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.
A guest post from Elizabeth, mom of two. "Creating my map helped me reconsider my own role in my son’s care plan. I have come to see myself as the central facilitator between many separate agencies. With this awareness, I’ve been able to better communicate with my son’s practitioners and more actively embrace the myriad tasks of care management. The exercise allowed me to step back and view Charlie’s system of care with new perspective. I found comfort in all these little circles, each representing a different system working to support my son and our family."
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.
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.
Several years ago I heard a radio interview with a devout Jewish woman who had a practice of laying prostrate—face down on the ground, arms outstretched. She said she did it to remind herself that she was not in control of every little thing. She was in God’s hands. In other faiths too, the act of laying oneself down is one of humility or surrender. While I might not share the beliefs from which this tradition springs, I do appreciate the value of acknowledging that I am not always in control.
I always dreamed I’d have adventures. Why shouldn’t we now? The wonderful thing about learning new skills like advocacy, collaboration and creative problem solving is that they are global. I’m bringing them with me. Thank you to all my wonderful teachers.
Lisa Belkin at the Huffington Post did a wonderful story on me, my family and…
I just spent the morning dipping Oreos for teachers and helpers, which is apparently now my signature teacher gift. (Can something be "signature" after only two times?) It got me thinking back to last year's post, which is still completely relevant for my frame of mind today.
I'm getting used to this ambiguity. Often special needs parenting (and living in general, as you all insightfully point out) is about learning to thrive in that in-between feeling—being clear about what you want, having faith that you'll get there, but not being attached to getting there. It's like floating. I let go of the shore, on my back looking up at the sky, not getting too caught up going in any particular direction, occasionally paddling my feet to steer me in the generally right way, but not so much that I get a cramp. Just being. Just floating. Just appreciating being wet.