“I don’t know how, but somewhere dreams come true. And I don’t know
where, but there will be a place for you. And every time you look that way, I
would lay down my life for you. I don’t know why I know these things, but I do.”—Shawn
Colvin, “I Don’t Know Why”
The morning’s blue chill wakes me just ahead of the alarm. Despite
my inclination towards the genial bent of the spirited lark, as opposed to the moon-eyed
night owl, I want to shut my eyes to the rising light edging its way into the
space between the window and the shades. Some days my son, Cliff is the alarm, engaging
in self-talk from his bedroom on the second floor with no care for the volume
of his voice, and no consideration that perhaps the rest of us are still asleep.
I have no illusions about sleeping in.
This is home: sounds
of the morning coming from the bedroom down the hall, the rasp of words spoken
but unintelligible and raspberry noises on the air. I pull on whatever clothes
are immediately accessible and go downstairs to make his breakfast and the lunch
he takes to work. It’s important to him to find the food already on the table
when he arrives in the kitchen, so I make like a butler for the master of the
house, setting his place with the egg sandwich, the plate of fruit, the low-cal
breakfast cookie, o j and vitamins. Then I head upstairs to help him dress and
wash up. I won’t allow him to leave the house unless he’s clean-shaven and un-mussed.
When he was little, I used to dress him in stylish Gap clothes and not allow
him to get dirty. It serves me right that at the age of 27, he often eschews
cutlery and treats his shirt collar, his sleeves and his jeans like a napkin. Call
it the delayed fuck you attitude of adolescence. It makes me proud and angry
all at the same time.
Breakfast done, making our way out to the van waiting to
bring him to work can be a test of my patience. His quirks include touching
doorknobs and doorjambs, peering down the basement stairs and closing the three
open doors along the hallway. When he gets to the garage, the tall shoe rack
and the railing post on the landing must be touched and held onto before
descending the five steps down. I don’t consider this particularly odd
behavior; who doesn’t have odd habits? You and I are simply better skilled at
concealment. “Cliff, let go and come on.” Step. Hold. Step. “Let go, honey. The bus is
waiting”. We link arms and sing, “the bus, the bus, the bus is here.”
He lets go.
These two words--Let
go—have been causing havoc with the caretaker groove I have cultivated
since I myself was 27 years old. Cliff and I are as connected as gills on a
fish. Letting go is as unimaginable and fantastical an idea as freefalling from
space and landing in a New Mexico desert on one’s feet. Someone else can go
ahead and try it, but I prefer to sit that one out.
Each weekday I do let him go for precisely seven hours
during which his life becomes about meaningful work, social interaction with
men and women who live similar lives, and going about his business with no help
from me. I trust people not related to him for those seven hours because I know
they are fond of him and his quirks, his boyish charm, his willingness to go
along with their plans for the day. They are good people, so I let him go. But
the idea of him actually living apart
from me is very much fraught with the kind of high anxiety usually reserved for
combat situations and air traffic controllers. Naturally, I try to avoid thinking
about the inevitable, but how long can I realistically hang down from the
window ledge by my fingertips before the wind gusts force me off?
And then the question becomes “Should I?” Everyone has an
opinion about this. Friends and people “in the field” of disability work, postulate
that Cliff should have his own life just like any young man. “Fine”, I say, “but
why now?” I know a mom who arranged for her twenty-four-year-old son to live in
a group home. Jonathan attempted to run
away three times, trying to find his way back to his mother. I'd give almost anything to have that story erased from my brain.
My original plan to not ever die or become infirm is looking
less and less realistic just based on the slight nuisance I call “reality”. To
that end, I have started the process of figuring it all out. There’s no reason
to hurry so I’m on a five-year plan; I will be sixty by then and much closer to
the random-pains-for-no-reason-years.
So in the spirit of positive thinking (as opposed to the magical variety) I
attended a conference recently entitled, “Building a Home” ; it seemed like the
responsible thing to do. Here’s what I learned: No one actually knows anything
about “building a home” for individuals like my son, including the presenters. This
is the first obstacle to my five-year-plan. You would think someone by now would
have created a clearinghouse, a centrally located set of beautifully-appointed brick
offices manned by knowledgeable people in career clothes who tell you exactly
what to do first, second, third and so forth. Instead, I came away feeling
confused by the jargon of the day, terms and acronyms thrown out in the jumbled
and bewildering fashion reminiscent of Lewis Carroll's “Twas brillig, and the
slithy toves/Did gyre and gimble in the wabe/…”
I do believe my husband and I are on our own, as we reject
the current established norm of group homes and Adult Foster Care. In my fantasy, Cliff will live with a couple
of his buddies and an endlessly patient,
fun-loving, song-singing live-in care
provider schooled in egg sandwich-making, in a charming Victorian in the center of town,
with his own bedroom, private bath, and a finished basement for singing as loudly
as he likes.
Home should be the place where warmth and contentment grows,
and a feeling of lively interaction predominates when he enters. No
institutional white walls, dentist office furniture, or wall art from the
starving artist sale at the Holiday Inn. No medicinal smells, sterile bathrooms
with hold bars in the shower stall, or flat, oatmeal- colored Berber carpeting.
These are my terms.
I know, I know. Ultimately it isn’t about me at all. At the
core of my reluctance to let him go lies a Peter Pan wish to never grow up or
grow old, to keep singing the bus song. But time, in all her irritating insistence,
is unstoppable. Where he will live and
with whom and how I will find him his place in the world is what I wrestle with
every day. The years ahead will come as quickly as the years behind seem to have
gone. When did he grow up? When did I start growing older? Does every mother
feel as I do, like the ocean is at my back and the waves come with frightening constancy,
forceful and unbidden?
I’ve been hoping the answers will come to me from shining
light bulbs above my head, and opportunities will present themselves. I’ll slap
my forehead and say, “Of course! Why didn’t I think of that before?”
It’s time for me to
get a better grip on that window ledge, and hold on long enough to find the
center where practicality and creative thinking, soul-searching and jargon can
meet like careful friends, swirling on a breeze of raspberry sounds to get down
to the business of planning for my son’s future.
Here’s the thing: if Cliff wants to go, it will make all the
difference. If he is okay with it, I will be okay with it. Five years from now,
maybe the skyfall will feel more like floating on a gentle current of warm air,
with all the safety of a harness and the beauty of my billowy parachute. Maybe
I can think about that trip to Europe I’ve always wanted to take. Or maybe I’ll
just sleep in.
