So Now What?

I’m back where I was when this crazy ride started 2 weeks ago. When we discovered our daughter’s photo had been stolen from my website, then published internationally to promote prenatal testing. When we chose to speak up, to take on our bullies in public and take the hits as they came. When we said no to worldwide media, reporter after reporter, as we focused on chemo and survival. When we flailed under a deluge of advice and help and yes, criticism, before giving the mess over to more experienced hands, hands we could trust. We are where we have been all along, in the place that really matters – at the bedside of our very sick girl.

Back in the hospital again, and somehow the hurt and outrage fades to the background. Cancer is good for very little, but it does bring perspective.

If I could erase this episode I would – it is the very last thing we needed. Stealing precious time and emotional energy when we need it most. Not to mention, such a disheartening sign of the world we live in, where anyone would so thoughtlessly and publicly disrespect a child, any child. I’m sure you can imagine the cruel remarks that have been unleashed on us as well. People can be hateful. There are some who quite plainly wish my daughter dead. Apparently I should expect this and am in fact to blame. Those ones seem particularly upset that I dare to speak up at all.

There are already too many in the world who shrug their shoulders and “what-do-you-expect” their way past all that is unkind and unjust around them. We must live toward the world we want. Even if that means making a fuss.

I’ve learned so much from others who’ve opened up their lives just a bit, to give us glimpses into their reality. That’s the beauty of storytelling: in blogging, photography, poetry, song, film and thousands of other ways humans express themselves. And every time you put yourself out there, it’s a risk – of being abused, misunderstood, misused, co-opted by some other agenda… but we keep doing it because to hide is to let them win.

Let’s be clear, I’m not leaving my blog up to be petulant or to thumb my nose at the risks. It totally freaks me out at this point. I feel exposed and exhausted and I have more important matters in my life.

I’m leaving it up for the same reason I posted that photo in the first place: because it matters that people hear these stories – stories of a good life with a child who has disabilities. Real and messy and sometimes hard, but absolutely worth the trip.

In a world where pressure and fear is brought to bear on expectant parents whose children may have a chromosomal anomaly, people deserve the truth from those of us who actually know. Life has never been better for people with disabilities, and it’s only getting better. That’s not to say it’s easy, but the best things in life rarely are. When’s the last time you heard any parent raving about how easy parenting is? That’s not why we do it.

Ask a parent what matters most, what makes them smile and gives their life meaning. Ask a parent of a child with disabilities. Here’s a hint – exact. same. answer.

Having a child like my daughter is no tragedy.

You have questions…
The biggest question we’ve gotten is what can I do? There have been so many offers that we are humbled and overwhelmed. The cruel and callous should be on notice – they are woefully outnumbered. The answer is simple. The best way to help us, to help my daughter, is to embrace ALL people.

Is that overreaching?
I don’t care. People matter. We have the ability, the innovation, and the resources to make room for everyone in this world – we simply lack the will to do what it takes.

If you need a suggestion, we believe in the work of the Down Syndrome Research Foundation – who seek to create and implement the best practices in reading instruction, speech therapy and life skills development for children like my daughter.

donate

For all who’ve asked for an update – thank you. Our girl is very sick, but she is fighting through. She hates the “strong medicine” that has taken her hair, keeps her isolated and makes her feel yucky, but we are so grateful that it is keeping the leukaemia away. 

Right now her immunity (ANC) is at zero – too low to count. She has a number of infections and must remain in hospital until she recovers enough to better fight them off (ANC of 0.3). This is our last week of Delayed Intensification – one more IV chemo on Monday then her immunity counts need to recover (ANC of 0.75) before she moves into what should be a less brutal 18 months of chemo. If all goes well she may even be able to return to school part time this fall.

She’s very excited about growing new hair this summer. Brown, she’s decided. It’s impossible to say what colour or texture may grow back, but if anyone can control it by sheer willpower, it’s her.

 


My Child’s Photo was Used in an Offensive Corporate Campaign

I was sitting beside my daughter’s bed in the Pediatric Oncology Clinic when I found out. She’s in her eighth month of chemotherapy, with nineteen more to go. This week has been particularly brutal. We had rushed her to the hospital last night when she spiked a fever. Again.

Every small setback takes a toll, but she doesn’t let it keep her down for long. She’s tough. Tough and sweet and feisty, and a thousand unique qualities all her own. She is the joy of our life.

She also has Down Syndrome, a fact that seems to matter more to other people than it does to us. I often write about her on my little blog. Anecdotes and opinions, stories of our busy life for a small, but encouraging group of readers. I never refer to my children by name, and rarely post pictures of them. But once was all it took.

Her photo was stolen. A beautiful shot of her face – one of my favourites, posted on a stock photo website and distributed for free.

As if that wasn’t bad enough, it was stolen again by a Swiss bio-medical company named Genoma. On the front page of their website and a building sized banner in Spain: there’s her face, larger than life. My daughter has been made the poster child for a prenatal testing kit called Tranquility. As if she were a cautionary tale: don’t let this happen to you.

evil adThe campaign is so disparaging towards individuals with Down Syndrome that it incited an avalanche of complaints from concerned parents and disability rights activists in Spain. One parent is quoted in a local publication asking “what mother could allow her daughter to be photographed and used for this campaign?”*

Not me. Never. I would never have allowed this.

It was a fellow parent, one who also has a child with Down Syndrome, that recognized her picture from my blog and alerted us. I was stunned. The more we looked into it, the worse it got. To know that this happened infuriated me, but when I saw with my own eyes… her sweet face on that ugly banner, it broke my heart. While my girl courageously fights for her life, this company questions whether she has a life worth living.

How dare they?!

Prenatal testing will always be a hot-button topic for parents like us. Let’s be honest, with a 90-95% termination rate parental preparedness is not the primary goal of these tests. I find it morally reprehensible. But even that is beside the point – they had no right to exploit her to sell their product.

Why couldn’t a multinational corporation pay for their own publicity photo? Perhaps they couldn’t find a parent willing to put their child in this position. Perhaps they didn’t even bother looking. Why pay when you can just take?

We have contacted the company directly, firmly asking them to remove her picture. They have not responded. Her picture remains (update below).

I’ll admit, I felt guilty. That it was my fault. I put her picture online. I didn’t prep it for the web properly. I failed to protect her.

Until I realized, I did nothing wrong. They broke the law. This heartless company that used my daughter’s photo without our consent, or that of our photographer. Legally a copyright infringement, but also breaking what is referred to in copyright law as “moral law” since her image was used in a derogatory fashion. They insulted and abused my innocent child in their pursuit of profit. They broke faith with common human decency. And the world is watching.

What’s worse (for them), they angered this Mama Bear.

Where initially I considered taking all our photos offline, deleting my social media accounts and hiding in my house for the next 10 years, now I’m determined to weather the storm. We will not flinch. We will not hide. My daughter is beautiful and her life is worth celebrating. 


*Article in La Razon – http://www.larazon.es/sociedad/anuncian-un-test-prenatal-con-la-imagen-de-una-nina-con-down-CE9978859#.Ttt1dKcnkmyPFp7

Update – at this time Genoma has removed our daughters photograph from their website. They’ve indicated a desire to apologize. While I do not believe their actions were intentionally malicious, in my opinion what happened was unethical and illegal. The onus is on them to adhere to copyright law, whether first or second hand, theft is theft. This isn’t some guy in his mother’s basement, this is a huge multinational, surely they have the resources to properly vet a publicity photo, particularly one of an innocent child being used in such a controversial way.

Dodgy Turkish German(?) “free image” website has still not responded or removed our daughter’s photo.

We are consulting a lawyer.

Further Update – the ‘down syndrome’ page of the stock photo website, including our picture and at least two other stolen photos has been… wait for it… SHUT DOWN! I can’t tell you how much I appreciate the efforts of computer savvy strangers driven by no agenda of their own, only a desire to right a wrong.

So now what? – answering the “how can I help?” and “how is she doing?” questions. There are too many encouraging comments to address individually at this point in our life, just know that you are deeply appreciated.


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

…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.


No Single Story

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.


Consumed

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.


There Are No Rules When You Fall in Love

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.”

Originally posted on 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 428 more words


All That Vaccine Ugliness

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…


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

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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

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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… 

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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…

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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…

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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…

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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…

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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… 

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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.


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