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.
April 8, 2015

The Terrible, Horrible, No-Good, Very-Bad Week

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

…or year… or life. Or maybe it just feels that way.

Sometimes when everything seems to be going wrong, and you think “at least it can’t get much worse” – that’s when life winds up and punches you. Right in the throat.

So there you are. Gasping. Stumbling. Grabbing at everything, anything you can touch. Mind spinning. Thinking… what the actual hell?

All the other people in the room seem to be breathing without any thought at all. Like it’s easy. Like they’re entitled to it.

Our reality took a turn for the laughably pathetic last week. While my daughter was in Children’s Hospital for the week, receiving a particularly nasty round of chemo, and in isolation (because of course she had a miserable cold on top of everything else), her Dad took a shift sleeping over, so that I could see my other kids and my Dad (who’d come to help out at the last minute). But mostly so I could sleep at home, in a bed – a special gift I’ve learned to cherish at this point in our journey.

I was buzzing around, tidying up, while my freshly-washed, pajama-clad boy stalled bedtime with a cookie treat. He’s easily distracted, and doesn’t always remember to chew, and on this night, he also had a miserable cough due to cold. You can see where I’m going with this? It wasn’t the first time. Probably won’t be the last.

Which was why I was pretty calm when I first noticed him choking and sputtering. “Here we go,” I thought, as he coughed up cookie pieces and mucous, then cried and vomited in my arms. I gave him both puffers. It didn’t help. He began itching at his throat and his feet, hives spreading faster and faster. That was new.

At this point I’d recruited my Dad to drive us to the ER; my daughter to fetch a new bucket and my purse. Still calm. Still old territory for us. He was still talking, as only my little chatterbox can manage while still coughing and puking.

I crouched by his seat all the way to the hospital, Mommy-auto-pilot fully engaged – first aid edition. I sent my Dad home, sure we were in for a long wait and the usual procedures. As I walked through the door I noticed he was working hard to breathe. Not good.

I interrupted the receptionist. “He’s having trouble breathing!” While he dry heaved in my arms, I juggled a bucket and purse and an increasingly heavy 4-year-old.

She used her calm, customer service voice on me, informing me that I would need to find his health care card while she finished helping the couple at the desk. The volunteer guarding the door chastised me for jumping the line. “These people were here first.”

Does no one hear my panic and repeated “He’s having trouble breathing!” – anyone?

He goes limp in my arms. I can’t wake him up. He’s still breathing, but it’s shallow.

The triage nurse calmly waves me over to another desk, pulling out the O2 sat monitor. “He’s having trouble breathing. He’s choking. He has hives…” I must have explained. I can’t remember it now.

She sprang into action after the clip took it’s reading. Waving us through. Bringing another nurse to our side.

Now there’s a bed. Now there are people everywhere. Hands and equipment and tubes everywhere. I’m surprised that they don’t push me out of the way. I’m stunned by how quiet my busy little boy is. Barely conscious.

“Is he normally this subdued?” they ask. I’m completely panicked by this question. There’s no way he’d lay quietly for any of this poking and prodding. Now he’s passed out entirely.

One of the nurses calls for someone to “bring the peds crash cart – right now!”

And that’s when the world stopped.

It must have sputtered back into existence at some point, a blur of tears and questions and steadily beeping machines. He starts fighting back, pushing the mask off his face and protesting over the IV in his hand. What a lovely sound that unhappy shriek is to my ears! I hold him as close to me as I can with all the tubes and wires and nurses in our way.

At some point they bring me a chair, which I ignore, climbing onto the very edge of the bed with him. I text my husband, “he’s okay” – not yet ready to explain how very close we came to not-okay. They’ve pumped him full of meds and oxygen, and are monitoring him closely.

The doctor comes to explain that they will be admitting him to hospital now. I ask if we can be transferred to Children’s Hospital, where his sister is already a patient. She looks at me like I must be joking. It’s only a few hours before April Fools Day, after all.

It did feel like a terribly cruel joke.

5We got to ride in an ambulance. Though he could barely breathe, the boy thought this was pretty exciting. He was also thrilled when he recognized the ‘big hospital’ which has always been a lot of fun for him to visit. Not at all happy when he realized he would not be going home and that, yes, they were going to keep this needle in his right hand and the uncomfortable prongs taped into his nose.

For two days we had both littles and both parents on the same floor of the hospital. Thank God, repeatedly, that Grandpa was back at home to take care of the teen contingent.

It took them longer than expected to wean him off of oxygen, but once they did he bounced right back. His sister was discharged the day after he was.

We’ll be back again next week.

None of this is actually happening to me. Not really. But I’m gasping all the same.

So here’s us, where we don’t take our next breath for granted.

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

March 21, 2015

No Single Story

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

There is no single story which speaks the truth of Down Syndrome.

Certainly not the outdated pessimism of some medical professionals who see it as a life not worth living. And the more than 80% of terrified parents who terminate their pregnancy as a result. Those dark sketches of burden and heartbreak bear little resemblance to the beautiful children I know.

There is no truth behind the many, many comments of “I don’t know how you do it” and it’s close cousin “I could never.” Because trust me, you could and you would. That’s what parenting is, Down Syndrome or not: doing what you have to, the best you can on most days, and not so great on others. But kids are resilient. Kids with Down Syndrome especially so. They have to be.

I hate to admit it, but the truth does not lie in the air-brushed snapshots of perpetual happiness either. The cuteness, that’s very real. And studies have shown that families who include a member with Down Syndrome experience significant amounts of joy and fulfillment. But these children are not angels come down to earth, they are human beings. Amazing and inspiring often, but also grumpy and quirky and stubborn and everything in between.

I wouldn’t have it any other way. My daughter is an individual not a stereotype. She is her own unique person.

She faces a larger set of challenges and obstacles than most people, and she has to work harder than everyone else. Some people say stubborn like it’s a bad thing, but that iron will has given her a toughness that impresses nurses and doctors, and is in the process of kicking cancer’s butt. She would very much like to control the entire universe (she is her mother’s daughter after all), but often finds herself at the mercy of a world that moves too quickly and unpredictably. She doesn’t take that lying down, let me tell you. She is indomitable. She has a silly sense of humour and loves to tease us with the absurd. She is gentle and sweet and undeniably charming. She insists on being called by her name, and nothing else. She refuses to be labelled in any way, not even endearments or compliments – not honey, or sweetheart, or smart, or brave, or a girl… “I’m just B” she says. She is her own category.

“And though she be but little,
she is fierce!”
~Shakespeare

This is her story, and ours. Down Syndrome plays a part, and for that we celebrate World Down Syndrome Day along with so many other wonderful individuals and their families. This is no anguished outcry or demand for a cure from bitter parents, this is a celebration. Because our lives are all the more worth living since our daughter, and Down Syndrome, became a part of our story.

There is no single story which speaks the truth of Down Syndrome, there are millions.

So here’s us, celebrating 3-21-2015 for all those with Trisomy 21, also known as Down Syndrome.

8 Comments   |  tags: , , | posted in special needs

March 10, 2015

Consumed

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

Alone
in a crowd of friendly professionals
masking desperate and exhausted
with awkward quips and acts of conspicuous competence.
As if I too
must earn my credentials;
A place at this
examination table.

On the menu,
once again,
is my child.

Her comfort, her privacy, her hair…
Our resources, our energy, our sleep…
Devoured
in five courses of medical necessity.
And for dessert:
sanity.

Bon appetit
Insatiable, uninvited guest.
Take what you want from me.
Just leave her
Alone.

IMG_2196.JPG

So here’s us, on the upswing after 2 horrible weeks. Mouth/throat sores are a special kind of hell. She’s now eating through a NG (nose) tube as we brace ourself for 3 more rounds of that particular chemo. 4 months down, 21 to go.

6 Comments   |  tags: , , | posted in Cancer, poetry, Uncategorized

February 14, 2015

There Are No Rules When You Fall in Love

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

I’m going to let my husband speak, for a change. Just a few of the many things I love about him: his sharp mind, his brilliant writing and his fierce devotion to our family.

Life is hard. And love especially. “All we can do is offer up everything we’ve got, meager as it may be and shrinking by the day, and hope that it’s enough.”

This Is Nowhere

The Airborne Toxic Event umbrellaBy Glen

For Christie

On the 23rd anniversary of our first date, you asked me if I would’ve asked you if I’d known what would follow.

You didn’t mean the good stuff: the romance and the adventure and the four wonderful kids and the triumphs and the building of a life together.

You meant the tough stuff: the first gut-wrenching stillbirth and the time you almost died and the second gut-wrenching stillbirth and the news that our beautiful baby girl had Down syndrome and the slow realization that our adopted son’s special needs were more challenging in real life than they read on paper.

So many things that we didn’t choose to write into our love story. Things we never imagined; not in our worst nightmares.

There are no rules when you fall in love
You just take what you get and you hope it’s enough

On the 2nd anniversary…

View original post 428 more words

1 Comment | posted in Uncategorized

February 5, 2015

All That Vaccine Ugliness

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

Vaccine articles abound these days. Not to mention Youtube rants, Facebook debates, pithy graphics and pinnable quotes. It’s the issue-du-jour in the parenting universe; one that doesn’t seem to be losing traction, even as both sides make little to no progress in changing minds.

In fact, those most invested in the issue seem to be polarizing to greater extremes – discussions devolving into calls for lawsuits or criminal charges, shocking rumours of evil intent and ugly name-calling.

Straw man arguments are all the rage in this discussion. You know the kind. Present your opposition’s case in the most ridiculous, laughable way, then swoop in like a hero to knock them down to size. Be sure to add a few nasty insults disguised as jokes. Appeal to fear. Appeal to a sense of superiority. People eat that stuff up.

It’s fun. Fun to read about all the ways I’m right, right, right. Fun, even, to sneer at the ridiculous claims made by the “other.”

I was prepared to jump right in. As much as I like to think of myself as a moderate, a conciliatory voice in a sea of extremists, this issue hits me right where it hurts.

So I wrote a post. Out of fear, anger, even pain. Lashing out… but, you know, in a funny and readable way. It probably would’ve done well, if I’d gone ahead and published it. I’ve seen a lot like it out there. No doubt read and shared by only those who agree already. And this one pushed all the right buttons. With a so-adorable-you-could-die picture of my cancer-fighting daughter at the end. The KO punch. Take that straw-morons!

Self righteous. Self indulgent. Pointless.

Because most parents don’t lead with their minds, they lead with their hearts. Especially when it comes to the safety of our children. Which is why this vaccine debate can get so very ugly, so very quickly. It taps into our primal defense system.

That doesn’t mean I don’t think I’m right. But I’m going to try to set Mama Bear aside to make my point. This is important. But it’s not personal.

At the core, it is an issue of world-view.

Do you trust the scientific and medical community?

What do you value most highly: personal liberty or communal responsibility?

Ultimately, what do you fear?

To vaccinate or not to vaccinate, it all comes down to fear. Either way, parents take a risk. A risk because vaccinations are neither 100% effective (and wane over time) nor are they 100% safe (not much in this world is). A risk because these diseases might (and in some cases are) making a comeback, putting my child at risk to contract, and spread, a preventable illness.

I’ve been a homeschooling mom, on the granola-crunching, tree-hugging, all-natural west coast. I know many families who choose not to vaccinate. My kids are friends with their kids. In our corner of the world, about 30% of children aren’t fully immunized. These parents are simply behind or doing what they think is best for their children. I know this. I even understand why.

When it came time for us to decide, we put our trust in traditional medicine. Not because I believe in blindly following the dictates of medical professionals like the infallible gods that they are (read this with a great deal of sarcasm), because it makes sense. This is not an unstudied and untested field – the medical evidence is public, accessible and clear. This is not a money-making scheme – vaccinations account for less than 2% of Big Pharma profits. This is not a conspiracy by a powerful elite – these are fellow parents who choose to vaccinate their children also.

Ultimately, I decided to do what I could live with. What if my child became ill, suffered permanent damage, or even died, because I chose to flout convention? What if another child did? I’d heard the stories my Grandpa told of a year spent in an iron lung. Of many who died. Polio. Small pox. Measles. Entries in a text book about deadly epidemics that seem like ancient history to us. Is it right for our family to reap the benefits of progress without doing our part for the future?

But none of that matters now.

You see, I don’t have a choice anymore. My daughter doesn’t anyway. Chemotherapy is stripping her immunity and we are at the mercy of the herd. At a time when every illness looms large and terrifying.

This is fear. Not a remote, theoretical possibility of harm, but one more skirmish in the day-to-day fight to keep death at bay.

So you understand why the question of “preventable diseases” seems SO much more important right now. Our instructions are clear: if she is exposed, even briefly, to one of these illnesses (or to someone who has been) we are to bring her immediately to the hospital. Full on emergency.

Did I mention that my best friend caught Whooping Cough last year? It was brutal. Nothing theoretical about it. And right in our own back yard. My daughter’s already so sick, I don’t know if she could survive that. Did you know that measles kills 400 children per day? North America used to be protected, but it’s back now and it’s a deadly disease. There were over 300 cases of it in our province last year. Did you hear about the NHL mumps outbreak? And on and on and on.

Danger lurks around every corner. Especially for us.

Despite my initial reactions, I’ve always known that those of us who choose not to vaccinate our children are neither monsters nor idiots. Though we’ve come to very different conclusions, we are the same – concerned parents.

Do the risks of immunization outweigh the benefits? Are reports of outbreaks overstated? Are the effects of measles, mumps and whooping cough (among other things) less dire than we’ve been led to believe?

I don’t think so. I really don’t. Since my daughter’s life is at stake I wish I did. I would rest so much easier. For once, I hope I’m wrong.

All I ask, from all my fellow parents, is that these decisions not be made lightly. Do the research. Not just the stuff that’s fun and easy to read, that makes you feel good. Look beyond the condescending attitudes and prejudices on both sides to examine the evidence. Consider the source – is it reputable… qualified… is there accountability… is there an agenda?

Be wise.

Be thorough.

That’s all I can ask.

Because you’re deciding, not just for your own kids, but for all of us who can’t vaccinate. For all the infants, for those with allergies, for those whose vaccinations have worn off or didn’t take, and for those whose immune systems are already damaged.

Be absolutely sure that you are doing the right thing.

She’s counting on you.

img_2008
So here’s me, using the emotionally manipulative picture anyway. Couldn’t resist…

3 Comments   |  tags: , , | posted in Cancer, parenting

January 15, 2015

The Year of the Dead Eyed Shuffle

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

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

7 Comments   |  tags: , , , | posted in Cancer, OneWord 2015: Treasure

December 30, 2014

So Here’s 2014

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

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

sad gingerbreadman from Flickr via Wylio

© 2009 danaberlith, Flickr | CC-BY-SA | via Wylio

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

Leave a comment   |  tags: , , | posted in Cancer, favourites

December 23, 2014

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

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

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.

sad gingerbreadman from Flickr via Wylio

© 2009 danaberlith, Flickr | CC-BY-SA | via Wylio

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.

7 Comments   |  tags: , , | posted in Cancer, christmas, holiday

November 20, 2014

A Bad Cancer Day

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

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

edvard munch - the scream 1893 from Flickr via Wylio

© 2006 Ian Burt, Flickr | CC-BY | via Wylio

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.

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

November 18, 2014

These Are the Days of our Lives: Hospital Style

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

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.

IMG_1722.JPG

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

8 Comments   |  tags: , , | posted in Cancer, Uncategorized

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