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Amanda Downey
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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 and she is in the last grade in her school, so I am harde...
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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 criticism, and well meaning comments that are made can m...
Just another Sunday morning...
Just another Sunday morning...
onedayatatime-am.blogspot.com
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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 this year. I hover between wanting to share with the worl...
SMS Awareness Day - 2017
SMS Awareness Day - 2017
onedayatatime-am.blogspot.com
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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 daughter had Smith-Magenis
Syndrome.   This year was a ye...
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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. It's not easy, but we're surviving, and even thriving at...
Happy Easter
Happy Easter
onedayatatime-am.blogspot.com
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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 husband and my best friend had posted two excellent articles...
A good moment
A good moment
onedayatatime-am.blogspot.com
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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 to as an infant, but has begun to irk me more and more ...
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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 minutes of leaving the car. I'm tired of having to carry my ...
Tired
Tired
onedayatatime-am.blogspot.com
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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 love the sound of moving water. It doesn't matter what it ...
Storm coming
Storm coming
onedayatatime-am.blogspot.com
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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 peace. I'm listening to birds singing as I type. If I c...
Respite
Respite
onedayatatime-am.blogspot.com
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