Friday, November 29, 2013

Fragile 'this side up'

We've had such a good run.

We are constantly aware that Raquel is one step from total disaster.
That step came yesterday at her school.

Raquel has been at her Montessori class now for some time.  She's adapted well and there are a few kids whom have enjoyed her company as the teachers suggest. Finally, she's not hanging off and clinging to her buddy Ella and creating some new friends of her own.
Ha, nervous laughter... I'm reminded of a situation her teachers recounted wondering if or if not to interject with Raquel when she smudged herself between Ella and a new friend.
Elbows, knees, buts and butterfly wings.
How difficult will that become, will it get worse with age?  The jealousy and possible feelings of inadequacy.
Maybe that's just me projecting my awkward teenaged life onto a situation that has the potential to be even more awkward adding trauma laden disease.

Anyway, yesterday Raquel was at school with one of her prized nurses and simply was walking and didn't quite pick up her feet, as she tends to shuffle about anyway.  The bottom of her shoe skids and stops and face first she falls into the arm of a wooden chair.  Apparently the chair even had a coat protecting the arm.

After the screaming and a little choking session due to her rant Raquel was whisked home to tend to the missing skin and a very upset child.
I happened to be working from home and as I hear them come though the door early I go to see expecting a sniffling nose or some other random event.  Not that a portion of her face looked like a wet towel on concrete squished up in clumps as if someone was running down a hall and jumped on it to slide then left wrinkled and clumped in the corner.  It's just that the corner on Raqu's face was her nose and the shiny patches were of raw flesh and an eye nearly swollen shut also missing most of the skin in that area.

Of course I went directly to her to cuddle and give her my best, but up came the straight arm any Sunday rusher (American football reference) would covet.  I got a nose full of her silk covered palm as she blocked my hug/tackle attempt and bolted away.  It took a while to figure out she was totally fine mentally and coping with the pain well, if it existed at all in this moment.  She was simply content to play and not be crowded.

It took a while for me to figure out how this might be?  But it's really quite simple.  She didn't have a wound that would effect her movement and dexterity so why should she hang out and whine about it?

My day was shot.  I still have a very hard time coping with such a blister especially when I haven't a fking clue how to dress or manage it.  I'm a pro at anywhere else on her body as we can for the most part bandage it and keep it clean and safe.
But every time she goes to touch the one at her eyelid I get angry and scared beyond belief.  She's destined for an eye scratch and that four day nightmare, add in when this gets to 'the itch' and this could be a good long go.

But, this kid is soo tough.  Who knows.
Smiling and goofing about within the hour. She can't even see out of her left eye??

Nearly everyone that was in the war zone on this one was impacted, I even broke down talking to my uncle and had to finish the conversation.

Maybe the big problem with this, is that I know, this is really only a small smear and wound compared to many with RDEB.

That's the really scary part. 

1 comment:

  1. I read your blog occasionally, wondering how your little girl is doing and am always amazed at how she - and you - manage to cope with situations that must be so very stressful as well as painful. There aren't many words that seem adequate when seeing the damage done to her lovely little body by the everyday tumbles of a child - and how awesome your response is to it all, though it sure must take its toll some days. Your devotion is amazing, and one day hopefully she'll be able to thank you for it. Wish you didn't feel the need for the expletives tough - it devalues your obviously wonderful love for your family! Hope you have some really special moments together over the holiday season.