Friday, November 1, 2013

Long time hit.

The weeks and months breeze by.
I think at 3 years EB is old hat now.
Warn in and stable.
That's not to say coming home to notice four finger scratches and a thumb scrape at the edge of her stoma site from a care giver doing a minor bandage change doesn't get my blood boiling.
Good blister bad blister?

She's simply been exceptional.  She fights every day to be who she is and what she wants.
This of course sets her will against mine in complete turmoil and a quiet resolution is rarely accomplished.

In fact where I thought as a parent, at some future date I'd worry how the older child teaching the younger bad habits and attitude.  This has clearly not been the case.  Straight out fits and stands in fierce defiance has almost become a daily occurrence and where it was only the young one I now have to patiently wait Coco out in various occasions.
Again I thought wrong, in those quiet moments pondering a life with EB - wouldn't it be great if Raquel was strong and had all the fight to battle this shit in a fierce defiance....

Yeah then there is
Raquel notices for a second that a cuticle has started to reform which looks more like a scab than anything and she proudly shows who is present in the fleeting moments I allow her hands to be free and she gleams that she'll soon have enough nail to have Simona come and paint her nails like she does Coco's.


Whatever.  It's EB week or the end of it.  I'm not interested at the moment.  For the most part of the last four months or so we've been extremely good at forgetting it.
Of course less the moment she coughs up a chunk of esophagus or a blister balloons from the back of her knee or the moment she keeps us up for the 5th or 6th night in a row or an eye episode.

Really it's actually mostly positive right now.  She runs, she plays, she's fierce and for many moments we forget just how fragile she is.

Like the moment I had both Coco and Raqu on a swing the other night pushing them just past the point where they loose that pendulum swing and go too far and have a short jarring vertical drop as they begin the next motion.  They giggled and giggled as they flew higher and watched their sister panic at that moment yet still wanted more.  Even after Raqu's swing wobbled and she scuffed her head on the metal cable smearing a small patch of skin.
Good blister bad blister?  haha I guess it wasn't even a blister.  Just literally a skin smudge.  Like one would try to remove rubber cement from a glossy wet surface.
Instantly feeling terrible that I'd forced that wobble from pushing the limits and then attempted to stop her swing.  She quickly went from crying to 'No daddy I'm OK!! Look I'm smiling. Push me, I don't want to stop".

Crying down the hall.
Time for a rare night time 'Give Ren a break'.
Good husband Bad husband?

1 comment:

  1. EB will be featured at some point this month on the show The Doctors here is the US. Hoping for positive things to come from the exposure.