My Shitake Mushroom

“What do you want to be for Halloween?” I said looking at my ten year old with her long, brown curls draping over her shoulders.

“A shitake mushroom,” she said without an inch of hesitation.

My shoulders tensed like they did each time my youngest child's tenacity bubbled up. I looked over at her deep brown eyes. “Okay. What’s your second choice?”

“A portabello mushroom,” she said in a sing-songy tone. And off she went to make patterns with the Qwirkle tiles on the coffee table by the couch.

Chuckling I thought, I’m in trouble. Lucky for me I asked her two months before Halloween. I've learned over the years that extra time, when it comes to this child, can come in handy.

The day after Halloween, when our daughter was three months shy of turning two, a neurologist from her clinic called to tell us that the MRI results showed she had a rare neurological condition: Agenesis of the Corpus Callosum.

Even though we witnessed her miss every developmental milestone, and we had been taking her to specialists for over a year, having someone tell me that the communication center of my child’s brain never developed was something different. It was as if the neurologist pushed an eject button that sent me orbiting toward outer space.

Even before we had the underlying diagnosis, our daughter became a regular at private physical and occupational therapy twice a week, and was enrolled in the zero to three program through the public schools. A teacher, along with therapists, worked with her in our home. Our child was not talking, walking or using her hands.

Multiple times a week, we visited specialists trying to uncover what we did not yet know. Each of them searched for what was wrong that had to be fixed. They all noted, verbally and in writing, the long list of detailed deficits that they observed.

Each Halloween after the diagnosis, our family started to measure her successes. From not walking to walking at three, from nonverbal to speaking at four and a half years, from needing a stroller to running so fast down the street we could not catch up to her, from being ambivalent about any costume to informing me she wanted to be a Shitake mushroom.

I jotted down how much progress she made from the year before. These were my measurements. No one mentioned deficits that needed repair. Halloween never meant anything to me until now. This one night a year became a milestone marker. We looked forward to and planned for it months in advance.

The schools' charge is to prove why a child needs services. They have to show what is problematic. Doctors look at what is wrong to understand why and to offer solutions. But I, her mother, get to focus on what is right, her potential and her successes.

On Halloween each year I celebrate her growth.

When my daughter said to me she wanted to be a Shitake mushroom, I smiled thinking how far she has come. I had no idea how I was going to make this particular costume with fabric and a glue gun, but I would figure it out.

I packed away the Shitake mushroom hat this week, and realized Thanksgiving is upon us. What a great time to stop, take pause and recognize the growth in our children and in ourselves.

And be thankful. Very, very thankful.

Conversations

• Do you have a way to measure success that focuses on potential? 

• Is there a time of the year or a specific holiday that makes sense for you?

Stories

• Share a personal story that demonstrates growth from one year to the next.

If you'd like to comment, please leave your remarks below. Not sure how to make a comment? Blogger Help has a nice article on how to do it.

Subscribe to the feed and get future articles delivered to your feed reader.