Friday, August 21, 2015

Shedding Dragon Skin

Today began with a slow morning.  Without any place I had to be, I took Rachel to our local pool for a late summer swim as she has been asking everyday since school began.  We were the first to arrive and my enthusiasm to join her in the water was tamped down by algae growing in the deep end.  Ick.  I'm no germophobe, but pool algae is the kiss of summer death for me.  We mostly splashed and snacked and I pulled out the mother's ace in the hole: lunch at Chick-Fil-A. 

 We had a fine lunch and I enjoyed giving her my full attention.  As I sat looking around me, I noticed a young man, late twenties to thirties, who worked the dining room, cleaning trays and greeting guests.  This man, A., shook hands with many regulars, and quietly and efficiently went about his work.  I noticed A. not for his hard work, but for his disability, as I know others did.  A. has Down's Syndrome, with the distinct facial features and stature of individuals with that syndrome.  

A. cannot hide his vulnerabilities.  They are right there on his face, in plain sight for compassion or indifference.

I do not know A. at all.  I've not interacted with him.  I know nothing of his story, his triumphs and falls. I couldn't tell you his "functioning level"  or IQ.

I can tell you this-- from my casual observation, he is a valuable member of his community.  He does his job with excellence, and makes people feel welcome.

And I, of course, connected the dots to my own son and my own dreams and wondering for his life.

I know my J very well.  I know his numbers and present levels and progress.  I know his interests and quirks and food preferences.  I know who he loves and and likes.

I know how he stands out in a group of typical peers.

And I know this-- special ed. or regular, college or vocational training, independent living or assisted or with me--

He will have value.  He will have a place. He will belong.

I've seen it.  

On her facebook page Mama Be Good, author Brenda Rothman writes:

"We believe in the dream of white picket fences, play dates, and athletically-gifted children who will volunteer in their spare time and attend a well-liked state school or the hallowed halls of Ivy League. And it is a dream. Some parents find out rudely and suddenly when a doctor pronounces the word "disabled." It is in that moment that many of us realize we don't know what cerebral palsy, or autism, or learning disability actually means. We realize how separate we were from the kids in special ed. We realize our own ignorance and fear about children who are different, non-typical, and dare we say it out loud, disabled. We realize we don't have a single disabled adult in our life." 8/19/15

I still fear it-- the unknowns and what-ifs.  But the elusive American dream for my son (and my other children) doesn't haunt me. It is an illusion, a facade, a projection. 

We have ordinary, real things.  Like each other.  Relationships over time-- developed in a classroom or a therapy room, a family room or a sanctuary.

 And I'll admit this:  sometimes I doubt people's sincerity, as if they take time to show kindness to J out of pity or to feel better about themselves.  That's petty and small, but a mother's heart is ruthless for her children's well being.  It doesn't have to make good sense. I choose to believe the kindness is because he is simply a neat kid.

Mostly I'm thankful for the kindness shown, no matter the motivation.  I'm not God, and I don't have to be the good intentions judge.

For J, and A.,  who do not hide behind a mask, and for me and everyone else whose dragon skin is being peeled off, bit by bit, to reveal what's inside, the peeling off is painful.  It feels raw and uncomfortable and leaves me vulnerable.

But there's the promise of Eustace and Aslan.  The promise of Jesus, really.  

Lose your life for me.  Then, you will find it.

It might not be as a dining room greeter at a company with excellent corporate and community values.

But after today, I'd be mighty proud if it did.

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