Friday, August 26, 2011

Oh right, EB!

I've been very good at putting things out of mind and getting on with task at hand.
After my few day break of the on going difficulties of raising and keeping a baby with serious issues happy and content I get my dose of reality in my first evening back.
The dressing change was excellent, Patricia (nurse) did a perfect job in doing Monday's so that Thursday's went without glitch or peep. Thankfully Dammit Janet and her #2 child was in for help so Ren could disappear for a few moments should it have gone sideways.
Afterwards I decided to take my girls for a seawall walk in WV.  On the way down Raquel kept putting her toy in her mouth.  I told Cordelia to watch her and not let her do it and when she did stick something in her mouth that she tell me.
"Dad, she's got it in her mouth!"  I quickly look in rear view mirror to see Cordelia yank it out.
Noooooo!! I exclaim.  Within seconds I peak back to see Raquel's bloody smile.  Blood lining her lips and eight front teeth.
It was only a quick walk so I didn't bring the "GO" bag to have the stuff to clean her up properly.  In the following moments the blood was gone and transferred to her silks around her hand.
Nice.
BLOODY hand for our walk.  Better I guess then looking like a vampire.  This way it just looks like she gave her sister a good pop for good measure.  Something of course I would have done to my brother back in the day.
Proudly walking in the setting sun with my girls along the promenade we get the usual looky loos who would want a glance at the baby.  With Cordelia it was always "how gorgeous!".
Hmm.  With Raquel it's a bit different.  Depending on day or especially lighting conditions we'll get the gamut of comments.
In that light all her blotchy patches of healing and healed soars were evident as well as a few new smaller ones.  We'd get the smile till they got a good look then  
silence.
Skin, beauty and how deep?
A few times Raquel would even do a wave with her bloody mitt as if to say hello.
giggle giggle.
Sending off a possibly uncomfortable few moments of explanation or the EB awareness conversation.
Regardless, it was a nice walk.
Raquel loved the dogs running around and looking at all the funny faces.  Hopefully she won't get my sense of peoples thoughts. Cordelia stopping at every blackberry bush to fill her face as I yelled out 'pick only the ones above your shoulder!!!!'
Then the 2am scream fest for what I have no idea.
Baby being baby?
Or did it have to do with the moment I could hear Raquel choking gagging from down the hall as Renata was about to attempt a small feed?
Thus, is our life.

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