Jazz

Cadence has always been a bit of a watcher by nature. Every since she went through her experience of becoming diabetic, she's been standoffish of things and people that are new and different. Her white coat syndrome is entrenched in subconscious experience. A great example of that is her bicycle. I bought her a bike 2 years ago and she has always feared it yet loved it at the same time. It felt like a personal failure for us, as Nicole and I live for riding, it's always been the reason why for us. So for 1.5 years Cadence would walk her bike when we'd go to the park always fearing going too fast.   Fearful enough that her bike was always best utilized when carefully walked, not recklessly ridden.




And then there was Jazz.

 Jazz is Cadence's best friend. They share more hugs than words and everytime we go driving she asks "is that Jazz's car?". If she was in her 20's we'd probably have a stalking case on our hands but since they're only 5, it's just as cute as can be.  Jazz took to riding her bike almost immediately, likely thanks to her super-parents Tracy and Rob. She ripped up and down her block with "no training wheels" well before Cadence had confidently ridden her first hill. The competitive juices of Cadence came to the surface when she found this out and she was now ready to drop the training wheels and "rock it like Jazzy-Jazz". I have to admit I was fearful of this next step since she barely liked her bike to move let alone tip over. So a day was spent with me running along side of her gradually lightening my grip. I wasn't convinced on the success of this venture thus the training wheels and a crescent wrench went along for the ride in her pink, flower-powered basket, hugged compassionately on all sides by her favourite stuffed animals. But as the evening wore on there was a moment when I stopped and she continued on 2 wheels, by herself. She stopped after 4 pedal strokes of two-wheeled freedom. Looked down at her feet to see what she had done and looked back at me with eyes that said "I did it! I really, really did it...(like Jazz)". It's a moment that almost every parent gets to experience, so I don't mean to sound like this is something that is so unique and special, a single experience in existence. But... it was our experience, amazingly unique and special... truly, a moment where she broke free of our grip on her life. It was a landmark event where she was independent of all crutches. Whether she felt this is for her to answer but I can only tell you that she has changed immensely since that moment in our eyes.

A week later, Cadence raced her first Triathlon in Windermere, with Jazz of course. I can tell you it was the most fun I've ever had in a race and I hope she felt the same way. It was so amazing to see her go through her mental race prep, the ingrained genetic traits that you pass on indirectly to your children. Before a race, I usually get quiet for awhile and look on in the distance focusing on my headspace. Right before the start, i become nervously giddy and social with everyone around me. It was so cool to see that in her. I can only hope she has better success than me ;P .

The race was an absolute BLAST! A 50m swim to transition...hugs with Jazz, then a 1.5km bike ride to transition...hugs with Jazz, and then a 500m run of which I was at her side for the whole thing. It was just an incredibly cool moment. She of course kicked it at the line and "beated Jazz" but she described it as "I winned before Jazz winned". Jazz would get her back next race however, grabbing the victory in the last 25m of the race. Well played Jazz!






"I WINNED"

Cadence is a different kid since she dropped those training wheels and never looked back. She has become brave, adventurous, mischievous, and we love it. She wants to bike everywhere, explore, and do stuff. She is bolusing her own insulin now, doesn't cry for infusion site changes, has even decided she wants to try and do one herself soon. It's really amazing. The added bonus to all of this newfound independence and confidence is that it's rubbing off on Hailey. She can't use her brakes just yet but she's all about dropping her training wheels! We're tempering that process. Additionally, Nic and I have become re-passioned with cycling and fitness . We're back into it and man does it feel good. So a big thanks goes out to Jazz.  A big thanks to my Cadence, since you Winned, we winned!

Kids need a challenge to help them explore what's possible.  To hold them back from experience serves to hold you as a parent back.  Allow your kids to explore and be mischievous, in what they discover could be a great awakening for your own spirit.



Onward without restraint,
b.



Oh and also just a quick little P.S. - in all of the stuff that's happened this summer I'd just like to say: F*CK YOU Diabetes, our last A1C was 6.9!

Blinders

Shame on the Calgary Board of Education, the legal team, the administrators, and any and all involved in putting the health of Calgary's student body behind convenience.

I'm angry, check that I'm really angry. Cadence has been going to Kindergarten for the last 6 months and is loving it. She is praised by her teacher, and beloved by her classmates. I'll never forget how incredibly humble, proud, and surprised she was when she had made all these new friends. Diabetes puts a child on the outside at times, they're different, they're fragile in many's eyes. She loves it there because she feels good, they make her feel good, and for the first time, the primary concern of those around her is actually her...not her blood sugar. It's freedom.

Our teacher, took it upon herself to learn how simple her insulin pump is to operate and how utterly hard it is to do it wrong. We have no expectations of decision making but instead created a flow chart that states if she is this number - do this, and/or call us. It has been working wonderfully. We've had no incidents of any kind and her sugars have been great throughout the winter. We love her for that, the first day Cadence came home with a star shaped post-it note stating her sugar was this, gave this amt. of insulin. It allowed my wife to re-engage in her career as a Chiropractor, get back to doing what she's so very good at. Life has been approximating normal for the first time since 7.7.19 and it's been a beautiful change.

But leave it to a lumbering sloth of an organization like the Calgary Board of Education to screw it up.

We got a call this week from the assistant principle stating that the board had a meeting about kids with diabetes. You know, a meeting about my kid that I wasn't fucking invited to. Where the group decided that "there were too many kids being diagnosed" thus the school staff was no longer permitted to give any help to the diabetic, no pump help, no blood-check help, etc. Basically saying: "too bad you have a fatal life-long disease kid, but don't bother us with it, you're on your own, now go play in traffic." I'm not naive, I get there is a liability component to this, but if my kid goes into DKA at the school because no one was willing to help her? Liability goes both ways.

So without consultation with parents, they take a perfectly willing teacher away from helping us provide a nurturing educational environment for Cadence and institute a policy that diabetics are hands off. But don't worry, if your kid needs an epi-pen for an allergy you'll have a line-up of eager volunteers though. Insulin shouldn't be discriminated against.

My favourite part of the conversation was how Cadence would not qualify for a nurse's aid to help her out as "it's very expensive, and it's not like her condition affects her cognitive ability." Oh like a diabetic coma is a perfect state to learn in. **deep breath**

The Calgary Board of Education with this decision has now taken a great program and successfully outcast my kid, eliminated my wife's capacity to work for the next 3-4 years, disrupted her social circles by Mom or Dad having to come to every snack time and lunch time to deliver insulin, and did all of this without consultation. Thanks a bunch for putting your convenience over my daughter's health, and quality of education. Thanks a bunch for deciding to be indifferent.

b.

Overheard today -

Cadence asks "mom, how sick was I when I was a baby?" We talked about being unconscious, bags of fluid and insulin going into her body by tubes, about the drill and syringes that pumped fluid into her shin and the central line doctors put into her heart to save her life. She asks "did they take all the love out of my heart". I smiled + said, "no sweetie, they kept you alive so you could keep lots of love in your heart!!" She smiled back and said "that's good, because I love my family, so much"

Just Plain Awesome.

new discoveries

I supplied the venue for an Insulin Pump information session last night at my clinic The Calgary Centre for Health. We will sometimes open up our facility to different interest groups, providing a free space to host a seminar. I had boatloads of stuff I had to get through at the office, so spending a few extra hours at the clinic last night wasn't a bad idea. There was about 20 people, there mostly parents of diabetic children. Very few people get to spend an evening with a bunch of strangers but be intimately connected through a condition. It's really kind of comforting to be in the presence of so many that know the struggle, it's an affirmation that while wandering the house at 2am looking for test strips, infusion sets, batteries, juice boxes, and hail Mary's....there's someone close by doing the same thing. The mid-day yawn and eye rub could almost be the universal handshake of diabetes.

Animas brought in Lorraine Anderson, a certified Diabetes educator and fellow pumper. The brain trust of Ward Clark, territory Manager for Alberta, the great Joe Solowiejczyk, and Teresa from the Alberta Children's Hospital were among us in attendance. The content discussed was far more in depth than just how great pumps are for managing diabetes. We chatted about matching food to insulin blousing, how to really take advantage of combination boluses, pizza bolus, super bolus, all of these great concepts that many of us have heard of but been too nervous to experiment with. Lorraine did an amazing job of empowering the group to have some "fun" with diabetes, see if you can out-think the beast. I consider myself fairly knowledgeable about insulin pumping, but found myself completely engaged and fascinated by the discussion. In fact, texting the discussion with Nicole to make sure we remembered the information. It was a really great discussion and to be honest, I found it exciting...which is so lame, but it's true! The opportunity to come at Cadence's disease from some different angles. We touched on a fair bit of topics that are frowned upon by some CDE's but in this discussion, we learned the reasons why we all do it incognito. For instance, pre-bolusing 20 minutes, overriding the pump recommendations based on instinct and experience, acceptable blood glucose departures 2 hours post meal, etc. It was great. The only issue I have this morning is that pile of stuff I had to do last night....is still sitting on my desk but i'm going to try and attack it from a couple new angles.

B.

Stats.

I've been asked to give the keynote address at the Alberta Diabetes Foundation Rations for Riches event tomorrow at the Calgary tower. 10 minutes to share what diabetes is to our family. I'm going to do a blog post in the next couple days to describe the room....I'm kind of nervous, but it's an excited nervous....it's an opportunity to change perspectives.

I had to dig up some stats tonight for the keynote and even I was amazed by what I found.

- 300,000 kids with Type 1 diabetes in Canada.

- 3-5% increase in diagnosis rate per year (that's how you spell epidemic)

- 17 BILLION dollars per year towards diabetes complications yet the Alberta government doesn't cover a single dime of preventative measures. Seriously.

- in the 10 minutes it takes me to speak tomorrow morning in front of all those hungry people, 120 kids worldwide will develop diabetes...and most of them will die from it.

It has to be stopped. Get behind JDRF, ADF, CDA, educate, learn, be part of the solution.

till tomorrow!

B.

I'm back

It's been awhile since i've posted and I have finally figured out why.

There are many reasons and excuses I could throw out there, a business purchase, crumbling professional relationships, family non-D stuff...life is busy. The reason I've been delinquent about blogging is that I wasn't sure what to write. I had a comment from someone who said, is there anything that diabetes doesn't affect? I had to think about that question and for the longest time I sat looking at the cursor trying figure out what to write about that was fun, light, not related to diabetes. Well...the cursor still blinks. Don't get me wrong, there's a majority of our lives that are not related and certainly more that we don't let diabetes affect. But that's not what I write about, that stuff is awesome. LIFE IS FANTASIC IN EVERY SENSE. Diabetes is like cousin Eddy though...always there dumping his sewage tank out of his RV and spilling it onto your beautiful lawn. That's why I vent about it.

I write this blog for me. This blog is a place of emotional catharsis. It's used to be my little internet backwater that I never thought would be read, yet I get questions and emails regularly about the content. Being the parent of a diabetic is lonely place, it's a hard disease to spot. I write this blog for us I suppose and it feels good to do it. I've connected with many others that live in the same world through detailing our times of good and bad in the last 3 years of the D. I trended away from the purpose of this page, thinking that this blog had to evolve into other things. I was wrong. This blog is for me and the Diabetics, and especially the parents of, in the world that need to know there are others out there that feel the way we feel...and you know what? It's okay.

Guilt is a horrible feeling. I felt guilty that I hate diabetes more than my daughter hates it. I felt guilty about not checking her blood sugar last night because I desperately wanted to sleep...I felt it was selfish to put my need for sleep over her long term health. Granted she's 4 years old but she still feels the lows and highs. Nic and I feel bad d-days where we just throw our hands up and say "fuck you diabetes". Keeping in theme, I imagine me like Clark Griswold talking to Cousin Eddie, "maybe drive you out to the desert, leave you for dead." without Cousin Eddie picking up the reference. I think alot of parents feel this guilt and fear expressing their feelings for fear of being told "you're not the diabetic". A man whom I'd like to call a good friend, even though we've only met twice, is a 50 year old diabetic. He said "I think, as a diabetic, it's harder on the parents that it is the kid". To hear that from someone that has the disease was in part sad but in many ways brought relief and validation that it is okay to hate it, it is okay to be angry, and it is okay to feel helpless at times and hurt for my daughter.

So, I'm back and I'm not over diabetes, never over the fact that it will try to define my daughter's life, and no...as of Thursday morning, the answer to the question "so is that diabetes settling down, you've got it under control?" will still be answered in the fashion of: the last time I stabbed her tiny finger and took her blood, it was, but I'll let you know in 2 hours.

b.

dead in bed.

I'll admit I'd never heard about the "dead in bed" syndrome until a coupled days ago when a 13 year old girl with Type 1 diabetes went to sleep with a good blood sugar, in great overall health, and never woke up.

I will make no attempt to understand what the parents of this girl must be going through. I have myself watched my daughter's life flicker and come to within seconds of ending in my arms... is an image that I will never be at peace with. To actually have your child torn from you without an explanation, a cause, or a reason is unimaginable. Once again, diabetes gets off without a mark on it....dead in bed syndrome has no official cause but is responsible for 20-60 deaths per year or the equivalent of 6% of all deaths in type 1 diabetics under the age of 40 years old.

6% of type 1's die for no known reason. The assumption is that overnight hypoglycemia is to blame. But not diabetes, amazing. This was not the fault of anyone's, certainly not the parents, they did exactly what they should have...it's just one of those things...except that it's a young life ended shortly and without closure. I pray for their family that they can be a peace with this tragedy.

Over the last few weeks, out of a sheer desire for a full night's sleep, I have skipped Cadence's 2am blood test a couple times....3 years of an alarm at 2am 7 days a week, I needed a bit of break. To read this horrific news reaffirms that we need to be vigilant about our kid's blood sugars. Their life literally depends on our diligence both in the short term (dead in bed) and the long term complications. We also need to galvanize our efforts as warriors against this disease, educate, fundraise, lobby for a remedy. Just this morning a huge segment on our local news channel about the rising costs and complications of "diabetes" without identifying the types! It was from the Canadian Diabetes Association which is almost entirely type 2 focused, talking about prevention of long term outcomes and the cost of 2 billion dollars a year to the province. What they did not mention was that the Province of Alberta doesn't cover a DIME of type 1 prevention costs, insulin, test strips, syringes, insulin pumps. People who can't afford to protect their children, have no other option but to choose conservation of test strips, re-use a syringes, squeeze another few weeks out of that vial of insulin. It's not right and has significant consequences.

Teach people at every opportunity that Diabetes is multifaceted and needs the attention of citizens, our elected officials, the change needs to come, come swiftly, and be significant in order to prevent another young life ended without a reason.

Learn on November 14th for World Diabetes Day.

b.