Elana's dad passed away today (May 26th), after battling lung cancer for the last nine months.

I didn't want to write this blog post. I didn't expect it. All along, I was expecting him to get better, expecting God to heal him until the very end. Maybe it was optimistic, maybe it was denial ... or maybe it was a mix of both.

I will miss him. I miss him already. He was a gentle soul. I'll remember him for his quiet humor. He loved gardening and flowers. He loved art, painting, and choir & classical music. He loved photography. And even though he didn't always understand them, he loved computers.

Most important of all, he loved the Lord and he loved his family. He was an amazing man, husband and father. Married for over 50 years, his relationship to Elana's mom was a shining example, something for all to emulate. I can only hope to be as devoted a partner to Elana for the same amount of time.

I took the photo below at Jake's 3rd birthday in September, only a couple weeks after Dad was diagnosed with cancer. I will remember Dad's strength, courage and smiling eyes always.

Yesterday (May 19th), Elana & Jake & I took a bus to White Rock to go see Rick Hansen. It was the 25th anniversary of his "Man In Motion" around-the-world-in-a-wheelchair stunt ... an unbelievable marathon Hansen completed way back in 1987, the same year I graduated from high school.

I never got the chance to meet Hansen in person back then, at the conclusion of his world tour. I did have a very brief chance encounter with him in a parking lot at the University of British Columbia a few years later, though - an encounter re-told in my book, Daddy Bent-Legs. Those who have bought my book will surely remember, as it remains as one of my most favorite (and fun to write) chapters.

Rick Hansen is an incredible athlete, still - his upper body looks built like a truck. But more than that, he's an incredible person. A real Canadian hero. To have the chance to meet him in person again was amazing, truly.

I gave him a copy of my book, and he even signed one for me. I have the pictures to prove it. Great day!

This Friday (May 18th) will mark the first anniversary of my Daddy Bent-Legs website & blog.

This blog site alone has received well over 4000 hits since launch and, overall, I'm pretty happy with those numbers. I've said it before and I'll say it again: writing my book was the easy part. Marketing the book, and getting it out there and noticed is where the real challenge begins.

I started out on this journey as a naive, unknown author. Building up book sales and a web following largely through word-of-mouth and a few positive reader reviews takes serious effort ... and honestly, this was something I was completely unprepared for going into it.

But here I am. My book has been out now for about 2 1/2 years, my website is almost one year old ... and I'm *still* getting a lot of good feedback (and meeting new fans) for my book & website each and every week.

Today, I just received an email from Jason Ashberg, a fairly accomplished filmmaker ... who just so happens to have cerebral palsy. He is currently campaigning to raise funds for a new short film titled, DREAMER ... a love story, featuring a boy with CP - the kind of main character we don't often get to see in movies & TV, unfortunately. To learn more about Jason Ashberg and his new movie, click on the links above. I wish him all the best in getting his movie made.

It's important to dream big. Even today, I feel there are bigger, yet-to-be-realized plans for my book. Without question, marketing is a tough slog and can be daunting at times but, with God's help, I know that I can eventually get there.

God thinks big too.

P.S.

Thank you to everybody out there who follow me on Twitter & Facebook and to all who continue to support my book and this blog. Over this past year, I've loved getting the emails, encouragement and positive feedback.

Look up the word DISABLED in any dictionary and you will find a laundry list of the following descriptors: "incapacitated", "broken-down", "decrepit", "worn-out" and (my personal favorite...) "wrecked". Those words are ugly. Unflattering, to say the least.

Those are just the synonyms. Let's look at a few antonyms, or opposites. Here, we find terms like: "healthy", "strong" and "capable". In other words, I, as a physically disabled person, am assumed to be "unhealthy", "weak" and "incapable". Pretty ugly, indeed. And yes, my use of oxymoron is deliberate.

I think it's time we had a better definition for DISABLED. In my 44 years as a physically disabled man, it's surprising how little has changed. We now have new-age / politically-correct terms like: "Differently Abled", "Handi-capable" and "Physically challenged" ... but, for me, all of these terms are by some measure inadequate, inappropriate or condescending and in no way properly depict what it truly means to be physically disabled.

Personally, I have absolutely no problem with using the word, DISABLED. In my opinion, it really is a far more accurate and honest reflection of serious, life-long physical impairments like my own cerebral palsy or my wife's Arthrogryposis. So instead of  trying to replace the word itself, I think we just need to start using a different definition.

If Webster's dictionaries the world over are supposed to hold up a mirror to our modern-day society, then we need to start thinking a bit more counter-culture to effectively erase all of the old, out-dated definitions that are still being perpetuated onward.

One of the best definitions of DISABLED that I have stumbled across so far is this:

"Lacking one or more physical powers, such as the ability to walk or to coordinate one's movements, as from the effects of a disease or accident, or through mental impairment."

Looking above, I like that definition a lot because it focuses on "powers", or empowerment. I, for example, may be lacking one or more physical powers myself (as a result of my CP) but by simple extension, there are many other powers that I *do* have ... a whole lot of things that I can do, and can excel at.

"Differently Abled", "Handi-capable", and "Physically challenged" have all tried to replace DISABLED - and have failed. No more weird & wacky word pairings, please - I don't like it! To me, saying that I am physically disabled is accurate. The word itself is perfectly fine.

All we need is a better, and more powerful definition. To be more counter-culture: to think different, to act different, and to behave better towards ourselves and others. Easy, right...?

Dying is a fact of life, there's no escaping it. As Christians, we know that we're all going to end up in heaven sooner or later, it's just a question of timing. Still, death is cruel and unfair the way it sneaks up unsuspecting and takes special people away from us.

Dr. Ken Tittle was a very unique Christian. He loved words. He was a great speaker, an even better writer, and he was able to think and speak in ways most people cannot. He was a true philosopher; a one-of-a-kind man of God. While many Christians often like to put God in a box, Dr. Ken saw God as the epitome of "out-of-the-box" thinking. For me (and countless others), Dr. Ken will undoubtedly be remembered for his penchant towards deep thoughts, intimate discussions, and beyond-the-curve logic.

Dr. Ken's most important life's work was, and is, Mariposa - a ministry he started over 30 years ago, so that people with disabilities had a group (...and later, an online / email-based forum) to talk freely & openly about disability in the hope that we may come to know, and better value ourselves as individuals, and Christians. I first met Dr. Ken back in the Summer of 2002. At that time, I had only known Elana for about six months and was myself still very much a Christian "newbie". Even so, Elana somehow convinced me to go away with her to San Diego, for a week-long Christian retreat / church camp. Elana first met Dr. Ken there the year before, and his whole Mariposa Ministry had such a profound impact on her, that she wanted me to experience it for myself.

All I can say is, wow. What a wonderful introduction to Christianity that was! So raw, so honest, so liberal. So very different than what I had expected. Dr. Ken immediately impressed me as someone real - a real Christian with flaws (and not afraid to talk about them). Just a really cool person, plain and simple. He was a techie like me and, like me, also loved photography. I had a tremendous amount of respect for him almost straight away, and he became a very influential steward on my path to knowing Jesus.

It's unfortunate, but a lot of able-bodied Christians today still have a hard time wrapping their heads around DISABILITY and what it means to the church, as a whole. To the narrow-minded Christian, a disability is strictly a *physical ailment* ... something requiring prayer for *physical* healing only. Speaking from personal experience, I've had several people come up to me (...even complete strangers) praying for an instant, miraculous healing of my Cerebral Palsy and bent legs. And every time, when the miracle healing doesn't happen, all of these wonderful prayerful able-bodied people suddenly don't know what to do with themselves.

They might think: "Well, my prayer for physical healing didn't work, so what should I do now ...? How can I reconcile / make sense of this?"

For a lot of these people, it is very black-and-white: there is only complete success or complete failure, and nothing in between.

But the reality is, God delves into many different shades of grey all the time. For me, God is big. Big enough to be far beyond complete understanding and comprehension by any of us in our earthly realm. Is God capable of spontaneous full-body healing? Yes, He most definitely is. Am I shocked or disappointed when God doesn't answer all of those prayers for complete healing of my physical disability? No, I am not.

My disability is an important part of who I am, and of what I have become. This is my journey. This is the life God chose for me and it's up to me to make the best of it. More than any other able-bodied person I have known, Dr. Ken truly understood what it meant to be disabled ... he really got it. I remember when I emailed him an early draft of my book, DADDY BENT-LEGS. I was excited to have him read my memoir, and fully expected him to like it, without too much constructive criticism. But alas, he didn't completely love it. His biggest criticism of the manuscript: that I was perhaps a little too focused on keeping everything lighthearted. He suggested that I dig a little deeper, and be willing to talk candidly about a few of my life's big disappointments too. Both me and my book are infinitely better because of him.

Elana & I last saw Ken about five years ago when he and his wife stayed at our place for a few days on a brief stop-over visit to Vancouver as they vacationed through Oregon and the Pacific Northwest. It doesn't seem all that long ago, though ... as Mariposa Online always managed to stay fairly active through the years.

After all, Dr. Ken loved words. He composed countless emails ... and the vast majority were, at bare minimum, somewhat profound. He was an amazing man with a beautiful mind, to the very last.

Dr. Ken Tittle is only two days in heaven and already severely missed. I sincerely hope that his online Mariposa Ministry will in some way continue. Even though I know that it will never be the same, not even close.

Until we meet again, Dr. Ken ...

My last blog post focused on how frustrations with my disability can lead to frustrations with Jake. March was a difficult month for both me & Elana in that regard, for whatever reason.

This month is different. Jake seems more relaxed and happy overall and it has made parenting challenges a lot easier. Elana and I have gone through short stretches where nothing we're doing as parents seems right, and then a good day, week or month comes along and I feel vindicated.

There are many different ways to parent, and differing opinions on what approach is best. From the start, Elana & I have tried to follow the strategies of Attachment Parenting. With an AP philosophy, the emphasis is on gentle discipline and maintaining a positive relationship / bond with your child. Doing things the AP way removes the need to depend on rewards and punishment. Following the AP method is very difficult at times, and it requires a lot of extra patience and dedication. And yes, there are times when I'm tired that I simply don't have patience ... and I yell and get mad at Jake. I remember how critical I used to be of other parents not being able to "control" their children. But the fact is, misbehavior and the occasional toddler tantrum is going to happen every once in a while. I get it now, that parenting is really hard and, as parents, we can never truly control our child. Jake is his own person, with his own will and wants.

With AP done right, there is no punishment or time-outs. Instead, we use "time-in" and give Jake the chance to cool down and get a handle on his emotions. In the end, it's just a more respectful, gentle and supportive way to parent - and it works. Jake cleans up his messes, does little chores, and gives spontaneous hugs by his own free will - and it feels great to see that. So obviously, we must be doing something right.

The slow creep of frustration is held in check for now ....

Becoming a parent is like getting on a roller-coaster. It's a fun and exhilarating ride, sure. But parenting is also a series of ups & downs and unexpected twists. The rise and falls are a daily occurrence ... sometimes in rapid succession, one after another.

My son Jake has a lot of energy. Stereotypically speaking, toddler boys are more rambunctious compared to girls. And not only that. Apparently, boys born to less physically-active parents can often be all the more energetic. Elana read that somewhere recently. In any event, this certainly seems true in our case. Jake has a boundless reserve; a battery that just goes and goes and goes. Some days, it can be a real challenge to tire Jake out - but it's very important that we do, or else his energy can morph into aggression and bad behavior.

Jake is three and a half years old, and already he is becoming quite an athlete. My son, a mini sports jock. All by pure fluke, of course. Yes, Jake has definitely overcompensated for his less active, physically disabled parents. At three and a half, he is becoming more aware of our physical limitations, too. And that sucks for Elana and me, let me tell you. So much of parenting a toddler is about being able to act quickly. If you intercept fast, you can avoid escalations like toys being thrown across the room and other such displays of raw, honest emotion.

Man, I wish that I were faster sometimes! Certain parenting strategies are so basic and simple ... and yet, for disabled parents, not easy to do. Occasionally, it can feel like Jake is getting the better of me and that I'm not in full control of a situation simply because of my slow disabled body. I know that Elana really struggles with that too. And while it's true that we can (and do) call on Elana's care-aids for help, having to instruct someone else to intervene quickly takes time and is still a fair bit slower than if I just had my own able-body. The fact is, in his best "I'm-still-a-toddler" episodes, Jake can go from happy to sad (or mad) in a mere instant and being slow and disabled is a real disadvantage.
 
All those times of feeling slow, powerless, inadequate, and feeling like a bad parent ... those are the DOWN roller-coaster moments. The descent feels like an eternity. In reality, it's not though. And in the end, it's all of the good up moments of parenthood that redeem everything else. On the whole, Jake is a wonderful child: inquisitive, funny, sensitive, helpful, and highly snug-gable.

So that's the ride - being able to survive the ups & downs and, at the same time, being able to see parenthood for what it really is: a once-in-a-lifetime, thrilling experience.

A little over six months back, a freelance writer named Zachary Fenell agreed to write a review for my book. Zach has CP also and he regularly scribes (or Tweets links to) news stories about disability. For anyone interested, my original blog post on Fenell's review can be found here.

This month, it's time for me to return the favor. Mr. Fenell is back with a new book of his own titled, Off Balanced. Zach's book is a memoir too, and of course I could relate to a lot of his own musings about living with Cerebral Palsy. What I found most interesting, however, is how much our stories differ.

For starters, Fenell's CP is a fair bit milder than mine. Yes, Zach has an "awkward gait, poor balance [and] tight muscles"  but his disability is more easily disguised. In contrast, my bent legs and aluminum crutches are plainly obvious and always have been.

So, Fenell is lucky, right? Before reading Zach's book, I certainly would have thought so. I mean, the severity of disability should make a difference, yes? As it turns out, the truth is a lot more complicated. Sure, Fenell can keep his disability hidden away and blend in amongst the able-bodied crowd ... BUT his Cerebral Palsy is still very real. Regardless of severity, CP is more than just a daily annoyance ... it can be a real burden and a constant reminder of being less-than-able or far from normal.

For Off Balanced, Fenell chose to focus particularly on his adolescent experience and life with a disability. Having to deal with CP is challenging - and trying to handle it in amongst extreme hormonal changes, peer pressure and teenage angst is an even bigger hurdle. That point is hammered home very well. Zach shares his inner struggle over wanting to fit in, but, at the same time, feeling very different from his peers and needing to withdrawal. By comparison, my bent legs and crutches seemed to thrust me into the spotlight - and that forced me to adapt to (and more readily accept) my disability from the get-go. A recurring theme throughout Off Balanced, though, is "DISABILITY EQUALS SHAME" and Fenell's story excels when delving deep into his own head. Zach gives a lot of attention and detail to his relationships with friends and family too. A chapter which Fenell devotes to re-telling of his first high-school crush is sincere, brutally honest in parts, and heartfelt. I finished Zach's book with a much greater appreciation for the unique battle he has had to face as someone with a more (seemingly) subtle, less visible physical disability. In the end, Of Balanced is an insightful memoir and a cerebral look at Cerebral Palsy's impact on adolescence. A great read for all ages, but the teenaged audience could especially benefit.

Off Balanced is available on Amazon and Barnes & Noble.

I got Jake's Stiga hockey table all assembled and hidden away til tomorrow - I can't wait for him to see it! That has to be one of the best things about being a parent: getting to experience the joy of childhood all over again.

Wishing everyone a very joyous Merry Christmas and Happy New Year.

Elana's dad starts chemotherapy in a couple of weeks. The earlier radiation treatments helped to shrink the tumor. Now the plan is to kill the cancer cells altogether. A man of strong Christian faith, Dad is staying positive - and with God's help, I know he can beat this.

Cancer treatment is a slow process though. It's a long road ahead, a real test of patience.

Winter is officially here. We got our first snowfall yesterday. I like snow. It's a reminder that Christmas is just around the corner. I like Christmas too!