To all the folks who’ve reached out over the years to ask about the care map I drew back in 2012, I wanted to share my podcast conversation with healthcare improvement pioneer Paul Batalden in his podcast The Power of Co-Production. Paul is such a thoughtful conversation partner; having the chance to talk about where …
Tag Archives: special needs parenting
On frost and sunflowers
As the dog and I walked down the street early this morning, I heard the scraping of a car windshield, heralding this season’s first frost. I’m reminded that it’s the autumnal equinox today, and I brace myself for the coming shorter days with a sense of dread by pulling my sweater tighter around me.
Making change or being changed?
As the dog and I walked down the street early this morning, I heard the scraping of a car windshield, heralding this season’s first frost. I’m reminded that it’s the autumnal equinox today, and I brace myself for the coming shorter days with a sense of dread by pulling my sweater tighter around me.
To start a movement, tell a story
Increasingly, activists and change agents are using their own personal stories as a way to awaken leadership in others. Stories speak the language of emotion, the language of the heart. They not only teach us how to act, but also inspire us with the courage to act. Our stories help us translate our values into action by accessing our emotions.
Beginnings
After four years of wonderful work within a large healthcare agency, I feel called to take a smaller, quieter path. I’m not exactly clear where this new path is going and I’m giving it time to unfold. It’s a bit awkward when someone asks what I’ll be doing next and I have to struggle to find an answer; I’m ok with that.
The tired tropes of special needs parenting
If you listen to or read pop culture reviews, you’ve probably stumbled upon a conversation about tropes, which are basically plot devices, themes or recurring character types. When disability gets represented in life and culture, plenty of tired tropes surface.
Passages
I opened a book last week and a bookmark slipped out onto the floor. It was a freebie from a favorite bookstore from my old life, back when I lived on the other side of the ocean. I loved that bookstore, with its coffee counter and author events and the way it always had exactly the book I needed even when it didn’t have the book I wanted.
The new year as a threshold
Every moment offers a new beginning, but there is something special about the collective transition from one calendar year to the next.
It is and always has been a struggle for me not to get too caught up in new beginnings like this, to not be spellbound in the illusion that simply resolving to change will bring change, or that most of the mundane changes I desire, will bring lasting happiness.
Getting off on the wrong foot
“Louis, this feels like the beginning of a beautiful friendship” says Humphry Bogart as Rick Blaine in Casablanca. I don’t recall what Louis had said or done to prompt Bogie’s remark, but it certainly wasn’t whatever happened to me today when my son’s new doctor’s office called. Walking to the bus on my way home from work, …
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.