Friday, March 15, 2013

So it ended

Not an eye ball has been seen.
Like the cruel clockwork of EB.
What was perfect is now some sort of suffering.
It's noon, I'm home for lunch and Raquel is crying with the careful eye of nurse.
Last night had an hour with child in discomfort and a pillow insulating the higher pitch shreaks from running down my spine, while Ren sat patiently with Raqu on the couch for our perceived cocktail on Raquel's pain or suffering needs to take effect.

Now we discuss what's next.
Eyes?
Sight unseen blister due to rough housing with Coco & I before bed last night?

That's the hard part.
To play or not to play?
Have Raquel take part and risk injury over fun and sweaty monster rough housing or be safe and tell her to go in the corner and wait till we're done having fun?

Of course as I spend many summer evenings tracking down Olympic cyclists times down our mountain trails, (don't thank Strava - but not up the trails) the general regard for doom aparently rarely crosses my mind.
Raquel joins in and we have this, grumpy child cuddled in a ball for hours on end.
I don't think I'm to blame, but a dressing change and some pain meds will tell.

The ever lasting joy of EB.

1 comment:

  1. EB sucks!

    Praying for your sweet girl and I love that you let her play and be a part of everything! I hope we become less scared as time goes on and let Anton do more. I mean he does a lot but like I said we are still scared.

    Vanessa

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