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 …
I easily forget that my son is getting older, mostly because he’s physically small but also because he needs help with things that kids his age have figured out how to do long ago. But that doesn’t mean he’s a child in every way.
I ran a 10 km road race this weekend, and I finished dead last. And it was great.
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.
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).
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.
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.
So last night my 10-year-old child and I were sitting at the kitchen table filling out back-to-school paperwork, and they mentioned that they had had a dream in which their older brother didn’t have Coffin-Lowry Syndrome. They proceeded to tell me of the zany antics that can only ensue in a dream world. I’ve had a couple of dreams too in which he is neurotypical and I have woken up feeling shaken.
I have been riding with no hands when it comes to special needs parenting for some time now, ever since our huge move has had my attention elsewhere–getting a job, a place to live, a dog, converting recipes into metrics and Celsius. With so much to take in, I took my hands off the handlebars, trusting that the people around me would keep us safe (a correct hunch), that my mom detectors would sound even if 99% of me was caught up with figuring out the recycling rules of my new homeland, that I would take the handlebars again when it was time.
We have been in crisis. And I am good at crisis. As a parent of a child with special needs, I’d have to say I feel comfortable there. After years of wishing to be done with the drama of crisis, recognizing a pang of nostalgia for it makes me stop and think.