Getting off on the wrong foot
"Louis, this feels like the beginning of a beautiful friendship" says Humphry Bogart as Rick Blaine…
"Louis, this feels like the beginning of a beautiful friendship" says Humphry Bogart as Rick Blaine…
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.
I ran a 10 km road race this weekend, and I finished dead last. And it was great.
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."
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.
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.
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.
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.