The Girl with the Sunburst Tattoo

The occupational therapist was taking Kyra’s medical history.  Again.  It’s a story I’ve told hundreds of times, to hundreds of medical professionals over the past 21 years.  In fact, I’ve told this same story more than a dozen times to professionals from this same agency.  Still, they think they need to hear it again.

As if it would change.

If only it would change.

Of course, it doesn’t change. It only gets longer.

But sometimes there's a new twist, like today, that changes even my perspective.

Today, the occupational therapist that is helping us obtain splints to prevent further joint damage to Kyra’s wrists went through the same evaluation routine: Pregnancy-Birth-Baby-Now-Blah-Blah-Blah.  I squinched my eyes into memory mode, and rattled off more statistics than the most accomplished sports pros can possibly keep in their heads.

Then, the OT surprised me.  (Which is very hard to do.)  “I’ve never seen anything like it,” she said as she gently took Kyra’s hand. “Is this a tattoo?”

Kyra grinned, and pulled her hand away from the therapist.

“That’s where her hand was burned,” I explained.  “When her wrist got stuck on the touch lamp that was beside her bed.  We were just trying to make her a little more independent, and she ended up with a skin graft, and a lot of rehab.  It happened about 10 years ago.”

About ten years ago, touch-sensitive technology was the new "wow": We were excited that Kyra would be able to use this technology to gain a bit of independence.  We put a touch lamp beside her bed, so she would be able to take control of at least part of her world: Turning her bedroom light on and off.  Unfortunately, even that tiny bit of independence was denied her when our "great idea" turned into a nightmare.

Ten years later, technological advances have exploded, and we have jumped on the bandwagon with both feet.  Finally, with her eye gaze communication device, Kyra is gaining some of the independence we've hoped for.  By just looking at her computer screen, she can command her environment in all sorts of ways: Telling us her thoughts, turning the channel on the TV, watching YouTube videos, staying in touch with her sisters.  Turning her light on and off safely.

“That burn must have been so painful: But now it’s so beautiful,” the therapist said.  “Like, somebody would get that tattoo on purpose.  It’s a perfect sunburst.”

That’s my Kyra.  Making a sunburst out of a burn.   

Peace and hope, 

Sara