Getting off on the wrong foot
"Louis, this feels like the beginning of a beautiful friendship" says Humphry Bogart as Rick Blaine…
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April 3, 2017
Photo by Marcelo Leal
Co-production and advocacy / Improving healthcare / Leadership and growth / My toolkit / Special Needs Parenting
Parenting in a hospital, then and now
Despite the fact that my son is considered a "sick kid"—a child with multiple, chronic conditions—he actually hasn't been in the hospital for years. About a month ago, his winter cold turned into pneumonia, and we've been reacquainted with hospital life with a vengeance. Parenting a child in the hospital for the first time in nearly a decade, I can't help but notice how I've changed.
January 29, 2017
I came in last. And it was great.
I ran a 10 km road race this weekend, and I finished dead last. And it was great.
May 30, 2016
Photo by Eduard Militaru
I made it possible
There was a time when I would have made jam from wild berries I picked in the woods. That happens rarely these days. I've become a woman who, when asked the question, "Did you make this?" coyly answers "I made it possible."
April 3, 2016
Turning the page on reading
The thought that he won’t have the opportunity to experience reading leaves me sad. As a person who finds wisdom, adventure and joy in reading, coming to terms with my son’s situation has been…well, it hasn’t.
October 16, 2015
Photo by Lina Trochez
Sorry-grateful, regretful-happy
Two-plus years into life in Sweden and we are tapping into a service that didn't exist for our son, with his complex developmental disabilities, in the US. It's affectionately known in Swedish as kortis, which loosely translates as shorty, and is literally short for korttidsboende (short-term residence).
September 29, 2015
Wait for it
I was thrust out of sleep last night for a few brief seconds into total free fall, just barely this side of consciousness, unable to recall where I was, who I was, why I was. For a moment I struggled to orient myself in space and time, until I heard myself say in a calm, competent voice: "Wait for it." A total sense of trust washed over me, a sense of excitement even (who might I be?) until finally I slammed back hard into the labels and perceptions of me.
September 2, 2015
Photo by Tina Bo
Co-production and advocacy / Disability / Improving healthcare / Leadership and growth / Special Needs Parenting
In the soda aisle
Opening up my world to a wider range of difference in others has meant that there's more room for me to be me. It's easier for me to accept and even love myself and all my differences when I get the chance to know and love others for theirs. When everyone belongs, I belong too.
July 15, 2015
Photo by Jessica Newendyke
39,000 feet
I am writing this somewhere between the US and Europe, 39,000 feet above the Atlantic Ocean, the churning vastness that has been the threshold for my personal reboot many times.
May 6, 2015
Photo by Michael Voroshnin
12% of a plan
Recently I've felt the need for a more specific vision around early adulthood. The countdown to adulthood begins early for kids who need lots of time to learn and prepare. It's time to make tough choices about skills and goals. Where should he spend his time and effort? Is it important that he learns to read, or is it a better use of his time to go the store where he can practice social greetings, handling money, and navigating his neighborhood? This kind of parenting isn't for the faint-hearted.
January 19, 2015