Wednesday, July 18, 2012

Sailing the seas of cheese

Nothing to report.
Just enjoying normalcy.  The general feeling of a kid with good health is about.  In fact I have the irritation of doing dressing changes.  Her wounds aren't that bad, so I don't have the overpowering requirement to open it up and get her pain and suffering under control.
Although I think the disease has worn me down.  Where no sores were the goal maybe still only a few months ago, I'm OK with a big one on a foot and somewhere else.
Oh and there are the big ones on her hands.
I can't nail it down to anything in particular, but we've for the first time since birth had some very large ones at her hands.  I am fairly sure it's due to new help not understanding how to truly care for Raquel. It's like someone held firm to her hand and smudged her skin.  The scaring of course is my greatest concern and it's easy to see for the first time where the battle will eventually will be lost in hand mobility and contraction.
Like I said.  It's worn me down some.  I don't feel that deep harsh fighting blast against EB as I did.
Maybe it's the summer.  Maybe it's a moment where I've sunken into self preservation.
Maybe it's the summer as it seems to have finally come to the Wet Coast.

Was able to find a smidgen of time to tick off one of my personal 'bucket list' items (the list one has in mind for life accomplishments or avenues to that end) as it relates to my family.
Still evolving, but for an extremely affordable price with Andrew we have a little trailerable sail boat for fun and future family camping pleasure. 

How Raquel fits into this picture is the evolving part.

I figure if I took her down a North Shore trail in her trailer behind my mountain bike than I can figure out how to keep her reasonably safe while getting bumped by some waves.
Although letting go of sails and her shackles as we get over powered by a gust and a knock over imminent, I think I might have to carefully consider the entirety of my crafty nature and every possible consequence.

Andrew and I making it work.  Although before families and children get back on board there are some rigging issues that need to be resolved. 
Should I mention the first time we took it out with Andrew's kids on board, we forgot to put the transom plug in?
Should I mention that without the existing foam displacement the boat would have likely been at the bottom of the Indian Arm? 

Anyway, it works, floats and soon we'll have images of Raquel enjoying Sailing the Seas of Cheese at the Barriere.

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