I AM ME: A Poem for World Down Syndrome Day

Hello.
It’s me.

You can call me…
sweetheart
kiddo
sunshine

Call me…
student
equestrian
swimmer

Call me…
artist
dancer
singer

Call me friend.

I am me.

I am…
charming
stubborn
silly

I am…
affectionate
moody
kind

I am…
imaginative
exuberant
bossy

I am sweet.

I am me.

I have…
parents who adore me
sisters who tease me
a little brother who follows me around

I have…
grandparents who dote on me
teachers who are proud of me
friends of all shapes, sizes and colours

I have…
fears and dreams
favourite songs and movies
strong opinions about my own life

I have Down Syndrome.

I have
Down Syndrome.
But I am not Down Syndrome.

I am me.

So here’s my homage to the lovely “Lose the Label” campaign (@Lose_the_label). Because we are, all of us, more than our diagnoses and disabilities.

March 21 is World Down Syndrome (aka Trisomy 21) Day. You know, 3/21 for Trisomy 21… get it?

In honour of the unique and wonderful people we know, who happen to have Down Syndrome (especially the one we feed and hug and tuck into bed every night) I am posting a link to this tearjerker. I defy you to watch it and not get choked up:

Dear Future Mom…

http://www.youtube.com/watch?v=Ju-q4OnBtNU

CHRISTIE HOOS

So Here's Us

MY FAVORITE THING

It’s a nuisance. A distraction. A menace on the roads. A depressing sign of the times.

It’s also my window to the rest of the world. A handful of technological wonder in an otherwise menial and isolated day. A life, and sanity, saver.

Yes. I’m that mom. Smartphone never out of reach. The ubiquitous 5th child in my already busy brood. One more to keep track of, keep safe, keep an eye on at all times.

I’m not blind to the downsides of this strange love affair. I’ve debated each point ad nauseam, with the critic in my head. I can get downright philosophical about it.

Since humanity first harnessed the power of fire, split the atom and pioneered the worldwide web, we’ve shown an incredible capacity to use our fancy new tools for both good and evil. It’s in our nature. It’s in my nature.

This is Mommy’s security blanket. The smooth contours nestled perfectly in the palm of my hand. A solid, sure weight in a tumultuous world. A little piece of control safe in my pocket, in the place of honor at the top of my purse… if all else fails, tucked under a bra strap next to my skin, inches from my heart.

In the course of a day it is my trusted advisor, personal assistant, teacher, counsellor, biographer, court jester, emergency response system, flashlight, calculator, alarm clock and immediate connection to friends, family, help, encouragement, entertainment, poetry, news and much-needed-perspective.

Sometimes, it’s a hero. When our son choked on a cookie this weekend, it was my iPhone that I turned to; typing ”foreign object aspiration” into the search engine to find out what to do now. I had weather forecasts, road conditions and a friendly GPS voice on hand to help me around heavy snowfall and road closures on the way to the ER. It kept an anxious Daddy and sisters in the loop, worried friends apprised of the situation and a miserable, scared little boy distracted with games and movie clips. I can’t imagine living through that day without it.

But, it can be overwhelming, so much information and connection hovering in the background. Reluctantly I pry my fingers off my friend from time to time. Pull the curtain. Focus on the here and now. Find silence and solitude again.

Until life and family intervene. The punishing momentum of needs and routines and our very own brand of chaos. A world within a world.

So I reach for Mommy’s best helper. 4.9 ounces of synthetic comfort for the modern woman.

This is my favorite thing.

CHRISTIE HOOS

So Here's Us

GIFT-WRAPPED COURAGE

I love getting compliments.

I hate getting compliments.

I have a complicated love-hate relationship with compliments.

Ditto for accepting help. Even help I really need from people who really love me. Especially help I really need.

I’m not sure if it’s tied to insecurity, pride, or the constant suspicion that I’m just pretending to be a well-adjusted adult. So when you say something nice to me, or when you do something nice for me, I feel guilty for being such a fraud.

Because sometimes I yell at my kids. And buy myself a bag of candy I don’t need, which I then hide and don’t share with anyone. Because sometimes I roll my eyes when I should nod my head. And I really can’t stand Christian radio, at all, but I like listening to Eminem. Because sometimes I ignore my husband and the housework and homework and exercise when I know it’ll just make everything worse. And the other day I threw something across the room when the vacuum broke, right after giving my daughter a lecture about watching her temper, and I didn’t even feel bad about it.

But sometimes, I don’t do the lazy, selfish, short-sighted thing. And I actually get it right.

While all those nice things that you’ve done and said (and I’ve had a lot lately) might be hard to swallow at first, after I’ve had time to digest awhile, they nourish my best self. They make me stronger. Strong enough to do better. Strong enough to believe that I really am the better person you see. That maybe the real me, the me God designed me to be and is helping me become, is patient and loving and wise, and okay… imperfect, but totally cool enough to pull it off anyway.

So here’s my thanks to all the encouragers in my life; sometimes I’m uncomfortable in the face of your generosity and kindness, both the words and deeds, but you make me strong and I couldn’t do without you.

CHRISTIE HOOS

So Here's Us

THE BEST WAY TO SEE NYC

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 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 Favorite 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!

But 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 Favorite 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.

CHRISTIE HOOS

So Here's Us

DAMSEL IN DISTRESS - Part 759

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 many definitely ...  my hero 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.

My 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.

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

CHRISTIE HOOS

So Here's Us

HEALTH TIPS FROM A FAILURE

The internet is full of experts. Real experts with credentials and half the alphabet in their titles. Self-proclaimed experts with more confidence and bluster than knowledge. Wily capitalists posing as experts to cash in on our every fear and imagined flaw.

I am none of these things. In fact, some days I’m the farthest thing from an expert a human being can be, and still walk upright. Sadly, the older the I get, the more apparent this becomes to me. I’m doing my best. Usually, that’s good enough, thank God (literally… insert comment about grace and prayer and all the people who pitch in along the way).

When the Daily Press Writing Challenge came out this week I immediately deleted the link. Write a blog post on “Health and Wellness.” Ya, right.

Don’t get me wrong, I’ve got some things figured out. My house is pseudo-tidy, which is impressive to anyone who’s spent more than 20 minutes with our clan. My family’s routine is the right balance between flexible and predictable. My spiritual life is meaningful. My marriage is strong. My children are wonderful.

But I wouldn’t consider myself especially healthy in a physical sense.

I am overweight, overtired and overwhelmed.

I don’t think I’m unusual in this, although I do have a special mix of kidney problems, weak immune system and chronically injured/swollen/makes-creepy-noises-when-I-move joints. I may be developing arthritis. I’ve been tested for Lupus 3 times and they won’t rule it out entirely. Two of my four children have special needs and are A LOT of work. I have very little time to myself. Or money. Also, I love food. It is my drug of choice. Also, I’m not wild about exercise, never have been, probably never will be. I can rail about how unfair this all is and make excuses ’til the cows come home, but this is the way it is. This is the body I’ve been given and I need to take care of it. Probably more than most people.

I try. I really do. I’ve always tried. And I’ve often failed. Which brings me to this expert post. You see, I do have some degree of expertise in this area after all.

I’m the What NOT To Do Expert on Health and Wellness.

I have thoroughly and exhaustively explored these habits in my own life. I can say with expert certainty, they only ever make things worse.

• Over-schedule yourself – you SHOULD be able to do it all. Anything less is weakness.
• Stay up as late as possible. Then stay up even later. Sleep is for the weakness.
• Compare yourself to others – if someone else can do it, you SHOULD be able to too.
• Don’t cater to introverted needs, that’s just selfish.
• Obsess endlessly about your weight and appearance.
• Diet.
• Measure your worth on the bathroom scale each morning and evening. Naked. With all but one toe hovering in the air.
• React accordingly. If you’ve lost weight – time to relax; you’re clearly a rock star and might as well celebrate (by eating and being lazy). If you’ve gained – time to give up; you’re destined to fail and might as well binge out on an entire box of Oreos.
• New Diet
• Realize that the latest health food craze or exercise routine or New Diet is your true Savior. Sorry, Jesus. You just don’t burn that many carbs praying.
• Put life on hold until you feel comfortable in a swimsuit/little-black-dress/jeans-that-fit-in-high-school. It’s not like your kids are growing up and you’re missing out on it all.
• Immediately assess how many people are skinnier/better dressed/prettier than you when you walk in a room (hint – EVERYONE).
• Make careful lists of all the ways you need to improve. Don’t bother with all that gratitude crap, you’re not Oprah. Guilt and self-loathing is the key.
• Take drastic steps to overhaul your life. Slow and steady is for losers and YOU DON’T HAVE ANY TIME TO WASTE!!!! Panic!!!!
• Fad Diet.
• Avoid being in pictures at all costs. Someday when you look perfect and act perfect and all the stars align… on that day you can show up in your own life.
• Everything you do is a test of personal worth. Every mistake is a failure. Every failure is absolute. It’s all or nothing, all the time. (For a really good time, apply this standard to everyone you meet. Make sure you point their failings out. People will really appreciate that.)

So here’s me, I wish I could say all these habits are behind me. They’re not. There’s a few I still fall back into from time to time. But I know them for what they are. And according to G.I. Joe, “knowing is half the battle.” I never argue with plastic soldier toys.

CHRISTIE HOOS

So Here's Us

I CAN'T WRITE THEIR STORY

 

I reached for the steaming hot ducky felt rice bag for the umpteenth time.  “Thank you, son” I weakly whimper to my fourteen year old.

Lying helpless in bed is not the Mom-image I dream of being for my boys. In spite of the storybook family image I try to write for them over the years, I finally resolve, “I can’t write their story.”

While my youngest boy perfected the ability to stitch straight seams in his 8^th grade class, I am certain he never imagined his Mom would be getting so much use from the ducky bag he made.

Up and down the stairs he runs as he takes care of me, commenting how the bag stinks now. Zapped so many times,the rice burns beneath the soft flannel duckies. I place the bag on my gut where bright red burns have created a design the doctor thinks may never go away.

It’s the middle of summer and I have spent weeks in painful misery and long hours in the E.R. I’ve experienced too many blood tests, cat scans and increased doses of ox-codeine than I care to count.

This is not the plan I envisioned for myself or family this summer. The boys and I were going to cook from Alton Brown’s cookbook together. I hoped they would teach me how to lift weights in the garage. I took for granted sitting in my lawn chair cheering on the soccer team, taking videos of their swim meets and watching them improve their stroke.

Instead, I am an absent mom and my husband has taken on the role of Mr. Mom in their summer frolics.

I certainly never planned to listen to the family laughing and splashing in the backyard or conversing around the kitchen table from the misery of my darkened bedroom. I roll over saddened, maybe even ashamed, as I watch my boys walk quietly past my door.

“Please take him out of the room” I whisper to my husband as he shuffles our boy with special needs away from his mom. I can’t bear the thought of him being confused or anxious as I groan and weep in pain.

“Feel… better…. Mommy” he carefully tells me.

This is not the perfect family story I wrote for my children. I don’t want them to have a helpless mom. They shouldn’t have to take care of me at their age. They shouldn’t have to completely care for themselves throughout the day.

I should be vibrant, energetic, interacting with them. I should.

I should be cooking for them and driving them for milkshakes.

I should.

I should.

Wrestling with pain…Wrestling with “should’s”… Wrestling with God…

He stills my heart.

He reminds me this is what I prayed for over the years. I ask the Lord to grow character in my boys, to make of them godly men. I ask Him to orchestrate opportunities for them to rely on Him in a deep and personal way.

This is their opportunity to experience disappointment, even fear and worry — then learn to lean on and listen to their Heavenly Father.  They need to witness the hand of God, to experience their own answers to prayer.

It’s what makes faith real.

On my sick-bed I relinquish to God my rights as Mom. I confess my delusions to control the fine details of my children’s lives. 

Jesus, You be their Master Teacher.

Step into my children’s lives when I cannot and should not.

A sickly Momma is not the image I create in their story. But, God is working with them to create His own story in their lives.

He weaves their joys, disappointments and life experiences for His own good pleasure.

I don’t want to get in Your way, so Lord I am letting go–again–today.

“Be assured, if you walk with Him and look to Him and expect help from Him,  He will never fail you”-George Mueller

Friends, it is almost a year since my surgery and diagnosis of Crohn’s Disease. I have taken time to get my life back in order and enjoy a pain-free summer with the family. Now it’s time to share with you what God keeps trying to teach me at my bedside.

BONNIE CHRISTENSEN

Woman Gone Wise

THE 3 YEAR OLD

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

Every year on their birthdays, Glen and I write a Birthday Letter to each of our kids. What they were like that year. What strengths and talents we see in them. What words of wisdom we have for them.

Someday, they might even appreciate the gesture.

From Mom…

I write about you ALL the time! This past year you’ve hogged the ink in my journal and the word count on my blog. 

Sometimes I wonder if I’m overdoing it. If one day, you’ll look back and shake your head at all the gushing and worrying and over-analyzing. Will I embarrass you?

A decade from now, I can practically guarantee it. But right now, you don’t know the meaning of the word. That might be the best part of being 3. Especially a 3-year-old YOU!

You are wholeheartedly and unabashedly yourself. You have no use for limits at all…

Not social conventions.

Not medical diagnoses.

Not the laws of gravity.

Not fences or child-proof locks or boundaries.

And while this tendency can be both exhausting and terrifying for us, I hope you don’t lose it entirely.

You are my exuberant, half-wild, but entirely charming boy! This year we will try to keep our wits and keep you alive, without taming you completely. If you need to run, run toward us, not away. If you need to climb, chose somewhere safe. If you need adventure, take us with you.

You are a fearless explorer in perpetual motion! Right now your most common phrase is “I GO TOO!” as you race as fast as your little legs can go toward your next adventure. You were not made for sitting still. Or staying in bed, apparently, which has caused no end of late night power struggles and overtired shenanigans. I know it’s hard for you to downshift from your high speed lifestyle, but trust me, sleep is good.

You have one of the happiest natures I’ve ever seen! While your moments of frustration are impressively loud and passionate, once the tantrum has passed, that toothy grin comes back in full force. Happy is your default setting. And you’re always eager to share the sunshine. Our Child Development Worker coined the phrase “aggressively affectionate” to describe you. Not all your friends and cousins appreciate the full-body tackle-hug the way we do, so this year we’ll work on reading people’s cues and showing love in other ways. If all else fails, know that Mommy is ALWAYS up for one of your tight-squeezy-whole-body-melting-into-it-Hugs (ALWAYS… like, this offer will not expire during the teen years or adulthood or, you know, ever).

You are an adorable chatterbox! This goes against all the boy-girl stereotypes, which shouldn’t surprise me, since I know how you feel about staying in bounds. Without a doubt, you are the most talkative child we’ve ever had. This time last year, you only had a handful of words, which you rarely used, but you’ve blown us (and your speech therapist) away with your progress lately. They call it a developmental leap. I call it, Unleashing Your Inner Announcer. Wherever we go, whatever we do, your cute little voice gives an enthusiastic running commentary.

I’m not going to lie. You keep us hopping. I’ve reached heretofore unknown regions of exhaustion this past year. But chaos has never been so fun.

I love being your Mom!

Happy Birthday 3 year old!

From Dad…

Dear S,

When I wrote your birthday letter last year, I barely knew you. We were still just figuring out this whole daddy-son thing, and you had just had your entire world turned upside down. New home. New family. New food. New routines. 

Everything – new.

One year later, we’ve all come a long way. We’ve learned to anticipate at least some of your moves, and you’ve learned how to play us to get your way sometimes too.

If I could sum up the past year in one word, it would be RUNNING. You, running, always on the move, finding ways to escape just when we thought we had you locked down, creating danger where we thought we had ensured safety. Us, running, trying to keep up with you, attempting to even get one step,ahead… occasionally.

You’ve forced us to become more creative and resourceful. If we’re not trying every strategy under the sun to keep you in your bed at night, we’re divining inventive ways to make it impossible for you to climb the deck railing and fall into the backyard two stories below.

You’ve forced us into action. For a family that loved their peace, quiet and a good book, the addition of a hyper-energetic little dude who can’t sit still for a second was quite the adjustment. It’s been good for us.

Most of all, you’ve forced us to love. Not that we didn’t love before, and not that it was against our will. But you, my son, are undeniably lovable. Sometimes we get frustrated by your latest escapade, but then you flash us that ear-to-ear grin and instantly transform our righteous anger into laughter. It’s really not fair. But it’s probably going to get you out of all kinds of trouble over the years. Because who can resist?

So here’s to you. Happy Birthday 3-year-old! And just so you know, I’ve been working on the assumption that by the time you’re four, our life will be slightly less frantic. Do you think maybe we can make that happen… please?

Love,

Daddy

CHRISTIE HOOS

So Here's Us

THE WORST FEELING IN THE WORLD

Most people who’ve spent time as the Responsible-Adult-in-Charge-of Keeping-Beloved-Child-Alive-and-Accounted-For will eventually feel this feeling, even if only for a few seconds. Of all the ups and downs of childcare, this is the worst.

Worse than answering the same question, breaking up the same fight or issuing the same clear direction for the 9,837th time. That day.

Worse than labour and delivery.

Worse than endless government paperwork.

Worse even than cleaning up after a violent stomach flu, one that explodes on both ends.

It is that moment of sheer, undiluted panic, when you turn around and your child is Gone. Out of sight. Missing.

Your entire body is on high alert. Stomach in your throat. Heart pounding. Adrenaline pumping. Your brain instantly replays every single missing child crime show you’ve ever watched. For a moment you look around and call their name and try to stay calm. Then any sense of dignity or propriety is discarded as you frantically search and come up empty. Your entire being narrows to this single task… Find. My Baby. Now.

Usually, this dissipates quickly. You turn around and there they are… right behind you. Around the corner. Under the bench. Playing with a friend. You heave a sigh of relief, chuckle at your overreaction and carry on.

But we all know, not every story has a happy ending. So the panic is genuine. Every time.

Today at soccer camp my son’s coach turned around to help the other kids. Just 30 seconds to untangle the parachute. And when she glanced up, he was gone.

One of my favourite things about our church’s soccer camp is the huge number of dedicated, enthusiastic volunteers who run it. Practically everyone between the ages of 11 and 85 pitches in, in some way or another. There are hundreds of kids at camp, but there are hundreds of leaders too. It’s well-organized and safety conscious.

Everyone in the area dropped what they were doing when S went missing. Instant search party, right in the middle of camp. With so many adults all around, it seemed amazing that anyone could slip through. How did such a little guy get past everyone unnoticed?

Just last week I met with our social worker and filled out a Needs Assessment for our boy. We put an extremely high mark for “Safety Concerns.” He is fast, agile, impulsive and has absolutely no sense of danger.

The week before that, I met with his new preschool teachers to discuss his needs for the fall. He is bright and engaging and loves a group setting, but he needs CONSTANT supervision. I must have said it a dozen times, “You can’t take your eyes off him, not even for 30 seconds.”

This is our biggest worry: That our rough and tumble explorer will come to harm. Child-proofing can only do so much. He has super-human determination and a flair for creative problem-solving.

We have child locks on the doors. A fenced and double latched yard. A puppy “backpack” that is actually a leash. A one-on-one helper for Sunday School. “Watch the boy” is on the task list for any family outing.

“CONSTANT VIGILANCE!” is our motto.

Today… I was his coach at soccer camp.

So here’s me, still a little shaken after a heart stopping 10 minutes of drama. He had ducked down in the ditch right beside us to play in the rocks. He was close by and safe all along. But it’s a 10 minutes I’ll never forget.

CHRISTIE HOOS

So Here's Us

OUR VERSION OF NORMAL

Sometimes, I forget.

As we walk hand in hand, jumping over each crack in the sidewalk, while she tugs on my arm… “Sing Mommy! Sing!”

It’s just us today. A rare Mommy-Daughter outing, with no
 siblings to compete with distractions.

This is sunshine and happy and me with my Good-Parent hat on.

This is the ordinary kind of awesome.

This is normal.

We walk up to the counter at Burger King
(Great Parent would have talked her into Subway, but Good Parent heard she wanted “Fies” and aimed to deliver)

Anyway, we put in our less-than-optimally-nutritious, but yummy order AND I notice the looks.

For a minute, I’m thrown. I look around and wonder what’s going on.

Sometimes, I forget.

People are staring at us with big grins and smile-y eyes. The kind of looks reserved for fluffy bunnies and newborn kittens. Awwwww… One lady nudges the guy next to her and nods in our direction.

And it clicks. Of course. Now I remember.

All my children are winsome – uniquely beautiful in their own way. But none of the others get this kind of attention.

It’s not a bad thing. Although it does reinforce my little diva’s belief that she is the Centre of the Universe (thank heaven for a little brother on that count).

It’s not a bad thing, but it does remind me, that OUR normal, isn’t exactly… well… normal-normal.

OUR normal involves extra appointments in far away places with all sorts of “oligists” (and an excuse for Mommy-Daughter time, with, perhaps, a detour to Burger King).

OUR normal looks tiny and slightly wobbly, but is fiercely determined to open the heavy doors “by mine-self” (while we wait, and wait… and wait).

OUR normal smells just a little bit off (which is why I carry pull-ups for 40 lbs+ in my purse at all times).

OUR normal sounds like my almost 9-year-old singing “Skinn-a-ma-rink-y Dink-y Dink” at the top of her lungs, while sticking her hand down her pants (and an admiring public who think she’s adorable for it).

OUR normal includes a lot of extras – extra work and extra people and extra effort… and extra attention wherever we go.

But,
it’s not a bad thing.

In fact,
Sometimes I forget.

I forget about Down Syndrome. I forget about the hassles and the heartbreaks and the headaches that inevitably come. And we just live our ordinary awesome, everyday plodding, bittersweet regular life.

Because, for us, this IS normal.

So here’s me,
and today I read a post by Sipping Lemonade (Dear Mom with a Prenatal Down Syndrome Diagnosis)
and I remembered the days, around age 1, when I didn’t think we’d find normal again.

And yet, here it is all day everyday. Not exactly normal-normal, but close enough.

CHRISTIE HOOS

So Here's Us