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

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Yale Nurses Score and A+

I started my presentation to the Yale Pediatric nursing students by telling them why I love nurses. It seemed like a good place to start. Nurses saved Aidan’s life and advocated for me when I couldn’t be bedside in the NICU. Then I asked the students to tell me what they noticed about Aidan (who was tooling around the classroom), what observations did they make, what words would they use to describe him? They were...

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Food for Thought

Food for Thought – January 26, 2015 Edition A Day for Becoming Someone New On this day, I will become a mother again. I will be starting at the beginning and hoping I remember how this works. I will relearn and regroup. I will see that this time is different– as each new life is different. As she is learning me and I am learning her. I am someone new. What Facebook Means to Special...

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Food for Thought

Food for Thought – January 19, 2015 Edition Please Don’t Praise Your Kid for Playing with Mine We all want to show our kids we’re proud, we want to encourage them when we see positive traits in them. But playing with a child who has a disability should not be seen as heroic or exceptional. Be proud because they see a friend first and not the disability, please help them to keep it that way....

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Food for Thought

Food for Thought – January 12, 2015 Edition She Was Once Called Retarded: Judith Scott didn’t move to San Francisco and become enrolled in her art studio until she was 43. She produced work that has received international acclaim, but did so only in the last 18 years of her life. As wonderful as the critical reviews and commentary written about her are, reading them left me wondering: What beauty have we missed by shunning...

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How Life is not a Toaster Oven

I get really annoyed when I have to replace my toaster oven. I end up with warm toast, or burnt toast, or toast toasted only on one side and I need to start over after about two years. Mostly I pay my $40 every couple of years and get over it. It should work longer but it doesn’t and it won’t break the bank to replace. If I can’t get to the store, I just...

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Dating and Giving Birth

Garreth and I skipped the dating part of our relationship. We met, wrote letters to each other, got married, had babies, then started dating. Not exactly advisable, but in our case best. We’ve had more than our fair share of bad dates. There is so much pressure to instantaneously be magical. My sweet wonderful husband is a people watcher and I’m all about connecting. See me. Stop looking around. Have a conversation. To be fair, I’m...

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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...

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Drip Drip Drop

Let’s go ahead and start the New Year with a super awkward conversation, ok? (Happy New Year, by the way) Let’s talk about drooling. I’m not a bodily functions kind of person. Liam has already puked at one track meet (it’s a runners’ thing apparently) and he knows if he does it again I will stage whisper in mock horror, “Where is that poor boy’s mother?” and then disappear out the back door. I know...

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Merry Christmas!

Things have been a little crazy around here. Does it feel that way in December for everyone? I’ve requested that we do absolutely NOTHING tonight but sit around our tree listening to John Rutter and the Cambridge Singers station on Pandora despite Liam’s claims that that’s not REAL Christmas music. I’ve been busy and there’s still so much I didn’t get to do this December, like listen to my very favorite high school performance of...

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Peace on Earth

“Peace on Earth. Goodwill to all mankind,” the ancient words proclaim. For me, this season of peace begins with songs and conversations with my neighbors from a distant land. In some ways very different from me, and in many ways the same. This past week I was privileged to host two singers from South Africa. Their chorus, Bergrivierkoor, was travelling around Boston, our Seacoast, NYC and then on to Belgium. This was their time to sing...