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

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Why I’m Not Writing

Crash Jewelry on the floor Bang Drawers rattled open Boom Books scattered Independent Mobility is exhausting. Laundry, dishes, chaos everywhere. Drawing my circle a little tighter these days. College tours and first days of work for Liam. Driving and destruction for Aidan Lack of schedule, motivation and parenting skills for me. I’m on the couch waiting for summer school to begin.    

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This Day

I’m sitting in the most perfect New England weather. The sun is shining and there is a slight breeze. I don’t sit outside very much because I’m so easily distracted by…life. The wash is in the machine. The bills have been paid. The tough phone call to our social service agency has been made. Maybe someday I’ll write a post about how un-employable I am as a result of sporadic care for Aidan. Someday. Just...

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Summer Lovin’

I have two incredible ways for you to love your neighbor this summer, your neighbor being anyone in the world. These are really unique opportunities that will not only change a life (eventually Aidan’s I hope) but will also engage you in a new way. As a bonus, your teenager who spends too much time at the computer can do these as well. 1. Donate your voice. Weird but easy. Aidan’s talker has given him...

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The Weird Wonky Elephant

Let’s talk about the elephant that arrived in the mail a few months ago. I got a letter from Aidan’s school congratulating him for making High Honors, one of three students to do so. I laughed a little and asked his teacher about it. Aidan has an IEP (individual education plan) which basically means that he has very specific goals and just has to show that he’s making progress with them. He’s not graded in the...

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Meet Audrey: The Face of Light

There has been a lot going on in Aidan’s genetic world. First, we’ve met eleven other families with the same diagnosis. Second, we’ve managed to gain the attention of several researchers. Third, and this part may be my favorite, some of us PURa moms are getting together in a few weeks to meet each other in real life. I can’t wait to tell you more. For now, go like our Friends of PURa Syndrome Facebook...

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See-Saws and Sand Tables

Making friends is an important part of childhood, but talking about it makes me feel a little off balance, like being on a see-saw and wondering when I’ll hit bottom. Having a child with a disability can be somewhat isolating even when jumping up and down and yelling, “inclusion for all!!” Think about it – where do kids meet up? At play dates arranged by moms at the same stage in life, at music classes...

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Sweet Spots and Sunsets

This is me hard at work…honestly. All of that sitting and sunning and swimming is not really how I do vacation. When Aidan was still young and floppy and fragile, Garreth and I went to Quebec City together. It was less of a vacation and more of an escape. I remember go, see, do. Keep moving. Don’t think of your other life, the one full of doctors and therapists and tummy time and tubes. For...

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Did You Really Just Say That?

I wish I could say this post was just for people who’ve never travelled to Disability World. A little piece of education for them. But honestly, I’ve been here for 14 years and I can still be shocked at the total lack of common sense. I’ve written before about billing departments and insurance companies. It’s all a little bit bonkers. In case you think it’s just my bad luck, I’d like to leave you with...

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Tall Tales and Tank Tops

Every now and again we play Caption This on my Facebook page which you should totally go like so you can play too.  First place for telling the truth goes to Jenni: I was almost eaten by a gator and his mouth was this big! First place for excellent tie-in to my blog goes to Kristen: I am a synapse. A synapse is who I am! First place for making me sounds smart goes to...

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Don’t Call My Son Cute

Aidan is cute. He’s adorable, really. Those beautiful blue eyes make everyone stop and take notice. And he still has soft kissable cheeks. His size is misleading. I get that. He looks like an nine year old and nine year olds can be cute. But not teenagers. Aidan is 14 now, a tween, a teen? I’m not even sure anymore, but not a little boy. Let me make all kinds of rules and immediately break...