tag:blogger.com,1999:blog-1572022431990461502024-02-20T05:20:03.596-08:00The Little BikerThis blog is about me and my son. It is a soul baring exploration of what it means to be a dad to a boy with Muscular Dystrophy. And Doug, he loves motorcycles. He's my Little Biker.Camhttp://www.blogger.com/profile/06552161240451293128noreply@blogger.comBlogger89125tag:blogger.com,1999:blog-157202243199046150.post-14993903410845627742016-06-06T10:30:00.000-07:002016-06-16T10:30:51.292-07:00Ride For Doug - 10th Annual - Post Ride Thoughts<div dir="ltr" style="text-align: left;" trbidi="on">
Here are my post-ride thoughts after the 10th Annual Ride For Doug.<br />
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As the day breaks it is clear it is going to be a hot one. At 9:30, the air is already warm, and our jackets are unzipped as we leave home to set up for the ride.<br />
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10 years - and it still sends shivers down my spine to pull into the lot. The setup team is already there, pylons and ribbon out. Signs going up. This is really going to happen. We park in our usual spot. Symbolically the handicapped spot. The bright orange motorcycle in stark contrast to the blue and white wheelchair painted on the asphalt. Today is about juxtaposition. The heart breaking reality of Muscular Dystrophy against the hope and resolve of a hundred bikers.</div>
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As the lot is set up, signs fluttering in the breeze, a man approaches. He has no motorcycle to register, and the ride is still hours ahead. He lives in the area, and his grandson - just 6 years old - has just been diagnosed with Muscular Dystrophy. My heart breaks. We take some time to talk. We talk of hurt, and of hope. Of promising research for the future, and the shock of today's pain. He will put is son in contact with me, and perhaps the road our family has travelled can be of comfort and hope.</div>
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It isn't long until the first engines are heard. Echoing through the trees they approach. Some bikes one at time, others in pairs. Once in a while a club arrives together - their entry formation causing all to stop and watch as they sweep into the lot, like an eagle swooping to guard her nest. And in it all, Doug is watching. Moving from bike to bike, talking to riders. Selfies are taken. High fives exchanged. This is Doug's lot. These are his people.</div>
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As the heat turns up, the ride approaches. Doug has taken the megaphone and is rounding up the riders for the briefing. His sense of humour shines through as he instructs "Grom riders to the front because they are freak'n awesome". It is a varied group of riders. Lots of chrome and leather from the cruiser and touring crowd. Big three wheeled trikes and can-ams, and little Honda Groms, almost lost in their shadows. A handful of scratched and dirty dual sports share space with shiny sport bikes. It doesn't matter WHAT you ride today, just THAT you ride. And that today, you Ride For Doug.</div>
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Perfectly timed, a plane roars overhead. A rider - not wanting to miss their 10th straight RFD - has surprised us with a fly by. All eyes turn skyward as the return pass salutes us. Canadian Snowbirds it was not, but a heartfelt gesture by yet another friend of Doug. If you want to think of fighting Muscular Dystrophy as a battle (and it is), you're going to need your air support.</div>
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We are then off. Eighty nine motorcycles strong, leaving the lot in a show of power. One of their own has a tough battle ahead, and every one of the riders is proving they are riding with Doug. He is not alone. This next week, while at the hospital hooked up to his weekly IV, he won't be thinking about Muscular Dystrophy. He will be sharing the tales of the road. Talking about who showed up, who got a new bike this year, and planning and scheming on how to get one of his own. </div>
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The cool breeze of the open road is a welcome relief to the heat of the pavement. As the line of bikes snakes through the roads of Langley, Abbotsford, and Mission - Doug's head is turning around to catch the sight. There are some interesting looks from the cars we pass. Cool and refreshed with their air conditioning on high, there is open wonderment at what could draw these bikes all together.</div>
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Our first stop was at Cascade Falls. Crowded today because of the beautiful weather. We are met with bottles of ice cold water. Hot sweat meets cold water, and for a minute, the cold water wins. More stories are swapped - mostly from the safety of a shady tree. Smiles in spite of the discomfort of motorcycle leathers at rest in the sun. We, like the leathers, are built for the ride - not to stay idle - so the stop is a short one. First one, then the others firing up their engine, the sound echoing off the beautiful backdrop of wilderness. </div>
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In spite of the hydration stop, Doug has developed a migraine. And for the next hour he presses on, refusing to use the chase car and its air conditioned cool. He doesn't want to miss a second of this, and drawing from the strength around him, presses on. I check him regularly. We have signals, and my questioning taps are answered mile after mile with ever increasing assurance that "he's got this one".</div>
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Sweeping corner after sweeping corner fall behind us as we roar through the shadows. Cooling breeze (and some advil) have helped Doug to stay ahead of the headache. His smile is there as he looks back at each corner at the never ending snake of bikes. If only we could live in this moment the rest of our lives. There are no hospital beds, no needles, no nurses. On the road there is only peace. Beautiful scenery, close friends, and the comforting throb of the engine.</div>
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Our second stop approaches, and more cold water. Volunteers have added watermelon to the mix, and the crisp cool sweetness reminds us that sometimes you need to experience the exhaustion of heat to fully appreciate the coolness of refreshment. In the midst of pain, joy is all the more sweet. Plans are being made here. Riders exchange notes of which sections they plan to revisit. Doug finds his new Grom friends and asks if he can sit on one. I'm not sure whether to be proud or concerned as he discusses wheelie techniques with them. His feet almost reach the ground, and I can see Doug working on his angle to buy one in just a few short years when he turns 16. What I wouldn't give to be able to promise him that he could ride one. Muscular Dystrophy sucks.</div>
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Out of the lot we pull. Nearly ninety bikes in formation. Rumbling through Glen Valley, proudly proclaiming loyalty and friendship. People can sense the cause. On River Road, a motorist stops their truck to allow us to complete a left turn all together. Rewarded for their kindness by front row seat to a parade - and dozens of waves from grateful riders. The pull of an air conditioned BBQ leading us home.</div>
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As we pull back into the lot - we are greeted by a crowd of supporters. Friends and family without bikes, who join us for the post ride celebration. Row after row of returning bikes park. Each and every one with a smile on their face. Good roads for a good cause. Over a hundred miles ridden without accident. </div>
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This year, Doug's guitar teacher has put together a band. They rock the BBQ with songs right off of Doug's iPod playlist. Doug was going to join them as guest guitarist on one number, but the band and Doug practised in different keys. That certainly could have ended poorly. As a 10 year retrospective slideshow played on the big screens, the band launched into "This Old Highway", a song written specifically for Ride For Doug. I have cried many a tear to that tune. Usually on the road, in my helmet, thinking about the future. Today it brought me strength. The imagery renewed.</div>
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We finished the night off with a program, thanking volunteers and sponsors. Door prizes, and jokes. Stories swapped. The Director of Services from Muscular Dystrophy Canada then took the stage. Margot Beauchamp shared the challenges faced by families with Muscular Dystrophy. Challenges with equipment funding shortfalls. An ever increasing need, against a shrinking support base. She thanked all of us for our support, encouraging us to keep giving. Without the support of events like this, funding and programs for families will dry up quickly. Thank you friends of Doug.</div>
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But there was more. Doug's sister Sam took the mic. She spoke boldly and openly about what it felt like to be the sibling of Doug. She shared about how it felt to be in the shadow of her younger brother, and how Muscular Dystrophy has not only stolen from him, but from her as well. Things other families do together - like riding bikes or going on hikes can't happen. She talked about how the demands of medical appointments and other events cut into her family time, and how it can feel like loss. It is not often a teenager will bare their soul like this, and yet Sam lowered her walls in a room full of bikers. And by the end, many an eye was wet. She deserved the standing ovation she received. And I don't think anyone is prouder of her than her mother and I.</div>
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I wrapped things up with a few thoughts of my own. 10 years of Ride For Doug. I don't think anybody could have guessed that we'd be here. It has been a long and winding road. In the time since the last RFD, Doug has switched from weekly injections of his clinical trial drug to a weekly IV. He has had not one, but two surgeries to install ports. I have flown to Washington DC to lobby the FDA for drug approval. And we have logged more than 60 visits to Children's hospital. But Doug is still walking. For a DMD boy of 13.5 years, this is impressive. But with the sweet comes the bitter. This week, just 5 days before Ride For Doug, the trial medication he is on has been discontinued. The drug was not receiving the approvals it needed to move forward, and the drug company has decided to reallocate its resources to other Muscular Dystrophy treatment research. Days like this are why we need Ride For Doug, and the friends and family who support us. Pain and disappointment are never far away. We will be leaning on you in the coming days as we regain our footing. And after a day like today, we have no doubt that you will be there.</div>
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For 2016, Ride For Doug had two fundraising goals. The first was to support Muscular Dystrophy Canada the way we always have. For the first 9 years of RFD, we have raised between $150,000 and $160,000 for this charity. This year, we added to that total by nearly $20,000.</div>
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Our second goal for this year was to help purchase a Stair Lift for Doug in his own home. As he is getting older, stairs are becoming much more challenging. He needs a way to move from floor to floor. We have received quotes of between $23,000 and $28,000 to fit one to our stairway. Funding is available, but very limited. We have been told to expect no more than $6,000 to $10,000 between health insurance, and various charity applications. This leaves a shortfall that could be as large as $20,000.</div>
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RFD 2016 raised over $12,000 for this project. This is where words fail me. There is not a powerful enough word for "Thank You" that I can use here. It's no wonder Doug is in the constant good spirits he is. He knows who is with him. He knows that when the rubber hits the road, friends and family like this will be there.</div>
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In total, Ride For Doug 2016 raised in excess of $30,000*. And money is still coming in. Never let anyone doubt the resolve of a biker, nor their loyalty to their friends.</div>
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Thank you. Looking forward to riding with you again next year.</div>
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* note the final totals were lower than those announced at the BBQ. Some pledged money didn't arrive so the totals have been adjusted accordingly.</div>
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Camhttp://www.blogger.com/profile/06552161240451293128noreply@blogger.com0tag:blogger.com,1999:blog-157202243199046150.post-8685855089828937992016-06-05T10:34:00.000-07:002016-06-16T10:35:26.974-07:00James 4 - Perspective<div dir="ltr" style="text-align: left;" trbidi="on">
On Ride For Doug Sunday, I was asked to share a little bit about how I view the words from James 4 in light of our personal journey. This is what I came up with.<br />
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James 4<br />
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In James 4, we are instructed about “Boasting About Tomorrow”. Pastor Wes has asked me for a bit of my personal journey on trusting God with our tomorrows. What he didn’t specify is whether or not I was going to be a cautionary tale.<br />
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On February 3, 2005, our tomorrows changed forever. Our son Doug was diagnosed with Duchenne Muscular Dystrophy. While normally an inherited disease, ours was a fresh mutation. No warning at all.<br />
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In the few sentences that the doctor spoke – all of our tomorrows changed. I no longer could say “I’m going to be a Hockey Dad.” Or “we’ll go to the park and play catch.” Or “I’m looking forward to teaching you to ride motorcycles.” All of the things that we as parents said we would do evaporated in an instant.<br />
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We were not in control of tomorrow – no matter how much we boasted about it.<br />
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I’ve had plenty of opportunity to think about this. Things tend to rattle around in my head for a while until eventually some nugget of truth comes out.<br />
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For me, with this passage, that nugget is the fact that God’s perspective is infinitely different from mine. I am looking at the world with the viewpoint of “best possible life for my 81.24 years”. I measure success and failure based on what I accomplish with my time on earth. Success, wealth, fame, happiness, fulfillment, good deeds and the like measured over the span of my life.<br />
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God, on the other hand, has a different plan for my tomorrows. God looks at me and doesn’t see just a middle aged guy doing the best he can. He sees me as just beginning my infinite journey. My time on earth is just a flash in the pan compared to my time spent afterwards with him in heaven. And that changes things.<br />
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What good are success, and wealth and happiness when measured against an eternity in heaven? What value is health in a mortal body - that will be discarded shortly for an eternal perfect body? Why do we put such importance on the things of this earth?<br />
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In those moments of clarity, where I actually GET the perspective, I learn to value character. Integrity, honesty, love, perseverance. These are things that matter. They are what goes with you after you finish your 81.24 years. Strength of character and love of God. Those have eternal value. So if God is building in me by taking away _my_ plans for tomorrow – I guess that’s for the best.<br />
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When I can capture this perspective in my mind, then trusting God for tomorrow becomes a whole lot easier. When I realize that the reason Gods tomorrows and my tomorrows don’t line up is because I’m not using the right perspective to measure things, then things tend to click into place. And that brings relief and peace.<br />
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Please pray that I will learn to live in this place of perspective. God has adjusted our tomorrows yet again. On Tuesday night this week, we received word that the clinical trial medication that Doug has been on is being discontinued. We have very little information, and it’s too soon to even try to guess what this means to tomorrow – but I’m sure it will make a lot more sense when I can find God’s perspective again.<br />
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God is in control of tomorrow. I get that. Some days it’s the trust part I have trouble with. But I’m working on it.<br />
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Camhttp://www.blogger.com/profile/06552161240451293128noreply@blogger.com0tag:blogger.com,1999:blog-157202243199046150.post-19256256437170332752015-12-14T14:39:00.004-08:002015-12-14T14:39:51.789-08:00All I want for Christmas is a cure for DMD<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "Arial",sans-serif; font-size: 10.5pt;">(the following is a letter I sent to the Township of Langley Firefighters) </span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 10.5pt;">Doug
is my 13 year old son, and he has Duchenne Muscular Dystrophy (DMD). You may
have met him at the Langley Firefighter’s Appreciation Banquet this year.<o:p></o:p></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 10.5pt;">For
many years, the Langley Firefighters have joined with firefighters around the
world to raise funds to support families like ours. We appreciate it greatly.
Without the support of groups like yours, Muscular Dystrophy would be an
impossible battle to face alone.<o:p></o:p></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 10.5pt;">Since
the time he was just 8 years old, Doug has been involved in a medical study for
a new drug aimed at dramatically slowing the progression of DMD. A typical DMD
boy will transition to full time wheelchair use by the age of 11 or 12, and has
a lifespan of 20-30 years. This new drug is looking to change this.<o:p></o:p></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 10.5pt;">Doug
joined the study in the summer of 2011. For the next 3 years he made weekly
trips into Children’s Hospital for drug injections and testing. It was a
painful ordeal – each injection hurt, and the batteries of blood draws, MRIs,
EKGs, muscle biopsies, and other treatments were exhausting. But there was
promise. Where decline was expected, we found stability. Instead of moving
towards a wheelchair, Doug’s walking distance got longer and longer. His
balance improved, and at the age of 11, instead of riding in a wheelchair, he
was able to go on walks in excess of 2 miles long.<o:p></o:p></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 10.5pt;">Then,
the drug changed ownership. During that period, the study was halted, and in
the 18 months it took to get restarted, we watched our son decline. We weren’t doing
long walks anymore – a couple of blocks was Doug’s limit. He began to need to
crawl up the stairs instead of walk. Our hearts broke.<o:p></o:p></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 10.5pt;">A
couple of months before Doug’s 13<sup>th</sup> birthday, the study started up
again. Doug once again was on the medication. After a few months his decline slowed,
and after 6 months in, it seems to have halted. We have met with other boys who
have gained back some or even most of their lost time. We are hoping that as
time goes by the medication will help restore Doug’s lot time too.<o:p></o:p></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 10.5pt;">The
FDA is deliberating approval of this game changing drug. It is called
Drisapersen. They aren’t sure what to do. The effects in the statistical data
are not matching up with what families like ours are seeing. About 20 families
like ours travelled to Washington DC to make our plea in person last month. The
drug must be working for so many people to have such dramatic evidence.<o:p></o:p></span></div>
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<b><span style="font-family: "Arial",sans-serif; font-size: 10.5pt;">The FDA has a timeline
of Christmas Eve to decide</span></b><span style="font-family: "Arial",sans-serif; font-size: 10.5pt;"> on whether to allow this drug onto the market. This would
make it the <b>first</b> and <b>only</b> treatment for DMD. We need your
help to convince them that patients who have proven this drug works should
continue to have access – and to allow boys who couldn’t participate in the
clinical study access to this life saving drug. Without it, there are no other
options. This drug will not work for every DMD boy – but surely those who
respond to it should be allowed continued access!<o:p></o:p></span></div>
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<b><span style="font-family: "Arial",sans-serif; font-size: 10.5pt;">Please sign this
change.org petition.</span></b><span style="font-family: "Arial",sans-serif; font-size: 10.5pt;">
<a href="https://www.change.org/p/tonya-carlone-sos-sign-to-save-our-sons-give-our-duchenne-boys-their-christmas-miracle">https://www.change.org/p/tonya-carlone-sos-sign-to-save-our-sons-give-our-duchenne-boys-their-christmas-miracle</a>
This petition was started by Gavin’s mom. Gavin is a friend of Doug’s who was
in the same study at Children’s Hospital. His story is just like Doug’s.<o:p></o:p></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 10.5pt;">Nearly
a year ago the FDA was dragging their feet on whether or not to even review
this drug. A petition started at the Whitehouse managed to raise over 100,000
signatures over the 30 days it was open. Shortly thereafter, the FDA accepted
Drisapersen for review. Your voice makes a difference.<o:p></o:p></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 10.5pt;">Please
sign the petition and share it. I can’t think of a better Christmas gift for
Doug, Gavin, and all the other DMD boys.<o:p></o:p></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 10.5pt;">Cam
Penner<o:p></o:p></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 10.5pt;">(Doug’s
Dad)<o:p></o:p></span></div>
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Camhttp://www.blogger.com/profile/06552161240451293128noreply@blogger.com0tag:blogger.com,1999:blog-157202243199046150.post-77509562678188367822014-09-08T08:19:00.000-07:002014-09-08T08:30:04.888-07:00A Sea Story<div dir="ltr" style="text-align: left;" trbidi="on">
Let me tell you a little story about a sailing ship, on the high seas of the northern Pacific...<br />
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Once upon a time, a ship was sailing across the great ocean, a storm came out of nowhere, and after lashing the ship with wind and waves for what seemed hours on end, it swept one great wave across the deck of the ship, and faded away.<br />
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It left in its wake a tangled mess of ripped sails and ropes - the ship's dory and life rafts torn and scattered across the waves of the sea, swept across the horizon. All on board were spared from injury but one. One small boy was swept away from his family, and off the deck by the last wave, and tossed into the cold unfeeling hands of the Pacific Ocean.<br />
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He cried for help, and immediately the crew spotted his head - bobbing up and down with the waves. Terror in his eyes as he struggled to stay afloat. In the cold Pacific, it takes but 20 minutes of exposure to be fatal. After only 10-13 minutes - unconsciousness sets in - and rescue becomes more and more difficult. The clock was ticking.<br />
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The crew were first rate sailors, and immediately the ship set course to rescue the boy overboard. Immediately the captain noticed the lifesaving gear the storm had ripped away, and formed two task forces.<br />
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To the first, he assigned the task of replacing the dory. A makeshift raft, and the means to launch it from the storm torn decks high above the sea. This was to be the replacement lifeboat - for this rescue, as well as those to come in the days ahead, as the storm threatened it's return. The crew worked furiously lashing together planks and rigging pulleys and tackle. They were making progress by leaps and bounds - but their solution was going to be an hour or two away. Far too late for the boy in the ocean. Still, they threw all they had into their task. Heart, mind, and soul.<br />
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To the second task force, the captain assigned the task of doing whatever they could to keep the boy alive until the liferaft was ready. Working with the material they had at hand, they fashioned together a makeshift life preserver out of old clothes and hastily filled hot water bottles. It wasn't pretty, but it did seem to offer some buoyancy and warmth, and a mere 9 minutes after the boy was swept over, the crew managed to toss the ramshackle device near enough to the boy for him to cling to. All eyes were glued to the boy - would it be enough? The minutes began to tick by. First one, then 2 minutes passed. The boy was still afloat - now in the water for over 10 minutes. It was sometimes hard to tell, but he was not fading as fast as before. But his head still bobbed in the water - would it be enough?<br />
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Suddenly orders were shouted, and the ramshackle clump of hot water bottles and old clothes were pulled away. Pulled back up to the ship so they could be examined to see how well they were working. Alone again on the waters the boy began to struggle. Cold waves lapped over his head and his strokes were beginning to weaken. Clearly he was doing worse now, back on his own, than he was with the device. The task force argued amongst themselves about whether or not it was working, only to be called up short by the anguished wail of the boys family aboard the ship. "Have mercy!" they cried - begging the crew to redeploy the device, beseeching them to give the boy a chance. Minute after minute passed, as the crew wrestled with whether to re-deploy the only chance the boy had of surviving until the raft was ready. The decision to throw it out to him again was made - but by this time, the exhausted boy was nearing the point of unconsciousness. The boy grabbed back on, but by this time the cold sea had stolen the strength in his arms, and his leaden feet were not strong enough to hold on. And he began to slip away...<br />
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Duchenne Muscular Dystrophy steals the ability to walk from most of its victims between the ages of 10 and 13 years old. Doug was on a promising new drug from the age of 9 to 11 - and we felt it showed a noticeable improvement in his daily living strength and endurance. The problem is that measurement of results of treatments on this disease are difficult. The drug didn't meet the manufacturers hopes, so they stopped the study to "analyze the results". It has been a year now of "analysis" and despite the crying out of parents, promises of re dosing are still months away. Today is my son's 12th birthday. Our kids are slipping beneath the waves. We can see it each and every day.<br />
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Please urge researchers and regulators alike that unnecessary delay and deliberation is not just delaying the treatment and cure - it's costing us our children.<br />
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- an anguished parent.</div>
Camhttp://www.blogger.com/profile/06552161240451293128noreply@blogger.com0tag:blogger.com,1999:blog-157202243199046150.post-87990572124271261172012-06-04T11:36:00.000-07:002012-06-04T11:36:44.043-07:00Ride For Doug 2012 – A look in the rearview mirror<div dir="ltr" style="text-align: left;" trbidi="on">
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Today is the morning after the 6<sup>th</sup> annual Ride
For Doug. What an experience. The day starts in an empty parking lot. A cool breeze blows, and the clouds tease us
with hints of rain. A deep rumble
begins, but rather than rain bringing thunder, it is the sound of riders
beginning to arrive. Black leather,
shining chrome. The smell of power. I close my eyes, taking in the sensations, holding the hand of
the boy that made it happen. Today is
Doug’s day. These are his friends
arriving.</div>
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Bike after bike arrives.
Riders from all points of the compass, harking news of the weather. A drizzle here, a cool breeze there. Nothing that can stop these riders from coming. They are here for Ride For Doug.<o:p></o:p></div>
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Doug is on cloud nine.
He wanders from rider to rider with a keen sense of purpose. He remembers who has come before, and
welcomes those who have come for the first time. Bikes are admired, and many questions are
asked and answered by patient bikers with soft hearts. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And still they arrive.
The black and chrome is punctuated by bright flashes of colour. It doesn’t matter what style of bike you ride
today. Long sweeping cruisers
intermingle with high strung sportbikes, a peppering of dual purpose bikes
providing a dirty contrast to the gleam and shine. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Once assembled, the ride is ready to move out. Eighty-eight bikes speak with but a single
voice. Eighty-eight bikes forming a
column of support stronger than any bridge girder, and stretching further than
the eye can see. Doug rides up at the
front with me. His sister Samantha, on a
bike beside him. His mother Allison, on
a bike behind him. I can feel him taking
it in, turning to watch the long snake of bikes travel up and down the
undulating road. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This is the point where I am usually moved to tears. This show of support strikes deep to the
core. There is nothing in the world that
can match such an overwhelming experience.
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And it’s not just the riders. To get to this point has been hours and hours
of work by a multitude of volunteers.
Showing their support with the horsepower of their actions. They are with us on the road – perhaps not on
two wheels, but definitely in spirit.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We head through the roads of Langley, Abbotsford, and cross
into Mission. The weather is holding,
the leather staying dry. Our first stop
approaches.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
At the BC Hydro Recreation Area by Ruskin dam – the riders
are greeted by an enthusiastic team of volunteers. Pointing the way and cheering us on. I can feel Doug’s face beaming behind
me. Nearly a hundred bikes stream into
the lot, and the riders dismount for a stretch.
Stories are being shared with friends and strangers alike, and smiles
abound. The volunteer team at the rest
stop provides water – enthusiastically delivered to the riders by two boys
around Doug’s age. This is not their
first Ride For Doug either. These bearers of water have volunteered before, and
have taken the spirit of The Ride throughout their year – bearing the flag of
Muscular Dystrophy on behalf of Doug.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Another highlight takes place here. Doug’s sister, Samantha, and her grandmother
have spent the weekend baking cookies.
Riders who are RFD veterans make a beeline for her basket. The smiles grow. Three hundred cookies are
consumed faster than the starting grid at a Grand Prix race. It seems Samantha
has found her own way to support Doug, and Allison and I feel a swelling of
pride as sibling rivalry takes a back seat – at least for today. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Back onto the road we go.
Twisting and turning through Mission and some of my favourite
streets. The pavement here isn’t as
smooth, and the corners are tight and blind.
These roads remind me of the challenges that Muscular Dystrophy families
face continually. A bumpy ride through
life, never knowing what is around the next bend. Gripping the bars and doing our best to
navigate through a never ending series of challenges. But then I hear it – the sound of exhaust
echoing off the hills beside the road.
The thunder that tells me that I’m not riding alone up here. My loved ones are close, and the community
has gathered to ride behind me. We can
do this together.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
An hour or so later, we pull into the second rest stop. Through a quirk of fate, some of the riders
near the back took a shortcut and ended up here first. We arrive to the sight of 50+ bikes lined up
and waiting. Their riders just
dismounting. We share some laughs, and
swap some stories of the road. New
friendships are forged in the common experience. Happy volunteers spread water to thirsty
riders, and their vibrant excitement (and fluorescent shirts) raise our spirits
further. These are some of Doug’s SEAs
from school – joining in the celebration, and showing that they too are on
Doug’s team fighting Muscular Dystrophy.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
One more leg of the ride to go. Another mile long rolling demonstration of
resolve. “We must beat Muscular
Dystrophy”. That is what the engines are
saying. “We must beat Muscular
Dystrophy”. My heart is strengthened
with each mile. How can we not beat it
with support like this? What disease
dares to stand a chance in the face of Doug and his biker army?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The miles fall away, and almost too soon we arrive
back. The sun, greeting us as it pushes
away the last of the clouds. But not just the sun - the parking holds another
radiant sight. Friends, family, and a host of others greet the returning riders
with standing applause. As the bikes
roll in, one after another, their engine still singing their song, the riders
are treated to a royal arrival. Because
they are all heros. Doug’s Heros.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We move inside to a BBQ.
A welcome sight to the hungry riders.
Tables fill with a mixture of over 300 riders and non-riders alike, and
stories are swapped. Bridges are built
across cultures, and friendships are established in a common cause. The mosaic
of people is as colourful as the bikes parked outside. We have riders, extended family, friends. Nurses and researchers from BC Children’s
hospital. Doug’s classmates, teachers,
and administration. Local government is
represented. We have families in the
midst of their own battles with Muscular Dystrophy, and those who have lost
loved ones to the disease. Doug’s new
friends are welcomed, and added to the mix.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We celebrate with food, and with door prizes. We recognize the generosity of our volunteers
and our sponsors – many of whom actually ride with us. I have the opportunity to share a bit of what
it is like for our family, as we are currently involved in a research project
to treat Duchenne Muscular Dystrophy. I
think I managed to hold back the tears this year, mostly. This year, the proceeds of the ride will be
used to fund research for a cure to Muscular Dystrophy.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And then, it is back to the parking lot where we
started. Doug insists on seeing each
bike off. Thanking them for their
support. For the courage to face another
year. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As the engines fade away, their cry can still be heard in
the distance. “We must beat Muscular
Dystrophy. We must beat Muscular
Dystrophy.”<o:p></o:p></div>
</div>Camhttp://www.blogger.com/profile/06552161240451293128noreply@blogger.com1tag:blogger.com,1999:blog-157202243199046150.post-79927887837880462592010-03-01T08:52:00.000-08:002010-03-01T09:11:28.685-08:00Olympic DreamsVancouver has just concluded hosting the 2010 Winter Olympic Games. Along the way we've watched the city, and the country come alive. We've celebrated together, we've cried together, and we've done a lot of holding our breath in anticipation. The hopes and dreams of the athletes were worn proudly on OUR sleeves, as we joined them in the worlds largest celebration of sport.<br /><br />And at home, the children of our nation began to dream. Kids from all walks of life instantly became speed skaters, and skiers. Ball hockey games awarded the Gold Medal - Lord Stanley's Cup lying dusty on a back shelf in the garage. Skateboards came out, carving graceful arcs down the steepest driveway in the neighbourhood, in search of the next snowboard parallel slalom medal. People began to dream, and to dream big. The message was there - put your whole heart, your whole mind, and your whole body into a dream, and watch the world cheer you on. Nothing is impossible to the human spirit. Nothing.<br /><br />At our house, the dream was stirring too. Our family watched the games daily. We even made it out to a couple of events. Our kids saw the flame run past our house - igniting the passion and the dream.<br /><br />And so it was with no large surprise that we began to hear about Olympic sized dreams. One day, Doug was spotted standing at the top of the stairway. He had hot wheels race tracks strapped to his feet, and a Viking helmet perched high upon his head - brandishing a sword as a pole. He proudly announced to the world that he was going to be an Olympic Alpine Skier. My heart began to swell with parental pride at his dream, only to be burst an instant later with the realization that this dream will never be. No matter how much heart, or mind he puts into it, his body just won't be there. I know that for most of us, the actual chance of having an Olympian as a child is so tiny that it doesn't really matter anyways - but the sharp pain of KNOWING that it won't happen is still there.<br /><br />Olympic sized dreams - human sized reality.Camhttp://www.blogger.com/profile/06552161240451293128noreply@blogger.com1tag:blogger.com,1999:blog-157202243199046150.post-54948129357040919332010-01-04T10:15:00.000-08:002010-01-04T11:08:38.839-08:00Beginning with an Ending2010. January. A time for new beginnings.<br /><br />After the kick in the teeth year that 2009 turned out to be, I was actually looking forward to 2010. A fresh start always brings with it a little bit of hope. The chance that this year won't suck as much as the one before. A symbolic chance to start again. A New Year's resolution to live more, love more, care more. And yes, to blog more. A fresh page, covering over the deep ink blots of the previous 365 days.<br /><br />2010 was but 3 days old, when Ryan left. Ryan was a young man, fighting the same battle as Doug with DMD. On January 3rd, 2010, Ryan's battle ended. Ryan was a young man characterized by courage, quick wit, and a friendly sense of humour. Muscular Dystrophy claims another young life, barely in its prime.<br /><br />I don't really know what to say. This strikes close to home. Of all the roads in life you can travel, Ryan and Doug share similar paths. Ryan, up ahead, breaking new ground, and Doug, with his own young courage, following along. They only ever met once - Ryan and Doug. It was always on the "we should get together" list. Ryan was looking forward to "showing Doug the ropes". Instead of being self absorbed, Ryan wanted to pass along his knowledge and experience, to lighten the load for those coming behind. Selfless, honest, caring. And now, it's too late.<br /><br />I should know by now that life is a finite resource. Whenever those you care for leave this earth, the bitterest pain is the realization that there will no more chances to get together. That postponement of that summer BBQ has just become permanent. It always makes me think about how the important things down here on this spinning globe are people. It makes me re-evaluate my priorities again. Why am I not spending more time with PEOPLE, building friendships - laughing, loving, and sharing pain? What else is taking my time that seems so important?<br /><br />Ryan, I barely knew you - but I miss you. I knew you mostly through your dad, and the conversations we would have. I shared your triumphs and your struggles vicariously through the words of your family. And now, I too share their loss. <br /><br />Farewell Ryan.Camhttp://www.blogger.com/profile/06552161240451293128noreply@blogger.com0tag:blogger.com,1999:blog-157202243199046150.post-65271066931907730642009-05-08T08:47:00.000-07:002009-05-08T09:24:11.942-07:00The Little Things in LifeKids, cover your ears. What I'm about to talk about is something you will find deeply disturbing. The next paragraph is for the grown ups...<br /><br />Allison and I just came back from spending a week in Disney World. Staying "on property", living and breathing "mouse" for a whole week. Without the kids. Yes, you heard me right, we went to Disney World for an entire week and left the kids at home. It <span style="font-weight: bold;">can</span> be done, and it was <span style="font-weight: bold;">wonderful</span>. Most people we told this to were somewhat incredulous that we would even think of doing this - for about 5 seconds - then they started to smile, and say "I wish I could do that"...<br /><br />(ok kids, you can read again, the "disturbing" part is over)<br /><br />One of the things you can't help but notice in this environment is that Disney knows details. They spare no effort or creativity is making sure that the entire experience is totally immersive. Every corner of the property is meticulously decorated and themed. When standing in line for the Mt. Everest line, it's often hard to tell which part of the "museum" you're in is real artifacts and which are fictional. Even the ropes and barriers to separate the line look like they are straight from the Himalayas.<em></em> And as you roam the grounds, you can't help but marvel at the attention to detail. The employees, rather Cast Members, are all fluent in the language and mannerisms of their particular attraction. Their enthusiasm and commitment to even the small details of language and actions helps to pull it all together. And when you think of it, the details - The Little Things - are what make it Disney World, and not just another theme park.<br /><br />Life, I'm discovering, is kind of like that. We focus on the big things, the attractions, and move from ride to ride with as much ruthless effeciency as we can manage. We are always looking forward to the ride that is coming, or looking backwards and what we just finished. Always impatient for what is yet to come. But how often do I find myself just looking around and admiring that Disney Detail that surrounds me? The attractions themselves last but a few moments. Most of life is spent standing in line. Fortunately, we are surrounded by marvelous details - meticulously crafted for our benefit. We need to take the time to soak them in, and explore where we are. Today.<br /><br />Some of the attractions that I'm standing in line for aren't really all that much fun. I'm <span style="font-weight: bold;">not</span> looking forward to getting to the front of the line. When I look down the road at the "milestones" of DMD, life can get a little heavy. But this is a line up that I can't get out of. There's no emergency exit here. But our Great Creator has spent extra time on The Little Things here. When I pull myself together enough to look around, I see that he has put many more equisite details in this line than in any other I've stood in. The simple experience of being here is moving beyond words. Cast Members help out well beyond the call of duty - and I thank you all. This line up is designed for right now. The ride can wait - while I marvel in The Little Things.Camhttp://www.blogger.com/profile/06552161240451293128noreply@blogger.com2tag:blogger.com,1999:blog-157202243199046150.post-34797796149971827762009-04-20T09:24:00.000-07:002009-04-20T09:50:14.884-07:00From our weaknessLast week at the kids school was Jump Rope for Heart. This is a fund raiser for the Heart and Stroke Foundation. To raise money, the kids jump rope for an hour in the gym, and collect pledges. The jumping isn't for an hour straight - they take turns in "teams", with each kid jumping for a minute at a time, and then resting for a couple of minutes before their turn again.<br /><br />I dropped in to check up on Doug. (Allison had already volunteered with Samantha, who had jumped earlier in the day)<br /><br />As you probably have figured out by this point in my blogging life, Doug isn't really a prime candidate for jumping rope. He doesn't have the strength in his legs to jump off the ground high enough to get a rope underneath - let alone to actually swing a rope at the same time. But there he was, taking his full turn in his team. And with the biggest determined grin on his face, he jumped. The rope made deliberate swinging motions, and his feet all but left the ground. Calling the motion skipping would be akin to calling my playoff goal celebrations "ballet" - but there was my Little Biker - giving his all for the cause.<br /><br />It wasn't his ability that moved me that day, it was his willingness and determination to act in spite of his weakness. And it was his weakness that made <span style="font-weight: bold;">my</span> heart all the stronger. There was no "I can't do this", no copping out with a perfectly valid excuse - just a determined response to answer the call.<br /><br />How much could I improve my life by taking his point of view? Instead of looking for the seemingly abundant reasons <span style="font-weight: bold;">not</span> to do things, why don't I just pick up my rope and jump? I think that many of us struggle with the misconception that we have to do things perfectly right, or they're not worth doing at all. Often, the fact that we are <span style="font-weight: bold;">not</span> the right person to do the job is what makes our help all the more meaningful. When we're going through rough patches in life, what we crave more than anything else is for someone to struggle through things with us. But we get too caught up in our own weaknesses and struggles to remember this simple point. We focus on ourselves, and all the things we <span style="font-weight: bold;">can't</span> do - when really, the power to impact the lives of our neighbours lies in our very struggles.<br /><br />Pick up your rope, and jump.Camhttp://www.blogger.com/profile/06552161240451293128noreply@blogger.com1tag:blogger.com,1999:blog-157202243199046150.post-23102479577263655092009-02-01T14:22:00.000-08:002009-02-01T14:47:03.703-08:00On the precipice of chaosOne of the things I have talked about before is how much paperwork Doug generates. Every program has it's own set of reports. Some are incoming status reports of how things are progressing, and some are outgoing status reports of how we are directing funding or applying for new or updated supports.<br /><br />Either way, we end up with a lot of paperwork. Allison is the consummate organizer, and we have several nicely categorized binders of stuff. It's all accessible and at our fingertips, and we (or at she) can pull out virtually any document within a minute or two. It has been very successful so far - as when we are at a meeting and a doctor asks about what another specialist said in their last report, we can pull it out of the backpack and provide instant information.<br /><br />Except we're outgrowing the binder system. They are full to overflowing, and getting really really heavy to carry around. I don't think the system can handle too much more "growth". I feel the need to modernize.<br /><br />I want to be able to scan and store all of the paperwork electronically. We'd archive the paper copies, and just go to appointments with the laptop. Ideally, I'd like some sort of document management system that would convert the paper to pdfs, and then index them by content so that we could search for files either by categories and dates, or by the contents of the files themselves. And, as more and more people request copies of files, I'd like to be able to track who has been given which files. Data privacy is very difficult to achieve retroactively.<br /><br />I'm sure that such an application exists, but I've got a few new hopes as well. I'd like to be able to have it :<br />- store contacts and appointments<br />- link contacts and appointments to the reports and paperwork in the document manager<br />- not store things in proprietary formats - 10 years from now, I may need to get at the data without the applications<br />- be open source applications - I can't afford to maintain a multi-million dollar application for this<br />- be able to redact files so that I can give different versions of reports to different people depending on their needs<br /><br />And then - being a dreamer - I have visions of something like this being made into a free distribution. A free, open source software package designed to run on a cheap laptop (like the EeePC) and made available to all of the others who find themselves in the same boat we do.<br /><br />So, if any open sourcer's want to flex their skills on building a distribution, talk to me. I'd be happy to provide vision and direction to the process...Camhttp://www.blogger.com/profile/06552161240451293128noreply@blogger.com0tag:blogger.com,1999:blog-157202243199046150.post-24288192432311149372009-01-20T10:11:00.000-08:002009-01-20T10:19:01.873-08:00AloneSadly neglected<br />alone I sit.<br /><br />The world rushing by<br />will no-one stop<br />and pause<br />to hear my cry?<br /><br />Look at me!<br />I offer a shoulder to cry on<br />a world full of experience<br />to share your pain.<br /><br />But you walk on.<br />Leaving this blog to cry.<br />Never updated<br />Slowly decaying,<br />Fading off forever.<br /><br />(ed: hopefully I'll update my blog more this year. If I don't, it may write some more poetry again, and we certainly can't have that.)Camhttp://www.blogger.com/profile/06552161240451293128noreply@blogger.com3tag:blogger.com,1999:blog-157202243199046150.post-80583804723007842502008-08-11T04:01:00.000-07:002008-08-11T05:59:06.435-07:00Ride For Doug 2008Well, another year has come and gone for <a href="http://www.ridefordoug.com/">Ride For Doug</a>. And just like last year, my good intentions for blogging my thoughts and feelings fell by the wayside. Don't get me wrong, it wasn't that I didn't feel like sharing them with the world - it's just that there was so much to DO, that I didn't have time to ponder on the experience of it.<br /><br />Since the last time I blogged, I've:<br /><ul><li>finished organizing and holding the ride</li><li>tied up all the loose ends after the ride</li><li>gone out to Newfoundland for a family wedding</li><li>done a 2 week vacation in the Maritimes</li><li>completed the first third of a month long <a href="http://en.beijing2008.cn/">business trip</a></li><li>eaten a scorpion</li></ul>I had really meant to include more about the experiences of organizing - but by the time I finished working on it - the last thing I wanted to do was update another website. If you haven't yet been to the ride website do it. <a href="http://www.ridefordoug.com/">www.RideForDoug.com</a> You'll find photos, and a great slideshow set to a song composed specially for the day.<br /><br />Oh yeah - Doug made the front page of the local paper. The WHOLE front page. To read the stories, go the the <a href="http://www.ridefordoug.com/index.php?option=com_content&task=blogcategory&id=21&Itemid=39">In the News</a> section of <a href="http://www.RideForDoug.com">www.RideForDoug.com</a><br /><br />Anyhow, as I write this I am sitting in the Main Press Centre in Beijing, hoping nothing important breaks...Camhttp://www.blogger.com/profile/06552161240451293128noreply@blogger.com2tag:blogger.com,1999:blog-157202243199046150.post-82898025505351500732008-05-04T21:27:00.000-07:002008-05-04T22:27:18.383-07:00How dedicated are we?Today in church we had a child dedication service for some friends. This is a special morning, where parents bring their new children for a symbolic ceremony of dedication. Basically, the parents make a public promise that they will raise this new child in a Godly manner. Its really more of a parent dedication than a child one. At then end, the congregation is asked if they too will dedicate themselves to standing behind the parents in the raising of the child, and we all stand to show our support.<br /><br />Its this last bit that draws my attention today.<br /><br />I often wonder, as I stand amongst the throng, how many of us really give this a second thought when we are asked to respond. We stand in unison almost as if we are actors standing up on cue. Have we really considered what is being asked of us? Have we measured <span style="font-weight: bold;">our</span> dedication and decided that yes, we will do it?<br /><br />Imagine, if you will, what that child is thinking as the question is asked:<br /><br /><span style="font-style: italic;">Will you stand behind my parents as they raise me? Will you call and ask my mom if she needs someone to keep an eye on me as she catches a nap after a long night up? Which of you will be there on Sunday morning when I come to the nursery at church? Who will make sure my first interactions with my peers are constructive and positive? </span><br /><br /><span style="font-style: italic;">When I'm old enough for Sunday School, will you be my teacher? Will you take the time from your busy schedule to show me that yes, people outside my family genuinely care for me too? I'll be in Sunday School for more than half a dozen years - will enough of you be there? As I make the transition to my teens, who will be an example for me in such turbulent times? Do any of you have time to be a youth sponsor? Who can I turn to for a listening ear and a shoulder to cry on when my parents just don't get it? Which of you will I trust enough?</span><br /><br /><span style="font-style: italic;">Who will help me as I struggle through decisions of school and career? Which of you will let me look to you for guidance and examples of how to live life? Who will encourage me on my first missions trip? Which of you will help me find funds to do it?<br /><br />Which of you will spot my talents and abilities, and encourage me? Who will give me the chances to try and to fail without judgment? Repeatedly? Who will mentor me? Hold me accountable? Help me find my place in the work of the church?<br /><br />Who will come alongside with a word of encouragement as I raise my own children? Which of you will help me through the sleepless nights and anxious moments? Who will be the good example that my children look up to?<br /><br />And when I am older, who will take care of me? Who will make sure I have a way to get to church when I can no longer drive myself? Who will be there as the years of life take their toll upon my mortal body? When I no longer remember your name, will you still love me?<br /></span><br />It has been said that any village can raise an idiot. I think it takes the <span style="font-weight: bold;">entire</span> family of God to raise a Godly child these days. This is what <span style="font-weight: bold;">I</span> meant when I stood up today. How about you?Camhttp://www.blogger.com/profile/06552161240451293128noreply@blogger.com3tag:blogger.com,1999:blog-157202243199046150.post-63921882185285791032008-05-02T14:26:00.000-07:002008-05-02T14:51:25.396-07:00But what about me?Some of you will be able to relate to this one. If you are an older sibling of someone with a disability, I'd really like your input.<br /><br />There's been an extra amount of busyness around our house this last month as preparations for the second annual Ride For Doug take place. There are e-mails to send, phone calls to make, things to decide, and stuff to organize. But out of all that noise is a small voice crying out "But what about me?"<br /><br />This time, it's not Doug. It's Samantha. She sees the hustle and bustle through the eyes of an 8 year old. She is watching what looks like a disproportionate amount of our time go into Doug's life. How does one explain to an 8 year old that a specialist appointment isn't really the same as going to the park, and that RFD is about helping others - not just Doug.[1] We really DO spend time with her, but like all kids - it doesn't add up the same for her as it does for us.<br /><br />I like to think that we are spending our time fairly between the kids, but what kid really ever can get enough attention? Samantha loves to be loved. Spend time with her, and she just soaks it in - she can't get enough of it. But what is it like to view things through her eyes? As time goes by, Doug will need more and more medical and support attention. How can we make this not be a threat to her? <br /><br />One thing that we've tried to do is set up a time once a week where Doug is out with a respite worker. During this time, we do something with her. Sometimes we go to the library, sometimes we just sit and play video games together. Hopefully (if the weather ever warms up) I'll get to take her on some father-daughter evening rides. But I'm a bit lost here. How can I make her realize that we love her just as much, and that we ARE spending time with her?<br /><br />I'm hoping that some of you who have been through this can let me know what's going on in her head and what might work. Please leave comments here so others in the same situation can benefit from your wisdom.<br /><br />[1] The title of the ride is catchy, but a bit misleading for a kid.Camhttp://www.blogger.com/profile/06552161240451293128noreply@blogger.com1tag:blogger.com,1999:blog-157202243199046150.post-75949417031252830052008-04-14T13:59:00.000-07:002008-04-14T14:07:34.187-07:00One for the RoadThis last weekend marked yet another milestone in the life of The Little Biker. Yes, we finally have the biker's equivalent to baby's first steps.<br /><br />Doug went for a ride with me. We saddled up a couple times over the weekend, and I spent several hours alternating rides between Doug and Samantha. Both of them love riding. Samantha's latest favourite part is "the freeway". Doug, he's still fairly speed limited, but his favourite parts are "the corners". I can practically feel my back getting sunburned from his radiant smile.<br /><br />After his first ride, I asked him "So, how was that?". He thought about it for no more than a second or two and quipped back "Better than Thunder Mountain."[1]<br /><br />And isn't that just what life is all about?<br /><br /><br />[1] <a href="http://disneyworld.disney.go.com/wdw/parks/attractionDetail?id=BigThunderMountainRailroadAttractionPage&bhcp=1">http://disneyworld.disney.go.com/wdw/parks/attractionDetail?id=BigThunderMountainRailroadAttractionPage&bhcp=1</a>Camhttp://www.blogger.com/profile/06552161240451293128noreply@blogger.com0tag:blogger.com,1999:blog-157202243199046150.post-2165202002078949702008-04-10T13:52:00.001-07:002008-04-10T14:46:16.790-07:00The Price of AdmissionWhat could be more relaxing at this time of year than a vacation? A family vacation. To Orlando. In theme parks. With in-laws...<br /><br />We just got back from a family trip to Orlando with Allison's family. That town stands as a bastion of capitalism. Swamp land transformed into acre after acre of theme parks - each packed with thousands upon thousands of people. You can almost hear the cash being consumed - it's a dull whooshing sound starting at your back pocket, and heading out. It resonates not only from you, but from all of those around you. The entire GDP of Canada run through Visa every day.[1]<br /><br />If you want to go to play in the Mouse's House, you have to pay the price. In our family's case (being cheap Mennonites and all) the price was probably $400 with a meal and a few little souvenirs.[2] But tens of millions of people do it each year. You see - if you want to have the big league fun, you have to pay the Price of Admission.<br /><br />The key to enjoying Disney World is forgetting what you left at the gate. That is old news. It's your old life. Your new life takes place within the gates. Enjoy the sparkling, clean scenery. The complete lack of litter. Marvel at the attention to detail as you wait in endless lineups for rides that amaze. Watch the eyes of the children light up as they get to meet Mickey and Minnie in person. It's a whole new world, and it's only available to those who have paid the Price of Admission.<br /><br />The fastest way to wreck this whole experience is to look into that back section of your wallet at the receipts. Grumbling about how much it cost once you've already gone in only shatters the magic, and brings you down. You're inside, and Mickey doesn't like to give refunds. So, my fellow Magic Kingdom adventurers, keep your chin up and make the most of it. There's rich experiences in the offing, and living in the past will only make you gloomy.<br /><br />When you sit down and think about it, life is kind of like that. Everything has a price. Sometimes it's money, sometimes it's time. Other times, the price is pain and sorrow. Sometimes we choose, and sometimes it is chosen for us. But whatever the circumstance, things only seem to get worse when you focus on what you left at the gate. Life's rich experiences await those who have paid, and who are willing to enter with their eyes wide open. And they're only for those who have paid the Price of Admission. So stop whining about the cost - it's old news. Open your eyes to the wonders around you. Live life in the theme park you're in for all that you are worth.<br /><br />The Price of Admission. There's yet another angle to consider - the heavenly dimension. Who can relate to someone in pain better than someone else who has been through it? Who can share God's love with the suffering better than those who are right there in the trenches too? How much more powerful is the love and compassion of a friend who has suffered the same loss? If we want to be the hands and feet of Jesus, we need to pay the Price of Admission - whatever it might be.<br /><br />Me? I'm looking forward to the fireworks.<br /><br /><br />[1] Statistic completely made up, but you get the point.<br />[2] Just under $300 for admission alone. Per day!Camhttp://www.blogger.com/profile/06552161240451293128noreply@blogger.com0tag:blogger.com,1999:blog-157202243199046150.post-20782020487341322242008-03-06T22:08:00.000-08:002008-03-06T22:31:41.414-08:00Where did February go?Ok. I know February is a short month, but this is ridiculous. One of my goals this year has been to be more regular with my blogging. It helps clear my head. It's now March, and I'm on my second session of the year. The spiders must be building webs on my site by now.[1]<br /><br />I'm learning more and more about myself. This, I think is ultimately good - but it is a little depressing to keep realizing I'm learning the same lessons. The topic, once again, is multitasking. I've got so much on my plate that I'm spending too much energy juggling it, and not enough energy <span style="font-weight: bold;">doing</span> it. It seems that the more I take on, the less time I spend doing any of it.<br /><br />The realization hit me again today when I was watching Doug lying on the floor of my office. He was so wiped out from the day that all he wanted to do was lie on the floor and sleep. He was cuddled up on a stuffed snake, and didn't even say a word when our rabbit hopped over and started to nibble on his hair. He was just too pooped to care.<br /><br />Why? Well, his day started with a road trip with Kelly to his riding class. A morning of riding where Doug's balance and core strength were exercised on horseback. Not only does he have to control the horse, but he has to complete obstacle courses, pick up and drop off items, and generally make several volunteers smile all at once. Then, back into the car for a quick stop at home for some food, and off to school. And we all know how hard school can be for a Kindergarten kid - all that cutting and drawing, and colouring, and oh yes, a Speech and Language session with the specialist. Then, off to home and an energy boosting after school snack. Good thing too, since another of his "ists" arrives at 3:00. More drawing, printing, sequencing and other fine motor skills. A bike ride in the back path? Sure, why not. A kid needs his exercise, right? By the time 5:00 rolled around, Doug was done.<br /><br />But I sure made the day efficient, didn't I? Good old dad knows how to pack a schedule for minimum wasted time.<br /><br />Slow down. Smell the roses. Watch your kids grow.<br /><br />[ps] Funny story. Today, we got a phone call. Doug has finally made it to the top of yet another waiting list. We were finally able to book an appointment to get him assessed for another program! Better yet, it's the program that he just finished his 19th week of... (I wonder if we'll get in.)<br /><br />[1] geek humourCamhttp://www.blogger.com/profile/06552161240451293128noreply@blogger.com0tag:blogger.com,1999:blog-157202243199046150.post-60615805987849264402008-01-13T15:14:00.000-08:002008-01-13T16:12:30.588-08:00New BeginningsJanuary is the time for New Beginnings. Society gives us the green light for these few weeks after New Years to shed our old mistakes, and begin anew. Our past is left aside, and the world cheers us on as we start fresh. New Beginnings.<br /><br />On Friday, Doug took delivery of his first wheelchair. New Beginnings. He was very tentative at first. He let Freddy[1] go first. Once Freddy gave the thumbs up of approval, Doug allowed us to help him in. He was not at all sure about this. Neither was I. He's still walking, running, and almost jumping. What are we doing with a wheelchair? Take this thing away and give it to someone who needs it! But he does need it. Long distances are tiring for him, and he's too old for the stroller. Seeing him sit up in the chair makes his eye-contact height much more appropriate. He's not a little kid anymore. I'm already beginning to see a few more things that will change. Our walls will have some new marks - Doug's steering is pretty darn good already, but those footrests are not exactly 5mph bumpers. Some furniture will need to be moved to allow our new Mario Andretti space to practice. On the other hand, some things will be staying the same - for now. Doug doesn't need the chair for his daily living yet. He will still be walking whenever we can let him. We'll use his chair for times and places where his endurance simply isn't up to the task. New Beginnings.<br /><br />Allison commented to me that it just looked so wrong to see such him sitting there, dwarfed by the size of his chair. I can see what she means, but I think I see it a little differently. What I saw there was the captain of a starship. Sitting up tall in the big captain's chair - finally in charge of his world, and all that he could see. New Beginnings.<br /><br />We had a sermon in church today about something I've blogged about before. Part of it was about making the most of now - since the past cannot be changed, and the future cannot be experienced. It was given by a friend - a friend who lost his wife to cancer last year. New Beginnings. I was challenged today about how I am living my life. I'm pretty sure I'm not living in the shadows - slinking around and doing evil without regard to my fellow man. I'm not as sure, however, if I'm basking in the radiant heat that the full sunlight of God's love is. I think I may be spending my time in what were referred to as Borderlands. A belt of trees between the bright sunlight of God's love and the dark depths of evil - a place where "the good" go to hide from God, but not completely leave the light that filters through the trees. In my life, this takes the form of living day by day - fending off the crisis of the day, and simply being content to reach the end of the day without a mental meltdown. No goals, no joy, simply existence. His sermon contained a call to action. A call to take what we know about God in our heads, and apply it to our hearts. To take what we know about loving our neighbours and to turn it into the <span style="font-weight: bold;">act</span> of loving our neighbours. And to do it now - not tomorrow. At the end of his sermon, Peter issued the call - come forward if you want to make a statement that you are making a fresh start. I'm always uncomfortable at those sorts of challenges - I never know if I'm doing/not doing for the right reasons. Today was the same - only different. I did not hear a clear call to come forward. What I heard was that staying where I was was not an option. I could go forward, or I could go out the door at the back - but the status quo was not acceptable today. I went forward. New Beginnings.<br /><br />How this will play out, I don't know. But 2008 is a fresh year. I can't change yesterday, and I can't do squat about tomorrow. But I can live right now. New Beginnings.<br /><br /><br />[1] His favourite companion - a stuffed frog.Camhttp://www.blogger.com/profile/06552161240451293128noreply@blogger.com0tag:blogger.com,1999:blog-157202243199046150.post-40313081259135149532007-12-03T12:35:00.000-08:002007-12-03T12:53:36.187-08:00Biker Down - But not outIt's been a rough couple of weeks for my Little Biker. He's had a few spills, and taken a few lumps.<br /><br />It started with a tumble off a bed while watching TV. Apparently (according to his sister) he laughed himself right off the bed over something he saw. Unfortunately, the laughing stopped when he banged his arm on the floor. Tough little guy though, he got over it in his typical fashion, but still was favouring it. I had sent Allison off for a week of scrapbooking, so Dr. Dad was in charge.<br /><br />Dr. Dad waited a few more days, and realizing that he wasn't using his left hand at all (he's left handed), took him to the clinic for a look over. The doctor tried a few things, but couldn't narrow down where or how bad things were. He gave us a week to watch it to see if things improved. They didn't. So we piggybacked another doctors appointment onto the annual (yelp) flu shots. Our family doctor suspected an elbow, so we went off for X-rays. Sure enough, he's cracked something in his elbow. No cast necessary, just "take it easy".<br /><br />Right. Ever lived with a 5 year old and an 8 year old before? Let's just say that there have been more than a handful of "bumping the injury" incidents.<br /><br />Anyhow - fast forward to this weekend. Out celebrating a birthday with friends (Happy Birthday Katie!) and Doug takes a tumble. On hardwood. Fortunately, it didn't jar his elbow too hard. Unfortunately, this was because he didn't put his hands out to catch himself. He hit the floor with a resounding smack - teeth first. Again, the tough little guy only cried for a few minutes, but the blood was flowing. Did his teeth still look straight? Allison figured they weren't. I thought they looked close enough. Today, we got the dentist's opinion. "Impacted tooth". It's been pushed up.<br /><br />The good news is that Doug is almost at the loose-tooth stage of life anyhow. This was about the "safest" time he could have done this. The roots of the baby teeth are pretty much dissolved with the adult teeth coming, and the adult teeth have a hard crown all ready to go. In between, there is extra space and cushion. Long term prognosis is very very good. In the short term, there are several things that might happen. The tooth may be pushed back into place by the swelling, and things return to normal. The tooth may stay recessed until it naturally loosens and falls out. The blood vessels to the tooth may have been damaged, in which case the tooth may take on a grey shade - until it loosens naturally and falls out. Or, the swelling may increase too much, and the dentist may have to pull it. Odds are on the side of the first few alternatives.<br /><br />Bottom line, in a week or so, he should be able to bite and chew with his front teeth again.<br /><br />Who said life was safe anyways. Good thing kids are built tough. Yeah, he's been down a few times this month - but like all good bikers Doug will be "shiny side up" before we know it. At least that's what <span style="font-style: italic;">I'm</span> telling myself.Camhttp://www.blogger.com/profile/06552161240451293128noreply@blogger.com1tag:blogger.com,1999:blog-157202243199046150.post-28937241270882921272007-11-26T10:29:00.000-08:002007-11-26T10:49:44.468-08:00Why all the suffering?A couple of weeks ago, I got an e-mail from a friend. She is suffering emotionally, and it is a challenge just getting out of bed. I know that feeling. Some days, it seems like there is just so much of life "stacked up against you" that you really just don't have the strength to get up and face the day.<br /><br />Then, at about the same time, our church prayed for someone who has been diagnosed with cancer. Again. More pain, and more suffering. Why does God let that happen? Isn't he our loving father? What kind of father would let this sort of thing continue? Seems mean to me.<br /><br />Just this week, we once again prayed for someone in pain. This lady has been in extreme daily chronic pain for over a decade. How does God let that happen? Where is the glory in that? "Look at this person who follows Jesus. See how much she suffers?". It doesn't seem to add up.<br /><br />I've been thinking about this for a while. There has to be something deeper. Something that can make it all make sense. I cannot - in spite of all that I see happening - believe that a God of love has a mean streak. I think this comes back again once more to eternal perspective.<br /><br />Eternal perspective changes how we look at things. Instead of limiting ourselves to our emotions, feelings, and limited time, we take a big step back and look at things "from God's view". What purpose does suffering have here on earth?<br /><br />I think that God allows us to suffer because it makes more room in the world for love. Love is the greatest gift that we can give to another person. And the more pain, sorrow, and suffering there is on this earth, the more opportunities we have to give and receive love. Yes, we can love those who aren't suffering too, but the deep connections we make with others are more often and more tightly forged in the fires of adversity. Just like intense heat and pressure turn coal into diamonds - pain, suffering, and sorrow turn mere acquaintances into deep friendships. Spending time with someone and sharing in their suffering creates a deep bond that cannot be duplicated in any other way. And in the sum total of things of value on this wounded sphere, love tops the list.<br /><br />How great is it that the more you hurt, the more love you experience.Camhttp://www.blogger.com/profile/06552161240451293128noreply@blogger.com1tag:blogger.com,1999:blog-157202243199046150.post-87442754130325900742007-10-25T22:48:00.000-07:002007-10-25T23:10:09.492-07:00I just want to play with my friendsThis week I went to a PAC (parent advisory council) meeting. Doug's school has a rather old playground, and the PAC has been fund raising for a while now for a new one. This meeting was to make a few decisions about what type of equipment to buy.<br /><br />Seeing as Doug will be one of the users of this equipment, I went to the meeting to see what was planned.<br /><br />Underneath the surface I had a slight feeling of apprehension. What do I do if the equipment they're looking at isn't "Doug friendly"? How big a priority is accessibility? The school playground is where many of the deepest friendships in your life are cemented. How many of us have friends from "way back" whose relationship has survived the fickle sands of time? All due to the hours of playing on the monkey bars, adventure playground and soccer fields. It's pretty important. On the other hand, who am I to hold hostage the selection of new equipment just because my ONE child can't use it? That isn't fair at all either. This stuff serves hundreds of other kids a year, and will long outlast Doug's time at school.<br /><br />How can I strike a balance between making my point and being a team player? Do I really have to prepare myself to go into another battle on Doug's behalf? Don't get me wrong, I'll gladly do it - my trusty shield may be a little dented by now, but I'm still game.<br /><br />It turns out that my worries were all for naught. The PAC has a Recreational Therapist (I hope I got that right) on board with the planning. She's been considering accessibility for all sorts of disabilities, and assisting in the planning to make something that is fun for everyone - including those who come with their own needs. The PAC members continually considered the accessibility angle, and demonstrated an extremely inclusive approach. It looks like I can sit this battle out. The enemy - if any - is outnumbered by friends of Doug here.<br /><br />You can talk all you want about accessibility. Surface type, transition points, upper and lower body equipment, play paths, etc. But when it all comes down to it, I think I can succinctly voice my opinion on what type of equipment to get:<br /><blockquote>I just want Doug to be able to play with his friends.</blockquote>Camhttp://www.blogger.com/profile/06552161240451293128noreply@blogger.com0tag:blogger.com,1999:blog-157202243199046150.post-87720574212940083692007-10-07T20:35:00.000-07:002007-10-07T21:35:23.376-07:00A Time for ThanksgivingToday, a friend of mine, <a href="http://thesearchfortruthandbeauty.blogspot.com/">a thinker</a>, gave the sermon. It was his first, and he did a really good job in spite of what looked like a healthy case of the nerves. What he did for me was remind me of perspective. <a href="http://net.bible.org/bible.php?book=Ecc&chapter=3">Ecclesiastes 3</a> has the famous passage about "for every thing, there is a season. A time for..." Another passage that sprung to my mind as he preached was <a href="http://net.bible.org/verse.php?book=1Th&chapter=5&verse=18">1 Thessalonians 5:18</a> "... in everything give thanks..."<br /><br />On the one hand, there is a season for everything. A time to weep, and a time to laugh - and given today's date (Thanksgiving), a time to give thanks. So I've dedicated today's writing session to a challenge to myself. I'm going to write today about Thanksgiving. I'm going to attempt to capture ways that I am thankful for Doug's Muscular Dystrophy. Fasten your seat belts, I don't know where this will end up.<br /><br /><span style="font-style: italic;">I am thankful for</span> the people I have met on this journey. When you meet people who are going through, or have been through something like this, the emotional bonds you create with them are incredibly deep. A shared experience like this produces a connection that would otherwise take years and years to build.<br /><br /><span style="font-style: italic;">I am thankful for</span> my friends and family. They may not know it, but I draw deeply on their emotional and physical support. They meet needs both large and small without knowing it, and often without proper recognition or thanks.<br /><br /><span style="font-style: italic;">I am thankful for</span> the way I have experienced the generousity of strangers. Through Doug's needs, I have a renewed hope in the "spirit of mankind". "Religious" or not, God has built people with a inner desire to be charitable to each other. We don't see this everyday, as most of us have built walls up to hide behind. Give people an excuse though, and watch love and kindness flow out of the most unlikely people. Take a step back, and watch God coordinate the charity of many unrelated threads into a completed tapestry. I am thankful for being able to watch the the Master Weaver at work here. (Heck, did you see how many bikers showed up for the Vancouver Toy Run today in the cold rain?)<br /><br /><span style="font-style: italic;">I am thankful for</span> the slow progression of DMD. I get to wake up each day to a son who looks and acts very much like the day and week before. I am thankful that I don't yet have to lie awake at night wondering if I've hugged Doug for the last time.<br /><br /><span style="font-style: italic;">I am thankful for</span> the talented medical care that our much maligned system manages to provide. In spite of all of the complaining of the "broken system", we've managed to be cared for by an army of first rate "ists".<br /><br /><span style="font-style: italic;">I am thankful for</span> the way that I am now more in tune with the emotional hurts and needs of others. The only way you can <span style="font-weight: bold;">empathize </span>with others is to have experienced pain and sorrow yourself. I am no longer constrained to offer <a href="http://dictionary.reference.com/help/faq/language/d23.html">only sympathy</a>. I feel I have been able to move from acquaintance to friend with a few people because of this. And <span style="font-weight: bold;">I</span> am richer for it.<br /><br /><span style="font-style: italic;">I am thankful for</span> the way that I am forced to admit on a daily basis that I don't have the strength to make it on my own. I'm not weaker than I was before, I'm just more honest with myself.<br /><br /><span style="font-style: italic;">I am thankful for</span> the brief glimpses into what is <span style="font-weight: bold;">really</span> important in life. Relationships and strength of character. All other things on earth are time limited, but my relationships with God and people, and the character I build while I am still breathing will last forever.<br /><br /><span style="font-style: italic;">I am thankful for</span> the kick in the pants that writing stuff down has been for me. I've never been a journaller, or a diary person. But I can recognize what a great tool it is for organizing your thoughts and emotions. And if my ramblings can lead even one person towards a deeper understanding of their own world, or supply a ray of hope in a dark world, what is not to be thankful for?<br /><br />I cannot hear the phrase "well, at least you've got your health" anymore without a small lump in my throat. But I still can be thankful for things. Thankfulness doesn't have to be expressed with only a smile on your face. It is not an emotion - it is a mindset. Tears of pain and hurt can co-exist with thankfulness. And at my house, they do.<br /><br />"In everything give thanks..." I think I understand the author a little bit better now. We are not instructed to be thankful <span style="font-weight: bold;">for </span>everything that happens to us - we are exhorted to be thankful <span style="font-weight: bold;">in the midst</span> of it. Bring on the turkey.Camhttp://www.blogger.com/profile/06552161240451293128noreply@blogger.com2tag:blogger.com,1999:blog-157202243199046150.post-86031094812177088622007-09-30T20:22:00.000-07:002007-09-30T22:12:44.722-07:00So what is a "clinic" anyways?I've had a number of people ask me about Doug's medical appointment schedule. I complain a lot about it, but I don't know if I've ever really described it. We had one of his semi-annual "Neuromuscular Clinic" appointments last week. (Tuesday-Wednesday) Here's a brief snapshot of what that is like.<br /><br />Tuesday<br />-------<br />8:00am - Meet the Pediatric Orthopedic Surgeon. A couple things come to mind here. Note the time. This is not a time of day that is very compatible with our family. The appointment is at BC Children's Hospital downtown. This means a VERY early start - we're looking at traveling in the peak of rush hour. We book a hotel room for the night before that is 15 minutes from the hospital. Anyhow, this particular doctor is one of Doug's favorites. It doesn't take too much convincing to get him to sit still for his examination. The prognosis? Everything is still looking reasonable from an orthopedic point of view. No night splints, special shoe inserts, or other adaptive measures are needed at this time. It's good to have an "easy" appointment up first.<br /><br />9:00am - Meet the Neurologist. Well, actually, we first go through a rather lengthly update and question and answer period with a medical student of some kind. The Neurologist then comes in and is briefed in by the student. We fill in any gaps, and then Doug is examined again. This involves both getting him to perform tasks (get up off of his back, walk up stairs, run, etc.) and by checking his muscle tone, flexibility, and other typical examination things. We spent a lot of time trying to get a blood pressure reading, but blood pressure is something that Doug does NOT do. Ever. We're brought up to speed on how he is doing (generally well) and encouraged to ask questions. It's not easy remembering everything she's said AND our questions and concerns, but we muddle through it. One of the things we've been wondering about is his weight. One doctor says to gain weight, the other says to lose it. We get some hard(ish) targets. 25-50th percentile for height, and 5-15th for weight. Unsurprisingly, I have no clue what he is currently at.<br /><br />10:00am (planned) - Occupational Therapist. The OT, once again, is away. In all the time we've been coming to the clinic, we have never yet met his OT. In fact, we've only seen an OT once, and that was a fill-in. I'm not really sure that occupational therapists even exist - he was on a waiting list for one the entire time he was in both the Infant Development Program, and Child Development Program. He (allegedly) saw an OT a couple times on a consultation basis, but since it happened at school, I have no hard evidence...<br /><br />10:00am (actual) - Instead we got to move our afternoon appointment with the nurse to the morning. She had a whole mess of questions of primarily an administrative nature. Keeping up with which programs we were on and not on, and generally trying to hold the big picture together. She updated us on the <a href="http://www.parentproject.org/">Parent Project</a> - which is apparently starting up in Canada now. This is good news. We tried to get Doug weighed and measured, and he really hated that. Another half hearted attempt to get a blood pressure reading was made - and failed miserably.<br /><br />11:00am - Physiotherapist. Another session of questions. She must have had a 10 page document where we updated her on everything including: how far Doug can walk without resting, what kind of car we drive, how many stairs are in our house, and which side the railing is on. Then Doug had to submit himself to a very thorough examination of flexibility and strength. With a variety of measuring tools, she worked her way through what had to be 3 pages of roughly 50 measurements. Doug did remarkably well in trying to follow her directions. Allison did a pretty fair job of keeping up with writing down all of the answers too! Prognosis? Not too bad. The steroids seem to be giving him strength for now. We need to do a bit more work on stretching his hamstrings and heel cords. Guilty Parent Syndrome.<br /><br />Somewhere in there we also met with a Muscular Dystrophy Canada volunteer. She told us about some of the things MDC was up to, and some upcoming seminars. We also had another session with the nurse. The paperwork never ceases.<br /><br />There were a few more things too, but I can't for the life of me remember them now. We ended up heading out of Vancouver mid-afternoonish. We were very brain fried.<br /><br />Wednesday<br />-------- <br /><br />10:20am - Back at Children's for day 2. At least this time we didn't have to get up at the crack of dawn. First appointment was a bone density scan. I had never seen one of these before, so I didn't quite know how to prep Doug. By this point in his life, he has had enough medical tests and examinations to be (understandably) hesitant. Asking him to lie _completely_ still on a moving table while a machine makes noise and moves an ominous looking arm back and forth over his body for several minutes at a time was NOT looking good. The technicians were spectacular. (I guess you wouldn't work at that hospital if you didn't have a way with kids) They managed to convince him to lie down. We held him still with (just a little) masking tape, and they managed to get a few passable scans. No word on results is expected until our next clinic visit. I expect this is baseline data.<br /><br />2:20pm - Cardiology. Well, the heart is a muscle too, so cardiology is very interested in Doug. And Doug, well, as nice as the people are, just doesn't want to do blood pressure. He wasn't keen on the EKG either - but it was far less of a battle than his previous 3. Those stickers really don't like to come off of his tender little skin - and he remembers it. Follow that up with an ultrasound - another challenge to attach electrodes and have him lie still. By the time we saw the cardiologist in person (the previous tests being done by 3-4 different technicians) I'm pretty burned out. Burying my stress and being "Calm And Reassuring Man" to my kid for 2 days of intense testing takes a lot out of me. There is nothing really new to report from cardiology. Doug's heart is still slightly enlarged, and the doctor is proposing some medication to ease the workload on his heart. The catch is that there is no hard evidence to show that it WILL do anything. But it _probably_ has _some_ benefit, while carrying a _low_ likelihood of _somewhat_ adverse side effects. How's that for hard medical evidence to make a decision on? We've filled the prescription, but are doing to do a little looking on our own first before deciding whether or not to give it to him. We weren't in a frame of mind to make that sort of decision on that day. The doctor respected that, and was completely fine with our approach.<br /><br />So, after a "lighter" second day, we hit rush hour to battle our way back home.<br /><br />And there you have it, a glimpse into a couple of days of medical appointments. This clinic repeats itself every 6 months in our lives. It is a little more involved, and a little longer each time 'round. So if you see me looking a little drained after one of these, please be patient and understanding. Thanks.<br /><br />Oh yeah. We were home for about half an hour before we had to be at school for Meet The Teacher night. I hope the teacher doesn't think we're normally zombies.Camhttp://www.blogger.com/profile/06552161240451293128noreply@blogger.com0tag:blogger.com,1999:blog-157202243199046150.post-31817073367418471452007-09-21T20:33:00.000-07:002007-09-21T21:11:51.981-07:00Living Life at Full VolumeIt's been a long time since I've had a chance to blog. I've been out of the country, and when I got back it's straight into crunch time at work. We've got a client with a tight deadline, and I got duped into the project management role. I'm not quite sure how it happened, but it has sucked every bit of my time and energy since I've landed.<br /><br />So, what does this have to do with Living Life at Full Volume? It's about taking the fragmented pieces of life, and enjoying each and every one of them. It's about taking life, and cranking up the volume so you hear each and every note.<br /><br />September is a busy month. It's especially busy with Doug starting Kindergarten. It's not so much the starting Kindergarten that's the problem, it's the fact that with his 5th birthday he transitions from one medical system to another. We get to go through an entire new set of assessments and meetings to train up another set of people on who Doug is. Don't get me wrong, their all great people, but we've spent a couple months now in transition meetings. First you have to transition out of one program, then you get to transition into another. And the binder of paperwork and reviews gets bigger. Toss in dealing with the school system - which is full of stories both good and bad. Will he be approved for the funding he needs? Will he GET the funding he is approved for? (Schools receive funding on a per student basis, but those funds are spent at the discretion of the local school. Doug's "bucket of money" may be pilfered from to go to other students.) The first few meetings with the school have been very vague on what exactly Doug's support will be. Nobody wants to say anything for sure.<br /><br />So. Life is busy. Crazy busy. 2-3 school/medical appointments per week, unlimited overtime at work, seeing my family after a month away, and fall program startup season.<br /><br />This is leaving me with little chunks of time scattered like a shotgun pellets across my calender. I find myself sitting down in little 1/2 hour chunks of time trying to do something while my mind races wildly away to what is going to happen next.<br /><br />What I need to do is Live Life at Full Volume. Now is for now. If I'm working - I need to focus on work. No distractions, no "I'll just finish this off while I wait for the download to finish". If I'm helping the kids with their homework I will focus on their needs - not try to catch the news hour from the other room. When it's time to relax - that means relax. Ignore the e-mail, the MSN, the phone. Concentrate on relaxing. This is the hardest of all. I can make my body stop working, but my mind keeps churning.<br /><br />Multitasking may seem to be an efficient way to live life - but do you really LIVE life?Camhttp://www.blogger.com/profile/06552161240451293128noreply@blogger.com0tag:blogger.com,1999:blog-157202243199046150.post-22935365664872901352007-08-19T07:35:00.000-07:002007-08-19T07:43:28.249-07:00A Doug MomentEvery once in a while, something completely innocuous reminds me of Doug, and the challenges we face. I call these "Doug Moments". They are (generally) brief moments in time where our life situation strikes me deeply to the core.<br /><br />Today I had another one.<br /><br />I was "working out" in the hotel gym. (no that's not a typo) As I was resting in between exercises (as one my age tends to do more and more) I was telling myself that I really should take a few days off from all this exercise stuff. After all, what I'm really doing is tearing my muscles up, and I need to wait for my body to rebuild them. Then, I'll look just like Ah-nold.<br /><br />It hit me then right in my gut. Doug's muscles don't rebuild the same way mine do. His break down, not build up. And there's not a bloody thing that I can do about it.<br /><br />And for a few minutes there, life really sucked.Camhttp://www.blogger.com/profile/06552161240451293128noreply@blogger.com2