Wednesday, March 7, 2018


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 sister thumbing her for first time.
I had to pull sound from the video as the whole way down I was yelling at them to do a slide stop and they ignored me or as they said didn't hear me.  I know the truth.

It has been a very special year so far.
Between VASS and Debra Canada I can't say enough thanks.
This is Raquel's fundraising page for VASS.
Seems like we've been doing a pile of fundraising of late. Debra Canada's Bella's Ball just raked in $38K from the generosity of so many great friends and the community at large.
Raquel's VASS Fundraising page

Thursday, January 4, 2018

Holiday Season is SKI SEASON!

After the couple weeks off from school, Raquel has become a solid blue square skier.  We can't quite manage the black diamonds yet.  There are some outriggers for her ski that have yet to be delivered, but this extra device will prevent her from falling over during turns, which with EB could be a big potential for disaster every 2 seconds. I'm honestly a little worried about starting that based on how fun and fast we've become as a team.  It would definitely mean many years back to the bunny hill and teaching her all the basics of a new style of skiing for us both.

I can hear that little voice in my ear yelling  'patience Ryan!'.

So far this season we've tried our best to live on the hill as much as we can.  It has been great as we've stayed away from injury and over working her to the point where she complains 'Not again'. There are only two blisters that I can attribute to skiing related, but in places I am sure were not from crashing or the constant vibration and friction due to bumps and jumps that find their way into our path. It's clearly an issue with getting in and out of the chair and not having a quick release mechanism for the handle bar for her hands.

We have done it all so far, as we've skied powder, raced and played about the mountain with her sister, friends and mom!

It's truly been an amazing start to the season and worth the wait.

There have been a few moments where eyebrows have been raised at the run choices and styles of skiing Raquel and I have gone after.

One was an incident on a icy and foggy race course.  Friends have shown us video of the top and bottom of that run, but thankfully there is no evidence of our crash.

It ended up being a harmless sideways slide on the hard snow across the course.  Luckily toward the side of the course the kid we were racing was not.  I had my tip trapped in her bi-ski somehow and with the speed and typical obstacles present on race courses we had two choices,

One - turn back down hill before the gate and hope the ski comes free, although bailout would mean we'd be gaining speed where we shouldn't with almost no guarantee we'd be doing a safer tract.

or Two - keep the present line and lay down the sit-ski attempting a controlled crash and hope for the best!

So, I laid it down, problem was we'd lost too much of our angle while trying to get my ski out from under her skis and were headed directly at the gate.   I did everything to throw my feet below us to deflect the gate. Apparently we stayed on the right side of it not DQ(ing) ourselves from the race, because once we stopped on the far side of the course with our tips pushing at the B-net (safety net), I heard someone yell 'get up and go'.

However, at that moment I was more worried about Raquel's mood or possible injury.  It was unclear where her arms were during the crash.  It's actually a conversation we have every other run and prior to the start of this race.  I ask what do you do when we crash?  She answers.  How do you hold your arms? She shows me.

I crawled quickly up to her as she lay motionless and quiet asking if she was alright.

Clearly, she heard the same person yell 'GO!' and ignored my question and instead said 'Lets go!'.

So, without delay we got up and we finished the race.  The run from there on, was very exciting for us both, as we could see the kid in next lane as he had just overtaken us.  We worked very hard to catch up and pass him in the final couple gates. Raquel leaned sideways and lunged forward in her chair at each gate to help pivot and glide the bi-ski through the course.

Raquel mentioned many times after the race her excitement of winning the duel and the work it took to catch him!

Raquel was also quite lucky the Race Committee didn't penalize her for the extra 220 lbs. of inertia pushing her down the hill and finished with a respectable 6th in U8.

The other issue was totally avoidable.

Well, I guess to some, Raquel's crash above on an icy race course with only 7ish days of total bi-ski experience would have also been avoidable.  Should her father used the commonly held judgement of his peers and not race....

We had a powder day and as they say here in BC, 'no friends on powder days'.  Which basically means no rest until every bit of smooth clean snow is tracked and bumpy.  We had 4 dreamy runs where we could find a clean tracks from top to bottom.  Raquel and sled handled shockingly well and it was like driving a train down the hill.
After the second run she complained of all the snow flying up into her face, it was annoying and painful.  Geeze, who likes choking on powder on days like that?


It took a few moments to understand her predicament, but then realized her feet made a ramp for the snow flying up over the front of her sled right into her face.  When a upright skier goes through the deep it usually hits their chest first and we only deal with secondary powder puffs.  Raquel basically had her head in the end funnel of a snowblower.  We did a little corrective gear modification and back to it as fast as possible. The hoards were coming and soon the powder stashes suitable for the sit ski would be all gone.

When having too much fun, my tendency for safety eventually goes fully out the window.  With each run the mountain became more and more tracked. We literally had no choice but to keep moving further to the sides of the runs looking for those last sweet silky smooth powder puffs and the wonderful face-shots at every turn.

Eventually all good things come to an end.  Going for that last turn we found ourselves on the wrong side of a bamboo pole with a caution sign stuck to the top of it.  It wasn't until we got past the sign that I realized what we were to be cautious about.  At first glance it appeared there was only the snow cannon below to worry about, but as we swooped down for one more turn at the edge of the trees a 3' ditch wall hemmed us in toward the cannon.  I did everything in my power to get her to the top of the ditch and pick the smoothest line, but as momentum started to work against us once Raquel cleared the top I have a momentary image of seeing her and her machine completely airborne with snow chunks blasting off in every direction and her slowly twisting sideways in air we had lost all our forward momentum.  I wasn't even close to getting to the top and with this style of sit skiing I must be tethered to her handle so that in case of crash we don't get too far from one another.  Problem at this point was she was going to land at top of bank and I was going to land at the bottom backwards and upside down and there really wasn't much slack in the line to make up that distance.


My arms basically laid her sled flat in air and we came to a quiet and soft plunk in the deep snow.   Lucky for my aging body contorting in soft snow isn't like contorting on a yoga mat.  All I could see from the ditch was snow piled up all around her body and face.  I had a few moments of panic as I struggled to get my hands free and undue my bindings as it was virtually impossible to get my skis free of the snow to twist around.  As the seconds ticked by and Raquel not hearing or answering my questions of her wellness, I could see our spotter ski up with a big smile on his face.  He gently reached down to Raquel and pushed all the snow down and away from her face.  Raquel wasn't like with the race and requesting for us to get up and go!  She continued to say nothing and just laid motionless strapped into her chair.

Eventually I got up and set her up yet she still refused to speak.  We finished the short distance to the chair pushed through the line and up the chairlift.
It wasn't until we were half way up before she made her first words, I was very uneasy if she was angry, scared or something else, but her eyes were alight with adventure and joy.

She did however make it clear with a cautionary note, not to ski into ditches or go over jumps for the rest of the day.

Monday, December 11, 2017

First big test successful!

Raquel finally got a chance at skiing with her longest buddy as well as her uncle, aunt, sister and a few new friends. This without the generosity or extra logistical maneuvers of  finding and setting up a sit ski through one of the many great disability ski programs, which really means - way more time on snow having fun!  That freedom to just go was amazing.

In the first few runs Andrew and I definitely were wide eyed wondering how lift loading and skiing was going to go.  He was of great help shadowing us from above, deflecting the path of any savage skiers.  There was mention he was nervous watching Raquel and I arch close to the edge of runs, every time seeing a disaster in his minds eye.

Happily there were only two crashes to report.  One when someone got too close and Andrew yelled at me, so focused on not letting my skis get caught in Raquel's for an evasive move I couldn't think of anything else to do but to just fall over to stop and hope for the best.

Raquel did her part and kept her arms in and braced for the hard snow impact.  I can't imagine a broken, RDEB, zero collagen arm in a plaster cast for the required healing time, so the risks of even taking Raquel up there are great.  Unfortunately I'm me and tend to think fun first, ask questions later. It was clearly a good thing Andrew and I gave Raquel a little speech and did a few test falls before we went up.  I think explaining how much more a broken arm might hurt than scuffing the snow sideways as she slides to stop worked.

The second, Cordelia was skating Raquel across the flats at base.  Coco couldn't wait to drive Raquel and kept asking when was her chance, so I let her go along the easy part.  But as pushed ahead in full trust of Cordelia's strength and ability I heard Coke panic as I was placing my skis in the racks for lunch.  When I saw her there were a couple of parents headed to help and that always strikes more fear in me than the fall itself and I belted out my regular, 'don't touch that kid!', shocking the poor do gooders into a motionless stance next to Raquel.  It's always difficult to explain Raquel's condition in the shortest possible terms and what could happen if one picks her up without a very conscious thought of her skin and friction points.  EB, simply doesn't make sense especially when for the most part Raquel looks like every other kid, especially when she's all bundled up.  People consistently walk away looking visibly upset for being yelled at for simply trying to be a good Samaritan.

Unfortunately, there's not much else I can do or have time for in those settings.

It would be nice one day EB had the awareness of say Cancer and all us EB parents are able to just say 'he/she has EB don't touch please'.  Then we'd be graced by the perfect reply, 'Oh, thanks for telling us, BTW we support Debra Canada!'.

Back the the main story - the skiing was amazing!
Raquel giggled and screamed the first few runs feeling the forces of being locked into a turn and the swish of snow and wind as we navigated down and across many runs on Blackcomb.

I was too busy skiing and tracking about the hill learning how to work the sled to think of taking any photos, but thankfully Maria and Andrew sent us a few.  I think for the first half of day every turn was survival mode. By the afternoon it was getting to be pretty fun as Raquel and I started to sync our movements and play about the mountain.

The sit ski performed amazing and turned on a dime once we figured it out.  The large handles and ergonomic placement of Raquel's body in seat centered on the ski, worked very well.  It absolutely helps that she is as light as she is.

Here's Raquel getting set at home the night before to see if the padding and seat would work. ( Note - no gorby gap)

It must be mentioned the ROCK STAR PARKING having a disability tag affords.  It's obviously not what one looks to be in the company of, but once you are there it's pretty special, practical and time saving, plus getting the extra space and not knocking every car around with the cumbersome gear we often take along.  Surprisingly Lot 7 only has two disabled parking stalls, seems light for such a major resort.  I was very happy that we finally got around to getting the tag as we've only had it for a couple weeks.  It wouldn't have been much fun walking that sled up to the next lot a few hundred meters up the hill.


Above~ Raquel was very happy to be able to share the big mountain experience with Ella, well I think they both were!

Above~ we were all standing and watching Ella and another little buddy climb up off piste to ski some powder.
Don't worry, we'll fix Raquel's gorby gap before next session.  It's difficult when worrying about abrasion issues that ski etiquette can get lost.

After a full day on hill, Raquel only had one blister at back of leg.  I'm not sure if it was due to her sitting on chair for lunch or if it was from the sit ski padding I quickly set together.  We will definitely figure it out for next time.  I also have to resolve some minor suspension issues as it seems very slow and not nearly as spongey as I think it should.  Chris at Enabling Technologies was very good giving me a long list of what to do almost immediately after I asked him for advice.

Once Raquel and I became comfortable with the ski hill and how to slip and slide and not generate too much speed through each turn, I took her into the moguls.  The video below was our last run and you can tell Raquel was getting tired as her head started to bob after every little bump.  As soon as we hit the road below she asked to go down.  However moments later she heard that Ella and Cordelia would go for another run and instantly changed her mind not wanting to miss any of the action. I had to stick to my guns and talk her and Ella out of it, as having her breakdown and fly into one of her fits of rage to end the day wasn't how to finish one of the best ski days EVER!

Oh yeah, on our second or third run, I couldn't help myself and we went into the race course way before my ability of 'thumber' should have allowed.  Mostly, I just wanted to see if Cordelia was as good as her dad and also beat Andrew down a race course....  Andrew beat her, but Cordelia quietly complained her SL skis wouldn't go as straight as course was set.  Andrew got lucky, this time, we'll pack some long GS rockets for next time and see if Andrew can keep it together.  

After watching them do the course it just kept calling Raquel and I into it's rhythm and skill testing beauty.  After initially getting the handles stuck in the start gate, we broke out and Sage was already long gone, after 3 gates we had built up too much speed and in my attempts to kill speed we charged across the course and nearly went off into the trees.  I had a moment of fear, as did Raquel as we hadn't fully mastered the side slide to scrape the required speed, but as you can see we were able to stop in time.

There is very little else out there that is as much fun as skiing.  Meandering about people and objects making the run a giant play ground and feeling the small G's as one digs into a turn.  I'm fairly certain Raquel felt much of this in her 5th day on the hill.

Looking forward to our next day out!

Thank you Enabling Techologies for your great product and Debra Canada for making this happen.

Tuesday, November 14, 2017

Ski Season Almost Here!

It's been a haul getting through the fall.
So many things coming at us, yet what is most important is Raquel and her health.
Since having 7 teeth removed in September and some esophagus issues that followed to a point near breaking and contacting GI again to see about strictures she's been very healthy.
Of course little things like her fused toes and myself looking to having a couple of them cut to become open again as she's noticing pain in the little skin tomb pulling her toes back and under her foot.

But look at this smile!  Would you know?

Raquel and Cordelia hanging with friends in Whistler.

Dynamique has sent some images as the ski gets closer.

And the best photo of all from Raquel and my perspective is the frame all powder coated and perfect racer green!

I'm off to New Zealand to be part of a Debra International Congress.  I'll get to speak to what Debra Canada does for the membership and show off my super child!
A little on the busy side.  Maybe I can sit down on my massive flights and speak more about Raquel and her adaption into school......

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.


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.


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?


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!


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...