Monday, September 11, 2017

Last days of Summer

Last days of cabin for summer 2017
As the summer comes to a close it was awesome to reflect on a few things Raquel was able to accomplish with the addition of a mobility scooter through Ren's health coverage.  We were initially thinking of getting her a new stroller for larger children, but a physio was suggesting an electric and manual wheelchair.  We had no idea Raquel was even eligible for funding for one.  I was having a hard time with the stigma of those giant and heavy wheelchairs.  Plus they certainly aren't practical if I'm the dad, too bulky, heavy, and slow.  There are not many places they can get to beyond the pavement, let alone a change in level beyond an inch or two max.  When the light went on and we could get a mobility scooter with some suspension for Raquel, it was a game changer.  In the few months Raquel has owned it we've put it to the test!  Raquel's EB doesn't make walking to school much of an option on most if any days.  Weather, wounds and many other factors make walking any distance in one go, very limiting, even though she's only a few blocks from her new school.

To get Raquel ready for the riggers of ski season I figured there was some training that could be done using the scooter.  Plus how fun it would be,to push the limits of the scooter, her driving ability and focus.  At first we took ever increasing loops near our house from 1, 3, 10kms.  It eventually went up to 15 kms from home.

Put a 7 year old in a vehicle for 3 hours and what happens?

"Are we there yet?"
"When are we going back home?"
"I need to pee"
"I think I have a big blister on my bum!"

Eventually we'd make it home and after short reflection by Raquel, the million questions, few blister pops, frustration etc. the time and distance were hardly a memory and the pride and accomplishment of the trip was all she could talk about to her mother or grandparents.

Of course in doing the tests on battery life and routes the scooter could handle, it was inevitable that one day I'd forgotten to recharge and we found out the hard way what happens when you are 1km from home at the bottom of a large hill and that zero power wasn't to be an option in the future....

We ended up having to find a rope in a random alley to tie from my seat post on bicycle to her scooter and attempt to drag her home, push, cycle or pull.  The frustrating part was discovering that the damn scooter has a limiter at 2 or 3 km/hr even when in neutral.  I went over the bars a few times as the 180lb machine would stop instantly and I'd go flying over the handlebars.



It was pretty easy to see, right off the bat her scooter had lots of potential for a camping trip. Especially Saltspring Island where access to an amazing campsite was well within our range.  Plus, it's a site that had zero risk of one of our plentiful large scale critters rummaging about the site for something or someone to eat.



Off we went, a 20km scoot/cycle in from Long Harbour to Ruckle Provincial Park and two nights camping.



As it is, there is always a risk taking a kid with RDEB camping.
Stuff happens.
Her foot wasn't the greatest dad moment as I firmly planted my knee on her toe while climbing into the tent after she was asleep.


She did her best in the morning to keep it together from screaming, but the fresh ocean air definitely made for a tough few moments before I was able to re-bandage her foot.
For those who don't know. Raquel's has the ever exciting Recessive Dystrophic version of Epidermolysis Bullosa (RDEB) and has exceptionally fragile skin.  An arrant fingernail can scrape the skin from her body.  This often happens when we are merely trying to pull of the various dressing materials that spot her body.  With RDEB if I didn't cut this blister on her toe, within a few more hours the fluid within the skin layers it would continue to push the Epidermis off  creating an ever larger balloon of fluid until it was relieved (cut).  The extent in many occasions of an uncut blister would extend to the entire top of her foot or wherever gravity let the fluid flow between the Epidermis and Dermis. 

She's tough and didn't call too much attention to me cutting at her skin with scissors in a crowded campsite.  Once all the dressings were back together she was immersed in play with her buddy who came into the site with her dad in the luxury of a car.

On the way home we took the short way back.  It was only 10 kilometers to the next ferry.  With the many kms we'd gone in the few months of owning the scooter Raquel was very with it and prepared for traffic as it closed from behind.  She rarely veered into the center of the road or found herself headed for the ditches that lined all those narrow roads.  

It does occur to me that she needs a full face race helmet that little bmx'ers use.

In the end, she's concerned her scooter is too slow.  I'd agree, but I think she has a few more adventures before that gets modified, I'd like a better range too.  A trip to Hope or up the Sunshine Coast might just take 5+ days at our rate of travel.  If I can get that thing to average 15kms/hr and hit 30kms in a day we'd be golden!



Debra Canada Approves a Sit Ski

Been a while friends.

A new chapter has finally arrived!
Debra Canada has approved and funded Raquel to receive a sit ski and become a Debra Canada EB Ambassador for the year.


Getting Raquel to ski with the family has been ever present for years.  It's been simply the cost and the risk of disaster that has kept me from going too far with this idea.  At the end of last ski season we were fortunate enough to get some hard hours volunteered to us by some wonderful people at Vancouver Adaptive Snow Sports VASS.


We had a quick few runs up Grouse (photo above) then a morning session on Mount Seymour with Mark, then two full days at Sun Peaks.  The Sun Peaks trip was quite special as it was during Cordelia's last U12 racing experience within the Nancy Greene Festival.

Cordelia BIG SISTER

Heading to Sun Peaks every year is very special for Renata and I as we were engaged on a trip there so many years ago.  It makes it so fun to share what makes us so happy as parents and be as a family.

Oh, the time doesn't hold on for anything, it's been 14 years! Crazy to think one of my kids is already pushing at the edge of my abilities as a skier!  The only thing I have on her at this point is inertia and the ability to ski in powder.

Once up at Sun Peaks in March 2017 we were able to have the first family ski experience of Raquel's life!  We were able to crisscross the mountain following Coco and several of her events.  It was pretty special listening to Raquel cheer from the mountain side, where usually only Renata or myself are able to stand and cheer, as one of us is almost always at home or wherever with Raquel.  The pride and admiration Raquel has for her big sister was clear to all as she giggled and cheered as Coco raced by.
I can't say enough of John to work so hard to see this happen for us.  It definitely let me see without a doubt we had to find a way to owning a sit ski for Raquel.   
Simply, skiing is a very expensive sport and something we save for the year so that we can enjoy once the snow falls.  Having both a little racer and a disabled skier in the family is just past affordability for us and something had to suffer.  Considering Cordelia is so successful with her racing, it was impossible to think of pulling her from it just yet.  The Grouse Mountain Tyee program has also been rewarding for the whole family and something very central to how we even socialize throughout the year.  So the opportunity Debra Canada has given us to fund a sit ski for Raquel is something I can't begin to say how grateful we are for. 
Above photo - Ren, John (VASS), Raquel, Clown, me, Alec, coach Tamara
Cordelia was just out of shot.  She refused to be in front of camera with clown while her soon to be teen buddies were watching.  I was with her in the fear of clowns, but sucked it up for the TEAM

!

Above Photo- John, Raquel, Cordelia
After the last day and the racing was over, John, the kids and I headed out without Ren, as she was at the short end and left to clean the cabin.

Raqu was out of her mind, as we played in the powder stashes and egged and watched her sister jump off cliffs above and around the runs.  Coco and I enjoyed swooping back and forth across the runs playing with John and Raquel like those jets might do in airshows with wide open skies!

The giggles were special as you can hear in video.  After this day, I knew without a shadow of a doubt, this was for us and going through the pros and cons I also knew the sit ski would be used and we should seek the generosity of Debra to help us out.

Poor John though.  I desperately wanted to 'thumb' Raquel (term for guiding bi ski) and due to potential legal reasons by who owned the sit ski it wasn't the best of ideas until I had full guide certification.  But after two full days John started to show the burn and wear of very intensive run choices and lap speed.  On our last few km to the bottom I could tell he was at his limit and asked if I could get a quick turn and 'thumb' Raquel.

Of course anyone who knows me, even in the 500 Meters of run allotment I can still find a way to make life exciting for all.

The first few turns were awkward yet safe and then we settled into a few more decent turns with a little rhythm while John blocked and advised from behind.  Raquel like with John leaned into each turn almost taking full charge of the ski but for some light weight adjustment by me to even out her arcs.  However, as the run started to flatten out and the end came close I saw two large arcs where we could open it up some with deep cross run GS turns and one final deep carve back up against the fall line where the run merged with another to stop and do the hand over.

Except.

On the bottom of the last arc we came very close to the bottom side of the run with the reality of the inertia built up by the bi ski ultra clear.  With my extra weight pushing from behind we had picked up a little more speed than I had anticipated.  As it is with most green runs there are many jumps and bumps at the edges near the trees that the thousands of kids cut away at constantly over a season that the groomers tend to miss.
I didn't exactly see the jump or it's depth until the split second before we upon it.  I'm not sure if it was a lighting thing or just me not paying attention or looking too far ahead for the best line to finish our tiny session. We had good speed and were definitely going fast for a flat run, but not for one with moguls or bumps.

There was just enough time to panic hold my breath and have the choice of accomplishing either one of two things - carve deep and get above the bump (maybe), but with a decent probability of risk that I'd clip the bump with my downhill ski or worse the outside ski of the bi ski and get twisted up and finishing the turn in a spectacular crash of mangled body parts and machinery or hold the line and brace for air time.
Since my skill at thumbing was minimal but for a lifetime of skiing rather aggressively alone and the few moments I ran a sac of sand down the green runs of Mt. Seymour, I decided to get level and prepare for Full Send and let Raquel understand what the term SAF might mean in real world adventure of poorly planned activities.

At the moment the handle bars went from just below my waist to chest height and Raquel shot into the air, my eyesight went to straight ahead to see an Adaptive ski guide from the Sun Peaks association with eyes glued to our airborne adventure.  It was exactly the ski jacket colour and moment I'd hoped to avoid in my few moments at thumbing, let alone in the moment we could end up in a pile of pain.

Raquel was immersed in screams of joy momentarily enveloped in the rush of weightlessness that all extreme athletes can't ever get enough of.  But that moment of joy was maybe but for a split second as gravity pulled her back to earth.  That sound will be something I'll likely not forget. The tired suspension bottomed out and the scissor mechanism clacked at max bottom with a harsh metallic crunch mostly associated with car crashes. Surprisingly after a split second we were still skiing and there weren't any parts flying off tangling my skis, I anxiously straddled the machine to a stop, finishing my turn up and across the run where originally intended.   At the moment she was safely on the ground the Guide and Raquel let out more Whoops.  His a deep RIGHT ON! - likely that someone would have had the guts and skill to safely jump a Mountain man bi ski with a kid in it (hahaha, imagine if he knew she had RDEB and that was all of my first and only minute thumbing one?) and Raquel's probably more a squeal, but definitely of pure pleasure behind he physics of momentary weightlessness, speed and danger!  Next trick a barrel roll?

Ummmm....

John skied up with a stern look in his eye and suggested rather flatly that, 'that wouldn't have been my choice of line'.

Then adding frankly that he should finish the ski to the bottom with Raquel.

Yeah, I was OK with that.....

But, what fun!  Raquel is totally my equal for adventure, that is clear and we are all looking forward to the adventures of the coming season!!!  I expect a few more dicey moments.  Maybe a ill planned trip down a double black to search powder, or a tree run.  Wonder if the Dynamique comes with roll bars, not just outriggers???

Our family is looking forward to next year.  It is awesome that many of the ski hills have amazing Adaptive rates for Caregivers and will make this a very good season and hopefully many many more!

VASS CUP

Raquel and I are getting ready for our next big race with the sitski. Here's video of our first race. Here's video of her big s...