Thoughts on life, disability, and the power of connection.

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Being Broken

A few months ago I threw my back out. It was the kind of injury that left me screaming in pain, crying from frustration, moaning in agony, and constantly squirming looking for relief. I have never known pain like this. Every step was fire shooting through my leg. I left the couch only to use the bathroom and go to bed. Over two weeks, I was able to walk with less pain, but was still...

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A peek at inclusion

I’ve been wrestling with, fighting for, and wringing my hands over inclusion for a long time now. I have to share this one fabulous example of a great project that Aidan did in English class, dreamed up by his aide who believes in him and has high standards for his learning. Word Book What is it? Aidan chooses two or three words on his talker and his classmates write or draw in response. Here’s what...

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Hope is the fuel we run on

  Non-verbal. Non-ambulatory. Seizure disorder. Genetic mutation. Spinal fusion. All phrases used to describe my son. All true. All words I want to throw out like yesterday’s trash. My son Aidan has a rare genetic disorder and he’s pretty incredible. I know, I’m his mom and believing in him is my job…..   Read the rest over at HealthiVibe

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Boys will be awesome

This kid right here…   My heart. I thought I would be getting all weepy in this season of lasts. His last team dinner at our house, his last cross country meet, his last awards night. These events are scheduled to happen in the next few days but I’m not feeling that sense of grief I thought I would. Liam has been working hard on his college applications with little input from myself. He’s taking...

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Growing Up

This picture was taken five minutes ago: These brothers are telling a lifetime worth of secrets. What it will be like when one walks into the room and the other always laughs, or how they’ll star in daddy’s stories as Tonto and Squanto, and how to play captain of the ship covering your brother in empty cardboard boxes. These are the stories siblings tell. Stories of family vacations, playing ball, baking sweets. Pieces of everday life. I’m...

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Summer into Fall

Today is my boys’ first day of school. I didn’t realize I wouldn’t write this summer. I suppose that’s in part because summer is for lazy days. We made it to the beach a few times and found a favorite lake to walk around. But summer is for busy days too. I made it to England and then I survived staying home when Garreth made it to England. Liam ran a big race and met a...

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Yes We Can!

Reposting for Paralympics in Rio – Also check out Paralympics.org to watch the Games! As we tune in to the Paralympics, it’s worth pondering how we speak about, think about, and perceive the athletes and people with disabilities in general. If you have spent anytime reading online, you’ll know that some people care a whole lot about what words are used to discuss disability while others care less about the words and more about the tone (that...

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London Bound

Two years ago this summer Garreth and I were preparing for Aidan’s spine surgery. There were a lot of logistics and emotions to deal with. Strangely enough, hospital visits are the sweet spot of our marriage. We function well as a team and find the ability to be tender and kind. Two days after Aidan’s spine surgery, when I came home and Garreth was on duty, I got a call from our geneticist saying she had...

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Tall Tales and Eyeball Fails

Occasionally on my FaceBook page we play Caption This and you show me how witty and fun you are. If you’re not in on this, you should be. Like my Facebook page and stay posted. Here’s your latest and greatest: First place for Straight Up Awesome Answer goes to Christine: I’m gonna tuck this into my prom date’s flowers. I’m sure she’ll love it. First place for Giving Me a Great Idea goes to Karen:...

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Inclusion at its best

Meet Owen, Aidan’s cousin. In our family we like to point out that Owen is a Lover not a Fighter. There is no one who loves Aidan quite the way Owen does. Owen is 13 years old and never misses an opportunity to go in for a forhead kiss with Aidan. Without training, without a degree, without it being written in a legal document, Owen includes Aidan because kids are awesome and we should learn...