Saturday, June 23, 2012


I ended up scolding my dad for talking over Raquel.
Oh well.

Can't even hold her hand

Back to those deep moments filled with that horrible sadness.
Raquel has huge blisters on each of her hands.
One was evident when we pulled off the bandage, but it was the one on her right hand that stopped me in my tracks.
I know I've played with her and held her hands, although it couldn't be much different than any other time.
Work and life had me push off a hand change pushing the limits and again the loss in diligence has dire results.
The dread just comes in waves as the blood and fluid pours out of her ballooning skin in drips all over the chair, floor and catch basin.
What makes it worse is her battle fighting the lancing sessions.  This usually ends in a missed strike and some more pooling blood within a blister I'd previously lanced. 

She's been so good of late and again for an oasis covered within a blink of an eye we're likely soon back to the soreness and the dreaded itch.

Friday, June 15, 2012

Matching skid marks

I showed Raquel my recent skid mark mountain bike riding and she squints her eyes and looks with worry and internal conflict and says aooch over and over a few times.
Then starts to move closer and say kiss kiss kiss.  Before she had dust particles and blood smeared across her lips I moved away.
Crazy how a kid with so many issues has compassion.  Especially toward the guy who's almost always the one with the needle and bandaging material pressing sores and letting blood from her tender body.  I slept rather uncomfortably as my knee kept sticking to the sheets.  Clearly I haven't learned from my EB techniques on Raquel with strips of Mepitel.
OHHHH the suffering I must endure.


Damn pads.  They need repair.  The straps that hold them on my legs have rotted from years of sweat and barely hold fast.  They only work on impact, clearly not the sliding around and down the side of a bermed corner. 
Coco is gone, so I seem to have some extra time to get back into one of my languishing passions.
Going fast through tranquil forests with a frantic clackety clack clack of springs and shocks working OT.  Except my current body mass from many many months of inactivity isn't quite holding me up from eventual disaster.  There is a new app for cycling called Strava.  It records elevation and distance and keeps track of certain segments so that you can see how you fare against anyone else who has the app and rides the same trails.
It's very addicting for the competitive spirit.  In the last two weeks I've been anxious to when I get out next to chip away at the fastest times.  There is this damn pro that has me by a minute and a half on my favorite trail (Ladies Only).  The unfortunate issue for me is there is a long flat section with an uphill at the end so my two years of training creating body mass at the end of a couch with Raquel, can't seem to carry inertia far enough before the lungs and legs start screaming at me.
I didn't build it but in the 20 years of it's existence I'll bet I've rode it 300 or more times.
Anyway, I'm just explaining the singular tract of my mind in recent days and the desire to quash EB for a little while.  

Raquel is perfect. Skid marks on both knees and an elbow, but an absolute dream as far as attitude and mobility right now.  It has cleared my focus to attack a heavy work load and sneak off for two hours three to four times a week for my pursuits of excellence and shedding my EB jiggles.

Ren too.  Thursday we have a nurse do the evening shift.  Usually Ren takes Coco for sushi and I do what ever I do.  But last night Ren did the Grouse Grind (world famous accent) so she's great.

Just saw Coco's nose and eye on skype.  No sound, so I ended it due to frustration that I can't hear my Coco Bean.

Tuesday, June 12, 2012

Coco gone.

Off to Europe she went.
Taking with her Babi and Grumpa.

Raquel is in exceptional spirits, even with her missing skin & kin.

She's actually better than best which is also what Cordelia scored on her Whostery Test.

I'm not a fly, I'm a bumble bee

Apparently today when Renata said good bye to Cordelia shortly before she disappeared behind her gate, she turned and gave a quick wave and said bye and was gone.

No tears.
No look back. 

The world traveler departs.

I think that is even going to make me miss her more.

Later in the evening I opened the fridge and there was a Thomas Haas cake.
Ren had already opened and started in on some wine..


Someone turned 42 today.

Hope it's an early night for Raqu. 
I have some making up to do.......

Friday, June 8, 2012

Nothing to report

We've got smooth sailing.
Everyone has their head down and making ground on normalcy. 
Cordelia is in the final stages of life in Canada.  She's being sent off to Europe with Grumpa and Babi to stay with the Czech connection.  She's very excited, but I don't think she actually knows what she's getting into.  I really doubt she understands what a month and a half actually are.  I'm thinking she's thinking in weeks and that at a whim she'll be able to return.
We all know Raquel is tough.  Now we'll know Coco is going to be tough.

The part we've not really thought about is the Coco effect on Raquel.  She'll be missed as well there won't be someone to go off an play with in the bedroom for hours.

Friday, June 1, 2012

mmmm banana and sleepless nights.

Getting a little tired of that routine.
We've now completed a couple of great days, so there's that.
Which means we're back to feeding banana to the little esophagus that could

The last banana day led to a bad night.  We'll see about tonight.

But all and all I've got my Olympic couch tumbler back.
She sits on the end, which the arm area is perfect sitting height for Raquel.  Once again the only thing in our house that Renata and I have any pride in (objects) our couch shows how wonderful and practical it is for the considerable investment.  Well, there is the bed I designed and my dad built for Cordelia unfortunately it's not as practical in EB terms.  And when it comes time to Design and build her bed the differences will be great.
Anyway, Raqu is constantly wanting to show us both her counting and tumbling skills.
She sits on the edge, back to certain disaster should she go the wrong way then puts up the mitt and counts.


Then tucks her neck falls forward and should momentum and the proper placement of her head go nearly as planned she does a half roll, pivots on her bean then falls ungracefully to the side. Nearly continuing into a second roll, onto her face, onto the floor below.
Of course she's not made that second roll yet as she's had spotters, but there will be a time when she's showing off to her sister when she will.  I do admit she is able to nail it and do the full roll and finish laying spread eagle with big eyes of questioning approval and enjoying the cheering and clapping from the peanut gallery.  The adulation has clearly lead to her pursuit of perfecting her craft.

Sooner or later she'll get to the TH. Most Germans can't say it, so does it really matter?
I guess my only hope is that she can look at a sign and not say widio vest, not that that sign is still in existence.

Always pushing the buttons.

But take her out to the grass and watch her walk around on uneven ground with rock walls and underlying debris for her to trip and fall on is way too much for me.
I can handle mere moments then I've got her by the blanket and am carting her off indoors where her balance and traction have minimal interference.

I'm always shocked when others don't see the danger.

Banana's and sleepless nights.
up down up down.
try this don't try that.
Oh my what did that do?

Do this, but most certainly don't do that.  But was not doing that really the right thing?

All I ever do is push Cordelia in nearly every comfort zone she has from typical fears of River Monsters to physical activities of skiing no fall zones.

Do I freak out swimming in the ocean past any place I can touch the ground?
You bet.
Will I ever summit and ski a peak using crampons, ropes and ice axes?
No chance.

Poor Raquel.  How many times has that phrase been uttered around the world?
I do not look forward to that verbal argument her and I have when she is comparing my control of her and what ever it is I do with her big sister.
Maybe she gets it and will be safe and I can avoid this battle, but the reality is I'll probably be proudest of her for saying
'enough Dad, let me be!'