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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.
August 1, 2013

Does Down Syndrome Need Fixing?

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

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

July 29, 2013

18 Years of Best and Worst

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

You greeted me this morning with “By the way…” then gave me a passionate kiss.

My hands were full of dirty laundry. My heart was pounding frantically as I rushed to get us all out the door for an early morning dr’s appointment. My mind was overflowing with forms to finish and children to dress and snacks to pack. My hair was a frizzy mess. My glasses askew. My eyes still gritty with sleep.

I wasn’t my best me.

I’ll admit, my first reaction wasn’t entirely positive. I’m not a morning person. I have tunnel vision when I’m in a hurry. And I don’t like to be interrupted at the best of times. Which is why we don’t usually make out in the hallway in the middle of the morning rush.

As you grabbed me, I thought “What the…” As you leaned in, I thought “Really?!” I may have even growled under my breath.

I have so much to do. All the time. Most of it is important, or at least seems important at the time. And it never stops. Not when you get home from work. Not after “bedtime.” Not on summer holidays. I don’t get it all done. I don’t even try most days. But it’s always there, hanging over my head.

This is a particularly busy season of life. For people who once enjoyed sleeping in, lazy days and reading for hours, the past decade has been an adjustment. We’re often snappy and overwhelmed. We’re usually sticky and smelly. And we’re almost always exhausted.

We’re not our best us.

We’re parents. Parents of young children, at that. This isn’t a crisis or a problem, or even a surprise. This is just the way life goes. It’s easy to get stuck in survival mode.

But I kissed you back, in the middle of the chaos, and by the end I was smiling.

Because you are still so good at that! It wasn’t something I thought I needed or wanted right then, but, boy, was I wrong. It’s one of those important things, that doesn’t seem urgent, but probably is.

Sometimes I forget to kiss you. Or hold your hand. Or tell you the ways you are wonderful.

That just won’t do. This year, I promise to kiss you every time you leave me and every time you return. Because “being us,” even in the middle of chaos, is a habit worth pursuing. We need it more than ever these days.

18 years ago today we promised to love each other, at our best AND at our worst.

Not just when it’s expected. Or easy. Or convenient.

We have some pretty great moments – romantic moments, life-affirming-can-you-believe-how-awesome-our-family-is moments, inside joke/kindred spirit moments, laugh-until-we-cry moments… but I think it’s the not-so-easy ones that matter the most.

This is when I know you love all of me, the parts that aren’t so pretty or so fun (or so rational if I’m honest). Not in the gushy, I just-FEEL-so-loving-towards-you way… but in the I’ll-stick-around-and-won’t-just-take-your-crap-and-will-hash-it-out-and-forgive-and-apologize-and-hug-you-anyway.

And I love you that way too!

For Better or For Worse.

Happy Anniversary to the best man I know!

xoxo

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9 Comments   |  tags: , , , , , | posted in marriage

July 19, 2013

The 3 Year Old

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

6003559370Every 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

2 Comments   |  tags: , , , , , , | posted in holiday, parenting

July 16, 2013

My Son

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

Of all the things that surprise me, a whole year after our adoption, the biggest is the undiminished pride I feel when I slip the words “My Son” into a conversation.

Capital letters: MY. SON.

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And I might… possibly… slip them in more often than is strictly necessary.

Perhaps it is those years when all those typically “boy” things (which my girls disliked no matter how enlightened and gender neutral we tried to be) – the dinosaurs and matchbox cars and hockey gear and train sets – sent a little ping of grief across my heart. All the things I never got to have or do or be with the baby boys I lost.

Perhaps it is the length of time we had to wait for you. Wondering. Imagining. Making plans that ended with “… if we have a new baby by then.”

Perhaps it is the way I feel we earned you. Not like a possession or a prize… but coming home at the end of a hard fought, life changing journey.

And perhaps this is how adoption, and every other scenario where kids don’t come the easy way, is different. Most of the time, having a child requires only a small amount of planning, if any. Two of mine came without any planning at all (surprise!). They are not any less (or more) precious for it, but I took being their Mom for granted.

It just happened. It didn’t require much thought or soul searching. I never felt the need to prove it or defend it. I didn’t have to work hard to get there. Those maternal instincts came pre-assembled.

But you, My Son, we made this Mother-Son thing together. We built it ourselves.

So when I talk about you, I puff up my chest and emphasize the words: MY Son.

So here’s me, an obnoxiously proud Mama. Even more than usual (and I was already pretty obnoxious, according to the oldest kids).

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

July 11, 2013

The Worst Feeling in the World

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

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.

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

July 4, 2013

What I’m Into (June 2013)

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

June.

Second only to Christmas as the busiest time of the year. Also like December, a time in life I appreciate the most AFTER it’s over. At the time it felt like an unending whirlwind of dance rehearsing/essay writing/house guesting/field tripping/thank you noting/routine busting crazy… and you know how I feel about routine.

In retrospect, it was all good. Not in the dopey Rastafarian way, but a deep down, life affirming, good-for-me month. It’s possible I hold a liiiiiittle too tightly to that routine after all.

So, what made June amazing?

A not-totally-perfect hip hop routine

One that depressed C, my perfectionist hip hopper, but made me so proud I cried. It was awesome! And maybe parents are supposed to think that, like she says. But more likely, it was thinly veiled genius, just beginning to emerge. Not to mention ADORABLE (but don’t tell her I said that).

Beauty and the Beast, ballet style

With L as the dog, the stove, a dish and an angry townsman… amazing production all around, but the highlight is always seeing this glamorous woman-child on stage doing such beautiful, complex, graceful things that I barely recognize her.

Cousins

This was a month of cousins. My baby sister had another baby (something I’m still wrapping my brain around) – little cousin Marcos to increase the testosterone load in the fam. Beyond beautiful and way too far away.

We saw our “in town” cousins a few times and reaffirmed that my god-daughter is one of my son’s favourite people in the world. Cousins make the most convenient friends!

Speaking of, one of my favourite cousins came to stay. Growing up, she was the sister I actually wanted. Her two oldest kids came along and I’m pretty sure mine feel the same way. S was delighted to have a big boy with tons of energy to chase and wrestle all day! My city kids were also dazzled by tales of 4H and bear hunts, horrified by an attempt to bring possum road-kill home (“but it was fresh,” he said, bewildered by our reaction) AND impressed when he took on a local bully with geography riddles (see: you may be a homeschooler when…). Meanwhile, the oldest girl-cousin and C have the same symbiotic, silly-fun, picking-the-friendship-right-up-without-missing-a-beat chemistry that Janis and I have. Honestly, cousins make the best friends!

Books

One of the last books for my Children’s Lit course, Awake and Dreaming by Kit Pearson is a very contemporary type of book – messy and gritty and strangely compelling. I can’t decide to recommend it in spite of, or because of, the weird plot twists. It’s a little bit heartbreaking, but beautifully so.

After all that FUN reading for my course, I decided it was time for a Good-For-Me book. I choose something outside my usual box, a memoir about addiction and the spiritual side of recovery. Heather Kopp is one of my all-time favourite bloggers, so I figured Sober Mercies would at least be palatable. As it turns out… I couldn’t put it down. I read it in 24 hours and I’m already planning to read it again. I was completely drawn into her story and her vulnerability and her humor… and guess what, it really was Good-For-Me. Even though I’m a different brand of broken, I can definitely relate.

Blog

No time to peruse all the great blogs out there? Me neither. 3 Things for Mom has a guest poster almost every day with a Truth, a Tip and a Find. It’s a quick and easy way to sample new writers and new ideas.

App

songzaSongza is for those of us too lazy (smart and efficient) to make our own playlists. It has every style of music I could think of, categorized by mood or activity or even time of day. I love the Working/Studying (no lyrics) playlists – Classical for studying and Epic Film Scores for writing dramatic position papers. Headbands and Legwarmers: 80s Workout while I fold laundry. Coast Guard Motivational Mix while I mow the lawn (every cheesy song you can think of from Eye of the Tiger to Chariots of Fire). Mom-friendly Pop/Rock for a BBQ with the in-laws.

Video

Another thing I felt compelled to look into, since Kristen Howerton was one of the first bloggers I ever followed. Glad I did… as I’m always needing to find this fine line. When is social media a healthy diversion; when is it a wasteful distraction?

So here’s me, June survivor, and dare I say, thriver. Bring on the lazy summer days!

what I'm into

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

June 25, 2013

Romance in the Digital Age

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

It’s always been about the words for us.

love-notes-718721Since I was first allowed to get calls from “a boy” and I reassured my parents that we were totally just friends anyway and somehow the hours sped by while we talked about everything and nothing, until my Mom would pick up the downstairs line and yell up the stairs to “GET OFF THE PHONE!”

Since those early days when we wrote long rambling notes on loose-leaf paper, doodling in the margins and folding them into elaborate shapes before handing them off to each other in between classes.

Since the poetry unit in English 20, when he took a 10% penalty rather than read his poem to the whole class, but printed it up, glued it to a giant red heart and gave it to me for Valentine’s Day.

It’s the words that made us friends in the first place. It’s the words that made us laugh until it hurt and console each other and get closer than anyone had ever been before.

We built our own world with those words.

And now they come with a 140 character limit. And a data bill at the end of the month. And an audience of friends and family and people we sort-of knew in elementary school who we haven’t seen in years.

Sure, there are times when I roll my eyes and glare at the iPad. “You’re with the REAL people now” I say. Then hastily tuck my iPhone back into my pocket, lest my hypocrisy come back to bite me on the ass. It can feel like a barrier; a virtual distraction in our already busy lives. Bound to happen when both Mom and Dad are social media junkies.

But I can’t imagine our relationship without it. Especially not now, when time is at a premium and life moves at warp speed (that’s really, really fast for you non-nerds). Every day we text and tweet and message and status update and comment and like, and yes, even blog our way to intimacy.

We build our own world with those words.

If you’ve never live-tweeted a date, then maybe you won’t understand. When something goes wrong, I text him. When something tickles my funny bone, I send a picture with a caption. When he can’t be there with us, he’s the first to like it on Facebook. When I want him to know how much I appreciate him, I tell the world (here and here and here).

If it weren’t for this, we’d be ships passing in the night. Instead, we end our days on opposite ends of the couch, with our feet tangled in the middle – sending me a link to that great blog he was talking about, pulling up the funny YouTube video on Apple TV for us to watch, and commenting on each other’s pages. Real and virtual romance inextricably entwined.

I used to doodle “G+C 4ever” on my binder covers, now I download cheesy gifs and emoticons to send him. The medium has changed, but not the message.

This is what flirting looks like in the digital age.

So here’s my entry to the Weekly Writing Challenge: Love in the 21st Century. My love story predates internet dating, smart phones and Skype chats, but we’ve embraced online romance in our own way.

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6 Comments   |  tags: , , , , , | posted in marriage

June 20, 2013

Our Version of Normal

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

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

June 18, 2013

Homecoming Day

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

A year seems like a long time. 20130618-153034.jpg

I was pretty sure we’d have you ALL figured out by now. You, and adoption, and parenting a boy, and adding number 4 to the mix. Oh, and life. I had planned to have it ALL figured out by now.

It’s not like we’re completely in the dark. I’ve got a few more pearls of wisdom tucked away these days.

Things like…

Keep a Kleenex handy at all times.

A kerchief around the neck is a great “look” (and unobtrusively collects drool).

When the Kleenex runs out, use the inside of a shirt.

Child locks only work for other people.

See also: keeping things up high.

Boys climb – anything, everything, all the time.

Snot trails on a shirt are a badge of honour.

The big sister honeymoon period lasts 3-6 months depending on age and frequency of iPod-chucking-down-the-stairs-incidents.

Keep extra toothbrushes on hand for inevitable toilet/garbage/”helping” scrub the floor moments.

Thomas the Train is quite possibly the stupidest, most mind-numbingly boring children’s show. Ever.

Sesame Street never goes out of style.

A year ago today, we grabbed our brand new diaper bag, a newly installed car seat and every ounce of courage we could muster as we headed down the road to pick up our son and bring him home for good.

The past month had been an emotional whirlwind. A tentative dance toward parenthood – part courtship, part boot camp; strangely wonderful and scary, with gusts to surreal. Of all the different kinds of crazy we’ve been through, this counts as the most overwhelming time of our lives. And we had a good experience – better than most.

We fell in love with you immediately. You fell in love with your new Daddy, and you eventually tolerated me. But even that was a good sign – you were solidly attached to your foster family.

That made this day even harder, though we knew that your healthy bond with them gave you the capacity to build the same with us. But not right away. Not without time and work and a bittersweet goodbye.

I can’t put into words how much we relied on Sally (foster mom) to help us through. This wasn’t her first rodeo. She helped us navigate the handoff.

Keep it short. Keep it simple. Keep it real, but hopeful.

So with teary eyes and brave smiles they said goodbye.

With teary eyes and grateful smiles we said…

Welcome Home!

So here’s us, one year down… fifty to go. Can’t imagine life without our boy!

Memory Box

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

June 14, 2013

What My Dad Does

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

toolboxHe fixes things.

With power tools. And goofy jokes. And ice cream.

He fixes the little things – baseboards and light switches and toilet bowls. He fixes playhouse roofs and sticky doors and bookshelves. He putters and fusses and rearranges until every is running smoothly. He jumps on every squeak and creak and unnatural sound we’ve been content to overlook.

He worries about money.

Our money. His own money. The government’s money. “Bunch of crooks.”

He makes budgets and savings plans and investment suggestions. He uses coupons and goes without and is always up for a “great deal.” He buys things for us anyway. He passes me a handful of cash on his way out the door – “for groceries.”

He makes plans.

To improve. To expand. To make our life easier.

He draws it on napkins and scrap paper. Then measures and figures and makes supply lists. A new idea, or 10, carefully sketched to dimension – “just in case.”

And when you listen very close, you can hear just how much he loves us.

Because my Dad’s love is practical like that.

Thanks for everything Dad!
We love you!
Happy Father’s Day!

So here’s me, so grateful to the man who  taught me to appreciate the True Story, and the great deal, and ice cream (no matter the time of day or weather), and to look for a gentle, intelligent, silly, responsible, loving Dad for my own kids.

Today’s Five Minute Friday prompt was: LISTEN

Linking up with Lisa-Jo Baker once again!5minutefriday

It’s easy to join in, just:

  1. Check what the prompt is on the blog.
  2. Write a post in only five minutes on that topic on your blog (or in the comments if you don’t have a blog).
  3. Link over to http://lisajobaker.com/and invite friends to join in.
  4. Select the permalink to your post {so not your blog url www.lisajobaker.com but your post url http://www.lisajobaker.com/2012/07/five-minute-friday-2/ }
  5. Using the blue linky tool at the bottom of my Five Minute Friday post enter your link.
  6. It will also walk you through selecting which photo you want to show up in the linky.
  7. Your post will show up in our Five Minute Friday linky.
  8. Be sure and encourage the person who linked up before you! – See more at: http://lisajobaker.com/#sthash.f0tadvSa.dpuf

2 Comments   |  tags: , , , , , , , , | posted in holiday