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


Yale in Review – Part 1

As you probably know, Aidan and I had the opportunity to share our story with some Yale Pediatric Nursing students. It was a great experience. Aidan scored some swag. and showed off his ipad and super walking skills and all around wonderfulness. (I know I’m biased, but seriously, doesn’t he make such a handsome professor?) Our biggest take home point was that Aidan is more than his diagnosis. He’s a singer, and a Pease Greeter,...


Little Tidbits

A special shout out to Aidan’s fan club at Yale. Here’s an interesting perspective on some medical issues. First, genetic testing. What a hot button topic laden with emotion. I believe every prospective parent or pregnant woman should have access to accurate information. I also believe they should all have a safe place to voice their concerns. That being said, no one lives life without challenges of some sorts. This blog was birthed out of...


Thankful Thursday

It’s the end of September and guess what’s old news….we have an accessible van for Aidan!!! We raised $40K in 7 months. Here’s what you may not have noticed – September was our goal month to get the van and we got it in February. I’m still amazed that it was possible and still very much humbled and grateful that our community came together to make this happen. Our van really has been a life...


Big Fat Lie

1. Aidan was told he would live a normal life plugged into a ventilator only at night. (True) That was one of the early diagnoses. It didn’t stick but it sure left me to wonder about doctors’ very skewed view of normal. 2. Babies get so much from eating orally, other than nutrition. They obviously get stronger. They also get used to different tastes and textures. The more time you have a g-tube the less...


Two More Truths and a Lie

An example of some things we were told in Aidan’s first year of life by various members of his medical team: 1. Aidan would live a normal life while being plugged into a ventilator at night. 2. Because Aidan had a g-tube, he would never be a champion eater. Food would always be an issue. 3. Aidan would never walk. Can you see the big fat lie? Better luck this time!


IEP Meetings

IEP meetings can be like going to the dentist. I remember the first few years of Aidan’s schooling, I’d lose sleep for at least a week before a meeting. After his first meeting I was nauseous for a few days. These were all under the best of circumstances. I felt prepared and generally liked Aidan’s team. There’s just something about an inherent us/them mentality and being outnumbered that left me a ball of anxiety. Here...


Thankful Thursday

Today I’m thankful for opinions, well, maybe just Aidan’s opinion. I’ve been asking him each morning to choose a shirt to wear. I hold two up for him and he’ll reach for one. This was the third day he reached for the shirt on the left. So, I switched sides and asked again, “Do you really want to wear the blue shirt?” I swear I got a look. “Really, Mom?” He chose the blue shirt...


And the Answer Is….

For my 30th birthday my amazing husband surprised me with a getaway weekend. He did all the planning and even packed up the boys to stay with their Nana. We arrived at our B+B and shortly got a phone call from my mom. Aidan had pulled out his g-tube. Not a problem. I knew I could talk her through putting in the new one, you know, the spare that I always have on hand. My...


Two Truths and a Lie

That’s right, I’m getting ready for college, Yale, in fact. Yesterday I worked on my presentation for the Yale nursing students and decided we’re playing Two Truths and a Lie (G-rated classroom appropriate version) and yes there will be prizes! Don’t you wish you went to Yale? So you won’t actually get a prize for answering on my blog but you’ll get the intrinsic satisfaction of knowing how smart you are, or something like that....


Magic Muffins

When my brother Ross was little, (Happy Birthday Ross Poots) he and my dad used to have friday morning dates at a local donut shop. I imagine they talked about how to take stuff apart and put stuff together. Fathers and sons are supposed to have those moments together for purposeful relationship building and to pass on to the next generation what you will. Yada Yada Yada. Anyway, Dad and Ross would buy a magic...