Monday, December 11, 2006

Life in the Valley

Sunday at church was the "snow delayed" sermon on stress that is brought on by the "Dark Valleys of Life". It was a talk aimed at how to keep hope alive when travelling through some of life's darker moments. A good friend of ours also shared about their experience of losing a child at childbirth, and how they coped.

It was a very very emotional service - especially for one held on the second Sunday of advent!

I came away with several somewhat random insights - from the perspective of someone who is walking through a valley right now. (please excuse the excessive use of metaphor here - once I get started...)

1) When you are dealing with life's challenges on the valley floor, you can't just "will yourself" out of the valley. There is no way that you can make yourself happy, and make it all go away.

2) Looking back, I can see where I've tried to escape. I've climbed and crawled, and pushed myself up the valley walls towards the high ground where I can see everyone else standing in the sun and enjoying life's majestic views. I've beaten myself black and blue climbing the steep walls only to have the ground give out beneath my feet and send me tumbling face down in the mud below. Those are the lowest of the low days.

3) While the views from the top are the most majestic, it is the valley where things grow. Alongside the river on the valley floor is where the fertile land is. It is where God tends his garden, and produces the rich variety of fruit.

4) I am not alone. I could see on Sunday by the tears in the eyes all over the church that the valley floor is covered in footprints.

My path lies along the valley floor. I did not choose it, but I must choose to walk it. This valley will one day end - be it on this earth or beyond. Until then, I will take each day as it comes, one step at a time. I will stop to smell the flowers and listen to the gentle running water. I will enjoy the panoramic view of the majestic mountain peaks - but from the path laid out before me.

Monday, December 4, 2006

Cooling Off Period

Well - I guess I shouldn't leave people hanging like that. I was sure steamed though - I'm feeling a bit better now. (not happy, but less angry)

The assessment came to the point where the various parties involved "were unable to reach a consensus", and want to re-evaluate Doug at age 6.

So what does that mean to me? It means the medical system has taken another round out of me. I'm feeling a little more beat up, and a little more overwhelmed - but not entirely without hope. Doug is feeling better too, and I can only speculate what it would have been like had he been operating at full health.

But you know what? It's over. I can lock up that concern for another couple of years.

Allison had a good comparison the other day. She said she felt like we were on a submarine. We'd go into one "compartment" to deal with an issue, and do our best to stem the leaking. Then, when time was up and we were onto the next unrelated appointment, we jump out of that compartment, slam the water-tight door, and dive into the next compartment. We block everything from the previous appointment out.

What this means is that we are currently not flooding the whole submarine at once. Individual compartments are still leaking, but we can lie on the floor wet and exhausted - but still afloat.

I'm hoping that we will have fewer appointments as everybody gets into the Christmas season, and a little more time to refocus our lives again. The submarine must move forward.

Wednesday, November 22, 2006

Today I 'm ANGRY

Today I am ANGRY. I am MAD. And I'm a little ROYALLY TWEAKED too. I know it's poor form to type in ALL CAPS because it looks like you're shouting.

BUT I DON'T CARE. I AM MAD MAD MAD MAD MAD.

We accepted the referral for Doug to be cognitively assessed because we were told that this would be a good way to figure out the best techniques to help him - if indeed he needed it. Somehow along the way, this turned into a full out Autism test - and NOBODY BOTHERED TO TELL US. We've all just been through 3 very stress packed days of having Doug's behaviour picked apart for what appears to be the sole purpose of slapping a label on him.

At the end of what was a very stressful THREE HOUR interview today, I told the interviewers that we were told that this was to be a general cognitive assessment, and we really didn't know why they were spending so much time on the autism component. The look on their faces made me want to get up and throw up. Judging by the look on their faces and the quick shared look between them it was bloody obvious that they were there solely to make an autism/no autism decision. One of two things seems to have happened. Either someone mixed up the paperwork along the way, or we were railroaded. Neither of them makes me feel particularly happy about the medical system right now.

Did I mention that I am MAD?

Now, I don't have a problem with autism. It's not that at all. I'm steamed about "the system" adding more and more labels to him that are going to get him stereotyped in school, and amongst his friends. And to have it done without us being warned about it is simply appalling. You can only imagine the stress that we are under right now.

Now I typically don't call doctors on things. I figure, they've got all the schooling, they probably know what they are talking about. This time I'm going to be more assertive. I've got a few questions about this whole process that I am getting answers for. We've got the "results" session tomorrow. Maybe this whole process is a wake up call for me to be less trusting. I don't know.

Those of you with mp3 players can cue up "Hair of the Dog" by Nazareth tomorrow at 3:00 and follow along with our appointment at home. Crank it up loud - I know I will.

Thursday, November 16, 2006

Water water everywhere

... at least it's not in my crawlspace.

On the good news side, it looks like our floors have been chipped and ground down to where they need to be. There were some very tired looking guys downstairs. Now they can start on day #2's scheduled work.

On the bad news side, there's a boil water advisory for our area due to all the rain. Our stove is in the living room. Our other stove is in the garage. Hmmmm.

Only one medical appointment today, and it got bumped to a new time due to power outages at the therapist's day care. We're pretty flexible today, it's going to take a lot to knock us down now. The ratio of things going wrong to right is so far off kilter that we're not getting all that terribly worked up anymore.

Did I mention a bunch of our flooring that was on backorder and supposed to arrive a couple days ago is "maybe" coming in next Tuesday?

Wednesday, November 15, 2006

What a day.

Wow. What a day.

Yesterday ended with what I thought was yet another "typical" home renovation story. Our dishwasher was due to be delivered yesterday. At noon, I hadn't heard anything about when it was to be delivered - so I called. I got transferred to the delivery desk, who had no record of my purchase. They said not to worry, there was another company that also does delivery, and they transferred me to the appliances department. They, in turn, gave me the number to the proper delivery company. When I called them, they also had no record of me. So I called Home Depot back. Once again, transferred to appliances, they told me that my dishwasher hadn't arrived at the warehouse yet, and they didn't have a firm delivery date for me. I had, of course, just finished wrestling a beast of a dishwasher out the door, and given it a few good kicks to boot. Sigh.

Fortunately, both my paperwork and dishwasher were located a few hours later. I actually got a delivery scheduled for today! It probably helped that I was understanding and didn't yell and scream. It probably also helped that I was calling from "home" and not "work", and they assumed I had taken the day off work to wait for it. The fact that I wasn't yelling and screaming about being without a dishwasher for a few days also aided my case. I was completely silent on the fact that I needed the dishwasher out for those days anyways to let the flooring guys work...

So my dishwasher arrived today. They even managed to hit the early side of the delivery window - between 6:30 and 8:00 IN THE FREAKIN' MORNING! Needless to say, my day started earlier than normal.

I had just managed to start getting the kids up, when the flooring guys appeared at the door at 8:00. I missed breakfast as I frantically tried to keep ahead of them by moving furniture around as they yanked and pulled up the carpet. Doug was abandoned at the table, as we rushed to get Samantha out the door to school. No leisurely start for me today!

Part of the job was to rip out the K3 board (particle board) under the linolium. In the upstairs bathroom I did earlier, the board chipped out nicely. It was screwed down very dilligently, but had not been glued. The kitchen was a different story. It was screwed and glued like there was no tomorrow. Saws, chisels, undercut saws, and a jackhammer were all used to chip and pry the stupid stuff off. There is a 6 inch layer of dust downstairs from all of the grinding and chipping. The floor guys had budgetted a full day to chip it out. They fell behind quickly.

Meanwhile, Doug had a physiotherapy appointment. He's been walking on his toes a lot over the previous 2 weeks and we wanted to be sure everything was ok. Our downstairs was completely uninhabitable with the noise, dust, and exposed plywood floor with nails. So we retreated upstairs to a tiny open space that was shovelled out from where our downstairs stuff was being stored. I went for a shave to get ready for an important business meeting in the afternoon.

Somewhere in this time, a saw hit a nail, and threw it through our sliding glass door, shattering it into 6 zillion pieces. Great. Just what we need when there is a storm with high wind warnings on it's way. Fortunately, Doug's physio was going nicely, and there's no big concern as of yet.

Then, without warning 11:00am hit. This initiated a sudden rush. You see, today was also flu shot day for us. So we hustled physio out the door, and starting packing up Doug to go pick up Samantha from school to get our shots. I think I managed a short conversation with the floor guys (who really are hating my floor at this time) about replacing the window tomorrow. But I was in "a bit" of a hurry.

Samantha was collected without issue, and we arrived at the doctor's office right on time. We then proceded to wait for about 1/2 hour - in spite of the office reporting not 40 minutes earlier that they were running right on time. Fortunately, my 1:30 meeting (downtown Vancouver) had been bumped to 2:30, and this wasn't making me late - yet.

I hate needles. So does Samantha. This was a very traumatic appointment for both of us. I think I took it better than she did though. Nobody had to physically restrain all 4 of my limbs well the shot was being administered. Poor kid.

By this time, it's already after 12:00, and we need to rush a McLunch into us, so I can get downtown in time. I'm just biting into my burger when I get a call from the floor guys. The floor is getting tougher and tougher, and the ratio of glue to wood is approaching 1:1. They want to know if we can go to plan B and raise the rest of the floor downstairs by sheeting it with plywood instead. If it weren't for the water damaged K3 that needs to come out anyways, I'd be more tempted. They say they'll explore the damage and call me back. Not more than a couple minutes later, I'm talking to Milt about the weather and traffic. Trees are down across the freeway, and power is out all over the place. We need to leave extra time, but we're already at the wire.

And if it feels like this blog is too long, well, imagine how I'm feeling by this point!

We arrive on time for the meeting, and it is a good one. The project sounds exciting. The sort of clean sheet development every software guy likes. Things are looking up - but there is still no word from the flooring guys. We are getting reports that large parts of our neighborhood are without power. I hope they're not chipping by candlelight.

I get home to see much more floor still there than I wanted. They're about 1/2 done. It looks like they are squaring the edges to make way for laying more plywood down. I don't know how much 23 sheets of plywood costs to install these days, but I doubt it's cheap. We put dinner in the oven (Pappa Murphy's Take and Bake gave away free pizza yesterday!) to bake, and I was just about to head upstairs to see the kids when the power went out. Great. The pizza was only 1/2 cooked, and every restaurant in town has a 4 hour line up. This day is not getting better.

Fortunately, we're on the same power grid as a firehall, and seem to get priority treatment. It wasn't more than about 20 minutes before the power came back on. We cranked the oven up high and crossed our fingers. As of now, the pizza is eaten, and the power is still on.

Tomorrow, the flooring guys say they'll be back, and they have resolved to "beat" this floor yet. He feels that he quoted on pulling out the floor, and by golly he's going to do it if it kills him. Hopefully it won't.

So, if any of you out there have a building contractor job you want filled, I've got some real world experience. Please address your job offers to:
dream-on-im-not-doing-this-again@forget-it.com.

I'll update you more later as tomorrow hits, and sees me return to the flooring supply store to check on backordered trim pieces, and return some low quality underlay...

Thursday, November 9, 2006

Stress - "You don't know what you've got, 'til it's gone."

You know - sometimes you don't know how stressed you are until some of it goes away.
Today was the first of TWELVE medical appointments for our family in the next THREE weeks. It's not that we're all that unhealthy, it's just that November kind of crept up on us, and caught us unaware. I've been working hard on time-management (which is why I got really annoyed at losing that last blog entry). I've been putting everything into my Outlook Calendar and using it to optimize my schedule and avoid double bookings. Well, I can safely say that it kind of works. I've managed to fit more things into less time than ever before. The problem is, there isn't "less time", so I'm just plain doing more in the same amount of time. My "free time" hasn't grown, and hasn't really shrunk.

But back today. Today's appointment apparently was a source of a great deal of stress that we didn't even know we had. Well, we knew we had stress, but hadn't really clocked today's doctor appointment as being relevant to it. You see, we're renovating during this month too. I'm trying to schedule flooring guys, counter guys, and plumbers to arrive here soon, but not before the stuff they're supposed to be installing. So between this and doctors, I'm pretty busy. Oh yeah, there's work too....

Today we went for the pre-assessment assessment for Doug's Autism tests. We don't think he has it, and never have. But there are some "tendencies" that may put him "in the spectrum". And as good cautious parents, we're taking on the additional stressload just in case there is more to it than meets the eye, and extra support and funding for treating it. Today went well. The doctor interviewed us, and examined Doug. He came to the same conclusion we did, in that Doug is "well outside the spectrum". The relief in the room was tangible. At that point I realized that I was pretty worked up about this - despite believing that there was nothing to worry about. I guess we've experienced the "worst case" diagnosis before, and our bodies were working themselves up to deal with another one.

What have I learned? Stress is bad. Being to busy is stressful - and worst of all - being too busy masks the root causes of stress. Fortunately there's a sermon series under way now at church about managing stress. I'll be paying close attention.

Tuesday, October 17, 2006

The Journey Begins (Again)

Well, after that last blog entry, you'd have expected us to be going full steam ahead on the steroid therapy. Think again.

We gave our decision a week or so to settle into our minds before I actually worked up enough courage to pick up the phone and call the doctor to tell her that we were going ahead with it. I thought - "ok, we've decided, we've put our name on the next waiting list". Imagine my surprise when the doctor told us that our prescription was being put in that very day, and it would be ready for pickup by the next morning. I was counting on more time to get used to THIS baby step.

I don't know what I was thinking. I guess, I was expecting to hear the voice of James Earl Jones in my head saying "Hey. This is God. You did the right thing.". But I didn't hear that, and I still haven't. I'm getting more and more used to the idea as time goes by, but it's a gradual acceptance. It took about 2-3 weeks before we picked up the prescription. It has taken another week or two before we were ready to actually GIVE it to Doug.

This last step has been a bigger emotional hurdle for Allison than for me. Doug is now on steroid therapy, and one of the side effects of it is that his body shuts down it's own production of the hormone (or whatever) while he is taking the prescription. This means that if we can't get him to keep down the medication for whatever reason, we need to take him to the hospital to have it administered intraveneously. Needles are a big deal to me, so this is no small thing.

And now, we are waiting and watching, and paranoid. Every time he is short tempered we wonder. Is it the irritability of the medication, or the fact that he didn't stop playing and go to sleep until midnight? Are his muscles stronger today, or does he just feel like climbing the stairs more than usual? Either could be the case.

But through all of it, I think the thing I need to remember is that Doug is still Doug. He's not a . He's just a kid. And he's MY kid. And I'll love him more and more each day that I am privileged to spend with him on this earth.

Tuesday, August 29, 2006

Our First Big Real Decision

Well, here is a Doug update for you.

This has been a challenging month, as we’ve been working through some of the recommendations from the doctors at the Neuromuscular Clinic at Children’s Hospital.

First off, Doug is doing really well. He still has good range of motion in his legs, and the cardiologist appointment yielded even better results than last time. Doug’s heart is still slightly larger than normal, but it hasn’t grown larger as he has, and is therefore closer to the norm. This is good. The orthopaedics department is recommending no current treatments beyond his daily stretches either.

Probably the biggest thing we’ve been dealing with is the decision of whether or not to start him on Deflazacort. This is a steroid treatment aimed at prolonging the period of time that Doug will be walking. It provides a short term boost in his muscle development. To be completely clear here – this is NOT a long term cure. Its goal is to help keep Doug walking for a few years longer, potentially through one of the more critical growth spurts. This steroid is NOT available for purchase in Canada or the United States. It is provided free of charge to Children’s Hospital as part of a study by the manufacturer. It IS used in many other countries around the world.

I know you’ll have a lot of questions, and I can’t answer them all right now. In coming to this decision, we have talked to a Paediatric Neurologist, a Paediatric Orthopaedic Surgeon, and a Cardiologist. We also spent an evening with a couple who have a 15 year old son who has been on Deflazacort. He chose to come off of it for a variety of reasons, but they still recommended it. We’ve read internet research papers and we have prayed. It is not something we’ve decided in a vacuum.

The impacts that this drug has that are beneficial to MD patients are:
  • increased muscle strength (short term)
  • prolonged ambulation – walking through growth spurts reduces scoliosis
  • slower height growth (shorter people have less stress on their spines)
  • slower onset of heart and lung problems
  • slower onset of loss of arm function


There are, of course, some potential side effects. Balancing the benefits and the potential risks was (and will continue to be) a very difficult and emotional matter for us. The significant POTENTIAL side effects are:

  • weight gain
  • mood changes
  • rounding of facial features
  • calcium deficiency
  • potential to develop cataracts – generally in areas not impacting vision
  • increased chances of infections


Once started, it IS possible to stop if we don’t feel the benefits outweigh the costs. In most cases, the side effects will stop as well. It is also possible to adjust dosages and schedules to get the best benefit for the least costs. We WILL be monitoring this constantly as he grows.

As you can imagine, this has not been easy for us. We’re going to ask for your help in several areas. Here’s a good starting point.

  1. Please – research it as much as you want. The more you know the better. If you want to be connected to Muscluar Dystrophy Canada for more info, we’d be happy to hook you up. (www.muscles.ca (Canada) and www.parentprojectmd.org (US based))
  2. We’re looking for support for our decision. Please do not try to second guess this. It was hard enough to come to this point, and we need our family and friends standing behind us. Yes, some of the side effects may be less than ideal – and we likely feel the same as you do, but mourning them in front of us is extremely painful.
  3. See #2 (Please don’t phone us today about this. Let it sink in first.)
  4. We’ll have some additional medical routines for Doug. As we find out what they are, we’ll keep you posted. Things like his medication and supplements will be critical, and we’ll need your help to keep him on track if he’s staying over for a weekend or something.


I don’t know how one ends a blog like this, so I’ll just leave it here.

Friday, August 4, 2006

Camels and Straws

I know this sounds really quite tiny and petty - but the day after our Children's Hospital mental drainage, Allison got a letter in the mail for Jury Duty. On the first day of school no less.

I don't know if you've seen the Princess Bride lately, but there's a scene where the "hero" is clinging to a cliff by his fingernails after the rope he was climbing up got cut. He's making his way up the cliff, but it's slow going. My life sometimes feels like that. Everyone else gets to climb up a rope, and I'm stuck over an impossibly tall cliff holding on by my fingers. Now, in the movie, a rope gets thrown down, and the hero climbs up. In MY movie, it seems like someone at the top is flinging rotton vegetables down at me. The "mouldy tomato" of jury duty by itself is not a mortal blow - but is enough to challenge my grip.

I'm rambling. A symptom of lack of sleep.

[[Updated: August 29th - Allison got permission yesterday to be excused from Jury Duty! Our doctor rocks!]]

Thursday, August 3, 2006

Did anyone get the number of that truck?

Today is the morning after our 2 days of appointments at Children's Hospital, and I feel like I've been either run over by a truck, or used as Mike Tyson's punching bag. It has been an extremely emotionally draining week.

Our appointments started on Tuesday with a bit of a rocky start. The physiotherapist for the day had already not been scheduled, and when we got there, our first appointment was also cancelled. The ocupational therapist was sick. So we had a "break" right away, followed by a 15 minute info session, followed by another "break". We're not morning people, so it was a painful case of hurry up and wait. I was beginning to feel like I was just a tiny, ignored, cog in the wheel. Doug enjoyed the waiting room though. I will certainly give Children's Hospital a thumbs up for their waiting rooms. Every room in that building has it's own little toybox. No matter where you have to wait, the kids have something to do.

The afternoon was tougher. We met with an pediatric orthopedic surgeon, and a neuromuscular specialist. There were a LOT of questions asked. I felt like I was being grilled at the East German border crossing. "Eeef you do not tell uz vat ve vant to know, ve vill take your child avay!" I know they're only doing their jobs, but the depth and breadth of the questions were draining to answer. Every possible area of Doug's life was explored. They seemed to concentrate on the problem areas (which I guess makes sense) leaving areas where he is doing just fine alone. This left me with a big knot in my stomache. It seemed that there is so MUCH that just isn't right. Given some time and space I can remind myself of all the things that ARE right, and that will add perspective. We also had a discussion with the doctor regarding long-term treatments and medications. We've got some serious thinking and soul searching to do. Please pray for wisdom here.

When we got home there was a CCRA "random audit" notice in the mailbox.

Thursday was a lighter day appointment wise. We had 2 tests and a cardiologist appointment. Doug does NOT like EKGs. He has had a bad experience with the "stickers" they use, and clearly has not forgotten it over the past year. Add to the challenge that neither of the two tests can be done unless Doug is calm, and the stress level in the rooms was high. Through some exceptionally good fathering, and some really pathetic bubble blowing by Allison, Doug settled down. He still hated the stickers being removed. You would have thought we were were ripping 8 inch sections of hockey tape out of his hair by the sounds he was making. (and yes, I HAVE heard that particular sound) Our cardiologist certainly seems good. He had a good way with Doug, and besides delivering good news, was pretty good at communicating.

You know - all of our doctors are very good. We're dealing with some really top flight professionals. Professionals who specialize in treating children like Doug. What they have to say sometimes isn't easy to hear, and it certainly isn't easy to share with friends and family. Yes, doctors can be wrong from time to time, but what we need to hear from our friends is empathy. Especially during these emotionally loaded time periods, disagreements over the diagnosis only re-open sore wounds. Just give us a hug. Later, when we all have had time to think things through, we can talk about logical, fact based differences of opinion on treatment options and diagnosis.

And keep praying.

Tuesday, July 11, 2006

Ding! Round 2 is next...

I knew it was coming.

Our second ever scheduled all-day clinic at Children's Hospital has been scheduled. This is a fairly long dose of reality where we see various specialists over the course of the day. It's all grouped together to be convinient - we don't have 6 separate visits to make - but it does cause reality to come and hit home rather hard. It's hard to ignore a medical condition when you spend all day in the hospital.

I really don't know what to expect. I don't know whether there are decisions to be made, or whether this is just a high-powered checkup. I'm hoping for some news from the biopsy last year - but I'm not sure what. It shouldn't, in my mind, take a year to get biopsy results. I don't know whether this means it was "as expected" or if they have been lost, or if there is something unusual they can't figure out. The defense mechanism I have of ignoring it and hoping it will go away has prevented me from asking to loudly.

I guess this means that I will be a bit emotionally on edge for the next couple of weeks. I probably won't even notice it is happening - so please bear with me.

I'm also really struggling with the discipline of blogging. I have found it to be very useful to work things through in my mind, but my number of entries is dropping off. I suspect it is a matter of ignoring the problem. If there's no Doug issues, then there's no reason to blog - right? So, if I don't blog, then Doug is perfectly healthy. I wish it worked that way.

Tuesday, May 16, 2006

Home for Now?

I don't really have much to say today. I'm finally home! But I'm off again... Brazil this time, but only for a week.


Doug had a physiotherapist appointment yesterday. We finally made it to the top of the waiting list. I have mixed feelings over this. It will be harder for my "ignore" defense mechanism to cope when we are reminded regularly with "doctor's appointments". On the other hand, I want the best possible care for Doug. He is such a cute little kid. His smile lights up my day.

Thursday, March 16, 2006

A Long Way From Home

Well, I've been on the road for a while now. I left for Torino and the Olympics on the 4th of February. It's now the 17th of March, and I've only been home for about 6 days. I'm in Melbourne now, and won't be back until the 8th of April.

I've found that I have two personalities. There's "at home Cam" and "on the road Cam". On the road Cam doesn't seem to have any connection at all to home. I think it's a defense mechanism whereby I limit my external world to only what is necessary for my day to day survival. This isn't 100% successful. Calling home, e-mails, and other things bring "at home Cam" to the surface. Usually this is good - I like my connections to home. Sometimes it brings up pain that I'm not ready for.

In some ways, seeing the EAD events (Elite Athletes with a Disability) is one of these triggers. From where I sit "at the office", I can see live feeds from all the competition venues. The disabled athlete events are mixed in with the ablebodied (as they should be!). Occasionally I look up to see these athletes who are overcoming great challenges and am both profoundly impressed. Other times I look at them and and am deeply saddened to be a little TOO close to their world.

Anyhow, I probably won't blog again until I'm back home. "On the Road Cam" isn't up to too many of these sessions.

Saturday, January 14, 2006

The Holidays

We first had serious enough questions about Doug's balance at Christmas time. Seeing him playing with all the other kids his age is what made us first seriously wonder if something was wrong. This year, we are reminded of those questions with every family get together. It was at a family gathering that we were encouraged to "trust our instincts" and book him an appointment.


It has been a mixture of emotions this holiday season with the "ups" of the season, and the "downs" of remembering.


I'm not looking forward to February. I fly out on a buisness trips for 3 weeks. I leave on Feb 3rd - the "first anniversary" of the day our world turned completely upside down. It is going to be a very difficult time emotionally - particularly for Allison. Pray for strength and encouragement for her.