Category Archives: Uncategorized

November 6, 2015

So This Is Forty

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

I’m waiting. Cursor blinking. Bated breath.

For the epiphany.

The flash of insight that will make this birthday somehow mean more, and less, than I expected.

We’re none of us really grown up on the inside. Being comfortable in your own skin is the best gift of all. These aren’t wrinkles around my eyes, they’re laugh lines, and that makes all the difference. Age is only a meaningless number (also insert ‘weight‘ and ‘income‘ as needed).

Yada, yada, yada… heard it before. Said it before. Sometimes I even mean it.

I’ve always approached birthdays, milestones especially, with intention. That same personality quirk that compels me to contemplate my life and think deep thoughts and talk about it ad naseum to all the world (INFJ). Shouldn’t forty be the same?

I wanted revelation, existential understanding, spiritual discovery… instead I’m slogging through the mire. Literally. The raccoons got in the garbage again last night. B has a viral infection, so there has been plenty of vomit and now the other… I’ve just started yet another load of laundry. After a day and night in hospital the backlog of grimy dishes seems overwhelming. The floor is sticky where I spilled a syringe of morning meds. What clean clothes we have are impressively wrinkled after a week in various baskets.

If that’s not enough to make me cry, our weekend plans, for Glen and I t0 spend two glorious days and a night at Harrison Hot Springs – without kids, are postponed indefinitely. B is home from the hospital on a pass, but we’re expected back this afternoon. She’s too sick to leave right now.

Except.

Except, I don’t feel any need to cry. I really thought I would. My life is somewhat of a shit show these days. I’m tired and feel older than my years. I’m in the worst shape of my life and beyond sleep deprived. None of my plans are working out. None. My life is not my own.

They take pieces of me, these ones that I love. Carving away my time and energy… slice after needy slice. Sometimes I feel like there’s nothing left. Fifteen years of non-stop diapers and accidents and cleaning up someone else’s crap. The worry and the hassles and driving, driving, driving.

*break. I had her tucked up into my bed while I washed the sheets from her own. Now I have yet another load of laundry to do. She’s cleaned up again, but broken hearted that Team Umizoomi is gone from Netflix. She just doesn’t understand. How could you do this to us Netflix? Why? WHY?

Back to my Reason-I’m-Not-Crying-Today. It’s not because I’m some kind of saint. Or ‘so strong’ as some people suggest, which is always embarrassing because I feel like I should explain how ridiculous it is so as not to feel like a phony. Marriage and parenting has made my ability to be petty and selfish and extremely, extremely whiny abundantly clear (see above for proof). Frankly, there’s absolutely nothing wrong with crying when life is hard. It’s a healthy and necessary reaction. And there will be crying at some point. I have no doubt of that.

But right now. Right now, I’m happy. This is a happy birthday.

It has nothing to do with being forty and wise. Or having reached my goals. Or having any thing at all.

My life is not my own. But those I share it with, share their lives with me too.

This morning they tried to let me sleep in. Twice the boy snuck away and tried to climb into bed with me. “I missed you so much Mommy” he’d yell (the inside voice/outside voice lesson isn’t really sticking). When it was time, he snuggled up beside me, then on top of me, then kissed what parts of my face he could reach. His gift: that I am his favourite person in the world and I will never run out of hugs and kisses.

B made a unique and sparkly necklace at school. She likes to point out every single colour of every single bead over and over again. She’s absolutely tickled that I wore it today. Every once in awhile today she gasps and says “happy birthday Mama!” – each time as if she’s realizing for the first time and is blown away by the magic of it. I know from experience that this will carry on for several months. Her gift: that I am celebrated with genuine enthusiasm, that everything I do matters and I will never, never go out of style.

My teens made me beautiful gifts also. The kind of art that I appreciate for its own sake, as they have grown in creativity. From L, a painting that represents each family member, symbols we’ve talked about before. From C, a beautiful and insightful sketch of her sister – putting her fight with cancer, her imagination and her dreams of the future all into one image. From both, a ‘flower’ arrangement made out of my favourite candy. Their gift: that I am heard, that I am a small part of the people they’re becoming and the ways in which they’ll make the world better.

My husband gave me a gift that was a true surprise. It’ll cost him more in worry and stress than in funds. He remembered my futile (I thought) longing to try para-gliding and has put the plan into motion. His gift: that I am known and understood, that there are always adventures ahead and someone who’ll hold my purse for me.

What’s more, I have birthday wishes from amazing family/friends and virtual strangers and everyone in between.

As I sat down to write this, a friend texted me a picture – she had her baby. Today! A sweet, tiny little human, with her whole life ahead of her.

Baby girl – you can count your age in hours, while I have forty whole years under my belt, but we have a lot in common. All the stuff that really matters.

It’s terribly hard work being born. And sometimes, it’s terribly hard work living life. But we are surrounded by people who love us fiercely. We have a world of opportunities ahead of us. There are so many things to learn and experience; mistakes to be made, for sure, but masterpieces to create and friendships to build as well.

Old people like me make it all so horribly complicated. It doesn’t need to be… Love. Be loved. Enjoy a nap when you can.

There’s a chill in the air, the first taste of winter, and it’s raining outside. It’s a good day to be alive. It’s a good day because we’re alive.

Happy birthday!

 

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

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

 

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

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

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

March 10, 2015

Consumed

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

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

On the menu,
once again,
is my child.

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

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

IMG_2196.JPG

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

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

February 14, 2015

There Are No Rules When You Fall in Love

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

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

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

This Is Nowhere

The Airborne Toxic Event umbrellaBy Glen

For Christie

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

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

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

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

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

On the 2nd anniversary…

View original post 428 more words

1 Comment | posted in Uncategorized

November 18, 2014

These Are the Days of our Lives: Hospital Style

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

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

Then it’s a huge deal.

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

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

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

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

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

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

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

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

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

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

It was.

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

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

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

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

Brent is now her favourite nurse. Ever.

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

IMG_1722.JPG

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

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

September 24, 2014

The Lunch Outing

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

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

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

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

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

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

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

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

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

 

McDonald's from Flickr via Wylio

© 2014 Mike Mozart, Flickr | CC-BY | via Wylio

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

3 Comments   |  tags: , , , | posted in Uncategorized

August 23, 2014

Prima Ballerina

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

lballetYou’re our prima ballerina.

That’s an old-fashioned term and I’m sure it’s not entirely accurate in today’s dance world. No doubt you’ll set me straight, rattling off French terms that slip through my mind like water, and describing in minute detail how things actually work in a dance company. That’s your world, not mine.

You are deeply invested in it: forgoing other activities, squirreling away money and birthday requests for additional classes and competitions, always spinning and leaping and holding your arms out just so. This past year you danced 4-5 nights a week: ballet, lyrical, musical theater, jazz and pointe. It’s exhausting. You know… for me, who has to sit in the car in my pajamas every other night playing on my phone while you drag yourself out all glowing, sweaty and limp with muscle strain.

IMG_0928IMG_0940

It’s a level of discipline I don’t even aspire to, but deeply admire. And so very you. To choose something you love and pour yourself into it without reservation. You’ve inherited your father’s propensity for intense devotion. That’s a good thing.

Especially for us. We have the most unusual parenting problems with you.

  • “It’s not the end of the world if you don’t get all your homework done.” You’re an honours student and our only concerns are that you chill out occasionally.
  • “Honesty isn’t always the best policy, be diplomatic.” You don’t play social games, you’re almost impossible to offend, and you only seem shy because you’re quiet.
  • “Let us be the parents, relax.” You step in so much to help with your little brother and sister that they consider you more of a parent than a playmate. You are a powerful combination of responsible and nurturing, especially for someone your age.

And that’s the tough stuff. Who knows, maybe 14 will usher in a wild period of rebellion. I doubt it.

This year we celebrated 13 with a mother-daughter trip to New York City and Boston. Not only was it a great adventure for us both. It was a great opportunity to step away from normal life and just enjoy you. We had so much fun, so little sleep and made so many memories.

Life just gets busier from here on out. You’re already commenting on how fast time flies by. It just gets faster. The teenage years aren’t always easy, not even for us responsible types. But they are also exciting and important. Enjoy 14. It only happens once.

Love,

Mom

And now, a word from Dad…

Dear L,

Who is this young lady I see before me, and what did she do with my little girl?

What a year it’s been for you. New York. Chicago. A starring role in the ballet show. High school. New friends, new church, new babysitting jobs…

To be honest, as hard as it is for me to believe that you are already 14, I also have a hard time remembering that you are ‘only’ 14. You bear so much responsibility at times and juggle so many things so well, that you often seem much older. You are mature beyond your years, and I couldn’t be prouder. But, don’t let the world – or your parents – rob you of your teenagehood. It’s easy to pile things on you because we know you can handle it, but sometimes we also want you to just enjoy being young!

I’m so glad that you and Mom got to take that trip to New York. Not exactly what I had in mind when I first pitched the idea of a 13-year-old trip many years ago, but so much better. When you got home, Mom told me how wonderful it was to spend that time with you. For the first time, you were relating to each other as something close to peers; she got an early taste of what it will be like to hang out with you as an adult, and she loved it.

I joke about being jealous of you guys getting to see New York without me – and it’s true, I would love to go someday. But more than seeing the city, I’d just love to be able to spend that kind of focused, uninterrupted time with you, anywhere I can get it. As your schedule gets increasingly full with school and dance and jobs and friends, that time becomes more and more precious. I promise to make it a priority over the next few years, if you promise not to roll your eyes about having to spend time with your old dad!

I also joke about you being another me. And though we’re so alike in so many ways, the truth is, you are uniquely you: a one-of-a-kind mixture of kindness, generosity, smarts, beauty, grace and wisdom. Your grandparents, your aunts and uncles, your dance teachers, the people you babysit for – they all tell me what an exceptional person L is.

But they don’t have to tell me – I see it every day. I love you! Happy 14th birthday.

Love, Dad

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August 20, 2014

Raising You is an Art, not a Science

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

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.

You came in a swirl of colour and emotion and self determination. You knocked us out of our neat, manageable orbit. You made us laugh. You made us cry in frustration. You made us see things differently and pay attention to what matters most.

You still do.photo 1

For the first 8 months you refused to sleep in a crib, ever, peacefully slumbering the nights away in your car seat. As a preschooler you INSISTED on wearing a plastic, gold-foil tiara all day, every day, for more than a year. By school age, you eschewed nightgowns and pjs, sleeping fully clothed, occasionally with your back pack strapped on your back.

You have always danced to your own off-beat tune.

You still do.photo 2

I love that about you. There’s so much I love about you. We butt heads a lot. Me parenting you and you being parented by me, is not something that’s ever going to be easy. We’re too much alike in temperament. But I see you, and even when we’re completely at odds I see the great and amazing person you are becoming too.

  • You are creative, not only in the art you make, the strange inventions you think up, but lately in the stories you tell (in serial form to eager classmates); the Unhappily Ever After novella you wrote was dark and snarky, but vibrant and descriptive in a way that warms your writer-parents’ hearts.
  • You are passionate, feeling all the feelings deeply (and loudly).
  • You are sociable – an extrovert in a family of introverts, who genuinely enjoys people and values that interaction above whatever task or activity is happening.
  • You are funny, so cleverly, sarcastically, mature-beyond-your-years funny that guarantees we laugh more than most families. Wit is a hallmark of brilliance (that and your newfound appreciation for science fiction – bravo).
  • You are beautiful. And I know that you can’t see that most days. Which might be your age, or your desire to be tall and willowy, or this stupid, plastic, air-brushed world we live in – but I hope that every time you look in the mirror you see past all that, and see the beauty that I do. If you can do that, I will promise to stop call you “cute” which I know you hate.

It’s not easy being a middle child. Especially not in a family like ours. But you are strong and spirited and that bold personality refuses to fade to the background. Since I first began coaching your 4-year-old sister NOT to let the baby (you!) push her around, I knew you’d be a force to be reckoned with. From day one you’ve challenged us, and though it can get bumpy and intense, I believe that in the end, it’ll be a good thing, both for you and for us. It’s possible that my personality is just a smidge ‘strong and determined’ too, so I have to take some credit/blame.

The world needs more good, strong women – and you have all the makings of a great one. I’m so glad to be your mom!

Happy Birthday!

And now a word from Dad…

Dear C,

In so many ways, I feel like we’ve learned more about you, and the woman you are becoming, in the past year than in any year that’s come before.

I see it in your artwork, which stuns me with each new piece. You have so much creative talent bottled up inside you, and now that it’s spilling out onto the page (and your bedroom door), I’m absolutely astounded – and so proud. I just can’t wait to see what you will produce as you continue to learn and grow in your skills and passion.

I see it in the Once Upon a Time story you wrote for school which, let’s face it, was really more of a novel. I didn’t know whether to be disturbed by the darkness of your tale or excited by your ability to spin it with a vocabulary that far outstrips your age, but I chose the latter. I know you don’t see yourself as a writer, but in a family of writers, it’s clear that a little something has rubbed off.

I see it in your wicked sense of humor, in the movies you enjoy, the books you read, and the songs you sing. You are a ton of fun to hang out with, which makes it all the more sad when you take off on us for three weeks, like you did this summer for Chicago. And yet, I’m so glad you got to have that amazing experience.

I see it in your dance, where you worked so hard and stuck with a class that you hated, just so you could do the ones that you love. That willingness to persevere and go after what you want will serve you very well.

I see it in your love and patience with B and S: how quick you are to forgive when he unintentionally hurts you, and how you always choose to play with the kids rather than put away the dishes.

And I even see it in your desire to make up your own mind about church. I know that our change has been hard for you to accept, and while we do want Nexus to be a family thing for now, and for you to give it your best shot, I greatly admire you for standing up for what you believe, and really owning it. I will always support you in that, whatever path it leads you down.

I love you C, and I’m proud and grateful to have you in our family. Happy 12th birthday – next year’s a big one!

Love, Dad

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