Tag Archives: fund raising

Diabetes, family, JDRF

It's good to go for a walk around the mental blocks

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The experience of Type 1 Diabetes is collective and individual at the same time.  Everyone who has Type 1 will experience these events/symptoms/effects. Everyone who cares about (and provides care for) a person with Type 1  will also experience common events/symptoms and effects.  This is not news to anyone. It happens in just about every chronic illness and in the families who find this unwelcome guest in their homes. And hearts.

The annual fundraising “Walk to Cure Diabetes” …or as we must now call it, “The Telus Walk to Cure Diabetes” – welcome to the world of branding, it can be a building or an event but you too, with enough money, can own a temporary place in history – was in June and the amount of money raised has just been announced – Victoria $135,000; Nanaimo $35,ooo; North Island $35,000 for a Vancouver Island total of $205,000. That will buy a lot of rat chow.

The benefit of this event, however, goes so much further than the fund raising.  One of the biggest effects of a diagnosis of Type 1 on both the person diagnosed and their family, is the sense of being torn out of the world. This morning gives back a sense of community. Even if you don’t know anyone else at the event you see the other families and they still have dogs, other kids and the sun still shines on us all.

walking along Beaver Lake Beach

If this sounds familiar, it’s probably because I’ve written before in this blog about the walk, in 2008… I just wanted to bring it up again because I have been neglecting this blog so it seemed like a good place to start up again – on a positive note. Also it is something that is worth talking about again, even briefly, just to point out there are high points in life with Type 1.

education, family, health, JDRF, Juvenile Diabetes, research

Time to put my cap back on my head

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for another year, anyway.

The JDRF walk in Victoria is over for this year and all the fund raising pressure at the family level is off for a few months. It isn’t fair, actually, to imply we are pressured to raise money – after all, what kind of parents would we be if we didn’t do whatever we could to help cure our children? The biggest benefit of the walk for a newly diagnosed family is to see just how many other people there are affected by the illness.

That’s one of the other things that never gets listed, just how isolating the experience is at first. You spend days with doctors and nurses, cloistered in a hospital and then spend months sleep deprived, working days in a twilight of worry while you spend nights waking every few hours to test blood sugars and calculating adjustments for insulin doses. Even when you go out, you are huddled with your child in the bathroom, trying to remember the current ratio of short acting and long acting insulins and getting the injections ready. People come in, people go out, they cast quick glances over at mother or father and child, the needles, cartridges, glucometer and can’t figure out what’s happening. The sight of the syringe is usually enough to drive the strangers away. They don’t want to know.

Then, after a few weeks or months of this you walk into a park filled with balloons, music, people dressed up, whole groups of people wearing the same coloured t-shirts declaring “Tommy’s Team” or “Mary’s Minders” or “Team Turbo Tess”…and different companies who have joined in the effort sponsoring tents giving away food or balloons or whatever they think kids would like. It’s a freaking festival in the middle of one of the crappiest moments in a parent’s life!

And you feel safe. You feel part of something rather than walled away from the world. I don’t know of many people who can get through the first hour of that walk without fogging up or crying outright. The demons of guilt, fear, “dear-God-why-me? I-hate-you. Please-don’t-let-my-baby-die-while-I-sleep-in-the-next-room” are chased away by realization there is a future; these people have survived those first horrible weeks and now you will too. After that the idea of raising money doesn’t seem such a bad thing.

And every year when we get our group together and show up it is the same feeling – that rush of finally finding something positive in all this, of not being the only one, of not being alone.

Even people of faith give thanks for a glimpse at God’s plan at some point during the morning. It’s a gift. And when the demons come back – because they will – you have something to cradle in your hand, hold to your heart and cling to in the dark, long nights ahead.

family, Juvenile Diabetes, research

Cap in Hand

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It’s getting to that time of year when fund raising activities start to focus on one specific event. The JDRF walk is next month and now we start going to friends and family asking them to sponsor us in this walk. It is a way to feel like we’re actually doing something.

To some degree it is symbolic but every penny adds up, y’know, and research is the only way – it is getting close – but even a million dollars here or there only pays for mouse chow, in the scheme of things. The real money comes from the pharmaceutical companies. JDRF lays the groundwork in terms of theoretical research and then big pharma steps in with money to refine it in terms of something useful to them, something marketable.

I remember way back in the late 60’s when these walk things began, the pledge was for so much per mile or per lap (when the swimathons started up). The first walkathon was 25 miles and it took place in one day and boy were my feet sore by the end of it. I was with my best friend, Mariane, we walked all over Edmonton, ate junk food and drank lots of pop. When we finally got to the end I phoned Dad for a ride home then went behind some hoarding and puked up what seemed like everything I’d eaten that day – grape, onion and garlic flavoured lumps of something formerly potato-like.

But I digress, nowadays, walkathons are everywhere for just about everything and are only a few kilometers. I’m much older, however, and find even a few klicks when going up and down and through bushes and in the middle of a big crowd just aren’t that much fun. Especially the crowd part. Being short I tend to get claustrophobic in crowds because I can’t really see where I’m going.

So, is it ethical to get people to donate money to an organization that supports desperately needed research based on the premise of walking a certain distance and then bail after walking a short way then back again? Bearing in mind one of my ankles is severely arthritic and I have mild asthma and the money is the same whether I walk 10 kilometers or 10 feet.

Now, if there was an actual relationship between the distance walked and the actual progress made on a specific research project, I’d go around that damn lake 10 times. But there isn’t. It takes a lot of pledges to feed those mice and they’re the ones that are going the distance in making change happen.

So this is the time of year to go around to friends and those family members who aren’t here and able to participate themselves in the walk, cap in hand, knuckle to forehead, asking for a few more pennies. It’s at this point in time I think to myself I hope they find the cure if only so I don’t have to go through this process anymore.

family, health, Juvenile Diabetes

wrestle a bear

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This was a column I wrote for the Esquimalt News, May 2005 and later used as a podcast on Babas Beach.

There is a long list of things I hate about my daughter’s diabetes. I mean things above and beyond the obvious ones of her having to puncture herself several times a day to measure blood sugars or administer insulin. Or all the things the future holds if my angel doesn’t keep her blood sugars in a reasonable range: blindness, kidney failure and limb amputation, to name a few.

Nope, there are a few other things, admittedly a little further down the list of concerns and irritations this pancreatic spanner caused when it was tossed into the general works of my life. Yes, I said “my life”. Sometimes, believe it or not, it really is all about me. If I can take on all the guilt and blame that goes along with the price of admission to parenthood, surely I can also lay claim to some sympathy time for those moments when my little bundles of joy bring home injured birds, weird friends, contagious diseases for which I have no immunity and the odd chronic illnesses for which there is no cure.

Yes, I know, she is the one with the insulin pump keeping her alive by means of a thin tube of plastic and a wicked long needle she has to re-insert every three days into another place on her tummy. She is the one who has to do the finger pokes and take insulin and get paraded in front of a series of medical professionals on a regular basis, every one of which asks the same questions and stress the same need to be vigilant about her blood sugars. Not only does she get the standard haranguing from parents about her homework, the current bio-hazard rating of her bedroom and “who was that boy you were talking to?”; she also has to put up with being reminded several times a day to do finger pokes, what was your last blood sugar, is it time to change your pump site, how many carbs are in that cookie and did you increase your insulin enough to take care of it?

Here is the true evil of this particular illness: it hits kids. From babies to teenagers it robs them of their childhood and burdens them with the dark truth of their mortality. If there is one thing I hate the most about this wretched disease it is that my daughter was robbed of those precious years of her childhood dreams of immortality. When she was 10 she had to grow up overnight and realize life could end for her in an instant.

How can this be about me, I hear you ask. Well, let me put it this way; ask any mother if she’d stand in front of a gun to save her child or face down any threat to her baby. I’m pretty sure most fathers would gladly arm themselves with a butter knife and fight a bear if it would save their little girls from one broken heart. Now, ask which will hurt more, a bullet, a bear or the knowledge there isn’t anything you can do to keep the hurt and the broken heart out of your baby’s life?

Being a parent of a child with diabetes means knowing he or she has to physically hurt themselves repeatedly throughout the day in order to stay alive. It means dealing with the emotional fallout when a well meaning adult- who doesn’t know there are three types of diabetes, two of which have nothing to do with the current catch phrase of “lifestyle choices” – teaches your daughter’s class that diabetes is caused by being fat, lazy and eating too much junk food.

Then there are those dear folk who insist on taking her or me or her grannie aside to tell us insulin only makes diabetes worse, she should be taking this vitamin or going to that naturopath or eat a diet of tofu and groats. Fortunately, my daughter has more sense than a lot of adults.

I guess it is more accurate to say we are a family with diabetes because it affects every single one of us. Even the dreaded big sister, who will smother me in my sleep for what I am about to reveal, knows she can’t protect her rotten little sister from this one cowardly bully. Hard to believe, I know but it’s true. One day at school her class was lined up for a vaccination against one of the many Ite-esses starting with the letter H. A girl in the line kept whining about why do they torture kids this way, gawd, like, the size of the needle, the pain, how sick she was last time…the usual things. My first born fixed this classmate with her patented dead fish stare and said “quit your complaining, friend, my sister has to do this four times a day. Be grateful.” She may have used a fewer words and slightly more pithy language but that was the gist of it. Now I have to go into the parent protection program.

Okay, there are a whole of things I really don’t like about juvenile diabetes. At this time of year, however, I’m supposed to be upbeat and talk about how close medical research is to actually sending this particular demon back to the seventh level of hell where it belongs. And it is; it really is getting closer every day. But close only counts in horse-shoes and hand grenades, as the old saying goes. And lab rats don’t work for free, y’know.

So, when it comes to my daughter I’ll swallow my pride, brow beat my co-workers, friends and family to pledge me in the June Walk to Cure Diabetes. Whether I like doing it or not, at least it is one way I have of actually doing something. And it is a little less painful than wrestling with a bear.

If you want more information, go to the website www.jdrf.ca . If you don’t have a computer, call the foundation, toll free, at 1-877-287-3533.