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Low

I know it's the exhaustion talking. I KNOW it is. Tomorrow, I'll feel better again and I'll be okay. But do you know why SMS awareness is so important? Because it's so goddamned hard.Hard, actually,...

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SMS Awareness Day

Finleigh is a happy, affectionate, and energetic little 7 year old girl who is in Grade 2. She has an amazing memory and can recall the smallest detail of someone she met or something that happened...

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What stresses me out

I'm on the brink of an anxiety attack right now. Just on the edge. No real good reason why... that's just the way it goes.I took a pill. I'm calming down. I'm starting to think straight again.Every...

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Solitude

I'm sitting in my family room soaking up the quiet. It's snowing outside. I have water sounds playing full blast inside. I'm contemplating another cup of coffee (with cream). The house is empty except...

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Should vs Want

I'm sitting here at the intersection of should and want. And really, want has a fork in the road. While should and want seem like opposites and enemies - going in completely different directions - the...

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Salad

Finleigh loves to help in the kitchen. And now that she's NINE, she's becoming especially independent.Take for instance making salad the other day...I find that it is better just to let her do her...

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A Poem - by Rosa Farrington

I want to share this beautiful poem that a fellow SMS mom wrote:chromosome 17pwelcome to transparencyand the mess that is me:mistakes committed,failures admittedsometimes i'm flying high on a cloud,and...

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A Poem - by Brian Downey

When I wasn't blogging much, my husband wrote a poem about Smith-Magenis Syndrome. I thought I'd share that too. Since we're sharing poems.

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#BeingDory

The SMS community has come together, lead by the Smith-Magenis Syndrome Research Foundation to see if Ellen Degeneres might just lend her fame and goodwill to our cause.It's difficult, with such a...

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2.5 seconds of almost fame

In our small little Canadian life, being on the CBC news website for our province's capital city?  Pretty cool.You can click below to see the write up they did as a follow up to the radio interview I...

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Hot Chocolate

Here's a post from my husband. He shared it on Facebook. Just another day in our SMS life.It's time for a Smith-Magenis Syndrome snap-shot of the day. Literally! It looks like one of those funny...

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Rollercoaster

What  rollercoaster my life has become.In many ways life is easier and I feel more in control of my life.I've started my graphic design business (website still in progress) and I am deriving a great...

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This morning

We pull up to the school just as the bell is about to ring. Finleigh waves at her friends. One of the girls waves back and starts walking toward the car.I've never seen this girl. I have no idea who...

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Fort McMurray Wildfire: My Evacuation

I'm from Fort McMurray. Did you know that? Probably not. I've always been pretty quiet about where I'm from. You know... for privacy. Or something.So yes. I'm from Fort McMurray. But I'm not living...

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Fort McMurray Wildfire: The Morning After

Waking up the next morning brought a profound sense of thankfulness and disorientation. We'd been so worried about making it to the city, that I could still barely believe we'd made it.I found myself...

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Respite

The view from our living room. We are now in the Alberta Rockies. At a pretty incredible place, with views of the mountains, for HALF what we paid for that smelly dump in Edmonton. We are happy and at...

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Storm coming

I walked here today. It took me maybe 10 minutes, and that was going the long way around. 10 minutes to this little piece of paradise.I sat by the stream that fed this small lake. I love streams. I...

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Tired

I'm not just tired, I'm exhausted.I'm tired of being limited because of SMS. I'm tired of not being able to head downtown with the kids for a couple hours because someone loses her crap within 10...

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Stop talking down to me

One of the things I find the very most frustrating as a parent of a child with special needs is the way professionals talk down to me. It's bothered me since the very first thing I had to take Finleigh...

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A good moment

Some days are good.My parents took Finleigh overnight last night, so I slept in. And when I woke up I lingered in bed. Because I could.While there, I went on to social media to find that both my...

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Happy Easter

I've been relatively quiet about our SMS experience lately. We've found a fairly reasonable rhythm. We've largely accepted our lives as they are. We've found our SMS normal after 10 years of practice....

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The post that had a name, but now doesn't because it doesn't match what I wrote

I am coming out of the year from hell. This is not an exaggeration. This year, I nearly lost one of the dearest things to me in the entire world. This year was harder on me than finding out my little...

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SMS Awareness Day - 2017

Today, 11/17/2017, is SMS Awareness Day. This day was chosen because of its similarity to the genetic deletion that causes Smith-Magenis Syndrome - 17p11.2.I wasn't going to write anything about SMS...

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Just another Sunday morning...

I don't know why I keep posting about life with SMS in a public forum where people haven't had the same experiences. It lays us bare and leaves us vulnerable. It can feel uncomfortable, opens us up to...

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SnoDance!

When my daughter cries all the way home, it's a typical outing for us. When I cry all the way home, you know it's extra traumatizing.Finleigh (with Smith-Magenis Syndrome) is almost 12 years old now...

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