Wednesday, April 27, 2011

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.

Sunday, April 24, 2011

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.


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. 

Monday, April 11, 2011

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.