October 4, 2015

Day 4: Humanity Starts Here

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

Today, I offer you this.

It’s a difficult, even painful gift to give. It’s a soothing and beautiful gift to receive.

It’s the basis of meaningful friendship and the key to fulfilling our purpose as humans.

It’s also a skill. Meaning: it can be taught and improved and built up in one another. It can be sharpened most of all by our own suffering. Which sucks, since I’d so much rather learn through Ted talks and cute animated videos. And it only grows when I allow it. Which is hard, because it will inevitably be uncomfortable. And we’re so very good at avoiding uncomfortable.

Having received this many times, I can tell you it makes all the difference. It’s something I have great capacity for, now more than ever. But it’s also something I have failed at spectacularly before. Because it’s easier to minimize, to discount and disbelieve, to compare, to rush, and keep everything pleasant and superficial. 

Pleasant and superficial has its place, but it never made anything better.

Empathy.

The cure for what ails us as a species.

 

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

October 3, 2015

Day 3: Stillness, Meditation and Other Weirdness

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

Quiet is an unnatural state in our world. It is difficult to attain and nearly impossible to hold onto for long. Yet, nearly everyone can agree that it is an important part of emotional and physical health, and a vital aspect of prayer in almost every belief system. The constant noise of modern society, the clatter of opinions, the hiss of my own fears and worries, even the happy rhythm of a full life, can drown the soul.

Quiet time from Flickr via Wylio

© 2010 Leland Francisco, Flickr | CC-BY | via Wylio

Even now I can hear an inner voice sneering about the “hippy dippy nonsense” I’m dishing out. Maybe I am laying it on a bit thick. Maybe I wrote and deleted that paragraph several times. This stuff used to be too weird to me. Too other-worldly and nebulous. Too easily filed under “Other’ – new age, Buddhism et cetera (which at the time were not paths I respected).

It’s strange, because there is a long tradition of mindfulness and meditation in both Jewish and Christian traditions. Be still and know that I am God. At some point we’ve lost sight of the discipline of silence. There’s so much we can learn from each other.

I am no longer threatened by the practices of other belief systems. While I choose to remain in the traditions of my youth, I can appreciate and embrace goodness in all its forms. Mindfulness, meditation, even an awkward version of yoga have found their way into my repertoire. Honestly, I’m not sure it could be called yoga at this point, more like clumsy stretching.

The girls and I do Yoga with Adriene – ‘Yoga for Complete Beginners.’ At first B sat on the couch and laughed at us, but eventually she joined in too. She does a mean downward dog. It’s surprisingly hard. And relaxing.

Silence is a rare commodity in my life. Something I need to pursue and protect more. I need to turn the radio off during my commutes. And take walks in the woods by myself.

I’ve found guided meditations are helpful too. Kind of a shortcut to stillness. Especially actual physical escape is impossible.

One of my favourites is this free app – Stop, Breathe and Think. Although it is intended for teenagers (maybe because it is) our family has found it helpful. While in the hospital B would occasionally ask to listen to the “lady” when she felt overwhelmed or had trouble sleeping. It’s like auditory Prozac, soothing and disarming.

‘Relax, Ground and Clear’ is our standard pick. Ostensibly secular, yet I can’t help but experience The Divine through it. For what is God, if not the source of peaceful calmness, the energy of the earth, and the vastness of the sky?

sbt

The structured, purely-intellectual prayers I used to aspire to are of very little comfort these days. I can no longer A-C-T-S my way through a list. I am often beyond words.

Instead I sit and listen.

And sometimes I even hear the quiet.

* * *

On a lighter note… here’s a guided meditation for the dark days. For those of you who are comfortable with extreme profanity and morbid humour. Not at all family friendly.

 

 

 

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

October 2, 2015

Day 2: One Foot in Front of the Other

By So Here's Us.... life on the raggedy edge.
I Went Out Walking... from Flickr via Wylio

© 2007 Matt McGee, Flickr | CC-BY-ND | via Wylio

This may be the least profound and the most important tool I have in fighting off life’s monsters.

Breathe in. Breath out. Focus on the moment I am in right now. Do the next thing. Put one foot in front of the other. Keep going.

There are times when the next five minutes are all I can handle. Keeping life as small and manageable as possible. There is no shame in this. It is amazingly adaptable. I let go of the past, because I can’t change it. I trust my future to God’s hands, because I can’t do anything about it either. I keep my sights on the moment. And I do the best I can right now.

When it comes to fighting the Big Bads in life, we need to keep it basic.

I’ve always been a planner. Lists of goals. Detailed schedules. Purposeful routines.

The first time reality overwhelmed my need to organize the world was the death of my son Noah. Not only was I reeling from his loss, from the trauma of delivering my silent, perfect little baby, but the doctors had removed my kidney the week before. I was recovering both body and soul.

All I wanted to do was nothing. Lie down. Listen to the same sad song over and over again. Stare into space. At nights I wandered the house and surfed the internet.

It was harder and harder to get out of bed at all. And that scared me. I asked my mom “what if?” What if I crawl into bed and never crawl out? What if I can’t do this? What if I’m not strong enough? What if I get stuck?

She told me that she and my husband would pull me out if needs be. That if it got that bad, there would be medication and therapy and they would carry me through. And it would get better. She would know… my brother Bradley was stillborn too.

So I started a strange little ritual. For the first time in my life I started wearing make-up every day. I was less likely to climb back into bed once I had lipstick and eyeliner on. Even if I did nothing else all day, this was the start. It wasn’t a big thing, but it got me out of my bed, down the stairs and eventually back into life.

When B was in the hospital week after week, I leaned on this ritual again. Especially when she was in isolation, so very sick and sleeping all day long. There was little to set the days apart from the nights. Some of the rooms we stayed in were closet sized, others had no windows at all. Daily make-up became a sign of strength for me; very little to do with vanity, much to do with intentional living.

It doesn’t always feel like strength. Some days it’s hard to do even this. But I do it anyway then. Especially then.

Everyone has their own rituals, daily steps forward, simple everyday signs of life. Ones that may seem miniscule and silly to others, but are statements to ourselves: that I am not beaten, that I can do this one thing, that I am still me…

For me it’s make-up, writing, laundry on Mondays, prayer at dinnertime and goodnight hugs. How ’bout you?

When life spins out of control. The monsters at my door are despair, discouragement, and depression. Do what you have to do to get through. Remember that the best you can do, is all that you need to do.

Keep it small.

Keep it manageable.

Keep moving.

 

1 Comment   |  tags: , , , , | posted in 31 Days Challenge

October 1, 2015

Day 1: Battling the Monsters

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

Recently, monsters have returned to our house.

The imaginations of my oldest two kids, now teenagers, have long outgrown them. It’s been years since we had to check under beds and sing “God is bigger than the Boogie Man” until they could breathe easy. My what-is-real-and-what-is-not talk is pretty rusty. Also, I feel a little guilty trotting that one out on the same day that the tooth fairy visits.

Our littles, as we call the two youngest, have been more preoccupied with concrete fears. You know, the real terrors of life, like having to wash your hair, or wait your turn, or *gasp* go to bed at nighttime.

I’m sure it’s no coincidence that monsters have returned this year amidst the upheaval and struggle and all too often, pain, of childhood leukemia. B herself does not believe in monsters. Nor does she fear them. In fact, she informs me she is “very, very, very brave.” A fact I can attest to. Sadly, her most loyal companion – Pluto the stuffed dog, is quite frightened of monsters. Little brother has caught wind of this and he too will run to mommy shaking and crying for help. And the darn things seem to be popping up more and more often.

Sometimes a hug, a song, a prayer, maybe even a snack is all it takes to vanquish the monsters. Sometimes the kids actually tell me what to say – they know what it is they need and are so much better at asking for that sort of thing than I. The only certainty is that monsters are not meant to be faced alone.

As so often happens, the invisible monsters and the imaginary friend are helping us deal with real things in their lives. Complicated fears. Deep confusion. Issues small and large that are too slippery for little hands to carry.

The kids aren’t the only ones. I’ve got monsters of my own, now more than ever. A few big and scary ones – like Cancer and Fear of My Child Dying. They’ve all but moved in. I’m learning to simply make room. Because this is our life now.

In the day-to-day it’s the little ones that trip me up the most. The thoughts, feelings, and habits that haunt me, intent on dragging me down. I want so badly to be and do better than I actually am. Most of all, I want to make peace with myself in the meantime.

Every person I meet has their own personal demons, some obvious and others deeply hidden – fear, grief, addictions, illness… Then there is society itself, plagued with systemic monsters of rape, racism, violence, greed, extremism… And what about evil itself, as a force of darkness with its own aims and purposes; is that real? Does it matter how it works? Clearly the world is full of monsters, within and without.

Some days it seems frightening. And overwhelming. And the monsters start scratching at my door even louder – perfectionism, fear, defeat, anger… The harder I try, the worse I make it.

These days it takes very little to push me to a complete meltdown. We’ve been in survival mode for so long. Our whole family feels fragile, on edge. We need a battle plan.

The key to battling monsters isn’t what you might think. It’s not a tough-as-nails hard-charging warrior that crushes them into dust. Rather, it’s a flawed-but-improving, overflowing-with-love simple human being that can make them small again. More Mother Theresa than Dirty Harry. That’s what we need. That’s what I’m going for.

So here’s me, for the next 31 days, blogging in the 31 days challenge about: Battling life’s Monsters.

31dayslinky

For myself. For my kids. For the world.

Pretty damn heroic, right? Which is the point. Because writing variations on “I’m just trying to get my shit together” for a month sounded lame.

Here goes nothing…

Day 2: One Foot in Front of the Other

Day 3: Stillness, Meditation and other Weirdness

Day 4: Humanity Begins Here

Day 5: Embrace Plan B

Day 6: The Assumption of Agency

Day 7: Delude

Day 8: The Government

Day 10: Letting it Go

Day 11: Making it Enough

Day 14: The Blame Game

Day 15: Honouring Our Losses

Day 17: Four Hugs a Day

Day 21: Hide and Hope to be Found

Day 22: Catharsis: The Cheap Alternative to Complete Meltdown

Day 31: Peace in My Time

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

September 12, 2015

The Best Thing About This Year is: You Being You

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

Your hair fell out this year, all of it. It’s not something that happens to most ten year olds. Not something you understood. Not something we knew how to parent through. But you handled it. Better than I ever expected.

There are moments of sincere sadness; “I miss my hair” is a familiar refrain in our house. A hug and understanding comment is all you need to be comforted and move right on with life. You’re quick to find humour in the situation – apparently, it is both hilarious and wonderful that you now look like Uncle Lex and Grandpa Bill. Not all bald people share your perspective, so loudly pointing it out to them is a habit we’re going to have to work on. You do love attention more than most. You’ve never acted embarrassed or self-conscious, and why should you?

When I finally shaved your head, you objected more to having to change your shirt after than the act itself, even though I was gulping back tears. The only part of this that truly angers and offends you is when some helpful soul points out that your hair will grow back. “NO! No, no, no, no…” you shout with a disgusted look on your face. Who wants that gross old hair, that fell out in chunks and left you with hairy clothes and pillow cases and even food?

You are growing new hair. This is the only thing you want, to move forward. It’s the only direction that makes sense. Preferably with blue or yellow hair, depending on your mood. The baby soft half-inch that’s grown back so far is a lovely brown, something you’ve not quite resigned yourself to. But I’m sure you’ll make peace with it, the way you do with everything. Honestly, wholeheartedly, with a lovely and unique perspective.

Losing your hair was a hard thing, but not nearly the worst part of cancer. The long months in hospital, the repeated isolation orders, the pain, the machines and wires and tests. The near-daily treks to the clinic when you finally got home. Being too weak to walk up the stairs, too tired to get out of bed. The yucky tummy that still hasn’t gone away, the “diiiiiis-gusting” medicine, the tube in your nose, and the many, many pokes that you hate with a passion. Having to be held down for this procedure or that one. Mostly, being so very out of control so much of the time. For you, that is the hardest part.

You are the toughest person I know. Really. I can’t wrap my mind around everything you have endured, are enduring still.

You have a spark of life that fights through. You are you, and nothing will ever change that. You make that clear to everyone who steps into your domain. You are not a passive patient. There is no way you’ll allow anyone to examine you or do their work until they earn the right. It is exhausting sometimes, but good for all of us. Sometimes we grown ups forget to be human when we’re focused on getting things done. You love the “cleaning nurses” and the “food nurses” best of all – demanding names from each of them, asking for them when they’re gone. In your mind, they are the most valuable, because they bring something tangible to you and you can count on them to come back day after day (and never poke or prod).

Your little rituals make life feel safe. Fred (the IV pole) has had several new faces taped to him over the year, but he’s a constant friend and someone you are glad to see and drag around the hospital with you. Pluto may be a stuffed dog, but he’s an old pro at getting his vitals taken. When we get home you play “Dr. B” and give him many of the same treatments you’ve endured yourself. He’s also the one who feels things the most, crying and woofing when he’s feeling scared or shy or sad. Hearing you comfort him gives us the clues we need to know what you need. On hard days you watch the same show over and over again, or ask to listen to “the lady” (a meditation app on relaxation) whose voice could induce a deep sleep while reading the phone book, or we listen to “A Whole New World” as you tell me all about the magic carpet ride you’re going to take around the world, and all the things you’ll see and do. When eating is hard, as you feel both ravenous and horribly nauseous, we watch the Food network all day long and write menus in crayon.

It has been a hard year. A horrible, scary, and somehow life-affirming year. It’s such a terribly cliché thing to say that you’re my hero (cue cheesy 80s music). As a writer I should be able to think of a better way to say it, but it really has been such an exhausting year. I’ll just say that loving you is one of the best things I’ve ever done or ever will do.

Happy Birthday!
Love

Mom

 elleestforte

Happy Birthday to the spunkiest 11-year-old I know!

Where to even begin describing all that you have been through this year? When you turned 10, we had no idea that you were about to embark on the hardest year of your life – a year that no child, no person, should ever have to face.

When I think about this year, the first word that comes to mind is “unfair.” It is not fair that you got cancer. It is not fair that you lost your hair. It is not fair that you had to spend half your year in the hospital, miss Halloween and Christmas, rarely leave the house, never see your friends, have to face a million hard and painful medical procedures, deal with infection after infection, get woken up every night for medicine, and generally feel miserable all the time. My heart hurt for me, and for your mom, and for your sisters and brother… but most of all, it hurt for you.

But you never ask questions of fairness. You don’t wonder why this happened or when it’s going to end. You just deal with what comes your way each and every day. Not always happily (and who can blame you), but always bravely. There have been a lot of tears this year, for sure, but there have also been a lot of laughs. Nothing – NOTHING! – can destroy your spirit.

Instead of moaning about losing your hair, like I would, you’ve made jokes about how you look “like Uncle Lex,” and assured us that when it grows back, it will definitely be blue. When you have to swallow yet another gross medication, you talk about how the “strong medicine” is chasing the unhealthy cells away. You barely even flinch when we do six toe pokes a day each month when the wretched diabetes returns.

On the night we got the news, I carried you to bed and looked at your peaceful face, trying to convince myself that nothing had changed. Of course, I was wrong. Almost everything had changed. Most of all, that was the night you became my hero.

So here’s to you, my inspiration. It’s going to get better from here on out, and we’re going to celebrate every step of the way – starting today, with your birthday. Happy Birthday, B!

Love,

Dad

 

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August 23, 2015

The Year of Hard Lessons

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

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…

 

1 Comment   |  tags: , , , | posted in parenting, Uncategorized

August 20, 2015

Teenager In The House

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

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

4 Comments   |  tags: , , | posted in parenting

July 19, 2015

The Boy Who Would Belong

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

“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.

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

June 28, 2015

So Now What?

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

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.

 

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

June 12, 2015

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

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

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.

We’ve reached a satisfactory agreement with Genoma, including their commitment to include information about Down Syndrome support organizations with their product.

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.

197 Comments | posted in Uncategorized

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