Jan 07, 2014 0 Share

Right But Not Perfect


Author sitting in wheelchair looking up at her daughter behind her.
Photo by Cindy Galli

I wasn’t prepared for the question.

The group of women had settled into the warm chatter of holiday updates. Tales of travel schedules, meal preparations, and family traditions punctuated the restaurant’s welcoming ambiance.

“So you have two kids on the west coast now?” one mom asked me. “Are they coming in?”

My oldest had just moved to Seattle two weeks before and I hadn’t seen my youngest in 105 days since in college he now trains through Thanksgiving with the wrestling team.

“Yes, they are coming in, as is my sister and her family from Georgia. I’m so excited to see everyone,” I babbled on. For 12 days, I would host from two to 13 people in my home. I’d been preparing for weeks. I’d shopped, cooked, frozen, meal-and-activity planned to the hour. I’d even created a loose-leaf notebook with daily agendas and menus to help order the anticipated chaos.

“And when does Madison arrive?” another mom asked.

I stopped short, with that deer-in-the-headlights feeling as I could sense the energy draining from my voice. I paused to gather the best answer, the answer another mother of a child with autism would understand. I shifted in my wheelchair and laced my hands that had started to sweat.

“Well, she doesn’t come in with the rest of the family. It’s just too much activity for her,” I said, looking down at my lap and fumbling with the napkin. “We have what I call a ‘floating holiday,’” I said, raising both hands to make imaginary quote marks in the air, “and, well, we celebrate after Christmas.”

I flashed a quick smile and cleared my throat as I continued, “She adores going to her Winter Camp so our tradition is to have Madison’s Christmas either on the way to Camp or home from Camp.” I smiled again and hoped my rationale made sense. “You know Madison has very little language, but she will say, “I want camp please.” I smiled again. “She’s been going for years.”

The mom sipped her water and nodded sympathetically as I heard the other moms at the table swap details of their hectic holiday plans and the extraordinary ways they were including their children with autism.

“We tried several times to have Madison come in from her residential placement and stay over Christmas Eve,” I said, twisting the damp napkin. “She was confused and acted out. One year she decided to use her bedroom floor as a toilet. The other kids had to clean it up before we could open presents Christmas morning. It was a mess. So was Madison,” I said, staring at my lap again. “It was difficult.”

I welcomed the waiter’s interruption of my far-too-detailed explanation. After all these years of thinking and rethinking what’s best for Madison, what’s best for my family, and what’s best for me, you’d think I’d be confident of my answer to a simple inquiry.

But I wasn’t.

Are we ever 100 percent confident we are doing the best thing for our child, that we’ve made the right decision? Perhaps we feel like we are doing the best we can. But is that answer ever good enough?

“You may make the right decision, Becky,” said a wise friend who’d witnessed my struggle first- hand with Madison’s placement. “But it may not be perfect.”

She’s 21. She’s transitioned well into her adult residential and day program. She is surrounded by people who give her good care and continue to show their steadfast love for her.

I see her regularly, often weekly, and cherish each visit she makes home, no matter how brief. Just like her siblings.

And for me, for now, that is good enough.

As I was finishing up this column, I decided to Google “perfect” and “confidence.” Here’s the quote that made me smile—and think:

Once you accept the fact that you’re not perfect, then you develop some confidence.  ~Rosalynn Carter

 I wish you all a Happy, confident, New Year!