I’m Always Learning.

I hate the term ‘perfectionist’ but I’m guessing there are probably a few people who have used that term to describe me. Even in my artistic pursuits I have been drawn (pardon the pun) to the more intricate styles and mediums, like pen & ink and pencil. These are the mediums I could control and direct more. Precision was my artistic passion. I shied away from paint which is less easily controlled. Although I adore colour and always envied the artist who could just unleash and let the paint fly. 

And then along came diabetes. 

If there was ever a thing that refuses to be tamed or controlled, it’s diabetes. There are good days and bad, but things never just level off and stay that way. It is a constant, exhausting, sometimes scary roller-coaster, with plenty of uncertainty and unknowns. So much so that those of us who live it every day are compelled to seek out others who do the same. We can offer valuable support and understanding. None of us are perfect, but we are struggling to do the best we can with a disease that refuses to be tamed, while juggling all other aspects of our lives.

I can’t really put my finger on any one thing that I have learned. There isn’t something I can file under “learned” as in “Cool. I know that now. On to the next thing.”

But most of the significant and meaningful learning I do is an ongoing process. I am learning to accept that people who don’t live this day in and day out simply don’t get it. How can they? It’s like being a parent; you don’t have a sniff until you are one. I am learning to accept that diabetes is not a precision oriented disease. It is far too riddled with variables to ever be anywhere near precise. I am learning to be okay with the fact that there is no way I can do this perfectly. I just do the best I can. I am learning a lot about balance in life - both mine and my child’s life with diabetes. 

There are so many people in the Diabetes Online Community living with diabetes and living well. They don’t let diabetes dictate the course of their lives or stop them from doing what they love. That is what I want for my family - for my children - for my little girl who will take this disease with her when she ventures out into the world on her own.

I think one of the most valuable lessons I am learning with the help of the Diabetes Online Community is to put down the pen and pick up a big, messy, unpredictable paint brush once in a while. To take some risks now and then. To let the paint - in all its colourful glory - fly and fall where it may. To embrace the chaos that is inevitable in life.

The resulting work of art may very well end up being a beautiful masterpiece.

Snapshot Saturday.

Recently, I called Animas to report that Jenna’s pump was behaving oddly. Animas, being the amazing company they are with an emphasis on great customer service,  quickly established that she should have a replacement pump sent immediately and the old, misbehaving one was to be returned to them.

Upon receiving the new pump and meter (they didn’t have any pink replacement pumps in stock so I had to settle for a whole new kit. RATS!) I opened the package up and proceeded to program all of Jenna’s settings into the new pump. Then I installed the battery in the new meter, bringing it to life in all it’s high-def colour contrasted glory! I was so jazzed about this new spiffy meter that I had to subject Jenna to a blood sugar check right away.  When the reading appeared, I ran like the wind to get my camera.

Check out the very first blood sugar reading taken with her new meter:

Jenna couldn’t care less what her blood sugar reading is.  She just wants
to make sure her pump skin fits on the new pump. Priorities, you know.

 Now check out the picture of the meter in the manual:

I’m going to take it as a good omen that Jenna’s very first blood sugar reading on her new meter was a picture-perfect 5.8 mmol/L and matched the illustration in the manual. What are the odds?

Here’s another picture of Jenna awaiting her favourite breakfast treat - a blueberry banana smoothie. You can try the recipe here. They are quite tasty - a good choice for breakfast if a little physical activity is on the morning’s agenda:

This angelic smile is actually Jenna trying to be patient
with my incessant picture taking.  She wants to
dive into a smoothie!

  

The Awesomeness of D.

I thought of interviewing Jenna again regarding today’s topic for Diabetes Blog Week.  I mean, in spite of the fact that, due to Blogger’s blunders, my post of Jenna’s Ten Things shows no comments (at least that is the case as of the writing of this post), plenty of people did comment and seemed to really enjoy hearing from Jenna. But then I got thinking about it and I know what she would say if I were to ask her what she likes most about having diabetes. 

Now, remember - she’s five.  And you should also know that the child has a wicked sweet tooth. Yes, it’s life’s cruel little irony for our Jenna. She lives for dessert. My other non-diabetic daughter? Not so much. 

So, I was almost 100 percent certain she would answer that her most favourite thing about having diabetes is carb tabs. She loves em. Can’t get enough of em. Just to make sure I wasn’t assuming too much, I actually did ask her. And suffice it to say, I know my kid.

Which leads me to what I see as the most awesome thing that has happened because of my daughter having diabetes. 

Three letters: D.O.C. 

Yes, the Diabetes Online Community has been a tremendous source of comfort and support for me personally these past three (almost) years. I honestly don’t know where I would be if it weren’t for Kerri writing a comment on one of my first blog posts encouraging me to continue blogging, Lee Ann and her beautiful, artistic spirit coupled with intelligence and wisdom, Karen (the brains behind Diabetes Blog Week) and her help with carb counting via Twitter and pictures from my iPhone as well as her words of encouragement, Lorraine and her amazing example of how to be both an incredible Mom and an amazing substitute pancreas for her son, Alexis and her awesome-tastic passion and power, George and his big, bacon loving, Ninja heart, Scott and his kindness and commitment to raising awareness, Mike and his generosity and thoughtfulness, sweet Jess - lover of all things “Jonas” and always keeping things Disney, Stacey and her incredible retweeting ways, Scott and his humour and hugs just when I need them most....and so many others that I could fill volumes. 

Knowing that these people are out there living the reality that is diabetes, just like my family is, every day, every hour, every minute - that they understand what we go through and have our backs - makes this journey with diabetes a little lighter and a lot less lonely.

Maybe one day I’ll be able to thank you in person. Until then, it is a pleasure to be a part of this amazing community. Thank you, thank you, a thousand times - thank you. 

D-Blog Week: Jenna’s Ten Things.

Today’s topic is one that I’ve recently covered - threefold, in fact. I came up with a whopping thirty things I hate about diabetes in a weakened moment of exhaustion. It felt good to get those things off my chest.

So since I have had my chance to vent, I think it may be a good time to hear from Jenna on this topic. I interviewed her this morning while she ate her breakfast. She seemed to enjoy the opportunity to have some input. I may have to give her more chances to be heard. This could mean the D-OC has another cute little junior member to welcome!

Me: Jenna, the Diabetes Online Community wants to know a few things that you don’t like about having diabetes. Would you like to share a few things you don’t like?

Jenna: [nods while eating her cereal] What are you typing?

Me: Nods while eating her cereal. [laughing] Okay. Hit it.

Jenna: Number one - I don’t like when Daddy says “Then how ‘bout we do a check on your toes?”

Me: Daddy’s joking, of course.

Jenna: Yes, he’s joking. Number two - Umm...site changes. Number three - having to wash my hands all the time before checks. Number four - and I don’t like checking my fingers after I wash my hands. Number five - I don’t like having to wait to get a bolus before I can go out to play. Number six - Sometimes I feel all floopy because I have to get stuff done like brush my hair and brush my teeth. I don’t like that.

Me: Oh. You mean, like that low you had yesterday when we were trying to get ready to go?

Jenna: Yes. When I’m low.

Me: And I had to help you with all that stuff until your blood
sugar came back up, right?

Jenna: Yes.

Me: So what’s number seven?

Jenna: I think I might do 100 things.

Me: ...one hundred things you hate?!

Jenna: Yep.

Me: Let’s just shoot for ten right now, okay?

Jenna: Okay. Number seven - Sometimes I can taste the alcohol when
you are rubbing it on my skin.

Me: So when I prep the area for a new site, you can taste the alcohol vapours?

Jenna: Yes. It’s yucky.

Me: Is there anything else you can think of?

Jenna: What number are we on now?

Me: We are on number eight.

Jenna: Remember that time you had to give me a needle in the night?

Me: You mean, an injection I had to give you because your blood sugar wouldn’t come down?

Jenna: Yes.

Me: So you don’t like needles.

Jenna: Right.

Me: Okay. Number nine.

Jenna: I don’t like it when you try to do checks on other fingers. I only like my pointer fingers checked. My thumbs and pinkies are very delicate.

Me: Okay, we have one more to go, Jenna. What’s your number ten?

Jenna: Blood work. That’s what I hate the most.

Me: Thanks, Jenna. I think the D-OC will enjoy hearing from you today!

Jenna: Thanks. I’m going to go play now.

D-OH!

For all the seriousness of this disease there can be some pretty funny moments. Like the time we were driving and Jenna decided to make a snack out of one of her books. In my frustration with her penchant for destruction I said something that totally broke the tension of the moment and made us see the lighter side of diabetes.

Then there was the time I treated my purse for a high blood sugar.  I blogged about that one last year during D-Blog Week.

Well, apparently I haven’t given up my mission to ensure inanimate objects don’t suffer the effects of  hyperglycemia.

Just last week after the girls and I returned home from a swim at the pool, I had them jump in the tub for a quick bath to rinse away the chlorine.  The girls were still in pool mode, engaging in lots of splashing and frivolity resulting in a lake forming on the bathroom floor. I approached the tub to administer hair washings and was less than impressed to find myself wading through a rather large puddle.

Swell.

“Are you kidding me?! You have more water outside the tub than inside!!” - clearly an exaggeration, but isn’t that what we parents do?

The hair washing process didn’t go smoothly and I’m sure my already frustrated state didn’t help. But neither did Jenna’s antics. Antagonizing her sister, dodging the shower spray, sending bath toys soaring through the air, squirting me with squirt toys (who’s idea was it to arm them with squirt toys in the bathtub, anyway?!) By the end of the bath I was completely tapped out of patience and convinced that a possible low blood sugar was at play.

At some point J had heard my frustration and had arrived on the scene, ready to help out. I was in super-efficient,  just-get-these-kids-dried-off-and-let-me-go-drink-copious-amounts-of-tea-while-staring-into-space mode.

Jazmine got out of the tub first, then Jenna. I wrapped towels around them both. I quickly dried Jenna’s index finger and performed a blood sugar check, certain I would see a number warranting a snack. But the number that appeared required a small correction instead.

Mumbling something about how crazy these kids were making me, I dialed up the recommended dose of insulin on the meter and pressed GO with conviction. I heard the familiar, yet perplexingly distant tshsht sound. I looked at J.  Simultaneously we turned our attention to the hall.

“You just bolused the newel post” J said in way too calm a manner for the degree of frustration I was feeling.

Closing my eyes and shaking my head at my own foolishness, I recalled placing Jenna’s pump on the newel post at the top of the stairs while she had her bath.

“Yup. I know."

The frustration disolved rather quickly as I gave in to the comedy of the moment and we all shared a chuckle.

Funny how life seems to know when you need a lesson in how to not sweat the small stuff, isn’t it?

Sometimes a little D-humour is a very good thing.

A Love Letter.

I thought of writing a letter to diabetes for day two of D-Blog Week.  But I have a policy regarding excessive profanity on my blog. (Total bullshit, but it sounded so damned admirable, didn’t it?)  Besides, after my blog post last week itemizing thirty things I hate about this disease, I’m in need of a little love.  What better way to feel the love than to write a love letter to my precious little girl.


Dear Jenna,

I saw what kind of incredible stuff you are made of when you were only just barely two years old.  It ripped my heart out to watch you have to be so very brave.  You were still my little baby girl - still in diapers. We had been making some progress with potty training in the months leading up to your diagnosis. But the onset of diabetes stalled things for a while.

We had to place cotton balls in your diapers in the hospital to collect your urine to check for ketones.  And there were always ketones. So much ketones. The nurse in me knew what that meant; you had poison in your blood because of the fat you had to burn for energy because you couldn’t make enough insulin. And my heart continued to ache with every ketone strip that told the tale of a little girl who had come too close to disaster. You grew up so fast during those few days after your diagnosis.

It hasn’t been easy, these past three years. The first year was the worst. I immersed myself in the management of your diabetes. My aim was to study it, like a warrior studies his enemy.  I wanted to know this beast that had forced itself into our lives.  I wanted to try to learn its every quirk and nuance. So I read books.  I studied the numbers that I carefully recorded in notebooks which I have kept to this day - documenting with great care your blood sugars, what you had eaten and how much insulin I had given you. I poured over the data looking for trends and clues as to what to expect. I now know that you can study the numbers all you want; diabetes will often contradict all that you think you know.

Looking back I think that first year of diabetes immersion served two very important purposes: It helped me to do what I had set out to accomplish - to learn as much as I could about your diabetes, and it served as a diversion from the ache that was ever present in my chest.  I was grieving - grieving the loss of a “healthy" child without any physical challenges.

I was all business during the day, going about my busy daily routine of being mother to two little girls - one with diabetes. It was an excellent distraction. But at night, after I’d put you and your sister to bed, tuck you both in with stories and kisses and a bed time blood sugar check, I’d sit in the kitchen with my cup of tea and far too much time to think, remembering the way life before diabetes was for you - for us. So much simpler. Less physical trials. Less worry.

On your first year after your diagnosis, your “diaversary” as it is affectionately called by the DOC, I wrote how acceptance had taken place. But in all honesty, and in the clarity of hindsight, I can say that it was still quite raw for me then. I can remember, at the time, feeling the lump forming in my throat as I typed that statement. I was trying to convince myself of it. I didn’t want to complain or seem ungrateful for what I had.

But now, almost three years have passed. We just celebrated your fifth birthday. You have grown so much. Diapers, along with the our pre-diagnosis days, are a dim memory. You ride a two-wheeler (albeit with training wheels, but a two-wheeler nonetheless!) You choose your own clothes and often your fashion choices impress the heck out of me. Okay, sometimes they scare me a little too with the juxtaposition of patterns and colours, but that just makes me all the more proud of the strong-minded individual you clearly are. Oh my goodness, are you strong minded! Strong-willed...strong everything.

You are more than capable of checking your own blood sugar (when you want to) and you can even read the number on the meter! You are so tall - tall for your age. You can help yourself to snacks in the fridge and you always let me know when you want to eat something so I can carb count for you (I’m pretty sure you do, anyway.)

Site changes are old hat. Remember when they were torture? You would cry so much. And my heart would break. Yet again.

But not anymore. You roll up your sleeve, or expose your upper buttock without so much as batting an eye. You. Are. Incredible.

I can recall reading somewhere - I can’t recall where, now - that managing your child’s diabetes does get easier, but it never gets easy. Truer words were never spoken. It really has gotten easier since that first year. By no means is it easy, but it is a part of our lives - woven into the fabric of our family almost seamlessly. We make it look easy to onlookers. And I can say that you have played a significant role in helping me to get to this point. Yes, you have helped me! I’ve watched you muster courage that many adults haven’t had to tap into yet in their life’s journey. I have seen you get tough and accept what is non-negotiable. I have watched as you make conscious decisions regarding food choices based on wisdom that is beyond your five short years on this earth. I have seen you gain an independence in life that fills me with awe and respect for you.

I am so proud of you, my dear little one. You inspire and impress me constantly. Both you and your sister are two of the nicest, most fun, interesting and delightful people I know. I am filled with gratitude that I am the person who gets to be Mommy to you both. I know you are very well equipped to deal with this diabetes hand you’ve been dealt. And I will always be here for you when you need a break. Or a hug. Or someone to eat too much ice-cream with.

I am honoured to be your Mama. I love you endlessly.

All my love,
Mom

Admiring Our Differences

Here it is.  Day one of D-Blog Week 2011!

I try to teach my daughters to empathize with others. I feel this is an incredibly important ability to have in this world. The ability to imagine what someone else might be feeling given their unique circumstances is a powerful skill. This skill, once honed, results in compassion. And a little compassion goes a long way for someone living with an invisible disease like type 1 diabetes.

Both my girls are walking their own path in this world.  I have the great honour to walk beside them right now -- to share in their triumphs and trials as any parent of young children does.  A lot of their experiences I can relate to.  I was once 5 and 7 years old.  I do have a few points of reference.  But there are some things I am unable to relate to as much as I would like.  For Jenna, it is how it feels to have type 1 diabetes. 

I do know what it’s like to have a chronic illness and I have drawn from my own experiences plenty of times while attempting to relate to Jenna.  I am asthmatic. My asthma was less than adequately controlled for the majority of my childhood. It was exacerbated by allergens and my living environment usually included some of the worst offenders.  Therefore, more often than not my breathing was compromised to some degree.  So, in this respect, I can understand what it is like to feel less than stellar most of the time.  It makes being a cheerful, happy, light-hearted, energetic kid rather difficult at times.

I would imagine this is similar to how it can feel when a child has a high or low blood sugar.  It can make you feel pretty rotten. You may find it difficult to be patient, civil and even-tempered when you are battling a blood sugar that doesn’t want to descend from the stratosphere or is plummeting through the floor. You might get a little punchy or find it hard to want to cooperate. Not that diabetes can be used as an excuse for nasty behaviour. But it certainly needs to be taken into consideration, particularly with young children who haven’t yet developed enough self-awareness and insight to be able to identify how they are feeling and associate it with a cause.  

While I can relate to feeling misunderstood for behaviour resulting from the physical trials of a chronic illness,  I can’t relate specifically to how it feels to be hyper or hypoglycemic. Barring a diagnosis of type 1 or type 2 diabetes in my future, I will never know how it feels to have a fuzzy-toothed blood sugar of 15 or higher.  And while I have gone a long time between meals and had a blood sugar ring in at around 4.8, I have never felt the kick-in-the-ass of a 2.1.  

So who do I look to for insight into how this disease can make my daughter feel? Why the adult, type 1 members of the DOC, of course! This is why I reached out to the online community to begin with. They help me to understand what my daughter goes through as she endures the daily highs and lows.   I have learned a great deal from this group of people. I read their blogs and find little snippets of information that help me to empathize with my little girl. I have gained enough insight that I am able to offer some compassion and comfort to Jenna when diabetes has been particularly difficult and left her feeling chewed up and spit out.  I was unaware until recently that if someone with diabetes has had a stubborn high for a prolonged time it can leave her feeling exhausted and sluggish for a day or so afterward!  This, I understand, can be the case after a bad low as well -- something to keep in mind when the number on the meter says things are back to normal but your child still seems out of sorts.  

It is this kind of information that I would not have known had it not been for the communication I have with so many type 1 PWD who are willing to share their experiences with me. This is like gold to the parent of a child with diabetes. I am forever grateful to them. 

Another benefit I have gained by observing and getting to know these amazing adults living with type 1 diabetes and living well, is the comforting assurance that my daughter will be okay. Somehow, through it all, she will be okay with this unpredictable, naughty, impossible-to-tame “pet monkey” along for the ride.

And that is truly priceless.

Diabetes Blog Week!

The 2nd annual Diabetes Blog Week is set to commence in three days and since last year was such a blast, I’ve signed up again.  I’ve just been to Karen’s site and the list of participants is long and impressive!  I hope everyone has finished any books they’ve been reading because I have a feeling we’ll all be up to our eyeballs in diabetes bloggy goodness for the next couple of weeks.

If this is your first time hearing about this please visit Karen’s blog and check out the details.  You can just read the blog entries as they pour in next week or you can join in on the fun, if you like!

Well, I’ve got some writing to do so I’d better get to it.

Happy blogging all!

Wounds Reopened

I was awake Sunday night into the wee hours, but this time it wasn’t just because of a stubborn high blood sugar.  That was only part of the reason.  My mind was trying to sort through how I felt about the reactions I was hearing, reading and seeing from people in response to the news that Osama bin Laden was dead.  I was troubled by some of what I witnessed.  Here’s why:

What has been accomplished by the murder of bin Laden? Are we better off? Is the world a safer place? Has a wrong been righted? Is all the pain, sorrow, anger and hatred felt by those mourning lost loved ones suddenly gone?

I think not. In fact, I fear the opposite may be true. The world is arguably a more dangerous place now. Two wrongs still don’t make a right. And all the broken hearts remain broken. Sure, the hurting masses may have experienced some satisfaction - some sense of closure upon hearing the news that bin Laden has been denied the right to live any longer in this realm of existence. I am thankful that those who mourn lost loved ones have that small comfort, at least. But at the end of the day their loved ones are still gone. No amount of bloody retribution will change that. And there has been a grossly disproportionate and, indeed, immeasurable amount of blood spilled since Sept 11, 2001 in the names of those who died that day.

After 9/11 Americans, in their heart-wrenching grief,  had a chance to learn.  To grow.  To see themselves through the eyes of people in other parts of the world.  To gain some perspective and, perhaps a little humility.  And I believe over the course of the last ten years many did just that.

And then Sunday night’s news brought back all the anger, hurt and rage. The lust for raw, primal revenge was reawakened in many. Lessons learned were forgotten. Suddenly, a kinder, gentler nation became a pep squad for murder, cheering like sports fans at the demise of a man, albeit an evil man, who likely handed down his command to another equally diabolical man or men long, long ago.

I wept along with the world on 9/11. I watched in sickened awe at footage of people in faraway lands celebrating in the streets at the news that nearly 3000 human beings were murdered on that unforgettable September morning. I wondered how they could be so calloused, so full of hatred. What wrong had they perceived had been committed against them that they would rejoice in the face of so much death and suffering?

After witnessing an unsettlingly similar reaction to Sunday night’s news, I have my answer.

This isn’t over. Pandora’s box, along with old wounds, have been opened once more. Sadly, I fear that is exactly what the war machine wants.

The following is a link to a video of two grieving mothers. They have much to teach us of tolerance and forgiveness.  9/11 healing: The mothers who found forgiveness, friendship | Video on TED.com