Tag Archives: special needs

No Single Story

There is no single story which speaks the truth of Down Syndrome.

Certainly not the outdated pessimism of some medical professionals who see it as a life not worth living. And the more than 80% of terrified parents who terminate their pregnancy as a result. Those dark sketches of burden and heartbreak bear little resemblance to the beautiful children I know.

There is no truth behind the many, many comments of “I don’t know how you do it” and it’s close cousin “I could never.” Because trust me, you could and you would. That’s what parenting is, Down Syndrome or not: doing what you have to, the best you can on most days, and not so great on others. But kids are resilient. Kids with Down Syndrome especially so. They have to be.

I hate to admit it, but the truth does not lie in the air-brushed snapshots of perpetual happiness either. The cuteness, that’s very real. And studies have shown that families who include a member with Down Syndrome experience significant amounts of joy and fulfillment. But these children are not angels come down to earth, they are human beings. Amazing and inspiring often, but also grumpy and quirky and stubborn and everything in between.

I wouldn’t have it any other way. My daughter is an individual not a stereotype. She is her own unique person.

She faces a larger set of challenges and obstacles than most people, and she has to work harder than everyone else. Some people say stubborn like it’s a bad thing, but that iron will has given her a toughness that impresses nurses and doctors, and is in the process of kicking cancer’s butt. She would very much like to control the entire universe (she is her mother’s daughter after all), but often finds herself at the mercy of a world that moves too quickly and unpredictably. She doesn’t take that lying down, let me tell you. She is indomitable. She has a silly sense of humour and loves to tease us with the absurd. She is gentle and sweet and undeniably charming. She insists on being called by her name, and nothing else. She refuses to be labelled in any way, not even endearments or compliments – not honey, or sweetheart, or smart, or brave, or a girl… “I’m just B” she says. She is her own category.

“And though she be but little,
she is fierce!”
~Shakespeare

This is her story, and ours. Down Syndrome plays a part, and for that we celebrate World Down Syndrome Day along with so many other wonderful individuals and their families. This is no anguished outcry or demand for a cure from bitter parents, this is a celebration. Because our lives are all the more worth living since our daughter, and Down Syndrome, became a part of our story.

There is no single story which speaks the truth of Down Syndrome, there are millions.

So here’s us, celebrating 3-21-2015 for all those with Trisomy 21, also known as Down Syndrome.

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The Lunch Outing

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.

 

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.


10 Lessons My Daughter Is Teaching Me

Ten years seems like a long time.

A long time to be alive and learning and growing and discovering new things – and that’s just us. You’ve had a lot going on too!

In the past ten years you’ve brought us to life in a new way and taught us what matters most and nurtured our best selves and made every day an adventure.

Usually, in these birthday letters, I talk about all the things you kids have learned and are learning that year. I encourage you in some areas of struggle and try to share a vision of the amazing person you can/are to become. This year I’m going to do it differently. This year I want to talk about all the things you’ve taught me and how you’ve made me a better person.

Because ten years is a milestone, not just for you, but for all of us. As I look back and as I look forward, the one truth that stands out, bold and CAPITALIZED, indisputably important, is this:

I AM BETTER BECAUSE I HAVE YOU!

  1. I laugh more. You are unrestrained in your enjoyment of life. When something strikes you as funny, you howl. When the music moves you, you dance with abandon. When you feel happy, you sing – anytime, anywhere. The best part is, a little bit of this seems to be rubbing off on me. You are teaching us to Carpe the heck out of each Diem.
  2. I am forced to slow down. This isn’t an easy lesson for me. In a world of rushing and pushing and trying to squeeze more in all the time, you insist on half speed. Whenever I say “hurry, hurry” you indignantly reply “no! slow, slow!” and deliberately downshift to Barely-Moving. At the time, this does not feel like a wonderful, life affirming lesson, nor do I calmly accept the defiance. BUT, I’ve learned to avoid rushing as much as we can. I’ve learned to see it as the enemy. I’ve learned that we need margins in our life, and have stopped apologizing for insisting on them. Quiet time each afternoon, early bedtimes, no to activities, yes to help… we’re not perfect, but we’re learning.
  3. I am showered with affection. I am not, by nature, a hugger. This does not exempt me from your extremely tactile love language. Turns out, all that snuggling is good for the soul. Not to mention the several times daily declaration: “Hey, hey Mom… I love you!” It’s a rare and beautiful thing to receive such unfettered, unfiltered, unlimited affection.
  4. I have become part of an exclusive, and usually encouraging, community. There is something that happens when I see another person with Down Syndrome, they are an instant friend (much like you and the entire world on a good day). There is a sense of kinship we share with all other families who live with special needs, even those we might not normally click with. There is an ever expanding team of professionals who are assigned to support us – behind the official designations and job descriptions I’ve found some of the most wonderful human beings and even, some true friends. Sure these relationships can be bumpy, the stakes feel high and sometimes we disagree and debate and shake our heads at each other. But we are united in our unshakeable belief that our lives are better for having you.
  5. I am becoming more patient. I was a strict parent before you, one with extremely high expectations. I don’t regret that, but I’ve had to adjust to your needs. Your life is very stressful. For a personality that craves control and predictability the world of disability is particularly trying. I can relate.
  6. I have a front row seat to the cutest show on earth. Seriously, you are the most adorable 10-year-old on the planet. Everyone agrees.
  7. I celebrate small achievements in a big way. We  don’t take your success for granted. You work ten times harder than the rest. Your determination looks a lot like stubborn, even impossible some days, but ultimately it is your greatest strength.
  8. I have developed compassion. I can’t pretend that this life is easy, for you or for us. It peels away any pretense I had about my own saintliness (sorry strangers in the grocery store who assume I deserve some kind of reward for “giving birth to an angel”). The truth is, I’m selfish and shallow and silly in ways I never noticed before. Aren’t we all? And each life is harder and more complicated than an outsider could imagine. I’m learning not to judge a person based on their neediness and messiness and general dysfunction, because I understand grief and exhaustion and being overwhelmed better than I ever did before.
  9. I will never go out of style. This one feels bittersweet. I will never have an empty nest, not really. Yes, I expect you will live independently and have your own full life. But you will always need me in a way my other girls won’t. I will always have a shopping and travelling and movie companion. I will always have snuggles and giggles and silly dancing to the radio.
  10. I see past the myth of normal, the social masks and the competitive games, to what really matters. Sometimes the rest of the world seems ridiculous, stressing about grades and position, looks and social status. Health isn’t a given in our house – muscles that are strong enough to run and jump, a body that fights off illness, the ability to speak and be understood, to see and hear and feel the wind on our skin, to give and receive love… these simple pleasures trump all the superficial we build our life around.

So here we are on your birthday, but the best gift is mine. It isn’t always easy. I don’t get it right all the time. But being your Mom is a joy and a privilege. Thank you! Happy Birthday!

Love, Mom

And now, a few words from Dad…

Dear B,

Is it really a whole decade since you made your surprise appearance nearly a month ahead of schedule? It was just the first of many times which you’ve shattered all my expectations and changed my life – always in the best possible way.

This year it was your reading, which has improved spectacularly. What a treat it has been to sit down with you and have you read an entire storybook to me! I know how hard you have worked on this, and I am so proud of what you have accomplished!

Your talking is also getting so clear – not that you’ve ever had any trouble communicating exactly what you want. Just yesterday you came up to me, pointing frantically inside your open mouth. “Tongue?” I asked. Nope. “Teeth?” Nope. “What do you need, B?” With hopeful eyes, you said without hesitation: “Cheesies. Cheesies in my mouth.”

One of the big highlights for me this summer was being able to watch you in your music class – or “dance class,” as you called it – at my office. And maybe it was a dance class, because you danced your heart out each and every day, with an ear-to-ear grin all the while, and frequent waves to make sure I was paying attention. You especially loved Tommy and his drums; whenever you did stop dancing for a few minutes, you were quick to grab a bongo drum to bang on in your seat. Your energy was infectious!

Speaking of music, this has definitely been the year of Frozen. I can’t even begin to guess how many times you’ve watched that movie. But one thing that never gets old is listening to you belt out “Let it Go” at the top of your longs, dancing around our living room. I remember you seeing Elsa and Anna at the Calgary Stampede Parade. As excited as you were, all you wanted to ask them was, “Where’s Kristoph?” Hopefully he’s with them when we visit them at Disneyland after Christmas!

It’s been a strange start to the fall, with school starting late this year. For a girl who loves her routine, you’ve done very well with having an extended summer. You don’t know it yet, but school’s going to be a little different this year, as you’re going to have some new helpers. You probably won’t like that at first, but I’m sure you’ll come to love them as much as they will love you.

I love you B! Being your dad is one of the great joys of my life. Thanks for always keeping me laughing!

Happy 10th birthday!

Love, Dad


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.

have
Down Syndrome.
But I am not Down Syndrome.

iammeI 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…


Putting Myself in Her Shoes

The girlshoes

scratch.
scratch.
scratch.
Covering every little spot with pink. There’s noise buzzing beside my head… loud, annoying. I hold my marker tighter. Lean closer, closer, closer. My nose is filled with the sting of ink.
scratch.
scratch.
scratch.
Out of nowhere, a hot weight on my back. The buzzing is Louder than ever…
“itstimetogoweregonnabelateitoldyoutogositonthepottyareyouevenlisteningtomeCOMEON…”

I look up into my Mom’s eyes, wanting to show her my picture. It’s almost done. Looking back I see a stripe of white along the edge. Not right. Not right at all. Needs more pink.
scratch.
scr…

HEY! Where’s my marker?

Her face is right next to mine. Her mad face. Buzzing again. With a pink marker in her hand. MY pink marker. MINE.

“NOOOOOOOOOOOO!” Mad. This is my mad face.

The world moves under me… my chair pulled away from the table. Away from my paper. Away from the white spots I haven’t finished. Not right. Not right at all.

I reach for it.

There she is again. “It’s. TIME. to. go.”

I’m catapulted onto my feet, a big, warm hand wrapped around mine.

We’re going somewhere?
Now?
Right now?
Why didn’t anyone tell me?

So here’s us, where life moves too fast and the girl just won’t be rushed.

For those who are new to the blog, our 9-year-old is navigating Down Syndrome, a hint of OCD and, being-her-mother’s-daughter. She’s joy and charm and mischievous giggles. She’s also the reason we’re almost always late.

This is my entry for the
Wordpress Weekly Writing Challenge: Leave Your Shoes at the Door
“consider things from a different point of view…
walk a mile in someone [else]’s shoes.”

http://dailypost.wordpress.com/2014/01/27/writing-challenge-shoes/


Music to my Ears

It projects across the room, flat and forced, more like yelling than singing.

It’s a step, or two, behind the rest. A discordant echo chasing lyrics that roll off nimbler tongues with ease.

It’s one of the most beautiful sounds in my world.

We’ve had two Christmas shows already this year. At one, she sat front and centre, arms flailing in an approximation of the actions her classmates were performing. At the other, deciding she didn’t like her spot on stage she pulled up a chair and sat behind the rest of the choir.show

There have been years when the traditions of seasonal performance have stung. When she refused to sit with her class or jingle her bells. When she decided scratching her bum onstage was more urgent than saying the words we had practiced so many, many times. When she pulled her dress up over her head for the duration. And while my mouth laughed with everyone else, my heart ached to see her set apart yet again.

But this year… this year her voice rang out above all the rest. Like it has for the last two Christmases, like it does each week at church, and in the car, and lying in bed at night.

She found her voice. She unleashed her inner diva. She fell in love with the spotlight.

Now, the holiday concert is joy. Vibrating with excitement, waving madly, calling out enthusiastically to familiar faces in the crowd, body and soul pouring out in a musical offering, bowing with a flourish at the end, two thumbs up and a toothy grin in my direction. “Good job!” she says to everyone.

No talent scout has darkened our door. No voice coach has approached us with accolades. Her imperfect efforts in these little shows don’t mean much in the grand scheme of things.

In fact, the Christmas show is standard fare for most kids, most schools, most families. Everyone does it. No big deal.

But these molehills are mountains to us. We don’t take any of it for granted. Which makes it even more magical.

At the church pageant our daughter’s friend, from Special Olympics, lisped a single line into the microphone. Heavily prompted. Two words at a time. I had to choke back tears as the crowd clapped and cheered.

Next week, we have another Christmas concert. I can’t wait. Because that toneless, tuneless, guileless song is music to my ears.

So here’s us, where performance is judged purely on enthusiasm and effort. And the ability to keep one’s clothes on in public.


Disney and the Magical World of Disabilities

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!


Does Down Syndrome Need Fixing?

You are not broken, sweetheart.

At least, not in any way that really matters. Not like people who are spiteful or small-minded or utterly self-absorbed. I hope the day never comes that you suspect “special” is a code word for defective. Or that having “needs” is a shameful weakness.

There are people that think this way. Ignorant people who simply don’t understand. Cruel, stupid people who simply don’t care. Less than there once was, but still… too many people.

Part of me wants to take a swipe at anyone who suggests you need fixing. To crouch in front of you and bare my teeth and unleash my primal maternal instinct on them all. Because the possibility, the mere hint of the idea that you are less than anyone else is repugnant.

hoos-ll-family-portraits-21You are different, sweetheart.

This is the truth. You work harder than anyone else around you. So many skills and activities which other people take for granted are a real struggle. Your health has to be monitored closely as you contend with a number of medical problems and risk factors. It takes longer for your brain to process the words you hear and the memories you are trying to recall. Your best efforts don’t always make the words clear enough for us to understand. You are often frustrated and overwhelmed.

I want to fix that for you. Not because you are less; because you deserve more.

You are so precious, sweetheart.

Your sense of humor and your kindness and your stubborn will come to mind. And so many other wonderful qualities too numerous to describe here. There is no one in all the world like you. The world may look at you and see Down syndrome. I look at you and see… you.

Down syndrome is part of your story. Maybe you wouldn’t be quite so exceptional if you didn’t have all these struggles. This reality has significant challenges, but there are gifts also. One extra chromosome has not been a tragedy for you.

You are so precious, exactly the way you are, sweetheart.

So when I was asked to speak on a radio talk show this week (CBC Radio – The Current) about breakthroughs in genetic research (Researchers turn off Down syndrome genes), it was harder than I expected.

Of course when the news agencies use provocative words like “eradicate Down Syndrome” it conjures up thoughts of Nazis and final solutions, not dedicated scientists striving to make the world better for you. Of course I have reservations about safety and risk factors. Of course I hope that the professionals involved will continue to be respectful of our children’s needs, and strengths. Of course I wonder if this is yet another false hope alongside the dubious therapies and vitamin regimes often peddled to desperate families.

But after a deep breath and a closer look I realize that it is incredibly good news.

I’m thrilled about the possibilities the future might hold. Targeted therapies which ameliorate the harmful, even life-threatening effects of Trisomy 21 are more possible than ever. Research may not translate into reality for many, many years, but it isn’t overly idealistic for me to hope that early onset dementia (which affects 60% of adults with Down syndrome by age 60) will not be a problem for you. After all, they still have 52 years to figure it out.

So why the difficulty? Why a panel to express a range of opinions? What could possibly be controversial about this?

We all agreed, from Dr. Jeanne Lawrence (the head researcher who now has a HUGE fan in me), to the show’s host, to the rest of the panel, that anything which leads to longer, healthier lives for people with Down syndrome is a wonderful thing.

But it always comes back to the question:

what if we could “fix” Down Syndrome entirely?

(We can’t, by the way; the geneticist made it very clear that while the research makes the treatment of symptoms of Down syndrome a possibility EVENTUALLY, eliminating it entirely via gene therapy is extremely implausible.)

Nevertheless, this is where controversy finds the most traction. Is Down syndrome a problem to be fixed? Or is it a part of our genetic diversity to be embraced?

There was a mother on the other side of the country, and the other side of the argument presumably, who was on the air with me. We don’t disagree about much. I appreciate her viewpoint and share her enthusiasm for the unique Down syndrome culture that has emerged in recent years. It makes me happy to know that you’re a part of it.

People with Down syndrome are worth celebrating. They are a remarkable group of unique people who share a common struggle. Some lead meaningful, rewarding lives. Some don’t. Some are kind, affectionate and openhearted. Some aren’t. Some are funny. Some are serious. Some are sociable. Some are shy.

None are pitiable creatures to be patronized, nor angels to be revered. First and foremost, they are individuals who each have their own story. They are not extraordinary because they have Down syndrome, but because they overcome and thrive and contribute so much to the world. The Down syndrome community is inspiring.

But Down syndrome itself is not something I celebrate. As grateful as I am for the many positive aspects of our experience, it is a medical condition that needs treatment, just like diabetes or asthma. So when asked if I would eliminate Down syndrome if I could, my answer is yes.

I would choose this for you, sweetheart.

I am so proud of all the challenges you overcome almost daily, and of the person you’re becoming because of it. But I would bulldoze every one of those obstacles if it were in my power. Life is hard enough.

There was a time when a child with Down syndrome was considered a hopeless case, when parents were encouraged to stash them away in an institution and try again. There was a time when children with Down syndrome wasted away and died due to a number of undiagnosed medical conditions. There was a time when children with Down syndrome were not expected to learn or participate or reach any level of independence.

We’ve come a long way since then. I can only be grateful for the research that has brought us this far; not just the education and social support, but medical science also. Now minor heart defects and thyroid deficiencies and a host of other problems are detected and treated as a matter of course. Maybe someday, speech delays and low muscle tone and leukemia will be dealt with as efficiently. And maybe someday, Down syndrome itself will be little more than a passing mention in a medical history.

I want that. For you and for the children with Down syndrome who haven’t yet been born. But it was hard for me to express that, both on the radio and here in the blog. Because I don’t want you to hear me wrong.

You are not broken, sweetheart, not in any way that really matters.

You are different, sweetheart, and life may never be easy for you.

You are so precious, sweetheart, exactly the way you are.

So here’s us, grateful for what is, and grateful for what could be, just as long as it involves many, many years with our sweet girl!

hoos-ll-family-portraits-23Beautiful photos by Taliah Leigh Photography

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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.

2219056224It 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.


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.

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