A family living well with type 1 diabetes.

Posts tagged ‘Type 1 Diabetes parenting’

Diabetes Art Day

Art is a journey, much like life is. It is this journey that is important; the growth and learning that results from the experience of creating, or doing. We put far too much emphasis on the end product in art. We critique and judge. We decide if we like or don’t like art. We forget to honour the journey and the message.

There aren’t many better ways to open up a therapeutic dialogue with my kids than over a blank piece of paper with an assembly of assorted sketch pencils, paints, paint brushes and glue before us and the energy of creative potential that is so palpable. We sit together and discuss our approach to a certain topic. I reassure my girls, who are still learning to not be inhibited by what the world might think, that whatever they create–it is theirs, and it is good.

Yesterday when we sat down at our dining room table with our artistic accoutrements before us, we talked about our own personal feelings about diabetes and how we might translate that on paper using colour, images and even words. My oldest daughter, Jazmine, is a very literate 9 year old. She has ambitions of becoming a writer. Not surprisingly, she chose to employ words to express herself:

Image“The Rain of Diabetes” by Jazmine Roberts

My youngest daughter, Jenna, who has lived with diabetes since she was two years old, felt it important to convey how life with diabetes isn’t all bad. She spoke to me about how she feels it should be celebrated because of how strong it makes a person. She mentioned that people should have Diabetes Parties. I found this quite interesting and I told her how I loved the idea of a Diabetes Party. She proceeded to draw this:

Image“The Blue Surprise” by Jenna Roberts

I had been trying to plan and visualize what I would create for several days before sitting down to actually create. It was becoming a source of stress for me. This should have been a red flag to me that I was over-thinking it. But it didn’t occur to me until I saw a message from Lee Ann on her “Diabetes Art Day” Facebook page that might as well have been addressed to me, specifically. It basically said to not plan it and over-think it, but just sit down and DO it. I am paraphrasing, but that is the much needed message I took from it. So, that is how I approached things. I knew I wanted to incorporate several mediums. I have enjoyed working with collage and watercolour pencils lately. Of course, one of my favourite mediums is pencil, so I was sure to employ that. What I created was something that, to me, speaks of the dark, isolation one may feel while experiencing a low blood sugar. I can’t claim to know what that feels like; however, I have witnessed many low blood sugars and have talked endlessly with Jenna about how she feels. When I showed Jenna where I was going with this, her face lit up as she examined my partially finished piece. She looked at me as though she felt validated. “Yes, Mom! That is how I feel!” She then added her own spin on it when she said, “…and it’s like the tree has diabetes too!” I don’t know why I made the tree like something out of L.O.T.R.–it just seemed to happen. I didn’t want the tree to be menacing–more empathetic. That is just what Jenna picked up on:

Image“Low” by Sherry Roberts

Just as an aside, this morning Jenna requested a party on her diaversary, June 9th. This year marks 5 years with diabetes. I think a party is an absolute must.

Please visit the Diabetes Art Day site to see countless more amazing creations from the global Diabetes online Community. We are a creative bunch, indeed.

Super Powers? Don’t All Moms Have em?

The prompt: If you had a superpower — what would it be? How would you use it?

When I was a kid, my Mom could make it all better. Somehow, her hugs and kisses just did. Even if she really didn’t actually make it better — for me, just her TLC was enough to make me feel better. It is the magic Moms possess.

Kids want Mom when they don’t feel well.

Jenna doesn’t feel well when she has a high or low blood sugar. This means she doesn’t feel well on a daily basis. She musters through, sometimes without missing a beat and no one is the wiser. But other times, the glycemic ride from hell can knock her flat on her little scar tissued posterior. She wants hugs and lots of em. She wants snuggles with Mom on the couch. She wants a gentle voice telling her she is going to be okay. She needs to feel safe and comforted. And during those times there is no place on earth I would rather be than with my little girl snuggled in my arms.

Superpowers? I’m a Mom. I’m good to go.

Jenna had a low tonight at bedtime. I employed my ‘superpowers’ to help alleviate the symptoms. Also, three carb tabs.

Health Time Capsule

For the month of April I am participating in the WEGO Health Activist Writer’s Month Challenge. This means I shall attempt 30 straight days of blog posts–one for every day in the month of April. I’m not going to lie to you, I have my doubts that I can pull this off. In fact, I’m already off to a less than stellar start, given that I’m a day late with my first post.

But that doesn’t matter. I will give it my best shot and aim to make a quality contribution to this event rather than push for quantity that may be lacking in interest and passion. I enjoy the challenge of writing from prompts but if I’m not feeling it, I’m not going to post something that I’m not proud of or pleased with. So on that note, here’s the first prompt and my humble submission follows:

The prompt: Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it?

Hello people of the future. I am the mother of a child with type 1 diabetes. I’m sure you have heard tell of this disease of the past–a heartbreaking, life-long sentence of finger pokes, injections, blood draws, doctor’s appointments, high and low blood sugars and the ever-present fear of devastating complications. It most often struck our young children, suddenly and without warning. But no one was safe, really. You are very fortunate to live in a time when this disease is merely a part of human history.

Type 1 diabetes was physically, emotionally and mentally exhausting for the people who lived with it every day. The demands of diabetes were at times immense. Imagine having to check your blood sugar by poking your finger and summoning a drop of blood anywhere from 8 to 12 times a day or more. Imagine having to count every carbohydrate you consume and calculate the dose of insulin needed to inject to ensure your blood sugar doesn’t shoot to the moon. Imagine having to have access to a considerable arsenal of medical paraphernalia at all times to stay healthy and alive. And imagine that no matter how diligent you work, no matter how hard you try you often don’t get it right. High and low blood sugars were a given–a part of everyday life. That’s just the nature of this beast.

I have included in this time capsule a copy of the blog I started and kept for years after my daughter’s diagnosis so that you might know more of what this disease was capable of and how it affected entire families. I have also included all of the items type 1 diabetics required to be at their disposal 24 hours a day, every day to live. They include:

  • blood glucose meter
  • blood glucose test strips
  • lancets
  • lancing device
  • carb tabs
  • blood ketone meter
  • blood ketone test strips
  • urine ketone test strips
  • insulin
  • insulin syringes
  • insulin pump
  • insulin cartridges
  • infusion sets
  • batteries
  • sharps container
  • continuous glucose monitor

We lived in an age that saw technology propel forward at a dizzying speed! It was incredibly hard to keep up with the latest technological gadgetry pertaining to communication and entertainment. One could go broke trying. Yet the diabetes devices and pharmaceuticals of our time were shamefully behind the times.

For the last 30 years of the 1900’s a cure was repeatedly promised to be “just steps away” or “no more than 5 years down the pike.” Finally, doctors stopped making these promises with such reckless abandon. People got wise … and maybe a little cynical too. The focus started to shift more toward treatment and prevention–not solely on a cure.

To be personally affected by type 1 diabetes is to experience a full range of emotions to their most extreme degree. It isn’t easy to cope at times. It is difficult to trust that those in the business of finding better treatments and cures are really committed to looking for that which will ultimately put them out of business.

But at the end of the day, it’s all that the people living with diabetes and those who love them have.

We must believe.

I must believe.

This is why I have written this with optimism and hope. You must know what a world without type 1 diabetes looks and feels like. In 100 years, surely the break-neck speed at which wireless communication advanced in our day finally found its way to the treatment and curing of chronic and deadly diseases such as diabetes.

…all the walks, marathons, fund raisers, the billions of dollars raised…

We as a species must have gotten our priorities in order by now … haven’t we?

I try.

I sit quietly with my cell phone to my ear, listening while Jenna takes instruction from her support worker on what numbers to program into her pump to give herself her morning snack bolus at school.

“Okay. You are going to eat 36 carbs, so make that number a 36. Three – six.”

“Okay. Three – six?”

“Yep.”

A few seconds pass while Jenna presses the up button on her pump. When the pump flies past her goal (the numbers tend to get away from you if you just hold the button down which can be frustrating) she presses the down button to make the number what it needs to be.

“Oops — You went past.”

“I know…”

“THERE! That’s it. Okay, now you press OK. Good. Now you are going to enter your BG. What was your BG, Jenna?”

“14.6.”

“Right. Good job. Okay. So you make that 4.4 a 14.6.”

“Okay. 14.6.”

“That’s right.” More time passes and I listen to the din of children in the background chatting and laughing while they eat their snacks as Jenna toggles up to enter her rather high pre-snack blood sugar reading into her pump. The seconds start to feel like minutes. I know Jenna also hears the other kids — her friends. I know she wants to join them.

“Oops. You went way past, Jenna. Okay. Focus, my friend.”

“Ooops!!”

I hear a sigh of frustration from my little girl. I feel my jaw muscles tighten and I take a sympathetic deep breath for her. I talk to her in my mind. I don’t want to add to the frustration by chiming in. Just stay calm, Jenna. Focus.

Then Jenna’s support worker gives further encouragement,”C’mon, Jenna. Look at your pump. You’re almost there. 14.6.” I imagine Jenna is looking back at her classmates who don’t have to jump through such tedious hoops before they eat their snacks.

Then, in frustration, Jenna blurts out, “Why don’t you just do it?”

Her good-natured support worker retorts, “Ha! Because it’s your job, missy!”

And there it is.

It’s Jenna’s job to give herself her insulin, a life-saving (and potentially lethal if overdosed) drug. She’s five years old and she must do this. She doesn’t know that her support worker isn’t allowed to even touch her pump, let alone give her insulin.

Jenna often doesn’t want to be bothered with bolusing herself for every carbohydrate containing snack or meal she eats. She has worn an insulin pump since she was two years old — far too young to administer her own insulin dose. Oh sure, she would, on occasion press the OK button to initiate the actual bolus after I or her Dad had done the programming. But Jenna has been spared the monotony of bolusing for most of her diabetic life. She has been doing her own snack boluses at school for several weeks now and overall, she has rocked it. And I know that the more she does it, the easier it will be and the faster she will get at it.

Even still, no matter how fast she gets at it, it’s not what most people have to do before taking in nourishment. And it’s always prefaced by the ubiquitous blood sugar check. There are just so many damn HOOPS! Is it any wonder I worry about what the future holds?

I remember in my nursing training, when we were covering diabetes, we were taught that during the teen years it is common for teens to rebel when it comes to the necessary minutia they must constantly carry out to stay healthy. It is so common, in fact, that the training we received in caring for teens with diabetes focused heavily on our verbal interactions with them and the psycho-social implications of this disease on this particular age group. And then, as if to punctuate this theory for me, during my corresponding practicum for this unit, I was assigned to a teen with diabetes who had been admitted with diabetic ketoacidosis and was undergoing further patient teaching as part of his recovery.

It was a long time ago, and I don’t remember much detail, but I do recall getting a sense that this teen was struggling. The struggle was just as much emotional as it was physical. He seemed sad. Perhaps even depressed. I felt so inadequate. I felt like I knew nothing of what this young person was going through. I felt ineffective and in over my head. I was only in my early twenties at the time and this diabetes deal that I was just learning about seemed like such a heavy burden for any person! For a teen? It must feel like the biggest bullshit, shitty hand anyone could ever be dealt. How on earth could I be of any help to this person? I was young, in training, and knew nothing of the ever-present, constant, worrisome, unpredictable, obtrusiveness that is diabetes.

I was a good student and I imagine I did my best with this patient and tried hard to NOT sound like I was reading from a script in my verbal exchanges with him. Honestly, I think I was relieved when my assignment changed. But the sadness that was so tangible stuck with me. I knew this young man was dealing with demons I knew nothing about.

And now here I am, the mother of a child with diabetes. I don’t need to tell you I have my fears. I work hard at keeping them in check. I try to look at my past professional experiences with diabetes not so much as warnings of what lies ahead but as wisdom, if put into proper perspective. I keep reminding myself that just because it is common enough to be taught in nursing theory classes and just because I happened to be assigned to a teenager recovering from diabetic ketoacidosis due to lack of self-care from typical teenage rebellion, doesn’t mean my daughter will do the same thing.

But I know how hard this disease can be. I know how exhausting and maddening it is. I know how much it can mess with your head. I also know how much being a teenager messes with your head. I’ve seen these two forces collide. I’ve seen what can happen. Teenage years + diabetes = the perfect storm for noncompliance (a term I now loath but is all too common in the medical world) and disaster.

I try to not worry so much about the future. I read about other people’s experiences and try to glean from them what is useful without causing myself too much unnecessary, premature aging worry. I try to stay positive. I try to have faith in myself and my amazing, strong, smart little girl. I try.

… but it’s hard sometimes.

Sickies in a Blanket.

Mommy and Jenna,

Both sick with a flu,

Snuggled together ‘neath a blanket

Or two.

Fevers and coughs and aches

We both share,

But Jenna has ketones;

They’re trace–but still there.

 We’re sipping fluids-

We’re resting and snoozing.

The cartoons on the TV

Are not of my choosing.

For this mommy to worry

Is really not new,

But to fret in this febrile state…

…ah…AH…ACHOOOO!!

I can handle a lot,

Countless times I have shown,

But a little back-up today

Would beat D-parenting alone.

That’s all I got. *sniffle*

Verio Cool.

I have had the pleasure of trying out a new meter from OneTouch® — The Verio™IQ. And what a sweet little meter it is.

Upon first glance, it looks a lot like an iPod! Very sleek. Very user friendly, as any meter should be. The display is big, bold and beautiful. Jenna was impressed, as was I. Jenna enjoyed tagging whether her reading was before or after eating. This is the feature that helps the meter determine if there are any trends worth noting; another cool aspect of this sassy little meter! The only puzzler was what to do if the reading is neither. Perhaps a third option to opt out of tagging a reading would be beneficial.

Update: Evidently, there is a way to opt out of tagging a reading. You simply press the go back arrow to return to the results screen or hold down the arrow to go to the main menu. Helps to read the instructions thoroughly. :)

The next feature we liked was how little blood is required to conduct the test and the fact that you can slurp up your tiny sample from either the right or the left of the strip! This proved helpful in preventing test strip waste which is something that makes me crazy. At nearly a buck a pop, the last thing we want is an error indicating an insufficient blood sample. Sometimes this happens when Jenna is doing her own checks. Perhaps she is rushing, being the busy little bee that she is. But Jenna had no problem obtaining an adequate sample with the Verio IQ™.

This meter touts SmartScan™ Technology. It scans each sample 500 times to ensure precise results. I have no idea how it does this in just 3 short seconds but WOW! This is HUGE. We rely on meter accuracy to ensure Jenna is getting the right amount of insulin, and we all know how important proper insulin dosing is.

Besides its accuracy, the feature that really got me revved was the light. This baby has a built in light to help see in the dark during nighttime testing. I didn’t have to hold a flashlight between my teeth! And I could hang up my miner’s hat too ;)

One final note, this meter doesn’t use batteries. It charges via a plug, just like a mobile phone or MP3 player! Very cool.

Over all, I like this meter, Jenna likes this meter and I think its future is as bright as its colour, LCD display.

Disclosure: The OneTouch® Verio™IQ meter was supplied to me at no charge for evaluation purposes by LifeScan Canada Ltd. I was not paid for my opinion. The opinions expressed here are my own (and to some extent, Jenna’s). I was not required by LifeScan Canada Ltd. to mention this product on my blog but it is because I am an active diabetes blogger that I was contacted and given the opportunity to try this product gratis.

Crafty D-Crafting.

So I’ve been busy helping my girls create homemade Valentines to hand out in class next week. I blame Pinterest for this sudden blast of creative ambition. If you haven’t yet familiarized yourself with Pinterest, be forewarned, it is habit forming. As if any of us need yet another online time-suck! But the cool thing about it is you can get some really neat ideas for crafts and art projects (and a plethora of other topics).

One such project that just dazzled and amazed me was this one:

You take a picture of your child holding out his or her hand as if clutching a lolly-pop, then use some sort of photo editing software to add text and embellishments, print it off, cut slits above and below the fist and feed a lolly through! Is that not the coolest thing?!

So after I had my Valentine fun with this idea, I got to thinking — how could I make use of this idea in a D-awareness sort of way? It didn’t take long for me to come up with this:

 

I think these would be cool to make bunches of and hand out at school events during Diabetes Awareness Month in November or any time there is an opportunity to raise a little awareness. What a great way to educate people about how people with diabetes can have treats too and are not relegated to a sugar-free existence. In fact, this myth is a dangerous one that really needs to be dispelled. We know too well how important and, indeed, life-saving sugar can be to a person with type 1 diabetes.

This project is more simple than it appears. Go ahead and give it a try, whether it’s to create Valentines or awareness!

 

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