“Tell us about your hopes and dreams for life… what would a fulfilling life look like for you?”
I had to look at the question on the form twice to make sure I wasn’t dreaming, the answer for me alone would be laughable but for Bethany – in her words? The answer would be an easy one although I doubt anyone would take the answer seriously. For her a fulfilling life could be summed up the words “Plate” or “Potato”; toss in a nice set of boobs to pinch and life would be complete. Now I know why my wife handed me the form to fill out. Silver tongue in hand, I began to give it some thought. The form was an application for "residential consideration", for us it represented pinned hopes of a future in which we would have less burden in day-to-day care for Bethany. For Bethany, it represented the second biggest shift in her life, a life without Sherry and I as the primary, care-givers.
How would Bethany answer the question, even more troublesome was how would I answer as her proxy? Bethany lives “in the moment”; there is no future state, no past tense – only “now”. There’s no future consequence for past behavior and no dreams or preparations for future events. She doesn’t dream of material possessions, geographies not visited, events not experienced. In fact the only thing that she expects, is to be with someone who will give her undivided attention. Sometimes, not even that matters.
She has no interest in videos, movies, television, telephone, iPods, iTunes, trends in fashion or anything that a 16-year-old girl would covet with indemnity. Her test for the acceptability of any object is merely the feel of it when tapped against her teeth in a rapid staccato. “Tap-tap-tap-tap-tap, Looks like she found the chip-clip” I’d say to my wife. “No, I’m pretty sure those were cars keys”, she’d respond. “There was no metallic clinking – gotta be the chip-clip or maybe her rattle is broken again. You wanna’ go check this time?” Plastic rattles, chip-clips, French fries. The question again rolls through my mind; “Dreams and a fulfilling life”…I shake my head and look around the corner to see what she’s actually latched onto.
Painfully reliving our dream may be a good story to share – holding each other in the American Girl doll store in Chicago, tears running down our cheeks, all slowly seeping back into the cracks in our broken hearts. Unfulfilled dream number one. All those Asian Barbie dolls that silently collect dust in a closet somewhere, the doll-house that sold in the garage sale, the cute dresses that never came out of the closet, the pink toy doll bed from 1964 – a surviving relic from Sherry’s past. Too precious to give up, it gets quietly slipped up into the garage. One day when we’re dead and gone, someone will likely find it and toss it. Bethany has no interest in it, no need for it – it’s not a dream, desire, or need and it certainly not in the “now”. Those should be the stories I write down on the form. Perhaps If I write our story from Bethany’s perspective, it’ll touch the heart of the committee asking the question in such a way…
The second question on the form was one of personal perspective; “How do you describe yourself”?
It would be accurate (but rude) to outline her as a constellation of confused diagnostic labels. To say “obsessive compulsive” is like saying “Europe”, you’ll never know the powerful smell of French bread by saying “Europe” – the same is true for B., you’ll never understand the fear of a lost ball, of a light left on downstairs, the importance of a certain shirt or the distain for electric ice makers and the hours spent accommodating these fixations by saying the words “obsessive-compulsive”.
She’s largely blind but seems to take great delight in the ambiguity and confusion that it offers. It’s a counter-intuitive position but one she seems quite comfortable with. The less she sees, the happier she becomes. I can barely understand the construct let alone describe the outcome but with her, but it seems to be a truth. Do I describe this particular joy on the form as “takes delight in darkness”? It seems that she comes to life in the darkest hours of the night – put her to bed in the dark and she’ll party up there till 1am, laughing and screaming, kicking and carrying on like it’s the tail end of a rock concert. We lay in bed a floor below and wonder where the energy comes from; speechless, both of us.
The last question is an interesting one – it deals with “Strengths”. I don’t know if being able to steal a heart is a strength or not, but we’re gonna’ give her the benefit of the doubt. Bethany has the consummate skill of being able to steal your heart with little more than a toothy grin, and two big cheeks that cause her eyes to disappear when she bundles them up into a smile. Like a car salesman, she sucks you into her trust with a single, gentle kiss on the cheek or by laying her head on your shoulder just long enough that she can hear your heartbeat relax – POW! She knows she’s got you!
All these indelible qualities of Bethany make her such a unique personality; those features however, defy classical categorization. With B., the sum of the parts, the whole, none of them equal anything recognizable, measureable or predictable. Her life is fulfilled and unfortunately, it is we who remain outside the boundaries of classification. We chase dreams in the future while she lives hers in the moment. We describe ourselves by what we’ve done; she describes herself as a tone poem, the music of a classic fairy tale – both outside of and within reach of, the minds and hearts of her readers.