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.
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.
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.
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.