Author Archives: So Here's Us.... life on the raggedy edge.

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

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I'm a bookworm, nature lover, kick-boxer, candy fiend, sci fi geek, home body, progressive Christian and part-time student. I love my crazy life and the messy, fun, stubborn, silly, brilliant people who populate it.
October 26, 2013

Our Halloween Compromise

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

Have you ever wondered about those religious types that hate Halloween? Or maybe you are the religious type who wonders what on earth people see in this creepy “holiday.” We’ve got both kinds in our family, so we’ve had to find a middle ground. Here’s a post from last year about what works for us…

The "Happy Scarecrow" C made for our front lawn last year.

The “Happy Scarecrow” C made for our front lawn last year.

We didn’t celebrate Halloween in my house growing up. There are a handful of pictures of Preschool Me as Red Riding Hood, but by the time my sisters came around, my parents’ “liberal trick-or-treating” urges had been thoroughly quashed. No carving pumpkins, no “what-are-you-going-as-this-year” discussions, and absolutely no witches, ghosts or monsters. We also didn’t do Santa Claus, the Easter Bunny or the Tooth Fairy.

This sounds weird to most of you, right?

I don’t regret my somewhat unusual childhood. I didn’t miss anything important. I learned that I didn’t have to be like everyone else. And I didn’t often feel deprived (also, I snuck out with Jen Mastre to go trick or treating several years in a row… sorry Mom).

But, my husband comes from a very different culture than mine (most North Americans refer to it as Middle Class Normal; we called it “worldly”). When our cultures collided, I was forced to evaluate exactly what I think and believe about Halloween. And what it means to be a Christian.

Christians feel a great responsibility to represent Jesus to the whole world. When you love/admire/respect someone so deeply and feel that your every action reflects on them, well, that’s a lot of pressure. And sometimes, we can get weird about it. Halloween is one area where we as Christians sometimes overreact and freak the hell out (pun intended).

There are belief systems which are repugnant to me. Satanism, Aryan Nation, Rampant Consumerism, “Not Liking” Chocolate… to name just a few. But I’ve come to a point in my life where I am no longer threatened by them. God is not panicked by Halloween, so why should we be?

Whatever position you take on the Origins of Halloween debate (evil demonic ritual or harmless harvest party), at this point in history, right now, it has become a mainstream celebration of masquerade and candy and general creepiness. What matters most is not what it once meant, but what it means now. A lot like that pagan festival at the end of December that we’re all so fond of these days.

Make of it what you will. October is full of teachable moments in our home about what we believe and why we’re weird and how we live and how it’s okay for people to do things differently than us. And there are many good things about Halloween, especially for Christians:

  1. It builds COMMUNITY. It’s a rare chance to spend time with your neighbours. And show off your kids. In really cute costumes.
  2. It’s an opportunity to be GENEROUS. And kind. And neighbourly. And hospitable. And all sorts of Jesus-y things. A unique chance to do all this in a culturally appropriate, non-obnoxious way. Plus, the really cute kids in costumes come right to your door – how convenient is that?
  3. It’s FUN! This seems like the weak post-script at the end of the list. I mean, Christianity isn’t about having fun, right? Except for all the talk of joy and love and endless feasts/celebrations throughout the Bible which paint a different picture. I can’t see Jesus as the disapproving sourpuss with a dark house; more likely he’d be out there high-fiving the neighbour kids and enjoying the cute costumes. I know I will. Well, that and making sure the appropriate Candy Tax is levied on each child.

That said, I still don’t love Halloween. It’s just not my thing. We have friends who absolutely adore it and enjoy every minute. According to some consumer reports, it is second only to Christmas in holiday popularity.

But I find much of it unsettling. Years ago a neighbour strung up the corpse of a child in a tree, noose and all. Of course it was fake and supposed to be a fun decoration, but that year we knew two children who had been murdered. To say this was an upsetting would be an understatement. It gutted me that anyone could make light of it.

So we drew our line in the sand.

We do not celebrate fear and violence. This is our Halloween compromise. We enjoy the good. We avoid the bad. And for us, that means no spooky, scary, gorey, creepy, bloody, or (and this one is the rule throughout the year) slutty.

So here’s me, and this is how we redeem Halloween in our house.

Where do you stand on Halloween? Anything goes… the creepier the better? Or are there limits?

Reposted from Oct. 29, 2012.

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

October 24, 2013

The Best Way to See NYC

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

She’s a lot of fun – my travel companion, my new friend. She laughs when I do and sees humour in our misadventures (which is fortunate, because we’ve had quite a few). She’s patient with my map-fumbling and missteps. We’ve seen the same streets of NYC several times over, ridden the subway in circles and taken the could-have-built-the-Empire-State-Building-by-now ahem, long way, several times.

Sadly, her sense of direction isn’t much better than mine. But her sense of adventure is bar none.

Don’t get me wrong, we’ve had our spats. She thinks she’s always right. Since I KNOW that I’M always right, it’s a problem when our respective rightnesses clash. What’s worse, I’ve learned that older isn’t always wiser and have had to concede to being slightly less right than her a few times. Ouch. She’s even less gracious in her concessions than I am. Like mother, like daughter, I suppose.

Getting the Party Started

The red-eye flight out here was no picnic. After only 30 minutes of sleep I startled awake knee-to-knee and nose-to-nose with the unfriendly man in the next seat. Like most Canadians I find this level of unintended intimacy deeply disconcerting. I spent the rest of the night watching Downton Abbey reruns through bleary eyes. I’m afraid that no amount of Earl Grey can produce chipper after a night like that.

We yawned our way through the Museum of Modern Art (which was amazing nevertheless), Times Square (overwhelming), and the world’s worst tour guide. Finally, I understand how very annoying it is to my children when I start a sentence, trail off and leave it hanging in mid-air.

Tired, but still ecstatic to be here, we found refreshment in Little Italy. Is there anything a truly great piece of pizza can’t fix?

We stumbled into bed with visions of Broadway shows dancing in our heads.nyc

NYC is full of New Yorkers

We nibbled at the Big Apple for the next 2 days. And it was delicious! There is something invigorating about this boisterous city and it’s Babel of languages and ethnicities and colours. We saw the Statue of Liberty, the Harbour at nighttime, the Natural History Museum, Central Park, the Metropolitan Museum of Art, the 9/11 Memorial and the inside of WAY too many stores.

The tour book said not to greet people on the street, because they’ll think you’re crazy. After a few polite smiles and head nods I can report that this is, in fact, true.

Not only that, but they won’t get out of your way. At one point a man came to a dead stop directly in front of me. He wouldn’t shift left or right. Just glared at me, until I scuttled sideways, then continued barreling down the sidewalk. I’m not clear what game we were playing, but I’m pretty sure I lost.

This doesn’t mean they’re not nice. Though no self-respecting New Yorker would cop to a descriptor as wimpy as “nice.” Loud and pushy translates into exuberant and interesting if I remember my place. After all, this isn’t my world, it’s theirs.

When my “thank yous” were overly effusive, eyes rolled. When we stopped and waited for the light to change, people tripped over us. Rude is a cultural construct after all.

On the other hand, advice and opinions are freely offered in New York. Most people we talked to were eager to show off their city and give us their best efforts (the rest were simply hustling us for tips). There was the policeman who gave us directions, then outlined the itinerary he felt we should follow for the rest of the day. And the matriarch of a Greek diner we discovered (read: stumbled into while looking for something else) who knew exactly what we should eat… and was right. New Yorkers have a brusque charm that is strangely appealing.

Our Favourite Things

If you ask my daughter what the highlight of our New York trip was, she’ll tell you all about “Wicked,” the Broadway show that stole her heart. It was brilliant!

nyc2But my highlight didn’t come with a playbill or a souvenir postcard. The best part of this trip was being just us. With a big(ger) family, with the extra demands of special needs children, with her serious dance commitments and homework and paper route and growing social life, I don’t get much time to enjoy her – something I know will only get worse as the next few years fly by.

My Favourite Teenager

Turning 13 is a huge milestone. We wanted our own “rite of passage” to celebrate with our kids, so years ago we came up with a plan. We discussed the bat mitzvah-style parties and coming of age rituals which are becoming more and more popular, but they just weren’t “us.” A trip, however, with its concentrated one-on-one time and attention, a shared experience, an adventure, a memory… that has “us” written all over it.

Of course, NYC is more ambitious (read: expensive) than we envisioned, but it has been priceless.

I thought I would take this opportunity to parent intentionally. I thought we would have an important episode of the sex/boys/self-worth conversation, with forays into girl politics, healthy choices and 14 reasons drugs are for losers. But those are part of our ongoing discussion. She hardly needs an official sermon at this point, because we’ve been talking about it all along.

Instead, we had fun together. Turns out, that’s not a less important parental function after all. Especially when we are navigating a new level of independence on her part and more of a supporting role on mine. Turns out, that’s what we really needed.

Dear Teenager,

You already know that I love you. That I will fiercely protect you, and relentlessly hound you to do chores, and expect the best from and for you, and pray for you, and catch you when you fall.

But do you know how much I like you? Do you know that I WANT to spend time with you? That I think you are interesting, and bright, and kind?

We might not always get along like we do now, but that’ll always be there. When I look at you and when your Dad looks at you, we see more than what is. We see the best version of you.

Hopefully, because of this, you can see her too.

I saw her a lot this week, grinning at the camera in cheesy poses all throughout New York. She’s a lot of fun! I’m so glad I got to know her a bit better this week!

Love
Mom

The best way to see NYC has nothing to do with maps, or itineraries, or even tour guides… the best way is to see it with someone you have fun with.

So here’s us, travel buddies, explorers, friends… a great way to start the teen years. I’d highly recommend it.

Still to come… visiting my nephews (oh, and the grown ups who live with them, whom we also love, though they will forever be eclipsed by the cute babies).

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

October 22, 2013

All The Bad Things

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

Never send this text to your mother:

15469215733

Never call your wife on the other side of the country, clearly upset, and say with great foreboding: “There’s been an incident.”

For a few minutes yesterday I experienced All The Bad Things That Could Happen, all at once. There was a fire. There was an attack. There was the boy jumping off the 2nd story deck, climbing into a hot oven and eating all the meds in the cabinet (he’s actually attempted all of these  things btw).

I didn’t know the details. I didn’t take time to process it all rationally. For a few heart-stopping, gut-clenching moments I just KNEW that my babies were dead.

“Everyone’s okay.”

This is a better opener. Even if everyone is not completely perfect. Even if you need help/sympathy. Even if you have an exciting, dramatic tale to tell.

It could have been Bad. I can’t imagine how scary and traumatic it was for my husband.

He’s already a hero for staying home alone with the 3 youngest kids, while I took the most helpful one away on a grand adventure. Now, he’s got a harrowing tale to seal the deal.

He’s changed dozens of tires, maybe hundreds. Despite technically knowing how to do it myself, I am decidedly un-feminist when it comes to automotive care. He’s been changing my tires since I was 16 (and, no, that’s not a euphemism).

He didn’t think much of it. Just another chore in an overwhelmingly busy week. In a split second, with the smallest shift on our uneven driveway he found his arm pinned under the van.

Alone.

Intense pain.

Kids on their own.

I’m sure my 11-year-old was equally panicked! But she called 911 and kept the littles inside, away from the action. While she began to explain the situation to the operator a neighbour arrived. She (clearly a better feminist than I) jacked the van back up and helped Glen pull his arm out. A practical nurse by trade, she examined his arm. Bruised, swollen, painful, but nothing seemed broken. Crisis averted.

It could have been Very Bad. I’ve run those scenarios through my mind too. Somehow it seems worse because I was so far away.

Even now, as I write this on a seatback tray-table at 23,000 feet winging my way home I feel better the closer I get to home.
As if I can protect them.
As if I can hold trouble at bay.
Or lift a van off my best friend with my bare hands.

At least I can make sure he actually gets that hand x-rayed. And takes it easy. And knows that I don’t take a minute with him for granted.

For some people, that text, that call, really is Very Bad News, painful beyond imagining. A friend’s cousin was pinned under his car and died just last month. There seem to be endless tragic possibilities lurking around every corner.

It makes us want to hide. To wrap our loved ones up in bubble wrap and keep them far from every threat.

But that is not a life.

Instead we remember how fragile and precious every second is. We won’t pretend we are immune, but prize each exciting adventure, each meaningful connection and each peaceful moment, all the more. Maybe the occasional close call is a gift in that way.

My 11-year-old can’t wait to tell me every thrilling detail. My husband can’t wait to hand over the cooking and the diapering and the getting-up-in-the-night. I can’t wait to hold them close and finally breath properly again.

Also, I will be changing the next tire myself.

So here’s me, SO grateful for all those who rode to the rescue when I couldn’t – our neighbour and our friends (especially Ray for fixing our tire – bold move) and my parents. Also, Colleen and Miguel for talking me through the panic.

Stay tuned for more about our NYC/Boston trip…

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

October 11, 2013

No Ordinary Day

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

Ordinary people drive car pools,
pack lunches,
wrangle unruly socks and toddlers…
I am equipping explorers.

Ordinary people wipe noses,
change diapers,
pour cough syrup down unwilling throats…
I am fighting the good fight.

Ordinary people break up fights,
talk to teachers,
lecture about kindness and self control…
I am molding the future.

At least I am today.
Today is a good day.
Today is an adventure.

So here’s me, I’ve done all these ordinary things today, but they seem more profound and wonderful, since I’m leaving them all behind for 8 days. My and my favourite teen are heading out on a real adventure this afternoon, just us. And the entire city of New York. And my sisters family (cute nephews!!!!). What a great way to celebrate 13 – especially for my easy-to-parent girl, who gives up so much time and attention to the littles everyday.

This was my Five Minute Friday post – join in here.

5minutefriday

5 Comments | posted in Uncategorized

October 4, 2013

Damsel in Distress Part 759

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

It’s that time again. Time for me to dust off my recurring role as the damsel in distress. I’m beginning to fear I’ve been typecast by fate. So far this blog has entertained… well, not millions, but my definitely my husband as I lock my keys in the car, get stuck in the snow and give myself a black eye, just to name a few.

I have no one to blame but myself. Or my children, and the significant sleep deficit which is definitely their fault. But what kind of Mom blames her own children for her frazzled, overwhelmed and far-too-often absent minded performance?

This one. I blame them. I love them, but I blame this crazy, relentless, exhausting life and my subsequent doziness on those adorable mini people. I don’t know who I’m going to blame when they grow up and leave me.

cartMy latest drama begins in our local supermarket. I sped through my list as fast as humanly possible while the boy alternated between screaming at the top of his lungs (and he has some impressive pipes on him) and cheerfully pulling everything off the shelf as we rolled by. By the time I got to the checkout line I was frazzled and nearing defeat.

$188.33

More than I’d like, but par for the course these days for the feeding, cleaning and diapering a family of 6, at least in our part of the world. Four of us don’t even need diapers, so that’s a huge savings right there.

Feeling a little smug about my foresight, I pulled out my newly activated credit card. My wallet was stolen last week and I’ve been slowly re-making my plastic identity. It’s one of those extra tasks which seems insurmountable in the face of our usual daily grind. But I did it. I called the number. I even signed the back.

I did not, however, take note of the new pin number which would be arriving in the mail also.

*sigh*

So here we are, with a fully loaded cart of groceries, a half eaten bag of fishy crackers (see above re: screaming), a grumpy three-year-old, and the Perry the Platypus sticker he just stuck on my chin. Embarrassed, but not unused to this position, I tell my story and ask them to hold my groceries until I can return with yet another new credit card waiting patiently at home to be activated.

I felt so bad for the man waiting behind me. He had a bag of oranges and a couple bananas. He was about my age, but polished, put together. The kind of guy who drives a nice car and goes to the gym a lot.

I wonder what he saw as I stood there in my second-hand boots, bags under my eyes and hair falling out of its clip. My son whining and grabbing me while sporting a wicked black eye and a runny nose. I was cringing inside. Feeling judged. Feeling humiliated.

As the checkout lady begins to wheel our cart away, he says, “Wait!”

He leans over and peers at my receipt. He pulls out his credit card. He waves his hand, like it’s no big deal.

“I’ll pay for it. Then you won’t have to come back. It’s my gift to you.”

“Uhhh… oh no, no.” I stammer. “It’s, like, $200. Really, it’s okay.”

He insists. He pays. He acts like it’s no big deal.

This was an extremely rare moment for me. I didn’t know what to say. I didn’t even know how to start. I was struck dumb. I hope I remembered to say Thank You. I hope I said it a lot.

As I packed my free groceries into the van, he began to drive away. I flagged him down, standing outside his window in the rain, so I could at least shake his hand and find out his name.

He told me that it seemed like I was having “a day,” plus having my wallet stolen and all… He said something about putting good out in the universe and it’d come back eventually. His name was Nick.

I had a lot of feelings about this. My first was pride. I didn’t want to seem pathetic (though, let’s face it, I probably was), and I could take care of it myself. My second was practical, and just a little bit mercenary. I’m going on a trip this month that falls outside our budget and we are feeling it. $188.33 is a lot of money to us. My biggest feeling, however, the one that has followed me around ever since, was bone-deep, soul shaken, faith-in-humanity-restored, just got a-hug-from-God, giddy and amazed GRATITUDE.

It’s not the $188.33. It’s not the time, hassle and embarrassment saved. It’s the unexpected, unsolicited, unassuming grace of the moment.

I’ve been tasting it ever since.

And that’s worth a whole lot more than $188.33.

$188.33

So here’s me, thanking Nick. Because I needed that. 

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

September 29, 2013

I Am From

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

I am from snow pants and toboggans, from stacks of library books and homemade mac ‘n cheese.

I am from the big house on the corner, filled to the brim with friends and strangers and children always underfoot. I am from crab apple trees and lilac bushes. I am from a red metal swing set and forts in the basement. I am the brave hero and beautiful princess and brilliant police dog from thousands of adventures. I am from Anne Shirley, and Laura Ingalls, and Caddie Woodlawn.

I am from camping trips and bike rides, from going for a drive, with no particular destination in mind. I am from Bill and Barb and the Robson girls. I am from eating ice cream year round and reading into the night. I am from “life isn’t fair” and “God is in charge” and “The Old Rugged Cross.” I am from napping in a slip between morning church and evening service.

I am from eating the crusts after the Breaking of Bread and stealing sugar cubes in the foyer. I am from Pioneer Girls and Awana and Youth Group. I’m from The Meeting, from the Chapel, from full-time ministry, from questions and wrestling and finding my own way to love Jesus.

I am from Calgary and Scotland, roast beef and apple pie. From the old country, from a farm on the prairies, from stories of William Wallace. I am from Los Angeles, from avocado and orange trees, from cousins down the street. I am from family friends and Three Day Meetings, from a man who fell in love with his friend’s little sister, from a 19-year-old woman who moved across the continent for him.

I am from slide shows of family trips, from playing in the attic, from progressive Christmas dinners. I am from the blue Porsche in the garage, built before I was born. I am from walks around the reservoir and climbing the big “H”, from Stampede breakfasts and cowboy hats.

I am from biting my tongue and being the better person. I am from laughing and eating and endless small talk. I am from people who always have room for more, who always have more to give.

So here’s me.

Taking part of the I Am From synchro-blog at She Loves Magazine. You don’t have to be a writer, just follow the template and write your own version of George Ella Lyon’s poem. It’s worth doing.

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

September 23, 2013

Disney and the Magical World of Disabilities

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

It’s been called a “Modern-day Mecca.” Most North American families attempt a pilgrimage at least once in their life time. It’s billed as the Happiest Place on Earth. It’s Disneyland.

My parents hated it. The slick consumer culture, the crowds, the noise, the underlying thrum of excitement, but most of all, the price. They didn’t feel the magic.

My husband and I do. We love Disneyland! We’ve always loved it! The price is a stretch to say the least, but well worth it to us for the excellence in every detail, the nostalgia, the rides and the underlying thrum of excitement. Since we have family who live in the area, we’ve been able to go a lot more than the average family. It is a perk we don’t take for granted. Bringing our children, especially when they were young, remain some of the best family memories in our arsenal.

The First Visit

IMG_0024We took our youngest daughter as a baby, along for the ride while her older sisters gaped in amazement at the “real” Winnie the Pooh and screamed with delight on the Peter Pan ride. She slept through most of the day, but looked cute in pictures. We were just like everyone else.

The Second Visit

Two years later we were back. I had some misgivings about B’s ability to handle the day, so my parents (who love us enough to endure the park they dislike) tagged along. I had heard that there was some sort of accommodation for guests with disabilities, but resolved to avoid it. I was embarrassed to ask. I didn’t want to be unfair. I was sure we could handle it, just like everybody else.

Unlike a typical 3-year-old, my daughter wasn’t able to walk or even stand on her own. Desperate to be mobile, she would scoot on her bum at an extraordinary speed. As you can imagine, this was a filthy way to travel and terribly hard on clothes, and terribly inconvenient to adults who don’t expect a headstrong little speed bump to pop up unexpectedly.

She was okay as long as we kept her in the stroller, but her sisters were eager to go on rides and show her all the wonders she had slept through last time. The waits weren’t particularly long, but holding a squirming, screaming toddler can make time pass extraordinarily slowly. Not only was she dying to move, but she could see something exciting, just out of reach, and was enraged that we wouldn’t let her go to it immediately. As the lines wind closer and closer, then back around, farther away again, she must have thought we were playing a cruel trick on her. By the time we made it onto the ride she was almost inconsolable.

She LOVED being on the ride. She would squeal and clap and laugh with pure excitement. For 30 seconds. Then it would be time to get off; we would pry her fingers off of the bar and drag her away and head to the next lineup. By now, she really was inconsolable.

After a few hours, she had to go home. It was all too much. It was just too hard. The crowds. The noise. The heat. The waiting in line. She wasn’t the only one being punished for it; we all were, the whole family and everyone in her vicinity.

Third Time’s a Charm

Disney 003Our next visit, I was prepared. We had been planning and talking about this day for months. B had been looking at her sister’s pictures and had become enamoured with the Disney Princesses (though she didn’t have the attention span to sit through an entire movie). I had documentation of her Down syndrome (in case looking in her eyes wouldn’t be enough) and after our last disastrous visit, absolutely NO compunction about taking whatever extra help Disney could offer us. After all, I’ve finally made my peace with the fact that we’re not just like everybody else.

There seemed to be a lot of confusion about where and what we were needing, but we finally found ourselves at the City Hall talking our way into a “Special Assistance Pass.” They didn’t give it willingly at first, but I stood firm: we just can’t handle a repeat of our last visit, not when she’s so excited to be here.

The Pass was intended not just for guests who have visible disabilities, but also those with cognitive, emotional or behavioural problems and need extra support to be able to enjoy the Disney experience. Usually, this meant using an alternative entrance (fast pass or going in through the exit) and waiting there. We didn’t cut to the front of the line right away, but waiting in a calm, cool, less crowded spot makes all the difference.

I’ll admit, it makes our ride experience much faster. That’s the only way it works for us. B can’t tolerate many different rides, so mostly we went on the tamest rides over and over again. But she was wild with excitement!

There’s an age, when adults are giants and characters in books/movies are real and that cool veneer of realism hasn’t yet begun to form. I love taking my kids to Disneyland at that age. They call it “magic” and it really is. My 5-year-old was there and we all basked in her wonder.

Now

She’s still there. At 9-years-old she still believes. She is still amazed. She watches “Brave” at least once a week and if you can understand the words, she’ll tell you the entire story. She often stops and looks at the Disneyland pictures hanging on the wall. She asks to go back all the time.

There’s not much that our entire family, big kids included, can do and enjoy together. Outings are hard. Interests range wide and far. Attention spans are short. These days, B is quickly overwhelmed by new situations, especially ones involving crowds and noises. Even more so than 4 years ago, she needs support.

Now we have a little brother in the mix. He’s never been to Disneyland, and that just seems wrong when you consider how much our family loves it. He has his own blend of special needs: extreme hyperactivity, sensory processing disorder and general impulsivity to name a few. I’ve learned a lot over the years about our limits and our needs, and I’m no longer embarrassed to ask for help. He needs support.

We’ve begun planning (and saving) for a family trip to Disneyland. It’ll take a while, so we’ve booked a timeshare for December 2014. But that anticipation is half the fun for our crew. We’ll have our days mapped out, eateries scoped and show times noted.

That is, if Disney has a workable special needs Guest Assistance program available…

Right now, Disney is getting rid of their Guest Assistance program. It has been badly abused over the years, which has ruined it for those of us who truly need it. They are rolling out a new program on October 9th. 

It sounds terrible.

I had hoped that this was one of those online stories that was wildly exaggerated, but my research has been discouraging. The Disability Assistance System is like a modified Fast Pass, which involves at least two extra lineups/waits, only applies when the wait time is more than 45 minutes (waiting that long is so far beyond our son’s capacity that it’s laughable), AFTER extra lineups, we’ll end up in the regular line anyway (which I’m sure will be fun for everyone)… oh, and it only works on a select few rides.

Without extra help, Disney isn’t do-able for our family.

Just one more thing that’s out of our reach.

There are other families with even more complex problems in the same boat.

As a company, Disney has a reputation of going the extra mile, making every effort to create an amazing experience for ALL their guests. They have certainly won us over in the past. I can only hope that they will hear what special needs families, and those who support them, are saying. I hope they will build a system which actually helps my children and others like them. I hope they’ll make it a priority.

If you want to help, please:

Sign the petition

So here’s me, sad that so many people abused this system which worked so well for us. Sad that the new system seems so unworkable. Mostly, sad that we might never get to share a Disney adventure with our boy.

For more information:

Thanks Erin, for bringing this to our attention!

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

September 18, 2013

Apology from a Recovering Evangelical

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

waitress “Can I get you anything?” she says with a pleasant smile, warm, but professional.

“I’ve got something for you!” you say, with all the giddy certainty of an As-Seen-On-TV salesman. “GOD has given me a picture of you, and I see… I see…” – pause for dramatic effect – “…YOU standing in a high place. You’re… looking out… over the world, or maybe your own life. This is important. This is a message. What does it mean to you?”

“Um…” Wrinkling her brow. Shifting from one foot to another. The smile firmly fixed in place now.

“Maybe you need to change your viewpoint, so you can see more clearly.” All eyes are on her now, searching, intense, as if, by simply looking, you might unmask her very soul.

“O…Kay…” She’s freaking out now, but far too polite, too Canadian to break. “Refill?”

You sat in the booth behind us at White Spot. I didn’t mean to eavesdrop, but at least two of you have loud preachy voices and I heard some familiar churchy buzz words sprinkled liberally throughout the discussion. I cringed a little at the tone of your conversation, but I understood…

I came from that world. Although many of my beliefs have evolved, I still visit from time to time. I used to work for one of the most aggressive evangelical organizations in the world. Once upon a time, I was you.

When the pretty server came to your table, you took her hostage. Not with guns or threats, but with words. Loud, preachy, bizarre words. Especially coming from such a large group of young people. You “prophesied” over her. You “spoke God’s encouragement into her life” while she tried to politely back away. You asked intrusive personal questions. You tag-teamed her. It went on and on.

It wasn’t pleasant, seeing it from the outside. I searched my memory for hints that I had ever acted like this. Thankfully, what I came up with wasn’t nearly so obnoxious or odd. But still… embarrassing.

Didn’t you see? The tense smiles, the nervous laughter, the stiff body language… not just hers, but everyone around you. Didn’t you notice? That you were preventing her from doing her job. That there were tables of people waiting impatiently for her attention. That her manager was shooting angry looks her way. Didn’t you care? That she was incredibly uncomfortable. That everyone nearby was also. That the family behind you was falling apart, both littles crying as we waited an extra 20 minutes for both the bill and the ice cream they were promised.

Granted, my personal irritation plays a big part here. With our nice family outing descending into chaos, as Dad hauls one out to the van and I encourage the other to stop crying and hold it, just a few more minutes, until I can pay (she didn’t by the way, but I can’t blame her for this potty training fail). I’d take it on the chin if I knew you’d actually done some good in the world. But all you did was offend and alienate a stranger, and cause a crowd of people to shake their heads and turn up their noses in disgust at “those ridiculous Christians.” You made us all look bad.

The uncharitable part of me assumes that you’re enamoured with the sound of your own voice; that you’re showing off, intentionally or unconsciously. If I give you the benefit of the doubt, then you really did want to encourage her. I remember my own burning desire to truly please God and help others, channelled into the same pushy ethos; strong enough, even, to override polite Canadian reserve.

Whether it was pseudo-spiritual posturing or legitimate reaching out, you didn’t love your neighbour well. As you walked out the restaurant with us, I saw you congratulate each other, certain that you had forced some sort of revelation on that poor girl. I could have shaken you, every one of you.

That’s not what it’s about. You need to REPRESENT. Not just me, though I follow the same God in my own way. Not just your particular brand of Jesus. But the Man himself. The man who said the highest commandment, next to loving God, was to love others.

Love. No agenda. No disrespect. No selfishness.

I hope, at least, that you left a hell of a tip.

So here’s me, a recovering evangelical. I’m sorry for all the ways we make people uncomfortable. I’m sorry if I’ve ever done that to you. We mean well, we really do. Please forgive us.

This is my contribution to the WordPress Weekly Writing Challenge: Dialogue

18 Comments   |  tags: , , , , , | posted in Faith

September 14, 2013

Simon

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

Grief is like a snowflake.
An ugly, muddy snowflake.
Each one nightmarishly unique.
No grief like another.

Snowfall brings a blanket of fresh beauty,
grief coats the world in sadness.
Everyone and everything around you,
dusted with your sticky sorrow.
It seems to soak beneath your skin,
right into your soul.

Even as I write this it seems garish and melodramatic, embarrassingly over the top. But that was how I felt 10 years ago today, when my baby was born.

On April Fool’s Day that year I call Glen at work and play an elaborate “I think I’m pregnant” trick on him. With a 2 year-old and a not quite 8-month-old at home, it seems like a good laugh. He wasn’t amused. But I laugh my butt off at the sheer panic in his voice.

Well the joke is on me. Exactly one month later on May 1st I call him at work again and say, “It’s not April Fool’s today. This is not a joke.”

We have been hoping to have more children. We were also hoping to have a little more space in between. I am breastfeeding and we have taken some steps to avoid this, but apparently we’ve been overruled by a larger force (or our cheapness in the b.c. department).

I am, and have always been, a baby-crazy kind of woman. But my first reaction is… exhaustion. I am too tired to be shocked. I’m sure this baby is why I am already so VERY tired.

Over the next few months I don’t feel much better, but I am beginning to look forward to my newest addition. At only 15 weeks I feel him move for the first time. Fourth pregnancy in 4 years means I’m a Rock Star at discerning those little bumps and wiggles. Suddenly I am talking to him and getting my girls to do the same. We start making plans and settle on names – Abigail for a girl, Simon for a boy. Now it’s real.

My friend Shannon is staying with me for the weekend when my 20 week ultrasound comes up. I leave my girls with her for the afternoon and meet Glen at the lab. I try to think of it as a date. I hate this part.

After losing our first child, Noah, we find these kind of tests nerve-wracking. The first few with my oldest daughter were a vale of tears and the absolute certainty that something must be wrong. The next baby was easier. And this one, is only a flicker of concern.

Of course, I have to pee. Which makes me feel nervous. Which makes me feel like I need to pee. It’s a terrible cycle. I chalk my unsettled feelings up to that.

Mostly, we are looking forward to finding out the sex of the baby. I’ve heard that they won’t actually tell you, here in the Lower Mainland, that you have to wait and find out the results from your doctor. But I’m dying to find out. It’s important to me, to call my baby by name. It makes it easier to look forward to him coming, to feel confident that we’ll actually bring him home. It’s not something other moms might worry about, but after Noah, it’s an issue for me.

I sit in the waiting room and obsess about this. Will they tell us? Won’t they? What if I cry? What if I tell them the whole sad story? Also, I have to pee more than anyone has ever had to pee. Think dry thoughts.

We get situated in a dark closet-like room and I run through my customary spiel. I know she can’t give us any information, that she needs to take measurements and talk to the radiologist, and won’t show us the screen until later, but we’ve had such a terrible loss and need immediate reassurance – please let us know that the baby is alive, right away. That’s all we need.

She smiles at us and pats my hand reassuringly.

The next part is familiar. Cold jelly, the smooth glide of the wand, mildly uncomfortable pushing against my bladder… but it’s quiet in here. So quiet. She’s not smiling anymore. I crane my neck to look at the screen, but it’s turned away. And she’s so quiet.

She pops out of the room, telling us she just needs to talk to the radiologist about something. Glen looks stricken. I feel something growing deep inside me. A dark, chilling dread. I know this feeling.

The radiologist comes back in with our tech girl. He looks like a kind man. He looks sad. He pushes the wand around on my belly a few times, then slowly puts it down. He puts a hand on my arm and looks me in the eye.

“I’m so sorry.”

I have no words that are adequate to describe the next part. I know we cried together. My belly sticky with jelly, huddled on a paper sheet in a dark closet, we held on to each other until the numbness set in. I’m pretty sure we called Shannon, and our parents, and some friends from church. We called our obstetrician and made our way to the hospital. It was a surreal blur.

We were officially 20 weeks and 1 day. I’ve never been so thankful for the passage of a few days. It meant the difference between delivering our child in the ER and having labour induced in the maternity ward. It’s the difference between stillborn and miscarriage. It’s semantics. I would have grieved no less 2 days before. I would have needed no less support then either. But I was glad for every sliver of validation, no matter how meaningless.

It sounds cruel to send a couple to the maternity ward, with its cheerful staff and ebullient new parents and cries of healthy newborns ringing in the air. But this wasn’t my first stillbirth. I knew now that as much as the juxtaposition might sting, it speaks to the realness, the depth of our loss. I couldn’t bear for the rest of the world to downplay or minimize or try to alleviate the horror of it. I needed them to feel it with me.

I gave birth that night to an exquisitely tiny baby boy. I held my breath and hoped, that maybe it was all some terrible mistake. I built an elaborate fantasy where he not only cried, but miraculously survived being born so early. I never believed it, but I wanted to so desperately.

It’s not all nightmare. There are moments of peace. Moments when God speaks to a heart ripped open with despair. Moments when we felt loved. Moments when we felt joy and wonder at this tiny, perfectly formed little boy. He fit into the palm of my hand. His feet were the smallest I’d ever seen. Each little hand the width of my finger. He was beautiful.

The hospital staff made a plaster cast of Simon's hand and foot. It's one of my most precious possessions.

The hospital staff made a plaster cast of Simon’s hand and foot. It’s one of my most precious possessions.

We named him Simon Matthew, after Glen’s brother. We held him and sang to him and said goodbye. We knew all the things we were supposed to do this time. We didn’t even read the pile of cheaply printed brochures they had given us. We took pictures. We made memories. We arranged to have him cremated and buried his ashes under the waterfall in the woods near our home. We had a small memorial service and sang “Blessed Be the Name of the Lord” through our tears. Although we’d only lived here a few months, we leaned into the care of our new friends and neighbours. We did everything right.

I thought I’d be good at this by now. Having blundered my way through the grieving process before. Having mentored many others along the same path. Having read everything I could on the subject. I thought I’d be an expert.

But there’s no such thing. Each grief is entirely unique. This one knocked me on my ass. I’ve never completely recovered.

Simon,

Today is your 10th birthday. Our family visited your waterfall. I asked God to give you a hug for me. Whatever heaven is like, existence outside of time and all those questions, I believe he does things like that. I believe you’re there with your brother and your Great Grandparents and my Auntie Omi. I believe I’ll see you again and hold you and be your Mom the way I’ve always wanted. I miss you. I’ll never stop missing you. But I’m glad you came along and surprised us all the same.

I love you. Happy Birthday.

Mom

7 Comments   |  tags: , , , , , , , | posted in grief

September 12, 2013

Nine Years Old

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

5504996471Dear 9-Year-Old,

I’ve always railed against my children growing older. But none more than you. You may be a big sister and a school kid and a joke-teller and a rider of three-wheeled bikes… but you are still my baby.

You’ve gotten so tall lately. Objectively, I know that’s not true, since you aren’t even on the growth chart for your age and only hit 5th percentile on the Down Syndrome version. But each night when you climb into my lap and we sing our made-just-for-you-that-moment lullaby, you are all lanky arms and legs. When you dance with arms akimbo, they seem to stretch so far and so wide. When you “stir” the salad for dinner, you don’t even need a stool anymore. You are still my baby, but you are getting big.

Not just physically either. You are becoming more independent. You like to play on your own in your room, then tell us the story about your latest pretend, or that dream you had last night. You occasionally tidy up without being asked. You prefer to read at school with your teachers and bask in the familiar routine of listening to Mommy at home, but you’ve begun to interject a word here and there when we read Caps For Sale and Dr. Suess. When we can bribe you to read a book on your own, it is always a masterpiece in my ears – especially your silly favourite, No, David, where each page brings a new gale of uproarious laughter.

You are someone who loves to laugh. What your jokes may lack in intelligibility you more than make up for in sheer enthusiasm. I may not understand every word of the build up, but when you shout “MEATBALL!” then crumple into a fit of giggles… I can’t help but join in.

You are a gentle soul, the first of my children to pet me when I’m sick and reassure me when I’m sad. No matter how spitting mad you might get (literally spitting over and over again), it doesn’t occur to you to hurt someone. You are sensitive and have a great capacity for kindness. You are the cheerleader of the entire world – you say “Good job!” to everyone: the lady who waited on our table, the man painting the walls at school, your sister for opening the door… every classmate for every accomplishment. You offer applause at every turn. We clap a lot at our house.

In a world of pretenders, you live without masks or defenses. This isn’t always socially acceptable, but it’s often refreshing. We don’t wonder how you feel or what you want.

You are easy to love. Not always easy to parent, with your iron will and refusal to be rushed through life. But effortlessly and entirely loveable!

I don’t care if you are nine-year-old or ninety, you are still my baby.

I love you!

Happy Birthday!

Mom

And now, from Daddy…

Dear B,

How can my baby girl be 9 already? It hardly seems possible. And yet I can hardly deny it. Wherever I look, I see signs that you are growing up.

This was a year when some things that you’ve been working very hard on for a very long time really started to snap into place for you. You’re a stubborn little girl, and that comes with some challenges to be sure, but it also comes with a tenacious drive to accomplish whatever you set your mind to.

We were so excited when you brought a book home from school and read it to us for the very first time. Your favourite teacher, “Ms. Smelling” spent time with you every day at school, helping you learn how to read. We were amazed at how quickly you learned, and the proud beam on your face as you read to us showed that you knew just how big an accomplishment it was.

And then there’s potty training. We’ve been working on that for six years, and sometimes it seems like it’s never going to end! But this summer, you made up your mind: this is going to happen! We’re not done yet, but we can see that day coming… and when it comes, boy are we going to celebrate!

And that’s what’s wonderful about being your daddy. You celebrate harder than anyone I know, putting your whole body into it: singing, dancing, laughing, jumping. You are absolutely infectious; the grumpiest person in the world can’t help but smile when you’re excited. And you make your daddy so proud when you belt out Airborne songs at the top of your lungs as we drive around in the blue van!

I think Ms. Smelling said it best. She wrote a paper about you, and she expressed how we all feel about B:

“You have been and will continue to be a source of joy, humour, inspiration, and learning. You have been the greatest gift and teacher I have ever known; unknowingly you have led me to a greater understanding of what is truly important in life.”

There’s nothing more important in my life than being your daddy. I love you Becca. Happy birthday!

Love,
Daddy

2 Comments   |  tags: , , , , , , | posted in parenting, special needs