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

hgla-133-1 1

Growing Up

This picture was taken five minutes ago: These brothers are telling a lifetime worth of secrets. What it will be like when one walks into the room and the other always laughs, or how they’ll star in daddy’s stories as Tonto and Squanto, and how to play captain of the ship covering your brother in empty cardboard boxes. These are the stories siblings tell. Stories of family vacations, playing ball, baking sweets. Pieces of everday life. I’m...

IMG_4316 1

Summer into Fall

Today is my boys’ first day of school. I didn’t realize I wouldn’t write this summer. I suppose that’s in part because summer is for lazy days. We made it to the beach a few times and found a favorite lake to walk around. But summer is for busy days too. I made it to England and then I survived staying home when Garreth made it to England. Liam ran a big race and met a...

Heather & Aidan at YSN 144 0

Yes We Can!

Reposting for Paralympics in Rio – Also check out Paralympics.org to watch the Games! As we tune in to the Paralympics, it’s worth pondering how we speak about, think about, and perceive the athletes and people with disabilities in general. If you have spent anytime reading online, you’ll know that some people care a whole lot about what words are used to discuss disability while others care less about the words and more about the tone (that...

IMG_4223 0

London Bound

Two years ago this summer Garreth and I were preparing for Aidan’s spine surgery. There were a lot of logistics and emotions to deal with. Strangely enough, hospital visits are the sweet spot of our marriage. We function well as a team and find the ability to be tender and kind. Two days after Aidan’s spine surgery, when I came home and Garreth was on duty, I got a call from our geneticist saying she had...

Pigs Head 105 0

Tall Tales and Eyeball Fails

Occasionally on my FaceBook page we play Caption This and you show me how witty and fun you are. If you’re not in on this, you should be. Like my Facebook page and stay posted. Here’s your latest and greatest: First place for Straight Up Awesome Answer goes to Christine: I’m gonna tuck this into my prom date’s flowers. I’m sure she’ll love it. First place for Giving Me a Great Idea goes to Karen:...

IMG_8930 4

Inclusion at its best

Meet Owen, Aidan’s cousin. In our family we like to point out that Owen is a Lover not a Fighter. There is no one who loves Aidan quite the way Owen does. Owen is 13 years old and never misses an opportunity to go in for a forhead kiss with Aidan. Without training, without a degree, without it being written in a legal document, Owen includes Aidan because kids are awesome and we should learn...

SWAN_UCD_Email_Footer 1

Undiagnosed Children’s Day 2016

I threw myself a little pity party in 2011 when all the families with a diagnosis were raising awareness for their children’s syndromes. We were left out so I invented a day, Undiagnosed Children’s Day, and something wonderful happened. I discovered community. I love when that happens, a beautiful synapse. Turns out that our children are known as SWANS (Syndrome without a Name) and have organizations devoted to helping them both navigate the medical system...

Aidan Back Surgery 0150 0

Self-Care during Hospitalizations

I’ve learned a thing or two about how to survive Aidan’s hospitalizations and am writing it down to remind myself as much as to help the next person. It’s a lot, that’s for sure, but the more work I’m able to put in at the beginning, the healthier I can remain throughout. This is not a how to post. Let me start with the punch line: Figure out what you need and do THAT. Here are...

IMG_7480 2

Three Important Things

I played Christmas songs on the piano today. Yes, it’s April, but Christmas music is my go-to for relaxing music. That and Clementi Sonatinas. I teach piano but I haven’t sat down to play for pure enjoyment in a long time. A friend emailed me last week and listed 3 things she was doing for herself. Then she asked what I was doing for me. Now before we get all excited about how wise and...

IMG_4100 1

Dear IRS

Dear IRS, I just filed my taxes. I did my very best. It was a lengthy and confusing process so I’d like to give you some feedback for your non-mathy people, the ones who play fast and loose with the letter “y” sticking it recklessly onto the end of any word. The ones who preferred the word problems in math class and really wanted to insert themselves and ask, “Where are you going on this...