Who Just Is

"Can you believe that next year I'll be fifteen?" Elias says to just about everyone we meet.

And honestly I can't. 

Fifteen is only three years away from eighteen. From legal adulthood for our once micro-preemie who now weighs over a hundred pounds and stands only one inch shorter than me.

We discussed the whole concept of "18" at our Plan of Care meeting yesterday, a meeting that included a discussion of Medicaid cuts and fewer day-hab hours, or time when Elias gets to be out in the community with staff trained to work on his many goals.

Before he turns 18 we will need to fill out guardianship paperwork, since he will not be "flying the coop" and setting off on his own. At least not in the traditional way. Not off to college or to join the service or to start a career.

Not road-tripping across the country, with two carloads of friends as I did when I graduated from high school at age 17, landing in Tahoe for a pre-college summer of part-time work and full-time fun.

Elias could only name three friends at the meeting, peers from the resource room.

"Do you see them out of school or just in school?" his Care Coordinator asked.

"In school," he replied.

And yet three is more than none.

And he called them by name, instead of saying, "I don't know," as his eyes dart down to his calloused hands with nails chewed too low.

Elias's other constant comment to people we run into across town is: "Look at this!" 

In his hand he holds a badge that he pulls from the pocket off his orange coat and holds out for all to see. 

It reads: "Sea Life Center Volunteer".

For about a month now, he's been helping to recycle cans and bottles on Wednesdays and shredding office paper on Fridays, with support from his day-hab staff.

He initiated this activity, came home one day and said: "Mom, now that I'm fourteen I can volunteer at the Sea Life Center!"

I tried to picture him speaking clearly enough so visitors could understand him as he discussed the habits of Puffins or the weight of a Sea Lion, and asked, "Yeah, what would you do?"

"Help with recycling," he replied. "Because I already do that at school."

God damn, you continue to surprise me kid!

And so I emailed the Volunteer Coordinator, and she replied with an open mind, and we filled out the paperwork, and Elias's volunteer recycling career expanded from school to the community.

Who knows where this could lead?

At times I get so bogged down by all his diagnoses; I feel like a bad Mom because I am not an expert in all of them--cerebral palsy, autism, visual impairment, ADHD, incontinence-- with my fingers on the pulse of the latest therapies, adaptive equipment, resources.

There is so much more I could do, my critic tells me-- and instead of acting as a motivator, this voice makes me want to crack open another beer. Or hibernate for a few years.

And then another voice whispers: Let him be, follow his lead, let go, rise...

And so I conjure up Maya Angelou, and like embers taking flight, like an eagle with outstretched wings, like a kite on a long taut string, like a mountain with nothing to prove, like my son Elias who just is...

...I rise.

(And like a true Alaskan, I duct tape my critic's mouth closed, don my Xtratuf boots, and return to the gritty work of this messy beloved life of mine.)

Comments

[Kate]

Love reading these beautiful portraits of each of your kids. Really convey so much about who they are. I love how you are able to appreciate each one in their authentic selves. Thanks for sharing!

[Christy]

Thank you Kate for reading and responding with your kind words:)