of the world seems ridiculous, stressing about grades and position, looks and social status. Health isn’t a given in our house – muscles that are strong enough to run and jump, a body that fights off illness, the ability to speak and be understood, to see and hear and feel the wind on our skin, to give and receive love… these simple pleasures trump all the superficial we build our life around.

So here we are on your birthday, but the best gift is mine. It isn’t always easy. I don’t get it right all the time. But being your Mom is a joy and a privilege. Thank you! Happy Birthday!

Love, Mom

And now, a few words from Dad…

Dear B,

Is it really a whole decade since you made your surprise appearance nearly a month ahead of schedule? It was just the first of many times which you’ve shattered all my expectations and changed my life – always in the best possible way.

This year it was your reading, which has improved spectacularly. What a treat it has been to sit down with you and have you read an entire storybook to me! I know how hard you have worked on this, and I am so proud of what you have accomplished!

Your talking is also getting so clear – not that you’ve ever had any trouble communicating exactly what you want. Just yesterday you came up to me, pointing frantically inside your open mouth. “Tongue?” I asked. Nope. “Teeth?” Nope. “What do you need, B?” With hopeful eyes, you said without hesitation: “Cheesies. Cheesies in my mouth.”

One of the big highlights for me this summer was being able to watch you in your music class – or “dance class,” as you called it – at my office. And maybe it was a dance class, because you danced your heart out each and every day, with an ear-to-ear grin all the while, and frequent waves to make sure I was paying attention. You especially loved Tommy and his drums; whenever you did stop dancing for a few minutes, you were quick to grab a bongo drum to bang on in your seat. Your energy was infectious!

Speaking of music, this has definitely been the year of Frozen. I can’t even begin to guess how many times you’ve watched that movie. But one thing that never gets old is listening to you belt out “Let it Go” at the top of your longs, dancing around our living room. I remember you seeing Elsa and Anna at the Calgary Stampede Parade. As excited as you were, all you wanted to ask them was, “Where’s Kristoph?” Hopefully he’s with them when we visit them at Disneyland after Christmas!

It’s been a strange start to the fall, with school starting late this year. For a girl who loves her routine, you’ve done very well with having an extended summer. You don’t know it yet, but school’s going to be a little different this year, as you’re going to have some new helpers. You probably won’t like that at first, but I’m sure you’ll come to love them as much as they will love you.

I love you B! Being your dad is one of the great joys of my life. Thanks for always keeping me laughing!

Happy 10th birthday!

Love, Dad


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