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...
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...
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:...
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...
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...
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...
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...
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...
Saturday is Purple Day, the day to bring attention to Epilepsy. I should probably say something. Maybe come up with some facts for you, an elevator speech. But Epilepsy is so much more than numbers and figures to me. It’s names and faces. It’s friends who carry around pictures of half of their child’s brain post-surgery. It’s a girl who is taking advantage of these seizure free months to ride a sparkly pink bike. It’s kids...
Karen, Aidan’s PT, share a lot of helpful information about what to think about when making a decision to get a wheelchair. Today you can read my side of the story here ***** My son Aidan drives a wheelchair like a boss. He’s 14 years old with a rare genetic disorder and uses both a power chair and manual chair for independent mobility. But he almost didn’t. Because of me. Because it’s complicated. Because it’s emotional. Because...
Got a synaptic story you'd love to tell? I'd love to help you share it right here on FamilySynapse.com as a guest writer.
