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

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Food for Thought

Food for Thought – July 13, 2015 The Disabilitini Now, I’m all for disability pride. I like to think of myself as a bit of an advocate, not just for my son but for the rights of people with disabilities in general. I want to end the stigma. I want to change the conversation. I want to bridge the gap between them and us. But also, I want a mother flipping cocktail. 5 Ways Able-Bodied People Can...

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The Making of a Man

I’m parenting in a different stage right now. Aidan will always require lots of hands on care and attention. But for the moment I’m focused on the making of a man. I won’t say that Liam has been set aside all these years as we’ve been so engrossed with Aidan’s care, because I don’t believe he has been. Suddenly, though, the time of Liam’s leaving feels too close. Sure, I’ve still got two years but...

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Meeting Glennon

So I met Glennon from Momastery last week with my sister. We went to Boston to hear her speak. She was fabulous – animated, funny, passionate, honest. She said her sister is the boss of her. Me too. She said people were confused by the name of her blog. Me too. She said when she boldy started telling the truth about her life (anxiety, pain, addiction), people said me too. Me too (with different specifics). Glennon...

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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...