The Year of Hard Lessons

We have a houseful of books and videos and educational games that declare in cheery tones “Learning is FUN!!!” – usually accompanied by an obnoxious rhyme and catchy tune. Unfortunately, growing and learning in real life isn’t nearly so sparkly and bright. And you’ve learned a lot this year.

Hard lessons – an injury that sidelined you, a sister in danger, a family in chaos, a shift in belief systems, a body and mind rebelling, refusing to be controlled. The kinds of lessons that teach empathy and resilience and important coping skills. The kinds that change you forever. That leave childishness is the dust.

This year you’ve learned:

You can’t white knuckle your way out of everything. This, my hardworking, overachieving, plan-making perfectionist, is actually a good lesson in the long run. But it was oh-so-hard for you of all people. Painful to watch. Painful that we couldn’t rescue you out from under it either. BUT

You can get through almost anything. Sometimes the only way out, is through. We spend so much time trying to avoid and evade suffering in our lives that this can be ridiculously hard. Even that very first step of accepting reality and realizing there are no quick fixes or shortcuts. It takes a lot of courage and strength to press in and press on. When anxiety and depression were weighing you down, I know that you didn’t feel it, but you truly are both brave and strong. Some days just getting out of bed is an accomplishment. AND

You gotta do, what you gotta do. Breathe. Live in the moment. Give yourself permission to take a break, say no, worry about it later, fail, let it go… Sleep is the best medicine. Except for laughter, that’s even better. Drink water. Get some fresh air. Move around. Wear what makes you feel good. Take long baths with candles and music and a pillow. Chocolate. True friends will understand. Meditate/pray/breathe in life. Thinking and Feeling are both important parts of life. Find balance. Sometimes you need your mom. And counselling. And medication. And that’s okay. FINALLY

You never really understand something, until you live it yourself. Knowing this, really knowing it, will give you a depth of compassion, a patience and a humility that makes you a quality friend, and a quality human being. We all struggle, the ins and outs of a person’s struggle aren’t nearly as important as this common ground.

I’m so proud of you – this year more than any other. Part of me wishes it had been a year of simple pleasures and innocent fun for you. But another part is grateful, because I see the extraordinary young woman you are becoming as a result. Who needs normal anyway?

Happy 15th birthday!

Love

Mom

balletishard

Happy Birthday, young lady! After the year you’ve had, you deserve a happy day indeed.

I’m sure when you turned 14 you had no idea you were about to have the hardest year of your life thus far, but life has a way of surprising us like that, unfortunately. It seems so unfair, though, that you should have to deal with knee injuries and anxiety and school drama on top of everything that was going on with B. So many times I have wished I could take some of these trials away from you, and lift the things that have been weighing you down. That’s not the way it works, of course. You’re becoming an adult (faster than I would like!), and the courage and perseverance you have developed during these tough times will only help you in the future.

I have been so proud of you this year. You have shown admirable wisdom in knowing when things are getting to be too much, and discipline in cutting back when necessary. You’ve bravely made difficult decisions, like your choice to change schools in September. You’ve shown tremendous maturity in your relationships, recognizing when you needed to pull back from people who weren’t providing the support that you needed. And you’ve displayed tremendous resilience as you fought through pain to deliver the best dance performances of your career.

It goes without saying (but I’ll say it anyway) that your contributions to our family this year have been invaluable and very much appreciated. As the oldest kid, you’ve had to carry responsibilities well beyond what is normal, as mom and I have bounced between hospital and work and everything else that demands our attention. Thank you for all the hours of babysitting, meals cooked, and the understanding you’ve shown when you get less attention than you deserve. I love you, and I can’t wait to see what your 16th year brings you. (Surely it can only be better, right?)

Love,

Dad

So here we are – continuing our family tradition of letters written to our kids for each birthday. 15 years has gone way too fast…

 


Teenager In The House

You’ve been celebrating for days – the “last days of my childhood” you call it. As you binge watch Hannah Montana, play Mario Kart with your brother, and request a My Little Pony cake. No more ordering off the kid’s menu, no more cheap movie ticket, no more school with the little kids… Teenagedom is officially here.

And I’m sad because you’ve been such a fun kid. Quirky and headstrong and tender hearted.

And I’m happy because you’ll be such a fun teenager. Still you, just more focused and deliberate and every bit as headstrong.

This year has been one of exponential growth for you. Perhaps it is your age, but more likely it’s been the steady stream of changes and crises. First, our change to a new church (one you didn’t approve of or enjoy) and your decision to stay at the church you grew up in – forging a new type of independence. Secondly, your sister’s cancer diagnosis and the household chaos that followed. You stepped up to the plate in ways we never expected: babysitting, preparing meals, helping with housework… learning to navigate our new, unpredictable life.

My messy hoarder now has an immaculate room. You’ve learned the thrill of decluttering and re-organizing. You’ve embraced the practical art of interior design, constantly moving items around, creating new decorations and perfecting your space. You still see beauty in unexpected items and appreciate the sentimental value of things, but you’ve learned to filter and focus that gift. Sometimes the obstacle of best, is an overabundance of good. You inspire me to streamline, not just for its own sake, but so that I can truly enjoy what I have.

My fellow candy fiend and food lover has become a healthy eater and diligent exerciser. At first this project worried me, even though we’d been talking a lot about making good choices and being more active. Too many girls your age become obsessed with weight, vain, judgemental, unrealistic, unhappy… launching themselves into a vicious cycle of self-loathing. I know I did. It’s taking me years to recover and I’m afraid I don’t set the healthiest example for you. But you’ve been remarkable balanced: not giving anything up, just moderating, adding better foods, trying new things. “It’s good for the liver” is your new catch phrase. You can rest easy, I’m sure that your liver is in fine shape.

My little rebel has found her own faith. Where you once insisted that “the sneaky snake” was the hero of the Eden story, you’ve now become quite devout. It’s always been important that you do things in your own way in your own time, and that’s something we will respect. We may not see eye to eye on theology, fundamental and progressive beliefs are bound to clash. We do understand where you are coming from (we spent many years there ourselves) and we value the strength of your convictions, especially as you live that out with increasing love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control. We are probably wrong about some things. And you are bound to be too. On who God is and what life is all about. Yet love will never fail, it is the greatest commandment for evangelicals, emergents and confused agnostics alike… so we will make that the final word, the one we can always agree on. The purpose and the measure of life is how well and how much we love.

You’ve changed more in the space of a year, than in several before this. A dramatic switch from underachiever to workhorse, as if you’ve finally taken the reins of your own life. You are going after what you want. You are growing up. You are totally up for this teenager thing.

Me, not so much. Thinking your Mom’s an idiot is as much a part of teenagedom as hormones and emotional outbursts. It’s right up there with certainty that you know best and seeing the world in black and white. Your all-or-nothing approach to life comes with a side order of impressive willpower, but it also has the downsides of that particular brand of perfectionism too. It’s my job to give you perspective, even when you don’t want it, and keep boundaries up until you prove you can find balance on your own. I’d rather just be your friend and do the fun stuff (sci-fi movies, cooking projects and drinks at Wendells), but you still need a mom. So we’re going to keep butting heads. Just remember that I’m a person too (and still get my feelings hurt) and most importantly – in the middle of the very worst fight we will ever have, I will still love you fiercely and unconditionally.

Also, I like you a lot. And that doesn’t always happen with Moms and daughters.

Happy 13th Birthday!

Love

Mom
Dear C,

Happy Birthday, Teenager! Your age has finally caught up to your attitude – and I mean that in all the best ways. You are my feisty, independent, self-assured girl who knows exactly what she wants and how to get it.

I can’t even count the number of ways in which you have impressed me in this, our toughest year. While the rest of the family was falling apart, you somehow seemed to overcome every challenge and thrive. You killed it at school, excelled at dance, set an example for the rest of the family by embracing a healthy lifestyle, created amazing works of art, organized and decorated the best looking room in the house, and helped your mom and I by picking up lots of responsibilities at home when we were at the hospital with B, or just plain exhausted.

You have had to deal with way more than any 13-year-old should have to face, and I am both grateful for and proud of the way in which you have responded. Thank you for all you have done to help us through this difficult season of our life.

At the same time, I want you to know that you don’t have to be supergirl. It is okay to not succeed sometimes; perfection is not the goal. All we ask from you is to do your best; I hope that’s all you expect of yourself, too.

I know this year has been tough for you in other ways, too, especially with the rest of us attending a different church. I admire the strength of your convictions, and your determination to follow the path that you think is right for you. Please know that I am always behind you 100%, even when we find ourselves going in opposite directions.

I’m excited about your trip with Mom this fall. I hope you both have a fabulous time making memories and connecting in a way that isn’t always possible in the midst of our crazy life. Have fun – you deserve it!

Love,

Dad


The Boy Who Would Belong

“He’s a lucky boy” they say. As if we were doing you a favour by adopting you. What they don’t know… What we didn’t know… Is how much we would need you. To brighten our days. To keep us laughing. To soften our hearts and stretch our empathy. To shake us out of ordinary and tweak our priorities, over and over and over again.

You saved me this year. This horrible year of your sister’s cancer diagnosis and long hospital stays. I know this year was hard on you, you’re still uneasy without the whole family together under one roof. And our calm routine was shattered, which made life unpredictable and uncertain. Except for you, I could always count on you to make me smile. It’s impossible to despair with your little body wrapped around my neck, and squeals of “I missed you so so SO much mommy!” and “This is a special, special day!”

You have a nonstop, megawatt, irrepressible grin that spreads joy in your wake. You don’t walk and run through life, you hurl yourself at the world. You have a genuine sweetness, a kindness that most of us can only simulate.

This year you discovered fear, though not always in the best places (for instance, running into the road is supposed to be scary, Mario-kart characters are not). I hate to see you react with terror, though I’m proud you are learning to be brave. Best of all, I’m relieved that you turn to me, to your dad and sisters, even friends and teachers, for comfort so confidently. I promise I will always be your safe place.

You’re just a little boy, even now at five years old, you’re still my baby. I wish I wasn’t such an exhausted, overwhelmed and distracted Mom, but I hope you will never doubt how unshakeable my love for you is.

Parenting isn’t about the getting, but the rewards often come all the same. You are the answer to prayers I never put into words. You are a gift.


Happy birthday!

Love

Mom

And now, a word from your father…

Dear S,

Happy Birthday, Big Guy! 5 is a huge year – you are ready to take kindergarten by storm! (Hope they’re ready for what’s about to come their way!)

What a year it has been for you. We’ve watched you grow by leaps and bounds in front of our eyes. With age has come some wisdom. We were finally able to take down the guards from our second floor deck railings, and I haven’t caught you balancing on top of them yet!

Of course, your default speed is still set to “Go fast, think about the consequences later… or maybe never at all.” As much as it causes me gray hairs (like last summer when you escaped my eye and went missing at the State Fair for 20 minutes), as someone who tends to overthink everything, I think I actually have a little something to learn from you about seizing the moment. (But let’s not get too carried away, okay?)

You may not remember this when you get older, but it’s also been a tremendously difficult year for us, with B getting very sick and spending lots of time in hospital. For way too many nights and days, you were missing Mommy or Daddy as we took turns taking care of your sister. I’m sorry for all the time we weren’t able to spend with you Buddy. But, I’m proud of how you rolled with things, never knowing who might pick you up from preschool on any given day. You did amazingly well with all the chaos. Thanks for pitching in!

Things are going to be a bit different when you go to school. You’ll be spending more time away from home, making friends and starting to build a life of your own. I’m so excited to see where it leads you… and I promise I’ll be right beside you every step of the way.

I love you Buddy! Happy 5th Birthday my son!

Love,

Daddy

So here begins another round of birthday letters… To the world, so they will know how special you are. To the someday future you, so you will never forget.


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.

Final Update – we’ve reached a satisfactory agreement with Genoma.

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.

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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.

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


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