In a recent stress dream, I sat in an airport coffee shop knowing I was supposed to board a plane, but with no recollection of when the it was going to take off or from which gate. Despite being surrounded by information counters and departure displays, I just sat and sat, paralyzed and ashamed, with no sense that there was anything I could do.
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.
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.
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.
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.