Looking Ahead.

Another year is drawing to a close.  It is a time for reflecting.  But try as I might, I can’t stop looking to the future this New Year’s Eve.  Big changes are afoot and I am anxious to get on with it.  It’s hard to look back at the past when ahead lies such an exciting future (or when one’s every worldly possession is boxed in cardboard, taped up and awaiting a moving truck).

I mentioned in a previous post that there were diabetes-related reasons for this move.  One thing I have learned in life, thanks to diabetes (a little New Year’s optimism is never a bad thing), is that we all need people.  None of us can thrive on our own or get along without loving support and help from friends and family.  

Diabetes is a tricky one.  If you don’t reach out for help now and then and nurture a support network, burn-out and despair can ensue.

I’m burnt out.  And despair?  I’ve felt it.  

My husband and I have been sleep deprived and burning the candle at both ends for almost three years now.  Jenna was only just two when she was diagnosed - not too long after the midnight feeds and wee hour diaper changes were a thing of the past.  Given this scenario, you can imagine how many times we have had a night out, just the two of us. 

I have enjoyed living on Canada’s west coast these past fifteen years, and have truly fallen in love with the mountains, trees and ocean.  There isn’t a lot I can complain about living in this nature-lover’s paradise.  If you’ve only ever seen pictures, I can assure you, they don’t do it any justice at all.  This incredible land scape is a part of me now.  It always will be.  I have shed more than a few tears in recent days in anticipation of departing.  But as sad as I am to be leaving, I am even more excited to be moving closer to my sister and her family. I look forward to my children having their cousins close by to play with, bond with, grow up with.  And I am so very happy to be able to see my sister more than once every two years.  

As for Jenna’s diabetes management, my sister is eager to learn.  She wants to know the ins and outs of pumping insulin.  And I am ready to teach.  Jenna is at an age where she can verbalize how she is feeling.  She does her own checks often and is learning her numbers, as a result.  (Another “glass-half-full” mention about diabetes: I believe Jenna has added confidence concerning math and numbers from living the past three years immersed in calculations, ratios and solving for x).  Jenna is burgeoning on an age of being slightly more independent with her diabetes management.

I have seen the sun set on my nursing career - a consequence of choosing to be at home with my girls in light of Jenna’s diagnosis.  This isn’t necessarily a bad thing, as proud as I am of that accomplishment.  But I have other interests I wish to pursue.  Nursing was rewarding but it had it’s dark side.  It was an easy decision to make, really.  I couldn’t wrap my head around going to work as a nurse, caring for others, while a daycare worker cared for my two year old child with diabetes.  Quite frankly, it scared the shit out of me, the very thought of it.  Furthermore, who could be more qualified to care for Jenna but her mom who also happens be a registered nurse?  I know some people have no choice but to work and my heart goes out to you.  But, since we had that option open to us, we chose to take it.

Jenna is almost school-aged now.  She will be attending junior kindergarten in the new year (I’m likely going to need some advice on how to handle the whole school issue from all you experienced D-parents out there in the weeks ahead) and her big sister will be enrolled in grade two full time.  I will still need to be available for checks and boluses while she is in school, but in anticipation of the little bit of free time I might have, I’ve started to ponder some professional possibilities.  Nothing is certain, however, so I’m going to leave it at that.  But 2011 should be an exciting year, full of possibilities.   

And of course, a very big and important part of my support network is the diabetes online community.   The comfort I feel knowing help, advise or just an ear to vent is a few clicks away is immense.  I’m forever grateful for all of you.  Thank you.

A very Happy New Year to us all.  May 2011 be a year full of promise, tolerance, love, kindness and understanding ...and a monumental advancement or two in the search for a cure would be nice as well (nod to all you beautiful scientists out there).

...and now I’m going to ring in the New Year with some dear friends I likely won’t see again for some time.  Be well and safe, everyone.

Worries and What Ifs

I was watching The Sound Of Music yesterday.  It is a favourite of mine, having watched it almost every Christmas for as far back as I can remember.

Something occurred to me at the end of the movie when, after the concert, the Von Trapp family escaped from the Nazi’s who were waiting to take Captain Von Trapp to his new commission in the Navy of the Third Reich.  At this point in the movie the family is informed that the Austrian borders are closed and they decide at the last minute that they must travel on foot over the Alps to cross into Switzerland.

I felt compelled to ponder, what if type 1 diabetes were thrown into this scenario?

Suppose one of the Von Trapp children was a type 1 diabetic.  In those days, things pertaining to diabetes management would have been quite different.  I would venture to guess that it would have hindered, if not altogether dashed their plan of escaping a Nazi annexed Austria.  Captain Von Trapp may well have had to comply with the orders to accept his position in the Third Reich’s Navy.

In this day and age the idea of trekking over a mountain range, on foot, with seven children, one with type 1 diabetes, without weeks of careful planning and specific consideration paid to diabetes management would be a daunting task fraught with risks.  The lugging of supplies alone, not to mention how to keep the insulin chilled would be a sizeable undertaking.  Not that it would be impossible, just complicated, as so much with diabetes is.  It would be damn near impossible to make such a journey in the late 1930’s with a type 1 diabetic child in tow and have the child fare alright throughout the trip.

While doing a little poking around on line in preparation to write this post I learned that the real Von Trapp family story doesn’t include a foot journey over the Alps at all.  Apparently a more comfortable form of travel for the time - a trip by rail - was involved and they went to Italy, not Switzerland.  It wasn’t even an escape.  They left openly.  Nevertheless, human history is full of stories of survival that require people to flee homes and homelands at a moments notice and become refugees.

As the mother of a child with type 1 diabetes I am compelled to insert type 1 diabetes into these scenarios.  I can’t help myself.  Even though I live in friendly, peace-loving Canada, like any mother, I imagine countless scenarios that could endanger my children, no matter how remote the chance is of them materializing.  Besides, somewhere in this world that very scenario is likely playing out and has probably played out countless times in the past.  I don’t like thinking about the possible outcomes.  I hate imagining what the parents of these compromised children must face.

And it doesn’t have to be political upheaval.  Natural disasters occur without discriminating between nations.  I watched the documentary on the 2004 tsunami in Indonesia a few weeks ago.  The same thought process occurred as I watched in horror while people on vacation suddenly found themselves fighting for their lives.  There had to be type 1 diabetics there at the time.  If they survived the giant waves, how did they get the supplies they needed to manage their diabetes in the aftermath?  No doubt some diabetics found themselves without supplies or unable to get to them as unimaginable chaos unfolded around them.

It is this part of type 1 diabetes that preys on my mind most often - how vulnerable my child is and how reliant on pharmaceuticals she must be.   I don’t like thinking about it but how can I not?  We have to consider unthinkable scenarios with this disease.  We have to be prepared because, to not be prepared could easily spell disaster very quickly.

How do you prepare?  How much supplies do you keep on hand at any given time?  Have you got a plan?  What back up measures have you taken?

And finally, how do you keep from driving yourself insane with worry at times?  I am a rational person that doesn’t waste time worrying unnecessarily.  But given the seemingly increasing number of catastrophic events that have occurred in the world in recent years, and indeed over the course of our planet’s history, I would be naive to think we are untouchable here in North America (think Katrina).

And in all honesty, sometimes the worrying gets me down.

Diabetes Christmas Conundrums

How is it that I can measure, weigh and cook a meal from scratch and calculate with Pythagorean  precision the carbs in Jenna’s portion and still have her blood sugar go rogue;  yet we can go out to a fine dining establishment, eat a fancy meal, totally guess at carb counts, administer multiple boluses for food eaten in increments, and somehow have pristine, single digit blood sugar readings all night long thereafter?  I’m talking, unbelievable numbers.  Devine intervention numbers!  Holy crap she’s cured numbers!

We went out for Christmas dinner for the first time ever.  It was magical to tour the Butchart Gardens before hand then eat a four course Christmas feast with all the trimmings.  I don’t know how I can explain the spot on blood sugars Jenna had afterward.  Perhaps it was a perfect combination of activity - walking (running) through the gardens - along with fantastic carb counting guess work.  Whatever it was, it worked.  Somehow it just  worked.

And while we are on the topic of diabetes conundrums, here’s another puzzler:  Why does Jenna’s pump battery decide to end its three month long shift in the wee hours on a Christmas morn, after a rare night of excellent blood sugars led me to the false assumption that my midnight check would be the last time I would have to get up until morning?  I was hoping for a 7am wake up time, but the diabetes gods had other plans and were conspiring against me and my constant quest for more sleep.

Butchart Gardens at Christmas time is pure magic.

The girls were nestled all snug in their beds by 8pm, Christmas Eve.  They had no trouble falling asleep after stories were read to them.  Last year, Jazmine was up sometime between 1 and 2am, jacked up on Christmas hype.  I had to talk her down and settle her back to bed explaining that it was still time for sleeping. This year was no different, except for the time.  She was kind enough to wait until 3:30am before she entered our room excitedly announcing that Santa had visited.  For the second year in a row,  I got up to settle her back to bed then crawled back into my own still warm covers.

About 20 minutes later, I heard Jenna’s bedroom door slowly crrreeeaaak open.  Now she was awake and curious to see if Santa had visited as well.

“Go back to bed.  It’s too early,” I stated firmly from my warm cocoon.  The sound of little feet retreating back to bed followed by silence prompted me to breath a sigh of relief.

A while later, perhaps a half hour or more, I had just drifted blissfully into that surreal state of semi-lucid limbo, the one where you still have auditory awareness but your subconscious is spinning its strange little yarn of weirdness...

...BEEP...BEEP.

In an instant I was yanked back into full consciousness.

“What was that?”

“Mmmfph---wzz wut?” groaned a groggy J who, having just been awakened from his long winter’s nap,  hadn’t yet managed to regain full control over his verbal abilities.

“I heard a beeping sound,” I replied as I glanced at my phone’s clock, making note of the time.  It was 4:30am.

J mumbled something about not hearing a thing as I whipped back the covers - again - to investigate.  Of course, my first stop was Jenna’s room, since the sound I heard eerily resembled the sound her pump makes after a bolus of insulin is administered.

As I entered her room, she raised her head off her pillow to look at me and I wondered if she was still awake from when she had gotten up not long before.

“Hi honey...I heard a beeping sound,” I began whispering my explanation as I approached her bed.

“Maybe Santa is here!  Maybe it was Rudolph’s nose blinking!” Jenna whispered back excitedly.

I giggled and gave her a kiss for being so darned adorable.  “No sweetheart.  Santa has already come and gone.  I think what I heard was your pump.”

I began searching amid the bedsheets and pajamas for her pump which resides at her waist .  When I finally retrieved it and pressed a button, the low battery warning text appeared on the display.

Lalaloopsie dolls were a big hit!

So a battery change was done, albeit clumsily, and a prime/rewind sequence performed.  Afterward,  I returned to Jenna’s bedside to reconnect her pump.  I found her sitting up in bed, all wide-eyed and  smiles.  I tried to explain that it was still too early to get up but I knew my efforts were in vain.  She agreed to stay in bed but her little clock radio that is always serenading her at low volume while she sleeps was softly cranking out familiar Christmas tunes.  She remained in bed but she didn’t sleep.  Instead she sang.

We were all up - the coffee was brewing, the tree lit and the camera poised, ready to capture the magic of Christmas morning - all before 5am.

But those stellar blood sugars?  They more than made up for the lack of sleep.

Tidings of Comfort and Joy

When I was a little girl, the wonder of Christmas wasn’t just about getting presents from a big, hairy fella in a red suit with a penchant for chimney crawling.  Oh sure that was pretty exciting, but it was also knowing that people all over the world were gathering with joy and good will in their hearts and enjoying their families, eating good food, and celebrating the idea of loving one another and caring for each other.  There is something about being a part of an event that so many people are sharing that I have always found to be a very powerful experience.

I think we humans forget about just how connected we are to one another.   We are all in this whole experience together.  We spend far too much time criticizing our differences and not enough time finding our common ground.  And our common ground is vast - far greater than our differences.

You don’t have to be a Christian, or religious to appreciate what this time of year represents.  As Clark Griswold states at the end of National Lampoon’s Christmas Vacation, “It means something different to everyone.”

To me, it’s about being thankful for our health and our blessings and being together with those we love, paying tribute to those we have lost while celebrating our children and the promise they hold of a brighter, more compassionate and enlightened future.

Happy Holidays and Merry Christmas to each and every one of you.  May you feel loved and comforted this holiday season.

Finding The Calm Amid The Chaos

There are five days until Christmas and, given this year’s circumstances, I am impossibly calm, cool and collected.  I keep wondering what is wrong with me that I am so damn relaxed!  But I am.  It’s strange.

Here’s the situation:

We are moving.  And I don’t just mean moving across town.  This is a trans-continental move.  This is an EPIC move!  And it’s happening NOW.  Well, not right now, but in three short weeks we’ll be packing our every possession on a semi, then driving across this beautiful, albeit frozen country of ours and going back to my home town.  (We won’t be driving the semi - we’ll leave that to the professionals. We’ll be driving our Tundra pick-up - a very capable vehicle for what Mother Nature might have in store for us.)

The reasons for this move are varied, but it has a lot to do with the desire to be closer to my sister and her family.  It also has to do with the D.  But that is a separate post that I plan on writing very soon.

Right now, the issue is Christmas.  And packing.  And driving for days on end with two young children across a nation that is, at present, in the icy clutches of Old Man Winter.  And all the planning and preparation that these two ginormous events entail.

And...okay, YES.  There is the D to consider during all of this.  How can we not consider it?  It is never something that can be glossed over, even during the simplest of times.  I have prepared the lists of things to pack. I’ve ordered the Frio packs to keep cool the three vials of insulin I plan on packing, as insulin likes to be.  I’ve taken stock of our supplies and have on order all we will need to top up our reserves.  I’ve got the glucagon, which has recently become a more versatile and vital tool in the D toolbox as so many other D families have discovered. (For more info on glucagon mini-dosing, see this awesome post by Lorraine.)

We’ve been discussing the road trip and the need to go low carb with regards to snacking on the road.  We won’t be getting much in the way of exercise for several days straight (save for the odd pool time at any hotels we stay at that happen to have such facilities.)  This means that the temporary basal function will be called upon often to stave off any spikes.  But I want to further minimize the chance of fighting frequent highs which will only serve to make Jenna feel miserable and exhausted.  The drive alone will be enough of a physical and mental test as it is, without adding the insult of high blood sugar to it.  Doughnuts and muffins, while convenient and readily available, are really not the best choice (and, I dare say, that pertains to all of us.)  But I suspect we will all get tired of carrot and celery sticks pretty quickly.  So if anyone can recommend any low carb, low fat, low mess, car-friendly snacking ideas kindly leave me a comment.

So you can imagine what our household looks like these days.  Among the boxes and packing paper, we have a tree up, although it is a fake one.  Next year we will go back to a real tree.  But this year, we had to keep it simple and pull out the ol’ faker.  The stockings are hung by the chimney with...uh...well...lets just leave it at “they’re hung.”   The word “care” doesn’t apply when they are being taken down, tried on, played with, stuffed with toys from Christmases past and put back up in varying order, multiple times a day!  If they survive Jenna’s constant mauling due to her inability to leave all that jingles and sparkles alone, I will be astonished.

We even managed to sneak in a cookie baking session the other day, just prior to packing up my cookie sheets and mixing bowls.

Speaking of packing, J and I are on top of it.  We have been picking away at the task for weeks now and our garage is steadily filling with an ever growing mountain of packed boxes.

And in light of the packing chaos this year, we have made reservations to eat Christmas dinner out.  This will be a first for us.  I’m usually at home stuffing, then wrestling a turkey into a roaster and making those fancy cross slits in the bottom of each brussels sprout, the purpose of which continues to elude me.  On any given Christmas day I can be found ironing the fancy table cloth and its matching napkins just prior to placing them on the table which is always just prior to dinner being served.  Somehow, I always forget this detail until the very last minute.  But this year someone else is going to take care of these details. I whole-heartedly welcome this break from tradition, in light of all that is going on.  Next year I’m going to do Christmas up right.  The tree will be real.  The cookie baking will involve more than just one recipe.  And the Christmas dinner will be second to none.  But the best part about Christmas next year will be sharing it with my Mom, sister, brother-in-law, nieces and nephew for the first time in too many years.  It’s something I’ve been dreaming about for so long.

The next three weeks should prove to be unbelievably busy with a lot to consider, not the least of which is Jenna’s diabetes.  But through it all I have somehow become even more aware of how lucky we are and I am incredibly thankful.  This seemingly ill-timed move has had a strange, paradoxically calming effect on me.  I have a heightened awareness of what is really important.  We have amazing, supportive and loving family and friends, both here, on Canada’s west coast and back east in my home town.

And the four of us have each other (and our stash of diabetes supplies.)   I don’t need or want for anything more, for I know that wherever we (and the diabetes supplies) are, as long as we are together (with our big box of D-supplies and chilled insulin), that is where home is.

Special Sibs of D-Kids Day!

This post was going to be about my amazing seven year old daughter, Jazmine and how supportive she is of Jenna, her little sister with type 1 diabetes.  I was going to recount how she spotted the signs of hypoglycemia in Jenna and took it upon herself to check her blood sugar - not once but twice!  I was going to say how caring and sympathetic she is when Jenna is not feeling well.

But then during an exchange with a friend on Twitter I was reminded of an incredibly important aspect of being the sibling of a child with diabetes: they are just as much in need of support and understanding as their brothers and sisters with diabetes, particularly in the weeks and months following diagnosis.

Jazmine was only four when Jenna was diagnosed at the age of two.  That’s the same age as Jenna is now.  When Jenna came home after a four day stay in hospital Jazmine witnessed her sister having to endure finger sticks 6 to 8 times a day and insulin injections 3 to 4 times a day.   Not surprisingly, Jenna was fearful of each needle stick and would cry.  While I concentrated on helping Jenna endure these relentless physical trials, Jazmine was going through an emotional trial of her own.  It was frightening for her too.

Numerous times Jazmine would run into her room crying, unable to cope with her sister’s distress. I recall feeling so torn at times.  Jazmine would often have to go without my hugs and words of comfort for longer than I would have liked while I assisted Jenna.

On one occasion, when I was finally able to attend to Jazmine’s needs I explained to her that Jenna needed us to be brave to help her find her bravery.  I told Jazmine that she could help Jenna cope by offering her encouragement.  Jazmine needed to be involved.  She needed to be a part of it all in some capacity.  And really, Jenna needed her to be a part of it too.  I told Jazmine that she could be so helpful if she could find a way to cheer Jenna on.

And that’s just what my then four year old little girl did.  From that day on, Jazmine conquered her own fears and found her bravery to help her little sister find hers.  Jazmine found it in herself to stay by Jenna’s side when Jenna became fearful.  She offered comfort and reassurance and was always ready with praise when Jenna endured a frightening procedure.  Such a selfless act by a child so young is truly incredible.

My point is that it is too easy to overlook the needs of our non-diabetic children.  We get immersed in the daily management of diabetes, especially in the weeks after diagnosis.  We can forget that they too are scared and need support, education, involvement, encouragement, comfort...

It’s been said many times before but it’s worth repeating here: Diabetes affects the whole family, not just the pancreatically challenged.  Often the siblings are young children who need to be shown how they fit in to this whole diabetes business.  If we can include them, everyone benefits.

So in honour of Jazmine, we are going to do something we rarely do but always enjoy when we do it; we are going to the movies.  We are going to buy massive quantities of overpriced popcorn and watch the 3-D version of that new Disney animated movie - Tangled.

When I told Jazmine our plans for the day her eyes lit up and her jaw dropped!  She couldn’t wait to go tell her sister - her best friend.   I can’t think of a better way to celebrate and honour Jazmine than doing something fun together, as a family.

After all, that’s what it’s all about - Family.  And nothing is more important than that.

Celebrating Our Special Sibs of D-Kids

Once again my beautiful seven year old daughter recognized Jenna’s symptoms of a low blood sugar, took the initiative to perform the check, then upon confirming her suspicion quickly reported her findings to me.

Those who follow me here or on Facebook will recall a time earlier this year when this very scenario played out once before.  I was so proud that I quickly shared the story online.  Jazmine was proud too, and rightfully so.  She was a hero that day and repeated that heroic act again yesterday.

And this isn’t the only heroic act worth celebrating, although it may be the most obvious one.  There are countless other times that I’ve become aware of Jazmine’s quiet patience and understanding when Jenna has, out of necessity, been in the spotlight for a prolonged period of time, perhaps due to persistent blood sugar problems.  Or maybe she’s been taking the brunt of Jenna’s hyperglycemia-induced foul mood and has had to show maturity and understanding in dealing with that.  In fact, Jazmine is a hero everyday just by being a loving, protective, big sister to Jenna.

So I got to thinking - shouldn’t there be a day when we, as a diabetes community collective, recognize and celebrate their awesomeness in its many various forms?  We all know that, out of necessity, our children with diabetes often require more attention to manage this disease.  But our non-diabetic kids are often expected to go above and beyond and because they are such great kids, that’s just what they do.

So another awesome D-Mom, Alexis from Justice’s Misbehaving Pancreas, and I got talking and we both agreed that our non-D kids deserve a day of recognition.  It could be celebrated in as many ways as there are D-families to celebrate it.  Maybe you make a favourite meal or dessert.  Perhaps it can be one big family fun day!

Or it might be as simple as telling your non-D kid, either with the spoken or written word, just how incredible you think he or she is.  Because, really, can you ever say stuff like that too much?  I don’t think so either.

So the date we decided on is November 28th.  However you decide to mark the occasion, we’d like to hear about it.  Perhaps you can share your ideas here or on Alexis’ blog in the comment section of our posts.  Or if you have a blog, grab the button and blog about your Special Sib of a D-Kid!

Let’s show our non-D kiddos that we know how awesome they are and we love them for it!

A World Diabetes Day Toast

It’s still dark out.

The furnace is droning on, working to take off the night’s chill.  Oatmeal bubbles and snaps as it simmers on the stove.  My oldest daughter is lounging in her bathrobe on a chair in the living room watching cartoons.  Jenna is still in bed, sleeping soundly.

I’m here tapping away on the keys of my laptop, being tantalized by the smell of coffee brewing, thinking about the bolus I gave Jenna almost two hours ago to correct the high blood sugar she was knee-deep in at 5am.  I wonder if she is going to wake up for breakfast before her blood sugar drops too low.  But I’m confident her blood sugar will indeed come down, thanks to that precious liquid - insulin.

And on this World Diabetes Day, I’m filled with heart-warming, tear-summoning gratitude for it’s discovery.  Without the tireless efforts of Dr.’s Banting and Best my little girl wouldn’t be here today along with countless other children -  children who were given the gift of life and allowed to grow up instead of becoming another tragic, heart-breaking statistic.

So, on this day I would like to raise a glass (or at this hour, a mug) to the good doctors, Banting and Best, and to all the scientists working to find a cure for the disease that was a death sentence before their discovery of insulin.

Happy World Diabetes Day.  May we one day soon be celebrating a cure.

Six Things I Want To Get Off My Chest

Today is D-Blog Day so I’m going to share my 6 things I want people to know about diabetes.

1. Neither I nor my daughter did anything to cause her to develop type 1 diabetes.  It didn’t occur because she ate too much candy or was overweight.  It wasn’t  because I over-indulged during my pregnancy.  Type 1 diabetes is an autoimmune disorder caused by the immune system mistaking a person’s insulin producing beta cells in the pancreas for a foreign invader.  The immune system destroys the beta cells leaving a person without the ability to produce insulin.
2. Without working beta cells a person either needs to inject insulin several times a day or infuse insulin via an insulin pump.  Without insulin a person will die a slow and miserable death.  Before Banting and Best made their miraculous discovery that is precisely what happened to people.  Their misery is documented in pictures.  I’ve seen the pictures.  It is most horrifying and deeply disturbing.
3. People with diabetes constantly need to monitor their blood sugar and count carbs.  They must always be conscious of their activity and hormone levels and their overall physical condition to dose accordingly with insulin.
4. Humans are poor substitutes for working beta cells and are constantly at risk of either overdosing or under dosing on insulin.  The immediate consequences can range from feeling unwell to seizures, unconsciousness, coma or death.  The long term consequences are kidney, heart and peripheral vascular disease, neuropathy and loss of vision to name just a few.
5. My daughter Jenna is a remarkable little girl with a zest for life and a sense of humour beyond her years.  She deserves to live a long, full life filled with love and understanding.  I want Jenna to live in a world full of compassionate, educated people who won’t judge her out of ignorance.  In fact, I want that for both my girls regarding life in general.  Understanding and compassion come from being educated.  If you don’t understand something about diabetes or have questions I will gladly educate you.  Just ask.
6. I too am guilty of being uninformed in the past regarding diabetes, even though I have a medical background.  I cringe every time I recall conducting physical assessments on diabetic patients and asking them if they were “well controlled”.  I’m surprised no one told me to go fly a kite, quite honestly.  Control of diabetes is fleeting and can change from moment to moment.  It is a constant battle with far too many variables to be a walk in the park.  It never ends.  If there is one thing I would tell health care professionals it’s to not judge a diabetic.  Don’t think that because you are a medical doctor or a nurse that you know all there is to know about this disease.  Odds are you don’t. This disease is harder than it looks to manage.  And even when you seem to be doing everything right it can still mess with you on so many levels.  And for goodness sake, don’t ask a type 1 diabetic if they are “well controlled”.  It’s just about the most ridiculous thing you could ask.  

A Special Halloween Tradition

I admit, I was very anxious the first Halloween with D.  Even though Jenna was rocking her pump for almost two months prior, it was still pretty tense for me.

What if she goes animal on me and starts ripping into the candy like a sugar-crazed...well...KID! 

The thing is, it didn’t happen like that at all.  Jenna was just like most kids and thoroughly enjoyed the actual act of trick-or-treating.  She wasn’t focused on the candy in the least.  At least, not until we wrapped up the trick-or-treating part of the program.  And after a quick, post-haunting check revealed a low blood sugar, she enjoyed several pieces of candy as we made our way back home.  Besides, I find candy in small amounts is pretty easy to deal with.  It’s the burgers, pizza, pasta and french fries that give us the most grief with regards to glycemic control.

But candy is still candy and although I firmly believe kids need to be allowed to pig out on junk now and then, I like to limit the amount consumed.  Halloween and Easter candy is usually around for months after the fact because it is metered out as after-meal treats.  So reducing the overall amount consumed is a good thing.

For several years now, even before the big D came a knockin’, I have employed a little help from Charlie Brown and used the Great Pumpkin concept to help minimize the amount of junk my kids consume.  Here’s how it works in our house:

Once home from trick-or-treating we pour out the candy bags and my girls have fun sorting and examining the night’s pull.  This is when my husband and I take the opportunity to check all the treats for safety purposes and to perform a little quality control, of course!

After the scoping...uh, I mean....sorting of the treats, we ask our girls to make some decisions as to which goodies they want to swap for non-candy treats from the Great Pumpkin.  The more candy they are willing to part with, the greater the trade!  Often it ends up being close to half the night’s haul.  They then place these treats into a special bowl for placement by the front door of our house.  The Great Pumpkin visits sometime in the night and makes the swap.  The next morning my girls race to find a few fun items for each of them such as a new video, a toy and a book in place of the candy!  Another great item to include, as a friend of mine suggested, is a new toothbrush!  I think that’s an awesome idea and I’m going to...uh, I mean... the Great Pumpkin is going to include one as part of the trade for each of my girls this year.

The Great Pumpkin usually leaves a letter of thanks for the great trade and bids them farewell until next year when he hopes they can do business again.  My girls enjoy this tradition very much and are only too happy to divvy up their goodies.

The only question I haven’t been able to answer is what the Great Pumpkin does with all that candy.

Before Another Child Is Lost

The unthinkable has happened.  Again.

The unfathomable has happened and we are all left reeling from the reality of what we face.  Every.  Single.  Day.

The unbelievable has happened and a family I’ve never met but have so much in common with occupies my thoughts and my heart.

The unspeakable has happened and I, along with countless others in the diabetes community weep tears of grief, pain and anger.

The unimaginable has happened and mothers and fathers of type 1 diabetic children are left to hug our children tightly as we are snapped back into the sombre and sobering realization that there, but for the grace of God, go any one of us.

We all say, I can’t imagine what they, the parents, are going through.  But the truth is, it is only too easy to imagine the heart-wrenching, oppressive pain and grief they must be feeling.  We were faced with the reality of what could happen when we learned about the intricacies of managing our children’s type 1 diabetes.  Insulin is a double-edged sword.  It gives life but it can just as easily take it away.  And we don’t have the luxury of being able to say,  it could never happen to us.  We know only too well how life has a way of dealing out the unexpected.  We have been burned before.

You see, there was a time when most parents of children with type 1 diabetes didn’t believe a serious, life-threatening illness could strike our children without warning.  Not our child.

And then one day it happened.

We are too wise to hide our heads under that cover of naiveté.

And so, when we hear of a family who is suffering the worst loss imaginable, we all know it could happen to any one of us.  It is what bonds us — perfect strangers — in a very real and profound way.
We understand one another and what we go through every day.  The reality of what we all face.

What we need to do is find a way of sharing this reality.  We need to figure out how to impress upon the public the urgent need for a cure.  Because our children don’t look sick.  They look just like every other child.  Most days people wouldn’t even know that our children are usually feeling the exhausting effects of erratic blood sugars.  People would never guess that they are constantly at risk of overdosing on insulin.  People don’t think about the long term complications our children face because of type 1 diabetes such as heart disease, hypertension, peripheral vascular disease, vision loss, limb amputation, neuropathy and the list goes on.

And people aren’t aware of just what is entailed in managing type 1 diabetes and the constant monitoring required,  from minute to minute, hour to hour, day and night, to keep our precious children safe.  To keep our babies alive.

Blog.  Talk.  Write.  Answer questions.  Encourage discussions.  Be out there.  Test in public.  Don’t hide the minutia of diabetes management.  Encourage your children to answer questions from their friends.   Suggest speech topics that involve diabetes.

Raise money.  Raise awareness.

Walk.

Don’t be quiet about this disease...

...be loud!

We need a cure.

Before another child is lost.

How Does It Feel?

I can socialize in type 1 circles and, for the most part, fit right in.  I know the jargon; I understand the disease; I have first hand knowledge of what it takes to manage it day and night.

But the one thing I don’t know is how it feels to be off-the-charts high or crazy-ass low.  I can imagine all I want but at the end of the day, I have a working pancreas that keeps my blood sugars in pretty tight check.  So, I can’t relate to the crippling, confusing and emotionally devastating effects of a 2.1 blood sugar or the exhausting physical stress of a blood sugar of 24 with ketones.

I have some feeble points of reference to draw from.  Like most people, I have gone too long between meals or overindulged and suffered the repercussions.  Like the time I binged on a bag of Jelly Belly jelly beans I had rationalized buying for treating Jenna’s lows (in spite of the fact that at any given time I have a fully stocked arsenal of carb tabs available for just such instances.)  I ate so many jelly beans that I felt decidedly ill afterward and thought it might be interesting to check my blood sugar.  I believe I clocked in at 8 point something.  Definitely elevated but a far cry from the teens that Jenna experiences several time a week.  And by no means could it even come close to the feeling of a twenty-something reading, which isn’t nearly uncommon enough.

If I knew how Jenna felt in states of hyper and hypoglycemia I might be better armed to identify the signs sooner in some instances.  It wouldn’t be that much of an issue if my diabetic child was older by, say 5 years or more.  Then she might have a little more insight into her physical status.  She would be more skilled at verbalizing how she is feeling.  Her ability to identify physical symptoms as a manifestation of crappy blood sugar control would be better honed.  But as it stands, I am at the mercy of non-verbal, behavioural signs to tip me off to an out-of-range blood sugar.

I wish I could say that I’ve never misread the signs as being merely typical four year old antics—that I’m always cognizant of the possibility that her impish behaviour could be a direct result of a plummeting or sky-rocketing blood sugar and that, at the onset of less than angelic behaviour, I nip off to retrieve the meter and perform a check.

I really wish I could say that.

I can’t.

Usually I can connect the dots fairly quickly and surmise that Jenna’s reluctance to get dressed and brush her teeth while she sprawls, uncooperatively on the floor could be a low.

More often than not I can identify an angry, out-of-the-blue outburst ending in a box of crayons being thrown at an impressive velocity across the room to be a high blood sugar careening out of control.

But there are days when I get caught up in the energy and frustration, when the symptoms aren’t quite so glaring, and I miss it, doling out a consequence, such as time on the thinking chair, without a second thought.  Only after my own frustration has abated, allowing the significance of Jenna’s pale complexion  to sink in, do I make the connection and race for her meter.  And I don’t need to tell you how I feel when the number staring back at me confirms that Jenna’s behaviour had far more to do with physical discomfort secondary to glycemic chaos than typical preschooler antics.

I try to make it a policy to check Jenna whenever I’m in doubt.  Because those rare occasions when I’ve missed it are still too many for my liking.

But I’m learning not to blame myself for these lapses in spot-on D management.  It’s not like diabetes has a hidden code that, once cracked, will forever-more make D a cake walk.  This is one puzzle that refuses to be pieced together.  Just when you think you’ve figured it out, the rules change.

As Leighann of D-Mom Blog once told me in a comment to another blog post I wrote, think of all the times we get it right.  And truthfully, the fact that all those times we get it right far outweigh the times we don’t is pretty remarkable, given the unpredictable nature of diabetes.

This disease is such an SOB.  I have beaten it to a messy pulp a million times in my mind, mostly for the suffering it has caused my child.  But also for the heartache my husband and I have endured and will continue endure until our last breath.  As incredible and joyful as parenthood is, it can be just as difficult at times.  Throw type 1 diabetes in the mix and the stress and worry are compounded.

Kerri posed the question on her blog post yesterday, If you could change one thing about having diabetes, what would it be? 


Easy.  Without question.  I would change places with my daughter and take on this disease myself.

D-Feast Friday!

Here’s a recipe that has been in my sights to make for some time.  Now that Fall has arrived I can’t think of a better time to fire up my oven and roast up some squash, apples and garlic to make this fragrant and flavourful soup.  So this is what’s on the menu this weekend at our house!  Care to be adventurous and try it with me?

Roasted Squash & Apple Soup


3 lbs squash
2 medium apples, halved and cored
1 head garlic
4 cups chicken stock
Salt and pepper to taste
Pinch of nutmeg
Sprigs of fresh thyme for garnish

Cut squash in half, scoop out seeds and place cut side down on a parchment lined baking sheet.

Cut garlic head in half and place cut side down with squash on baking sheet.

Place apples cut side down on baking sheet as well.

Bake at 350º for 35-40 minutes.

Scoop squash and apples from skins and place in saucepan.  Squeeze roasted garlic halves from their skins into saucepan as well.  Add 3 cups of the chicken stock and with an immersion blender, blend until smooth.  Add more stock to achieve desired consistency.  Heat then add salt and pepper to taste.  Add nutmeg.

Garnish each serving with a sprig of thyme, if you are so inclined.

Serves 6

Random Thoughts

“Dude.  Can I borrow your lid?"

• I’m sitting with my girls as I type this.  We are colouring and cutting out dinosaurs, giraffes, and other assorted characters.  Each character is getting a popsicle stick taped to the back as well as a fashionable, custom made paper handbag (Jenna’s idea).  I’m guessing that a puppet show of sorts is in the works.  It’s times like this during parenthood that I anticipated with excitement long before I became a parent.      
• Today the ice cream truck came cruising up our street.  Today— a day when Jenna has been spiking to high heaven and making ketones like a professional....ketone.......maker.  We don’t see an ice cream truck all blasted summer, then fall arrives— Jenna has the worst diabetes day she’s had in months and the ice cream truck appears.  Irony anyone?
• On any given night I can be found, once or twice, between the hours of 10pm and 4am clutching a small, green flashlight between my teeth while I perform a blood glucose check on a sleeping Jenna.  It occurred to me that a miner’s hat would be a more appropriate illuminating device for this task.  Hands-free, you know?  I can’t help but laugh at the thought of strapping on a miner’s hat over my crazy bed-head, fresh out of dreamland.  Still, it would really make things easier.
• I enjoy Autumn.  I’ve mentioned this before, I know.  But it’s worth repeating since today has been a delightfully cool and windy Autumn day, in spite of the blood sugar gremlins.  Colourful fallen leaves were dancing playfully in the streets and the sweet smell of bonfires laced the air.  J and I dropped our girls off at their morning art class then enjoyed a latte while we chatted and perused the aisles of books at our local Chapter’s.   It was an hour of calming bliss.
• My dishwasher is making very strange sounds and I fear an expensive breakdown is imminent.   

Okay.  So that’s all the random thoughts I’m having at the moment.  I’m sure there are more but I’m being sent to the photocopier for the umpteenth time to make more paper characters.  Enjoy the rest of your weekend and maybe think in-range blood sugar thoughts for us, k?  Thanks.  

I Want A Cure.

Jenna’s bedtime reading was 2.2 tonight.  She had none of the typical symptoms.  It breaks her previous all time low of 2.3.

We gave her two carb tabs and I read to her a chapter from the book we’ve been reading before tucking her in and kissing her goodnight.  She was exhausted from a full week of school, swim lessons, gymnastics and play.  So exhausted, in fact, that when I checked her again 20 minutes later to ensure she was recovering and discovered she was still only 3.6, I could barely get her to eat another carb tablet, let alone the two that I would have preferred to put my mind at ease.  She wouldn’t even drink the usual few sips of water we always offer to help wash the sugar off her teeth after treatment!

I thought we had the whole pizza deal figured out.  I had attended Gary Scheiner’s talks at the CWD-FFL conference and had taken meticulous notes.  I reread the section in his book about how to deal with foods notorious for posing blood sugar problems.  Then not long after the conference I applied all of the recommended techniques after a pizza feast and experienced a night of blood sugars that would have made Mr. Scheiner proud.  No spikes.  No lows.  In fact, Jenna stayed within two points of her goal all night!

Perhaps we got a little cocky—dialing up temporary basals and combo-boluses tonight with a little too much reckless abandon.

Or maybe the difference was the pizza itself.  I noticed tonight’s pizza glistened with a greasy glaze.  Maybe the fat content was markedly higher than the one we had had such success with before.

Or perhaps the increased activity I mentioned previously is a factor.  It’s very likely that she has increased insulin sensitivity because of the extra physical demands on her body.  This isn’t necessarily a bad thing, unless, of course, she experiences jaw-dropping lows because of it.

It just goes to prove that there are far too many variables to be able to pin down one formula to apply to every situation.  Diabetes is always a guessing game.

I know how this is going to play out.  The 2.2 she had will likely result in a rebound high.  And because she had two low readings within the span of half an hour, in spite of treatment, I suspended her combination bolus and temporary basal rate.  This means that the delayed high she will undoubtedly experience from the fatty, carby pizza will remain unchallenged unless I ramp up her basals again at some point, or make sure to check her every two hours all night and correct, correct, correct.

After we treated the initial low tonight and settled Jenna to bed, I was tucking my oldest daughter in.  She asked me what would happen if Jenna’s blood sugar went to zero.  All I said was that it would be very bad and that that’s why we check her all the time, day and night.  

But my tone and facial expression must have said more because the look on her face told me she knew what it was that I wasn’t saying.

We left the unspeakable unspoken and hugged for an extra long time before we said our goodnights.

I want a cure.

For every parent who has ever been afraid to let their diabetic child go to sleep at night and for every person with diabetes who has ever been afraid to close their eyes....

...I want a cure.

Cool Give-Away!

So this is pretty awesome!

Heidi over at D-Tales is hosting a give-away!  Cool medical ID bracelets that you just have to check out!

I’m not usually one to enter contests.  But since Jenna has developed a sensitivity to nickel and can no longer wear her stainless medical alert bracelet as a result, and since I purchased a really pretty beaded one for her that arrived one size too big and now sits in our diabetes drawer until she does some serious growing....*deep breath*....I’m totally entering this awesome contest.

You should too!  Head on over there now!  Tell her Sherry sent ya! ;-)

D-Feast Friday: Blueberry Banana Smoothie

This is a delicious and nutritious drink that makes frequent appearances at our breakfast table.  Truth be told it is also an occasional after supper dessert.  It is just so darn delicious that my girls ask for it often and I am thankful for that.  There are far worse things they could crave.  Jenna, being a lover of anything ‘berry’ is always game for this little bit of heaven in a tumbler.

Blueberry, Banana Smoothie

1 cup skim milk
1/2 cup plain or vanilla yogurt, nonfat
1/2 cup orange juice
1 cup fresh or frozen blueberries (I prefer frozen to give it that frosty texture
1 banana, medium, ripe
(I’ve been known to sneak in a couple table spoons of wheat germ now and then for an extra punch of nutrition.)

Blend all ingredients in blender until smooth and creamy.  Serve immediately.


*For a variation, try frozen mango pieces or strawberries!

Makes 4 servings with 23 carbs per serving.

A Diabetes Family Utopia

Imagine a place where the food is delicious, healthy, plentiful and you don’t have to prepare it.  Each dish has a card with the serving size and carb count itemized beside it.  Glistening silver punch bowls overflow with tubes of carb tabs, Skittles and Starburst candies to treat lows.  In this place everybody knows your name and you theirs (gotta love name tags) and speaks the same diabetes lingo you do.  When you discuss carbohydrate counts and the fat content of the foods your child is eating, no one looks at you judgmentally like you are grooming your child for a future eating disorder.    

Imagine a place where everyone understands, I mean, really understands what it’s like to live with diabetes every single day and night because they live with it too.  A place where there are energetic teens with type 1 diabetes who happily and competently care for your D and non-D children while you immerse yourself in learning more about the many facets of diabetes management.  In this magical place no dishes need doing, no tables need setting and no meals or snacks need preparing (well, not by you anyway).  The coffee and tea is freshly brewed and on tap all day long to help you stay awake and alert in spite of your chronic state of sleep deprivation.  

It is a D-family’s Utopia.  And it exists.  I know.  I’ve seen it with my own eyes!  Trouble is it only lasts one weekend then it’s gone, like a glorious fleeting dream that you are awakened from all too soon.

The girls pose with Medtronic’s Lenny the Lion

The Children With Diabetes - Friends for Life Conference came to Canada for the first time two weekends ago and welcomed over 500 more people into their family.  We were lucky enough to be among those people. 

Conference attendees take part in two and a half days of mingling with other D-families and attending lectures by people who have made diabetes and it’s management their life’s work, often because it has touched them on a very personal level.  People like Gary Scheiner, a certified diabetes educator and exercise physiologist.  He also has type 1 diabetes, diagnosed 24 years ago, and likes to open his talks by sharing the irony that his diagnosis took place in Sugarland, Texas.  No lie. 

I was pretty pumped (pun intended) about hearing Gary Scheiner speak.  He wrote the book "Think Like A Pancreas" which is a must read for anyone managing type 1 diabetes either with MDI’s or with an insulin pump.  I refer to him as “The Pump Whisperer” because he has many tricks up his sleeve to help people get the most out of their insulin pump.  I attended every talk Mr. Scheiner gave that weekend, feverishly taking notes like some super-keener, nerdy college student determined to pull off straight A’s or die trying. I hope he doesn’t think I was stalking him... 

George Canyon performs at CWD - FFL Canada

Meeting George Canyon was pretty awesome too.  I’m not the biggest  country music fan but he won me over when he opened with Johnny Cash’s “Ring of Fire” at the Saturday night banquet.   He also has an amazing presence and charm that is impossible to resist.  Earlier in the day George could be found outside the large conference room taking pictures of individual children with type 1 diabetes, with their parents consent of course.  He intends to display the photos as a slide show presentation while he performs at the CCMA on Sunday, September 12.  George himself was actually taking the pictures.  So if you plan on watching that awards show you just might see Jenna’s face appear on the screen behind George along with the faces of many other type 1 diabetic children.

  

But the absolute best part of the weekend was being surrounded by people who understand because they live it like we do. The dessert served at the Saturday evening banquet was cake with a thick, buttery, chocolate icing.  I suspected when she ate it that Jenna’s blood sugar would go rogue hours later while she slept.  Sure enough, she spiked pretty high between midnight and 3am.  When we were getting up every 2 hours to hack down her ever-rising blood sugar I wondered how many others in attendance were waging the same wee hour war on a post-cake high like we were.  It was oddly comforting knowing we were likely one of many.

Dancing in front of the Olympic Cauldron in Vancouver 

Looking around and seeing a pump on every other person’s waist, seeing people pull out their meters to check before meals, watching parents as they loaded up their child’s plate and took careful note of the carbs in each item, it made me feel like we weren’t alone after all.  But at the same time it moved me to tears knowing just how many lives are affected by this disease — a disease without a cure that is on the rise and no one really knows why.

Throughout the weekend, on occasion, I found myself sitting quietly, emotions surging, scanning the conference room, conscious of the fact that I was surrounded by so many incredibly brave people — children and adults with type 1 diabetes as well as the families that care for / about them.  I was humbled and honored to be there making their acquaintance, offering and receiving support.  

And I want to go again, a whole lot.   

A Moment Worth Sharing.

I just sat down after cleaning up from the lunch chaos to check email and see who’s tweeting what.  My girls are downstairs playing with toy cars and dinosaurs — they call it “Dinosaurs and Cars”.  Go figure.

As I sit with my freshly steeped cuppa tea, logging in, perusing and all the while listening with one ear to my girls play, I catch this exchange:

Jazmine:  (Gasps) “Oh!  Is your site okay?

Jenna:  “Ya, it’s okay.”

Jazmine:  “Oh, phew.  Okay.  Where were we?”

...and they continue playing without missing a beat.

I can only imagine, since I wasn’t able to actually see what happened, that Jenna’s site perhaps got caught on something, or someone, as they played.  But what struck me was how diabetes is just another part of their “everyday”.  And what really touched me was Jazmine’s genuine concern for her sister.

How did I get so lucky to have two crazy-cool kids?

Diabetes Art Day!

Today is a day that many of us in the Diabetes Online Community have been anticipating for several weeks.  It is Diabetes Art Day.  I wrote about it here and many have been tweeting about it since it was announced by Lee Ann on her blog, The Butter Compartment.

I’m pretty excited about this.  Not just because I get to post art work by my two amazing kids, but because I adore art of all kinds.  I’m not one of those people who looks at a piece of art that challenges our preconceived notions about what qualifies as art and says “Well, anyone can do that!” Art is limitless in the many forms it can take.  And not all art has to be aesthetically pleasing!  Art is a form of expression and not all things worth expressing are happy, beautiful, comforting, pleasing to the eye, perfectly proportioned or warm and fuzzy.  Whether it’s of an uplifting nature or a means to express rage, frustration, sadness or loneliness, it is the message that is important (unless, of course, all you care about is filling that wall space above the couch with something that coordinates with your decor) and I have a feeling we all have a message of one kind or another to share with regards to diabetes — call me crazy...

A few weeks ago when this idea was in it’s infancy I began setting aside all the diabetes trash that is generated from the day to day management of Jenna’s diabetes — cartridges, spent insulin vials, used tubing and insertion devices, etc.  I told J when he asked about the growing pile of stuff that I was planning a diabetes art project with the girls.  I wasn’t sure yet what I was going to do with all of it but I wanted to save it nevertheless in hopes that some kick-ass inspiration would pop into my head.

Jazmine, my oldest daughter, overheard this discussion.

“I have an idea!” she exclaimed with confidence and excitement.

“Lay it on me” I replied, intrigued by her enthusiasm.

“What if we used the site change thingy to stamp paint on paper?  We could dip it in the paint, pull back the doo-hicky, place it on the paper and press it to make it click!”

How clever is that?! I was speechless.

Sometimes the artistic process is just as significant as the finished work of art.  As the parent of a diabetic child who found infusion site changes quite stressful, I believe this fun technique could be utilized to help children fearful of site changes.  The incentive to have another used insertion device with which to create art could assist a child in finding his or her bravery during routine site changes.  The message? To every cloud there is a silver lining, if one chooses to see it. 

To finish their pieces they channeled Jackson Pollock himself and splattered silver glitter paint as a top layer.  Jenna took it one step further and grabbed some seed pods from some spent flowers in the garden as well as a dried cherry tree leaf and added them as a finishing touch.  What can I say — she’s very avant-garde.

Here are the finished pieces after they were allowed to dry.

My own contribution to Diabetes Art Day, titled “Parenting On The Glycemic Tightrope”, can be found below or on the side bar of this blog.  It’s message is only too obvious to anyone with type 1 diabetes and to D-parents in particular.