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.
It’s not Groundhog’s Day here in Sweden but that won’t stop our family from the annual viewing of the Bill Murray classic. Tonight we’ll snuggle on the sofa while Bill awakens to Sonny and Cher for about, according to the DVD comments, 1000 years or so, reliving the same day until he gets it right. When I first saw the movie years ago, it was merely a funny, clever film with wry Murray wit and all that Andy MacDowell hair. Over the years it has become a story of engagement.
I think sometimes we special needs parents are getting the wrong message. We’re told that if we want to be effective, we should be the mama bear — fierce and protective. Or the victim, sad and pleading. The course leader’s parable reminded me that I have other options, ones that actually might be more effective than anger or sadness.
On one side is you — with your skills, your strengths, your resilience, your smarts, your capacity. On the other side is what life throws at you — work, relationship needs, illness, a bad economy, whatever. The distance (actual or perceived) between what you can do and what life needs you to do is the Gap.
It struck me that being in the fun house was so like my experience of parenting a child with special needs, especially in a new country. Looking from the outside in, the recognizable elements are there: the kids, a school, a pediatrician, the toys, the hopes, the dreams. But take a step in and the floor starts to shake.
We arrived in Sweden to festive pomp and circumstance after disembarking our ship in England and hopping a short flight to Stockholm. Flags, streamers, champagne, hugs, dinner in the garden, even the cherry tree blooming on cue for our arrival…it was a reception in the truest sense of the word.
When my husband and I moved our family from Boston to Stockholm last week, we decided to kick the whole she-bang up a notch by getting ourselves to Europe by boat on the Queen Mary 2. A week-long break between the stress of saying good-bye and hello appealed to us both. As the granddaughter of immigrants who had made their way to Ellis Island decades ago by sea, there was the romantic symmetry of returning to Europe on a boat for me as well.