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.

A Little Slice of Peace

One thing that most parents of a diabetic fear is the night. Most parents put their kids to bed, sink into the couch and enjoy the time of no-kidness for a few hours. If you're a parent of a toddler diabetic...you play the "what would a pancreas do?". Bedtime, blood check, DECISON = snack, basal, or bolus and what's going to be best while she's unconscious for the next 8 hours. Lots of decisions to make.

For the last 3.5 years, I have set my alarm clock 7 days a week for 2am. I get up, walk down the hall to Cadence's bed, slowly creep in, pull back the covers to find her feet, lance her toe, squint to see the blood drop in the dark (c'mon testing light!!), see the number and decide what to do - DECISION - bolus, basal temp, wake to juice. Then I go back to bed, close my eyes...debate my decision...stay up for another 45 minutes because now I'm awake, made some mental calculations, started the mental machinery...and I get up at 5:30am for week absolutely trashed. I carry my luggage under my eyes :-) . Have I snuck a full night's sleep in here and there? Maybe once or twice. Usually what happens is I wake up to my alarm, decide not to bother, then lay there for 45 minutes thinking about checking her...then finally get up to do so, stay awake for another 45 minutes...rinse and repeat. LOL it's a never ending cycle of self-fail.

So last night, Cadence, for the first time that I can remember climbed into our bed at 10:30pm and stayed there. Normally this is a habit your don't want your kid to get into but strangely, this morning I'm kind of happy that it did. I still checked her at 2am but she was all curled up right beside me (makes me smile to think about it). The best part was that she was right there, I could hear her, know she's all good and I fell right back to sleep. At 5:30am this morning I had this funny feeling....oh yeah it was rest including piece of mind.

Weird.

Hailey has herself all around diabetes as well, she's been watching and learning for her 14 months of existence. Without the ability to say hi, she now knows the steps to checking blood sugar and gets mad when she's cant do her own everytime Cadence reluctantly has her blood tested - Oh the irony!

b.

Hormone Discrimination

Choose your injectable hormone wisely as it may be discriminated against.

I say that sort of tongue and cheek but it does directly stem from an interesting conversation that I had with the officials from the Calgary Public School system. As Cadence is getting older, she is starting to understand more about her disease and the role that it plays in her life. She is also asking alot more "why" type questions. These are great though, she knows exactly why she needs to have insulin. Being 3 years old, Cadence is getting to the age of going to school. An exciting, yet terrifying destination for us as parents as it will be the first time that we have to loosen our grip on her diabetes. In advance of the day, I wanted to find out more about how diabetics are handled inside of the school system and was quite surprised at the answers...or lack there of that I was provided.

I asked what the policy on diabetics in school is, to which I was told that there wasn't one. I then asked the simple question of whether or not someone in the school would be able to do a simple blood test with Cadence. She's 3 years old and can do it herself, but if someone in the school could supervise it and give her some insulin through her pump, that would be great. I was given the response "our teachers are not trained to do procedures, so no that would not be a possibility, but they will provide juice if required." I retorted "but how would they know if she needed juice without a blood sugar?" and was again hit with "our teachers are not trained to do procedures."

The conversation was stalling at this point so I tried to angle it a little differently. I said "okay, so if a teacher were willing to learn, based on my instructions to do a blood test and deliver insulin based on my direction, would that be okay?" Again, I was given the "our teachers are not trained to do procedures line.".

My frustration is growing a bit here, I can completely see their point on the issue: blood, DECISIONS, and most of all LIABILITY. So I asked my question a different way. "Alright, so if you have a child with a severe peanut allergy that eats a peanut butter sandwich because they're hungry, how would that child get an epi-pen or epinephrine injection?" I received this puzzler:
"All of our teachers are trained to use an epi-pen to an allergic child"....sounds like a procedure to inject a hormone doesn't it.

Giving juice to a diabetic is the same as giving a kid with a peanut allergy a peanut butter sandwich because they're hungry. The difference is how your chosen life-saving hormone is classified.

I asked them, what's the difference if the two are just injectable hormones? If Cadence did her own bood test and she required a set pre-set bolus of insulin...what would be the difference between an epi-pen and an insulin pen?

There was some dead air on the phone for a minute...and then...."our teachers are not trained to do procedures, as I've mentioned before, but let me give you the Principles number."

What's your school's policy on Diabetes?

B.

DIRONY

No, I didn't misspell the title, it is exactly that. The heart of diabetes is it's own irony. It's a disease of paradox, where everything that should be normal is in fact exactly the opposite of. There are so many ways and reasons to hate it, but sometime you just have to admire and laugh at how clever this foe actually is. It's a brilliantly designed disease. Attacks one specific cell among the millions in your body and produces system effects. It will never be held responsible, but will end a life. Takes the simple pleasures of life and changes them to stresses. It not only affects the host but everyone around them. It truly is a magnificently designed enemy.

The irony of diabetes is especially present in kids, it wages war on the behavioural, the social, the economic, and not to mention the physical. It seems that many things that are the saving grace of parenting and being a kid are the most dangerous in a diabetic kid. Confused? Here's some examples to prove my point.

If your 3 year old has a temper tantrum, most parents would let them hash it out until they settle. With diabetic parents...we have to do that and then treat with a juice or candy since all the thrashing around causes a low. We have to reward the tantrum. Awesome.

Diabetes 1 - Parenting 0.

If you are preparing a nice family meal for you kids and one of them decides not to eat? Most parents would say "no problem, but there's no food later." If you've injected your 3 year old with a pile of insulin in this case however..."okay, let's have a bunch of candy then since you're likely to go into a coma in a couple hours if you don't eat". Reward not eating with sweets. Excellent message.

Diabetes 2 - Parenting 0.

With normal families, if your kid wants to play with friends, you find no other better stress reliever than to watch your child's endless energy expended with other kids'. In a diabetic family....you stress about how much Insulin is on board, did she have enough carbs to buffer it....did I bring enough candy to get her out of the impending low?

Diabetes 3 - Parenting 0.

In a diabetic family, there's not many more uncertain things than a night's sleep. You can't sleep while worrying that you might sleep through a scheduled blood check, miss a low and your 3 year old getting in trouble. You end up getting up anyway, check the sugar and make a decision if you can sleep for another 4 hours or not.

Diabetes 4 - Parenting 0.

So many examples of how a little thing like a pancreas can take "normal" and turn it on it's head. It's not an entirely one sided battle however.

If diabetes has the upper hand one day however, and is letting the blood sugar go high....you as a parent take great sorrow in the fact that you have to put a needle into your child for the 4 thousandth time...however there is an unspoken guilty pleasure in the fact you get to fight the disease with a sharp object. Take that Diabetes!...take that!

Diabetes 4 - Parenting 4000 and counting. WIN!! ;-)

b.

A view from the inside

We often have to remind ourselves about the little girl in the diabetic. One of my greatest fears is the regret that her childhood is less memorable than her A1C's...I must not make the mistake of raising my diabetic instead of my daughter. Too often we look at her blood sugar before we look in her eyes.

Last weekend Cadence went to a birthday party, at which she met a father of one of the kids who is also a diabetic and an insulin pumper. I've talked to Cadence alot about her pump, her "special button" (infusion site), and all about how it's pretty cool that she has one. Ending soon, are the days when she can view her disease as an advantage. I hope she adopts the mindset of opportunity vs. misfortune. The man who she met showed Cadence his insulin pump and her eyes lit up. She was almost amazed that someone else had one. It was a connection that she's not made yet in her life, an instant kinship with another person. The ability to communicate with them empathically vs. being communicated to sympathetically about diabetes. It was an extremely important moment for her and while I am so happy she had the chance, part of me feels robbed that I'll never be able to connect with her that way. We'll have a plethora of incredible moments as father and daughter of course...but the single most important aspect of her life and longevity, that Nic and I for the last 3 years have managed around the clock...is never something we'll truly understand, and she'll never being able to truly share with us what she feels. I don't wish to have Diabetes...but I do wish I knew what it was like so that I can be there for her in more ways than the guy with the sharp stuff.

So, they talked for a few minutes and she asked him if he cries for "special buttons", to which he says "no... I don't cry, but sometimes they hurt, and sometimes the don't."

Cadence just said "Yep". That was the expanse of the interaction... but it completely changed her diabetic experience. Perhaps she now knows that there are others out there.

We interviewed a nanny last night for the girls as Nic really wants to get back to work. The nanny, is also a type 1 diabetic. We look at this in two ways, one we feel very slight some reservation about the remote possibility of her having an insulin reaction while in the care of our kids....in the other sense what an advantage for the care of Cadence. Someone with an understanding of what it's like. The nanny showed Cadence her insulin pen and blood checker, to which Cadence again had an instant connection.

For the last 3 years, we've tried to make Cadence's condition as anonymous as possible, try to make her feel as normal as we can. Perhaps however, we haven't defined normal properly. Perhaps more exposure and more frequent interactions with diabetics is what she needs in order to frame her world as normal. Perhaps our vision for her, is incompatible for her? I wish I could see the view from her eyes, so that we can make the best decisions possible...perhaps that is however, the crux of parenting.

b.