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.  

You Can’t Go Home

It should be noted that the D word is not mentioned once in this post.  But we all know that even though it isn’t mentioned, it is always present - stealing sleep, demanding attention and consideration, and sapping energy.

*   *   *

We have spent the past nine weeks of our lives on an incredible adventure.  We have seen amazing sights and pushed the limits of our comfort zone.  I, personally, have grown and gained invaluable insight and perspective into certain aspects of my life that have been a bit of a confusing puzzle for many years. 

I’ve been amazed at the courage my two little girls possess.  They are incredible.  Their intelligence and maturity has me in awe.  They are kind-hearted, compassionate, polite, capable little people.  I am so proud of them.

I’ve learned that it’s true; you really can’t go home.  And the longer a person has been away from home, the more that proves to be true.  I’ve realized that I need to heed my inner voice, especially when it is screaming at me.  I’ve learned that I can let go of the past and live fully in the present.  It’s okay to do what I know to be right for myself and my family, unapologetically and in spite of others disagreeing.

I’ve discovered that the word “family” means different things to different people and it can be surprising, sometimes, to discover just who comprises your family.

If you’ve ever wondered if doing without and simplifying life can actually bring about personal growth and a heightened awareness of what is really important, I can say, undeniably, it does.  The old adage - you don’t appreciate what you have until it’s gone - is accurate but incomplete.  It should end with - but you learn to appreciate what’s left so much more.

This has strengthened my little family, and we were a pretty cohesive unit to begin with.  We are quite a team.

We are going back to the mountains - my husband, two little girls and I - because that is home.  It’s where I left my heart nine weeks ago.

And it’s there still, awaiting my return.

“Come home, Sherry!  I’ve missed you!"

Diabetes + School = A Pickle

OH MY GOSH!  How do you parents of school-aged kids with diabetes do it?!

Honestly, I’m in a bit of a pickle.

Okay.  It’s not entirely a pickle, per se.  I’m pretty sure I know what I need to do here.  Let me lay it down for you:

So, Jenna started junior kindergarten last week.  Now, keep in mind that Jenna has just undergone a major life shake-up, having just moved.  You may also want to factor in the fact that Jenna has been by my side almost constantly since she was born.  Her diagnosis was at 2 years of age -  I didn’t go back to work after I had her, and her diabetes has made it difficult to be away from her for any longer than 2-3 hours at any one time.  I have had no weekends away - no days at work... nothing.  So Jenna is accustomed to me being there.

Now, developmentally speaking, I know that she is at an age where she can handle school.  She is very ready for the classroom environment and to start the formal, structured learning process.  Developmentally speaking!

Emotionally, however?  All things considered?  Not so much.

She cried.  A LOT.  She did not want me to leave her.  We tried, my husband and I.  And it would be one thing if we could just go and not return until the end of the day.  But, since the school hasn’t had a chance to arrange special needs care -- heck, they don’t even have a diabetes protocol prepared yet!  And since it isn’t clear which province will be footing the bill for said special needs care due to our recent move from the west coast, I must be available twice in the day to check Jenna’s blood sugar and administer her insulin while the school gets its ducks in order.  Furthermore, since no one in the school has any solid knowledge about type 1 diabetes, I am incredibly uncomfortable leaving her for any length of time anyway!  It’s all those what ifs we know all too well. What if she goes low?  What if she goes high?  What if she goes so low she requires glucagon?

Anyway, I’ve been somewhat consumed by this over the weekend.  Should I persist and bring her again tomorrow?  Should I insist on staying with her in the classroom until she is comfortable?

Or maybe I should just let it go for now -- maybe even skip the junior K experience altogether and wait until next September to start senior K.  By then we will have moved into our permanent home and we will be more settled - more stable.  Jenna will have had a chance to get her bearings - maybe even develop a strong desire to start school.

I should tell you that Jenna is strongly in favour of that last option.  And I want to take her feelings into account here.  She may only be 4 and 3/4 years old, but she has been through a lot.  She knows what she needs in some respects.  And right now, I believe her when she says she isn’t ready.  I trust her when she tells me “I just want to wait until I’m a little older, Mommy.”

Furthermore, the school isn’t ready for Jenna’s diabetes.  They are clearly daunted by idea of a type 1 diabetic, junior kindergartener right now. They are intimidated by it.  (To give credit where credit is due, they have asked a lot of the right questions and have attempted to see to our needs - this, in spite of having to talk myself down when they recommended I conduct her blood sugar checks and insulin bolusing in a “handicapped bathroom” located at the end of a long hallway, a considerable distance from the kindergarten classroom -  a suggestion that smacked of discrimination and an attempt to hide the perceived blood and gore away from all those “fragile little kindergarten minds."  But that is another post I will write very soon.)

And to be perfectly honest, I’m not sure I’m ready to entrust her diabetes care to a stranger.  I’m feeling hyper-protective of Jenna right now in light of all the changes she has endured.  And I’m not sure I’m up for the task of educating those requiring education and dispelling the myths and prejudices to make this school diabetes-friendly.  Not just yet.  I have a lot on my plate right now and the task of educating and preparing the school is one that requires my full attention and a great deal of preparation.  If I wait, I will have the next seven months to do just that.  And that might just make a huge difference in how both Jenna and I feel about her starting her scholastic journey.

If anyone has any advice, resources or ideas regarding how to make this school a safe place for Jenna, I’d been keen on hearing from you.  I’ve been told by the office staff that Jenna will be the first child with type 1 diabetes they have had in attendance, as hard as that is to believe.  I think I have my work cut out for me.

Update: 


Jenna has been attending her junior kindergarten class with me present.   Initially, I decided to wait until next September to start her in senior kindergarten.  But after talking to the principal about this and being assured that Jenna’s school day duration could be shortened to accommodate her anxiety, and after being told I could remain in the class as long as I like,  I decided to persist.  Jenna has gradually increased her stay each day and now remains until the end of the school day.  I have been gradually decreasing the amount of time I am present in the classroom in an attempt to get her accustomed to being on her own.  She is doing incredibly well - even telling me “I’m fine, Mom.  You can go now.”


However, I am only absent for about an hour and a half at a time right now, provided her numbers are in a good range and she has eaten well prior to my departure.  There is still no funding for additional assistance from a nurse to do blood sugar checks and administer insulin for snacks and there has been no education aide assigned to Jenna specifically to watch for signs of trouble.  Furthermore, I have yet to do any diabetes teaching with the staff so I am not comfortable leaving Jenna for a prolonged length of time.  Next week I have made arrangements to conduct teaching with several staff members.  I will also be supplying an emergency kit to the classroom to perform checks and treat any lows.  This should help with my peace of mind a little.


I would like to thank all you amazing, clever Moms who gave me such awesome advice and tips and pointed me in right direction for resources and support.  I am so grateful to you all.  

We Made It!

I’m a little late posting this but we arrived at our destination in southern Ontario late Friday evening and have been basking in small town charm and the loving warmth of family ever since.

Our trek across Canada was not without it’s trials but we played it safe, travelling during good weather and staying put when the weather got nasty.  Which was often.

Frosty prairie morning

A word about the prairies: COLD.

How cold?  I’m talking scary cold; the kind of cold that makes you thankful for shelter.  And central heating.  And cars that start, regardless of hell freezing over!

But along with the breathtaking temperatures came the equally breathtaking sunrises.  The sun coming up over a distant, flat horizon on a crazy-crisp morn is an incredibly beautiful sight to behold.  It almost made the early morning wake-up calls and the frozen-together eyelashes and nose hairs worth it.....almost.

A prairie sunrise

The girls were incredible on the road!  I had purchased a few road-friendly activities at a craft store and kept them hidden away until I was desperate for a diversion - something to keep them occupied and help pass the time.  My scheme worked surprisingly well.  But with that many hours of driving, even the most engaging activity couldn’t guarantee a trip completely free from the occasional bout of restlessness and boredom.  The girls had their moments, especially during the final leg of the journey.  But overall, they did far better than could be expected.

How did the D behave?  Not too shabby!  Jenna’s numbers stayed in or near target for the most part, with the help of raised basals.  There was one day I forgot to raise her basals and, as you might imagine, with sitting all day in a vehicle, her blood sugars crept up into the mid teens.  It served as a reminder of how important activity is to good diabetes management.  The guilt I felt also served as a healthy motivator to remember to raise her basals.

Beautiful sunrise in northern Ontario

So yeah.  We made it.  And now begins the process of starting life anew - registering the kids for school, setting up a case conference to address Jenna’s needs at school, finding G.P.’s and endocrinologists, signing up for provincial health care...life is busier than ever.

But life is good.