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

I Hate That I Feel Like I Must Apologize For This Post.

I’m tired...

• I hate waking up to a quiet house and wondering.  Fearing.
• I hate that I feel relief when I hear her stir in her bed and begin singing.  I’d far rather just delight in the adorableness of the moment, like other moms can.
• I hate being compelled to wake her just to make sure she will indeed wake up.
• I hate holding my breath as the meter counts down the three seconds to see the results.
• I hate the feeling in my chest when the number that appears is stupid-high or scary-low.
• I hate the guilt.
• I hate being driven, like a woman possessed, by the thought that my tireless diligence in managing her diabetes now could very well buy her years later.  
• I hate that people don’t really understand this.
• I hate that I feel like I am complaining when I do decide to vent.
• I hate that some people, because of ignorance, will read this and deem me a complainer.
• I hate that the worry lines above my nose are so deep now that even when my face is expressionless they are clearly visible.
• I hate how vain that makes me sound.
• I hate how horrible a high blood sugar can make her feel and the behaviour that can ensue.
• I hate that sometimes I miss it and get frustrated with her behaviour when I could have been more understanding.
• I hate trying to distinguish regular 5 year old behaviour from hyper or hypoglycemia-induced behaviour.
• I hate how long it takes insulin to work to bring down a high.
• I hate how alone I feel sometimes.
• I hate even more how alone she will no doubt feel sometimes.
• I hate that her first school experience was by far more stressful than enjoyable for me.
• I hate piercing my child’s fingers with needles 8 to 10 times a day and squeezing blood from those sweet fingers.
• I hate feeling misunderstood and judged.
• I hate that she may one day feel misunderstood and judged.
• I hate the idea of her going forth into a world that has such harsh preconceptions and misunderstandings of her disease.
• I hate the sudden, profound, sobering sadness I feel when she says in a moment of pure frustration how she wishes she didn’t have diabetes.
• I hate how it makes her feel so angry, uncomfortable and full of rage sometimes that she tells me she hates me.
• I hate knowing how bad she feels when the moment of rage passes and the guilt sets in.
• I hate the politics of health care.
• I hate fearing for her future.
• I hate this post.
• I hate diabetes.

I’m so tired.

Whatever It Takes

Today we walked some trails around our rurally set home and since it is spring, the odds of seeing some form of wildlife are quite high these days.  So it wasn’t too surprising when Jenna spotted a marmot about twenty minutes into our walk.  And not just any old marmot - a mommy-marmot!  She was so darn adorable that I stood there for a good two or three minutes snapping pictures of her and quietly talking to her while she posed for me.  Although, truth be told, I’m pretty sure she wasn’t posing, but rather attempting to keep our attention so that we wouldn’t discover her nest of what is sure to contain a brood of maybe a half dozen little newborn marmot pups.

She boldly stood at attention - eyes wide - on high alert.

I know it sounds funny, but as a mom, I felt reverence for this mommy-marmot that I’m sure I wouldn’t have felt as profoundly had I not been a mother myself.  I respected the fact that she was selflessly standing in possible harms way - doing whatever it took to protect her babies - playing to her audience to keep us distracted and guard her precious young.  

I took my pictures from a distance, ever mindful of the stress she was likely feeling.  I could have stayed longer and just kept taking pictures of this adorable creature, but I knew she was probably anxious to get back to her babes.  I didn’t want to delay that reunion for the sake of a few pictures.  I said my quiet goodbyes, thanking her for the photo-op, and moved on.

We walked, took pictures and enjoyed the sunshine.  The girls ran, played and skipped with colourful ropes they got for Easter.  Lots of activity was had by all.  

Fast forward to the end of the day.  Supper was capped off with a piece of chocolate cream pie - a somewhat fatty, carb laden favourite of mine, reserved for rare occasions.  I find it is sometimes hard to know what approach to take with regards to bolusing for certain foods.  I’ve employed the combo bolus in the past only to have a screaming high blood sugar tell me I should have gone the straight up route.  Conversely, I have utilized the straight bolus and had a low make it apparent that a combo would have been the better avenue to take.  Tonight I opted for the straight bolus.

And that was a mistake.

Within an hour of dessert and it’s subsequent bolus, it was time for tired little girls to go to bed.  Teeth were brushed, stories read, covers tucked.  A blood sugar check was performed as per the usual bedtime routine.

2.3.

And my heart suddenly took up new residence in my throat as adrenaline was pumped into my blood stream.  

The fight or flight response.  

The enemy?  Hypoglycemia.

I proceeded as though I was going to give her a correction bolus with the sole intent to see what insulin she had left on board.  Still at play was 1.8 units.  For Jenna, that is a considerable amount of insulin.  I knew it was possible this low wouldn’t go quietly.  

I shouted down to J who was watching playoff hockey, “2.3 with close to 2 units on board!”

“Shit!” and with that the game was paused and J quickly joined me at Jenna’s bedside with carb tabs in hand.     

Two carb tablets were savoured by an asymptomatic Jenna who was denying feeling anything but sleepy.  I then suspended the basal delivery on her pump.  We tucked her in and I told her I’d be back to check her in 15 minutes.  I went to Jazmine’s room to tuck her in and give hugs and kisses before joining J downstairs in the living room.  

Five minutes went by and the sound of little feet hitting the floor was heard.  Jenna soon appeared at the top of the stairs.

“Are you okay?”  

“I feel all floopy-floppy” she responded in a weak voice.  She was on her way down the stairs and joined me on the couch with an obvious need for hugs. 

I could tell by her behaviour that this had all the makings of a potentially bad low.  Although, how I knew this was not because of much past experience with stubborn lows; Jenna almost always comes up from lows after one treatment.  She seldom requires more.  

I knew because her behaviour with this low was different - unprecedented for Jenna, but in a very subtle way. 

Jenna decided she wanted to go back to bed.  So I settled her in the covers once more only this time I offered to stay with her.  She agreed.  

The next few minutes were marked by moderate restlessness and complaints of being hot and hungry.  So hungry!

Another check was done 15 minutes after the first and she was now 2.1.  I felt panic encroaching on my calm, rational demeanour.  That’s the wrong way!  She should be going up, not down!

Another two carb tabs were devoured.  At this point I decided that I would far rather battle a high in the mid teens until the wee hours than have to pull out the glucagon kit and start mini-dosing.  If I had to I would without hesitation.  But I decided that if the poor kid was hungry, she should eat. 

Down stairs we all paraded where pretzels and juice were divvied up between the three of us (Jazmine wanted in on this normally forbidden, past bedtime snack-fest too, of course).  We sat there chatting and  munching on our snacks.

By the time the last pretzel was crunched and the last swig of juice was chugged, Jenna was back to her old self once more.  All subtle signs of the low had dissolved freeing my beautiful, delightful, spirited little girl.    

Back to bed for a third time where hugs and kisses were exchanged yet again.  A final check revealed 6.8 and my heart eased back into its rightful home in my chest.  I breathed a sigh of relief as I resumed her basal delivery, knowing full well that in another hour her blood sugar would almost certainly be in the mid to high teens.  But at this point I was okay with that. 

Indeed, the next check was an hour later and rang in at 16.  A small correction was given and our alarm set for rechecking in another two hours.

And now, two hours later she is 18.1 and moaning in her sleep - something she does whenever she is running high at night.  Another considerable correction of one unit dosed ... another alarm set ...

... and so it goes.  

Whatever it takes to keep our childen safe. 

Today’s Gift

Our life with diabetes has evolved over the past three years.  Our focuses, fears and concerns have morphed and matured.   We no longer stress and stew over precision carb counting and the ever elusive “control” we covet but can never achieve and maintain.  I never put dessert on hold to translate an Italian nutritional information label in an effort to obtain accurate serving size and carbohydrate content information anymore.  I just wing it.  It’s one of the perks of three years of carb counting.  We’ve gotten good at guesstimating.  I never consult any of my three copies of The Calorie King anymore.  Oh happy day!

Bolusing for every meal, snack and unplanned treat is second nature now.  Oh sure, it is still inconvenient at times, and other times its downright maddening.  But performing the routine, pre-carb consumption blood sugar check, calculating the carbs, followed by a quick assessment of the situation to factor in any fat content, physical activity, insulin resistance ... blah-blah-blah, then an expeditious pressing of a couple buttons is something we can practically do in our sleep now (and sometimes, I dare say, we do just that!)

We no longer freak out over rogue, wee hour blood sugar readings.  We usually know, or at least can wager a reasonably safe bet on the why.  We check, mutter an expletive or two (thanking our lucky stars that Jenna is a sound sleeper), bolus to correct, set an alarm for two hours and get on with life.  We don’t hold nightly meetings anymore to discuss what we may have done wrong at the supper bolus then discuss our approach for the next time we have whatever the offending meal was.  We don’t pick apart the whole combo-bolus, how-much-up-front-and-how-much-over-how-long conundrum.  It’s become fluent for us now - like studying a language in it’s country of origin for years - one gets used to the colloquialisms and subtle nuances of the language.  Not that we get it right all the time; we have just resigned ourselves to the fact that always getting it right is a ridiculous goal to hold ourselves to.  Getting it close now and then is more realistic.  Expecting the unexpected and not having a clue why things sometimes go wrong is a way of life with diabetes.  That’s just how D roles.  It can be a real jerk that way.  No sense beating ourselves up about it.   


But with these issues fading into the background din of our life with diabetes, other new issues are slowly, quietly emerging.  


Jenna was only just two at her diagnosis.  She was always with me.  I never had to worry about her going low or high away from my watchful eye.  I was on it.  Checker at the ready, like a gun-slinger with an itchy trigger finger, I was always poised to perform the ubiquitous check with lightening speed.   


But she is five now.  Not only has she had her first school experience, making it necessary for me to come to terms with entrusting others with her care and safety, she also wants to go outside and play with the neighbourhood kids.  


Of course she does!  She is a kid, after all.  But with this comes other issues.  The whole “Can I go to Lisa’s house to play, Mom?  Her Mom says it’s okay” scenario has started to play out.


Now, to non-D folks this likely doesn’t seem like that big a deal.  But to D-parents it strikes fear and anxiety in our hearts.  Yet we don’t want to deny our children what all children have the inherent right to experience.  We don’t want to be overprotective, but we know only too well how diabetes can sneak up and bite us in the ass when we least expect it.  How can we be certain our child will be safe in someone else’s home if that person doesn’t have a sniff about diabetes and its jerk-face ways?!  


There is so much to consider.  Jenna doesn’t like drawing attention to her diabetes.  I understand this.  She wants to be like other kids.  I get it.  But, as much as Jenna doesn’t want to make diabetes a focus, she has surprised me with her awareness of the situation and her responsible approach to managing it.  She may be only five years old, but it appears that she knows the importance of disclosure.  This came as a surprise to me just today.

I was doing my best to allow Jenna the freedoms any five year old should have.  She wanted to go with her big sister to a neighbourhood kid’s house for a while to play.  I gave permission for them to do so.  But as I watched her disappear inside a house that wasn’t ours, I knew I had to disclose Jenna’s diabetes to the Mom.  I jogged up to the door where the Mom stood waiting for me and began my speech:

“I just want to let you know, Jenna has type 1 diabetes....”

“Oh yes.  I know.  She told me yesterday when the kids were playing outside.”

I was surprised to learn that Jenna would offer up this information on her own.  She has scolded me in the past for doing such things.

I finished my spiel then turned and walked back to my house, went inside and closed the door.  What no one knew at the time, was how hard it was to make that walk back to my house.  Alone.  Without my five year old diabetic child.  Trusting a mom who only received a 30 second summary of the situation to identify my daughter’s need for intervention, should that need arise.  It helped that Jenna’s older sister, who has proven to be excellent at spotting symptoms in the past, was with her.  It also helped that the house she visited was just steps away from ours.  Yet it was still an unsettling, foreign feeling to leave her there.

But I did it.

I made up my mind I would return within half an hour to perform a blood sugar check.  And as I went to the kitchen in my suddenly, unnaturally quiet house to make myself a cup of tea, it occurred to me; Jenna is starting to take ownership of her diabetes.  She isn’t ashamed of it.  She just doesn’t want it to be the main focus.  She wants some control over the flow of information.  This is a good sign.  I have always been concerned about Jenna being embarrassed or ashamed of her diabetes which could prompt her to hide it.  Nothing scares me more, as she gets older, than the thought of her being around people who don’t know what to do should she require someone to act quickly on her behalf to thwart a low.

Today gave me reason to believe that Jenna is developing a healthy view of her diabetes.  Today renewed my faith that Jenna will be okay.  Today gave me hope.


  

Everything Is Going To Be Alright.

When we left our home of four years I felt uneasy.  It was the community that saw us through Jenna’s diabetes onset and diagnosis - the town that supported us and comforted us during a dark time in our lives.  The doctors, nurses, pharmacists and support staff -  they knew us.  They knew our little girls.  They knew Jenna.  To leave that was scary and upsetting.   Diabetes isn’t something that can be left unattended for any length of time at all.  It requires constant attention and a steady stream of medical accoutrements.  Consequently, people with this disease quickly find themselves on a first-name basis with their friendly neighbourhood pharmacy staff.  It’s like our home away from home.

Today we spoke with a pharmacist at the pharmacy we will be using in our new community to obtain all the supplies Jenna requires for her diabetes management.  He had us feeling comfortable, taken care of and at home within the first five seconds of our interaction with him.   As he input Jenna’s information into his computer data base he told us there were lots of insulin pumpers in the area and he likely stocked everything we would require.   My eyes widened.  “Really?  Lots?!”

“Oh sure.  Kids...adults...hockey players...lots of people.” He looked up from his computer and smiled.   I felt like I was being hugged by our new community.  

But it wasn’t just the idea of there being others in our new town with type 1 diabetes - like Jenna - who pumped insulin - like Jenna - that had me wide-eyed.  It was also the fact that this pharmacy had an ample supply of everything we would need at any given moment.

“So...if I wanted a box of infusion sets today...like right now...you could hook me up?” I asked trying to sound poised and hide my giddiness.

“Yup.”

I peaked around the counter in disbelief when he disappeared behind the shelves to retrieve a box of infusion sets to show me.  Sure enough, there on the shelves were stacks of boxes of infusion sets, cartridges and every type of meter you can imagine.  The multi-clix we love so dearly were also stocked in abundance in tidy little boxy towers, lined up just as neat as you please.  

I stood there like a kid in a toy store, my mouth hanging open.  

“Wow.  That’s...that’s just really awesome.”  At this point I’d given up trying to sound cool and together.  I think I may have even giggled this ridiculous, little girl giggle.  I was treading on uncharted territory.  I have never dealt with a pharmacy that not only had  “lots” of other type 1 diabetic insulin pumpers for customers but had an impressive reserve of supplies at the ready, for the asking.   

I left that pharmacy with a smile on my face and a spring in my step.  I felt safe.  My little girl will be taken care of here.  

Everything is going to be alright.