Showing posts with label Apraxia. Show all posts
Showing posts with label Apraxia. Show all posts

Sunday, February 08, 2015

One night in December

For almost everyone in attendance, it would have been nothing very remarkable.  One child, just one of thirty or so on the stage, singing, ringing his bell, and making hand motions with all the other kids as they sang along to "O Come All Ye Faithful" during the Christmas program at the county Christian school.

But remarkable, it was.  To those who had seen him the year before stand with his back to the crowd the entire time, not moving or saying a word.  And the year before that had watched him put his hands over his face and cast his head downward, again not uttering a sound.

There I sat, in the audience, more teary-eyed than any parent or grandparent who was there.  Because I knew how far he had come.  I had been through the days of not being able to understand what he was saying even though he was trying so hard.

To watch a child struggle, to speak or to do any other seemingly simple task, melts away whatever hardness might be inside you.  It puts life in perspective in a way only a few things can.

I thought of his mother.  She who repeatedly told doctors something wasn't right until they finally listened.  She who still spends hours on the phone fighting with the insurance company as they try to deny coverage of his therapy.  And she who makes the 90-minute round-trip three times a week so that he can receive what she believes is the best-available help for his apraxia.

I looked over at her, sitting in the next section, her 5-foot-1 frame having to strain to see over the people in front of her.  She had a smile as wide as the building.  It's the smile she always has when she is trying not to cry.

She had struggled with whether to put him in public school, eventually deciding against it.  She started him here in hopes that he would get more attention.  It was a hard decision.  We were public school kids.  But if there were still any doubt, this night was absolute validation she had made the right choice. 

A little later we listened as one of the older kids, a young man who had overcome autism, stood in front of the audience and read the Christmas story.

When the program ended, I high-fived my nephew and told him how proud I was of him.  He seemed rather unimpressed by it all.  I thought of his great aunt, a wonderful and kind southern woman he would never really get a chance to know, lying in rest twenty minutes away.

A couple of days before, she had slipped from this realm of sickness and dying.  Her visitation was the same night of his program.

His uncle and her nephew, I managed to make it to both.

Life was beautiful. And sad.

"Some of it's magic / Some of it's tragic / But I had a good life all the way..."

Sunday, April 07, 2013

"Last week, on The Bible..."

With the Bible ended and our brackets busted, our thoughts turn to the swelling spring -- flowers, showers, and the new season of Mad Men.  A nation takes solace in the fact that evil Duke has been defeated for another year.

For some reason, hearing the phrase, "Last week, on the Bible..." never failed to crack me up.  At the same time, the promo for the final installment that said, "The Bible ends tonight," kind of freaked me out a little.  Let's just say I was more thankful than usual to see the sun rise that next morning.

I wonder if the History Channel has considered the limitless possibilities for Biblical reality-show spinoffs.  Real Concubines Of Gomorrah.  Joshua & Caleb Take Canaan.  Pimp My Chariot.   So You Think You Can Prophesy?  Cash Camel.  Survivor: The Flood.  Lamech Is 147 & Single.  Mesopotamia's Got Talent.

Sticking with our odd Jewish/Christian religious theme, I went to see Jerry Seinfeld... on Good Friday.  I received the tickets as a birthday gift, and was pretty excited to see "An Evening With Jerry Seinfeld" printed on them.  However, that was a little misleading.  Turns out it's an evening with Jerry Seinfeld and like three thousand other people.

Our seats were in row Y of the balcony, which meant there was only one row in the entire arena farther from the stage than us.  So it was more like An Evening With Nosebleeds... and this mysterious Jerry Seinfeld voice booming from somewhere in the vast darkness below.

Nonetheless, it was good to relax for a solid ninety minutes and watch someone else trying to be funny for a change.  The opening act, Tom Papa, provided non-stop laughs.  I actually thought he upstaged Seinfeld a little.  Also disappointed that there was no "If anyone has any can't miss ideas for new sitcoms, please meet Jerry backstage at this time" announcement.  So I didn't get to pitch my brilliant show idea, which I cannot share with you at this time for nebulous reasons.

After the show, we ate at Chic-fil-A.  They were piping some religious-sounding music through the speakers.  Not that there's anything wrong with that.

Continuing with our new "joke" theme, I did have one April Fools' Joke (Is it fools, fools', or fool's?) played on me -- by Nephew Bone.  He called me Monday.

"Hey Uncle Bone, it's snowing!"

"It's snowing at your house?"

"It's snowing at everybody's house, Uncle Bone!"

"Oh no!  Are we gonna build a snowman?"

"Ha ha, April Fools!"

Can't believe I fell for that one.  (He says, knowing he'd fall for it a thousand times more.)  Plus, Nephew Bone has verbal apraxia, so the words are a struggle and a lot of them aren't clear, which increases the heart-melt a hundredfold.

I got him a toy golf set for Easter.  I figure it's never too early to gauge his interest/try to nudge him forcefully down the path I have chosen for him.  Work with me people, I'm trying to groom a future golf partner here.

He was way more interested in hiding the eggs this year than hunting them.  Of course, then he runs around the yard directing you and pointing to where he hid the next egg. Which actually wouldn't be a bad quality to have in a golf partner. "Hey, Uncle Bone.  Your ball's over here.  In this briar patch.  Behind this hundred-year-old oak tree.  Again."

Once in awhile you have an epiphanic moment where you realize life is not at all how and what you thought it might be. It's not necessarily worse or better, just different.  Far different.

I had such a moment when I found myself squatting and pretending to "lay" a turquoise-colored Easter egg in an attempt to make a 4-year-old laugh.  In all my forethought, scheming and dreaming, I somehow never saw that coming.

Life: The biggest April Fools' Joke of all.

"I'm April's fool / I play by her rules / She treats me any old way she wants to..."