Wednesday, January 23, 2013

Raquel's Buddy out East

Johnathan has made the news again with a news paper article.
Just as good as his TV appearance.

Ottawa Citizen "The inner steel of a butterfly child"

Raquel is still on her high.
Except for the moment that she was playing with Cordelia and leaned against her knee then stood on her foot.  Raquel quickly slipped off the foot and slid down to the floor with Cordelia's knee being the principal point of contact.
The result - the better part of Raquel's back has a vertical blister. Ren noticed it when she gave her a hug and noticed the balloon forming under her clothing.  With a couple quick snips they gushed fluid and all is normal...

Till they start to itch.

Sunday, January 20, 2013

Sailing on the clouds

What a few days we've had!!
Raquel has been happier than I think she ever has.  She's also had almost no meds in comparison to other times.  She just slipped out of our last little bump into one of the happiest times I think I've known her to have.
She's been giggling and playing all day every day on top of throwing down some nice vocabulary.

She had a sentence this evening that included 'myself'.  It took me by surprise, not sure why, but it was very nice to hear.

We pushed Cordelia to get up twice this weekend and to be standing in her ski gear by 6:15 am. 
She probably didn't have to get up that early, but a quiet game of uno over a warm cranberry muffin and a 'quad' (esspreso) was calling.  We had and a few nice moments and I was sure Cordelia needed the extra time to quietly prepare mentally for the day ahead.  It helped that she won out the weekend in cards.

Today was her second race and I think her excitement for this fairly demanding sport has now come close to what mine is in watching her.

She was so cute sliding down around the gates, to add to it there was a speed course, a small skating course and a jump.
I was trying to give her advice for the jump, but didn't realize the mothers of the other kids standing by were also beside me when I described how to get the best distance.

Tuck down to the jump, then at the edge kick and jump up as high as you can and tuck your body pushing your hands forward.  Don't worry about the landing till later.  It's the jump that matters.
I heard a few words that described the typical dad unconcerned about injury.

Whatever.....  Coco and I watched a 10 year old on youtube the night before doing the 30' high monster jumps doing 360's and 720's.  What's 10-15' off a well controlled 3' lip???
My mom drove Ren and Raquel up for the last three hours with back pack in hand.
It was nice, my early ideas of taking off for a ski tour and coming back when all was done didn't run it's course.  The sun and cool race course setup at the edge of the trees was hard to beat and the better choice was clearly made.
I heard the call for course volunteers and was asked to help a group of parents to push flat the snow at the outsides of the turns.  After a few runs I decided Raquel should also take a run of the course.

So on the back she went and we plowed the course with her giggles and her frequent requests for me to 'slow' down....
After we plowed the course

random eagle flying in background

GO! Coco!

Raqu hamming it up - Gangnam Style.

Couldn't have had more fun hanging with my girls today!!!!

To add.
We just found out Cordelia medalled.
We left before the award ceremony.  I can't imagine how happy she would have been to stand on the podium and receive a medal.  She would have looked like any fairy tale princess getting her crown.  She wouldn't even let us go till she got her participant ribbon, never mind if I let on that there was metals for placing in each of the events.

The reality was, Ren didn't bring enough of Raqu's gear, so we were at the perceived edge of a breakdown and decided to pull the plug and save ourselves.  The break down didn't come, but maybe it was just the overprotective dad at the end of his wits from watching a fragile kid walking amongst ski's, poles and piles of kids running in every which way in clunky ski boots
OR from turning Raquel around over and over from sneaking to the edge of the ski hill so she can sit down and slide her way to the bottom!!!!

Huston we have a problem...  I'm thinking the sled option with ski's is now an inevitability for Raquel.  Carbon fiber with fluffy safety padding through out.

HEHE I'm gonna get my sculptor inventor hat on for real.

Friday, January 18, 2013

Backpack and joining the gang

After Raquel's little big complex and watching her sister and parents leave her behind for a night

I asked my self, why am I pulling the kid?
After minor diliberations Ren was at the head of the rope.

excursion of fun and snow, a few friends came in with the goods.
We now have two backpacks for Raquel and the second as the story goes was a return from our local MEC.  A buckle was broken and needed to be replaced.  Our team nurse who manages all our Doctors and team meets goes to the local outdoor shop and seeing a return (I assume) talked to the staff and exclaimed Raquel's case.  As a result, Raquel has a perfect backpack donated by the store with repaired buckle. 
Sorry Siobhan, but this one has her very safely confined and can likely take a small tumble should my edge get caught and down we go while carving down the mountain.

Although for lesser treks that safety isn't a primary concern it's perfect - Skyline trail.  So for the next 10 lbs Raquel gains we have a couple great options for bring Raquel out on the excursions that baby strollers can't be used.

Last night I finally got to test it out with a few modification my mother and I came up with.  While Ren and Coco were off at another mountain with chairlifts in operation Raquel, Louise (nurse) and I went for a night hike up Mount Seymour.
Raquel screamed the entire drive up that she wanted to go home and be with mommy.

ARG....  I just read Kourtney's mom's blog.  Tough LOVE must come at a price.  So I tuned her out.  A little more difficult when I don't have a hallway and 4 pillows to soften the shrieks.  Anyway, as we pulled into the parking lot and the winter wonderland Raquel's eyes opened and she became peaceful and expectant of a great little excursion in the backpack.

mom and my mods in the ikea sheep skin

It was a quiet hike up with mostly Louise and I conversing.  Half way up I realized Raquel had fallen asleep with her face warmly nestled to the big piece of wool at her face.

Since it only takes me 5 mins to descend Louise turned around first and Raqu and I did the final accent alone to the top of the highest ski run closed at nights.
I let her out and she walked around a bit then we carved our way to the base.

Not a fan of the speed, she quietly mentioned I should go slow.

In the end she got to do something a year before her sister.

Wednesday, January 2, 2013

Heart breaking

Ren & I called in Babi to do a little Raqu time as we prepped for one of our favourite partial family events. As we gathered our ski gear for a night hike up our local mountain Raquel followed us around desperately trying to get in and become part of the action. By the time we all had our pants and sweaters on she was delirious crying that she too wanted to go.
Instead of figuring out sweet nothing's to calm her aching heart or cutting to the bone by telling her, that at this point her EB wasn't going to get her on this excursion or anyone like it in the near future for a plethora of reasons, what made sense by not using her disease against her, was to say, she was simply too small to come along.
Without even a moments thought Raqu had her answer with arms stretched out above her head, that of course, "I'm big!!!" can't you see??. Tears pouring out of her eyes, standing as tall as the giant she's sure she is, this new and feisty little big girl complex bursting at it's seams pulled at our heart strings as we continued out the door.
For certain this is one of the base senses of self I most want from my daughters, passion in their actions and standing up for what they want in life. Raqu had in fact just the previous day went up the mountain with us and friends. It was her first experience in her age of awareness in a land buried in snow. She hardly wanted to take two steps, as all she needed to play with was under her feet in the alpine winter wonderland. Then there we were telling her she was too small, basically ignoring her pleas as we were headed for a quiet little snow covered perch over looking the city and lights sparkling far across the Georgia Straight.
The irony in all this was swift and painfully uncomfortable. With every step I was reminded in a small part her world of friction and pain.
My ski boots have long worn the inside heel away and every year it's the same. I end up with two massive blisters one on each foot from the friction of a good long day out climbing up and out of gullies and bowls. Due to Raquel's constant fight with painful blisters I think I have less and less tended to mine from work or play. So with every step I found myself holding my breath as the pain was consuming.
Was any of that what she feels? I don't remember a blister hurting that much, maybe it was guilt.

Now home and the irritation of my tiny sores gone, listening to Raquel plead for Mommy and little shots of pain in her sleep, it feels more and more awful to have left her like that.
It can only do damage.
Like 'they' say, one day the cuddles will just end. Maybe even the desire to go play and join in on any or all the reindeer games.

Anyway I can't help but to ask if someone reading this in the Vancouver area has a toddler backpack no longer of use that can be modified for our little big girl princess, we'd love to bring it back to life. Just email the link in my profile I'm sure we can work something out.
Ren can tow Coco and Raqu and I can suffer in our blisters and pain along side as a full family event.
Don't worry, skiing with Raquel off into the soft backcountry in a backpack is surely a good idea. She's been launched five feet in the air onto all the pillows and blankets in the house many times with nary a mark. She'll surely be able to survive an small tumble with her dad in the 'pow' also with nary a blemish. She's a pro with the tuck and roll and her nearing perfect somersaults on and off the couch.
Besides, some blisters are worth the suffering, or is that my own twisted masochism?

Glad there is Ren and Raquel's other caregivers wisdom to guide when there is a foot ready to step out and depart from reality or rational judgement.

Not like its a certain I'll listen or comply anyway.