It’s in the Details

 

Ironically, on the way home this afternoon from Boston Children’s Hospital, I spotted a license plate on a blue Beamer screaming by – “DETA1LS”.

It truly is in the details, isn’t it?

When I look at my beautiful baby girl, now five-years-old and full of life and possibilities, I see all the details.  Every time I look at her.  There is never such a thing as a glimpse of this child.

I see every new freckle that has taken up residence on the apples of her cheeks.  I see the speckles of gold and brown in her radiantly green eyes.  I see how every wisp of her thick brown hair falls across her brow.

I see every moment of pain, every scar on her chest and belly.  I see every instance in which that belly rumbled in hunger and jiggled in laughter.

I see the pride in her smile for every word she managed to form and was understood.  I see every wrinkle of her nose for every frustration when she was not heard.

I see ears that beckon me to nibble on them because of the way they stick out and pop right into my mouth when I hold her close.  I see little rosebud lips that worked for years to coordinate something so simple as blowing out a candle.  I see her little overlapping piggie toes that she sticks in my nose after a tubby so that I can tickle them and pretend to gobble them up.

And I see her one perfectly unique pinkie finger with a perfect hooked little nail that tells the world she is one of a kind.  And she is mine.

Today we took a drive up to Boston Children’s to see a Plastics guru we shall call “Doctor T” who has made a career of changing little lives with the most delicate precision of nips and stitches.  I knew of him by way of my sister who lost a fight with a lawn tractor a few years ago.  This was the surgeon who specializes in microsurgery and helped to save her leg.  While taking my sister to a follow-up visit way back then, she stopped to show me a side room in the office.  It was filled with shelves of castings of congenital hand and foot deformities that Doctor T and his partner had transformed.  It was amazing.  I felt an instant ease there.  Like it was meant to be.  We left the appointment knowing that I would someday be back to see Doctor T with my baby girl.

We’ve had our share of ‘specialists’ for RM.  Most have been total blessings that not only have cared for her, but have shaped our lives as a family.  They have sat with us through heavy times and listened to us and our opinions on how to best care for RM.  Today was a familiar visit, and we knew right away that we were in the right place with the right person to care for RM.

We talked about how her pinkie causes her pain when its nail is easily caught on things and tears.  We chatted about her adorable overlapping piggies and hammertoes.  We talked about options, about the importance of certain things that could wait until a time when RM could cognitively participate in the decision-making process.  There was never a moment of urgency or fear.  It all felt right.  There was no rush, the conversation was never hurried.  The details were all there.

We decided to take the most minimally-invasive approach to start.  We will let Doctor T remove a portion of nail-bed that appears to be nonfunctional and he will replace with a skin graft.  So tiny, but could make all the difference.  You know, details.  He heard us speak of the importance of keeping as much of who she is intact.

He listened to our concerns about recovery.  How would he cast her hand so that she couldn’t ruin his hard work?  You know, we’re talking about autism here.  It can’t be that easy.  “No problem,” he said.  He will cast all four fingers together so she cannot disturb the graft.  See?  Details.

When I asked where he thought he’d take the skin graft from he initially replied with the standard groin/hip area.  But then he stopped mid-sentence and said, “Well, wait – she has scars from previous surgeries, right?”  Well, duh, lots.  Pick one.  Aflutter with this whole process of actually talking about details it seemed my brain finally caught up to the conversation and I blurted out, “Her feeding tube site!  There’s a bunch of extra skin there, it’s like a second belly button!”

With a quick nod and a peek of RM’s belly it was settled.  “Oh yeah… That’s perfect right there.  And I can take what I need for the finger and leave just a nice little straight line.  You’ll barely see it.”

You see, her pinkie is something she was born with and to us it matters.  We love it.  It’s special.  But that ‘second belly button’ was something done to her and we have no problem watching it disappear.

And there you have it.  Those crazy little details.

RM gets a pain-free pinkie that is still uniquely her own and a chance at wearing a bikini some day.

Over the SGM’s cold, lifeless body.

But you know…. details.

 

[Ed note: Please don’t forget to lend your support to the Caring for Military Kids with Autism Act (CMKAA) HR 2288 –> HERE <–.  And remember, you can harass your Congressperson several times a day at no cost to you ;0)]

About Rachel Kenyon

Rachel Kenyon is an Aspie, Advocate and single mom of two beautiful babes - The Boy (11) and RM (8). The Boy is a Legomaniac and RM is a kick-ass diva with Autism and 4q Deletion Syndrome. View all posts by Rachel Kenyon

7 responses to “It’s in the Details

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