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

1

Olympic Fever

I know we’re all enjoying the Olympics right now and the Paralympic Games are starting on March 7 in Sochi. The 2012 Paralympics in London generated much enthusiasm for this event. I’ve been reading and tweeting and writing to get us all ready. My friend Margaret was a volunteer at the London Olympics and was able to attend some events. I asked her to share her thoughts. First, can you tell us what events at both...

3

Genetic Testing

The grocery store clerk was full of righteous indignation on my behalf. She was asking about Aidan, and in the 15 seconds I had to give information before people in line start getting annoyed, I had to communicate that no he can’t speak and he’s obviously in a wheelchair but he’s so smart and my gosh can’t you see how dang happy he is but no he doesn’t have a specific diagnosis. And there it...

0

Food for Thought

Food For Thought January 20, 2014 Edition Dear “Daddy’ in Seat 16C – Huffington Post  For a fleeting moment I thought we might have a free seat beside us, and then you walked up and sat down with your briefcase and your important documents and I had a vision of Kate pouring her water all over your multi-million dollar contracts, or house deeds, or whatever it was you held. The moment you sat down, Kate...

5

Go.To.Bed!!

My kids have always been perfect little bedtime angels, always going to sleep without a fuss. Sometimes we read stories and or sang songs when they were little, but they didn’t beg for more or cry if they missed them. In fact, my mom likes to tell the story of when she was taking care of Liam as a baby and she tried to rock him and sing him lullabyes. He just pointed to his...

0

Say it Again

It’s my most favorite time of the year. Sure Christmas is over but now Aidan and I get to go speak to the pediatric nursing students at Yale. I believe so strongly in parents and professionals working together that I will continue to take every opportunity to help them help us. I’ll definitely tell them how important presumed competence is to me. And since they’re nurses, I’ll tell them that I’m convinced nurses saved Aidan’s life...

3

I’m in Doctor Love

I could tell you that when I walked into the hospital there was a man playing the piano for me. I could tell you there was tons of natural light everywhere. I could tell you that carpeted floors kept the noise to a minimum and gave the hospital a calming tone. I could tell you that the hallways were wide enough for Aidan to drive through and people smiled as they walked around him and...

2

Three Years Later

It was three years ago this week that Aidan was officially diagnosed with Epilepsy. He had been having seizures for two years at that point but it took us that long to realize what we were seeing. There are just so many other issues with Aidan that compete for our attention and his seizures didn’t look like anything I’d seen before. Now we are paying attention. We don’t live in fear each day. We get...

1

Food for Thought

January 6, 2013 So Much to Say – Today.com This is an article about a woman who asks people on a subway to write a poem “People have so much to say,” she says. “It turns out everyone can write. It is so touching to talk to people. We share many of the same thoughts, desires, and experiences.” ******** *******   ******** Remember, subscribers need to click through to view videos and I promise they’re worth...

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A Year in Review

As much as 2012 was the year I was ready to see gone, I’m still pinching myself and wondering if 2013 really happened. My community built an accessible addition onto our house where Aidan can wheel around safely and freely. Besides being amazed at the time, energy, effort, and money that people so generously gave, I’m still savoring every story made along the way. Aidan had major orthopedic surgery and we survived the intense recovery...

17

A Picture’s Worth

Reposting from last Christmas because it’s so darn cute and I still have mad parenting skills… It’s a scene that happened all across the world on monday night: A church service of lessons and carols to set the stage for Christmas. After an hour of hearing the familiar Bible story of the birth of Christ and soaking in words of the Peace and Joy of the season, we get to light our candles and sing...