Tuesday, October 16, 2012

"I Take Full Responsibility Mom" ~ Joe Maher

I have written on the BUDDIES to humor, to help, and to let other Type 1 families know "same-same".  Our daily grind goes unnoticed by most.  Our "dangers" of activity and food and the lot seem silly to those living the "normal-normal" and not the "new-normal" that we endure.  Today.  Today we had a bit of a scare.

Right now I am writing because I believe today taught me some valuable lessons;  things that I would want to share.  Right now I am grateful that I was with Joe during the following events and that he was not out in the community alone for the one to two hour chunks of time that we have built up to comfortably and confidently as a Type 1 family trying to navigate our way through diabetes management, growing up, and independence-muscle-flexing.



Today...

As I picked-up Bridget from school....

Joe to Bridget:  "I had a diabetes crisis today." ("Diabetes Crisis" - his phrase, not mine... nice drama Joe)

Bridget:  "Oh..." then she somehow proceeded to "blah...blah...blah-ing" her way into changing the subject to boy-girl-middle-school-drama. 

Little did Bridget realize the truth that Joe spoke.  He did.  He experienced a diabetes crisis.  He received approximately 50 units of insulin around noon today (why this is bad).  To put this into perspective, Joe's body and his carb consumption usually utilize around 15 to 20 units of insulin daily.
He received 2 to 3 days worth of insulin in one bolus.  The pump did not malfunction.  Let's just say that Joe had the cartridge out of the pump...the cartridge remained connected to Joe.  Joe received the contents of the cartridge subcutaneously in one fell swoop.

Joe thought that removing the cartridge from his pump was an "easy way" to disconnect from his pump (long, long story).  He did not realize the danger that he placed himself in by doing so.  He is mad at himself. He takes full responsibility.  Yes, he is nine...but, he gets it...he "got" it...the gravity of the mistake. He missed the rest of his day at school.  He missed Math Olympiad.  He missed hockey practice.  He did not bemoan any of it because he knew he was fortunate to be conscious and to be able to free-base carbs like nobodies beeswax.

Luckily, we have been able to manage the resulting low trending blood sugars at home.  Luckily, Joe has a healthy appetite. 

It is now 8pm, 8 hours later, Joe has consumed a few hundred grams of carbs for "free"..both long and short acting.  Joe was disconnected from his pump for the first couple of hours after the 50 unit bolus...his basal rate is currently halved.  His blood sugar has not seen triple digits since the incident.

I am waiting for the lows to subside and the subsequent highs to ensue.

I have a feeling it is going to be a long, sleepless night.

A day-in-the-life of a huge mistake and lessons learned:
  1. Teach your kid to never, ever, never, ever, never take the cartridge out of the pump while connected to it.
  2. Never, ever, never, ever, never, ever underestimate the power of ginormous amounts of insulin.  Seriously...it is 8 hours later...I have not bolused for 1 gram of the hundreds that Joe has consumed in the last 8 hours.
  3. We are fortunate.  I am so very thankful that Joe is OK.

Sunday, September 30, 2012

Welp, He Did Good. I Did Not.

We're up...



Been up since 5:30, avoiding the breakfast IOB...Joe's tryouts are at 8am.  Last night, as Joe went to bed, I asked him to wake me when he woke in the morning.  Told him that I would get his breakfast ready right away...plan was to hopefully feed him before 6am.  Breakfast, bolusing, and morning hockey have notoriously been problematic for us over the years.  Joe's body seems to be extremely insulin resistant with his first bolus to cover carbs.  His breakfast ratio is a 1:10 (the rest of the day it is a 1:20 to a 1:50...interestingly enough the 1:50 comes at morning snack to put the "brakes on" the 1:10).

OK...that's the boring stuff...onto the good stuff...

Tryouts (part 1) went well.  Well, that is, Joe did well.  He skated hard.  He did his best.  Dave and I were proud of him.  Most importantly, Joe was proud of himself.  Felt he did good.

I was, however, a bit disappointed in myself.  I share everything, too much perhaps, here.  I share the good, I share the bad.  I am not always pancreating perfectly and, as you know, my parenting tactics have their own set of issues.  Combine alternative parenting, with being a pancreas, and with being a hockey mom...well, I mess up.  A lot.

Here is what happened...please don't judge too harshly...I just wanted my kid to be evaluated on his skating...not on coming to the bench...I just so badly wanted for this chunk of time ...tryout-time ...for diabetes to not be involved.  I always say I don't really care about where Joe gets placed as a result of these tryouts.  My actions and behavior yesterday...well...they speak otherwise.  I need to take a look at that, in myself.

Joe's pre-tryout blood sugar was 288.  No IOB.  I did nothing, thinking he would skate it down.  Joe's and my plan included a blood sugar check half-way through the tryouts...at the 35-ish minute mark. 

There were about 40 children on the ice.  They were each assigned numbers and were wearing a corresponding pinnie.  Evaluators were sitting on the opposite side of the rink, with clipboards...  The kids do drill-after-drill-after-drill...repeating each one several times.  20 minutes into the session the kids are in like 6 lines...whistle is blown...a skater from each line takes off...skates hard to the blue line...hockey stops...whistle...another wave of kids takes off...first wave moves onto next line...whistle...third wave of skaters take off...first and second waves are moving on down the ice...skate.stop.skate.stop.skate.stop...they looked like soldiers. During this intense skating-hockey-stopping-drill, Joe peels out...to the bench...looks up at me and gives me the "finger-poke" sign, indicating he feels low.

Fine.

I noisily clump and clop down the bleachers in my newly purchased Old Navy ankle boots (bootlets?)...Woodchuck slung over my shoulder.

I was running fast.  I didn't want Joe to miss his evaluation time.  As I rapidly approached the bench, I hear a coach telling Joe to "get out there and hustle".  I chime in with a "he has diabetes...needs a blood sugar check".  He backed off.  Told us to take our time...meanwhile, Joe is missing out on evaluation time...looking like a ninny to the evaluator guys holding the clipboards across the rink.  They don't know our situation.  Not sure I want them too, but don't want them to think my kid is a big baby that needs to go to the bench to be coddled by his mommy.

In one fluid motion...I ran to the bench, pulled out the glucometer...loaded the strip...pulled out and cocked the lancet...Joe's number was checked.  He was 271. 

*thought here is that site is going bad...mid 200s all day...not budging...Joe's number will hold steady for the rest of tryouts*

So, I said to Joe something like ... "Don't come back over to the bench.  You are fine.  You are 271.  You're number hasn't budged.  They (my eyes dart over to the clipboard guys) are evaluating you.  You don't want to miss skating time for unnecessary checks. Don't come over...unless..."

"Mom, I felt low."

"Yeah, I know...but your not...go skate...and...have fun." (but what I really meant..go skate your patootie-off...screw the fun)

So, off he went.  He skated.  He stick-handled.  He did fine.

Then, with 15 minutes left...he comes to the side of the rink.  I am looking at him with a "what can you possibly need?" look...mascara-fringed eyeballs kinda buldging outta their orbits.  Through the glass, through the helmet, through his gestures, I make out that Joe now has to go pee.  Denied.  I somehow convey back by pointing to the clock and giving him a "what-the-what?!" look with exasperated arm gestures that pee-ing will have to wait.  He skated off.

Not sure how the mid to high 200s feels on one's bladder.  He finished though.  Did well.

Post-tryout number was 273.  Changed his site.  Only 1/2 corrected and bolused for dinner.  He came down to 100 within and hour, or so.  Had to stop the crash with a couple of glucose tabs.

A day-in-the-life of diabetes being part of it all...even when I wish it would just go away.

Saturday, September 29, 2012

Never Let Your Fear Decide Your Fate

60 minutes or so...ago...

Driving back across town to buy a 564xl black cartridge for our printer.  Gotta have Code of Conduct printed and signed and Medical Form printed and completed by 3:30pm today.

...for Joe's hockey tryouts.

While driving, I am on the phone "directing " Dave, who is manning Joe.

"Feed him something now.  I don't want to go into tryouts with IOB if we can avoid it."  I've said it once and I'll say it again...never, never, never underestimate the power of IOB.

You see, I am nervous.  I don't wanna let Joe down.  A low or serious high can effect Joe's well being and subsequently his performance. I want to make his blood sugars be a non-issue today, tomorrow, and Monday (his three days of tryouts).

My favorite song these days...is "Kill Your Heroes"...I love the part that goes "never let your fear decide your fate"... Gets me pumped up and rings so true.



A day-in-the-life of fretting over my pancreating abilities for my son Joe.

Thursday, September 27, 2012

D' Diligence

This just in...


By the way, I am grumpy...have a cold...

Car ride home from school, about 10 minutes ago. 

Me to Joe:  "You ordered the school lunch for the field trip tomorrow. Right?"  (We filled out forms for the all day hike a couple of weeks ago.  My mind is already carb-counting-out his lunch and trying to settle on some sort of basal reduction plan that may or may not work depending on the Universe's alignment and 'tude tomorrow...oh, and Joe's growth hormones, exertion level...hikes have notoriously left me a wreck in the past.  My worry of losing Joe in the woods connected to lethal amounts of insulin dripping into his body is a hard habit to shake.  He hikes fast.  I am usually clambering up or down some mountain paces behind him...yelling for him to slow down...it has been like this for years... yes, it is a little embarrassing)

DUH-faced Joe: "Mom!  You did not tell me to hand in the forms."

*internally going all kinds of ballistic*

Let me tell you the system.  The school sends home a folder.  Every.Friday.  The folder has two sides.  One side is labeled "home" and one side is labeled "school".  So the forms to view and complete are in the "home" side of the folder.  I view them.  I complete them.  I then put them in the "school" side of the folder.  The folder then makes it's way to school via Joe's backpack.  Now, I don't know how the folder traverses the school from this point on, but I am assuming that some-how, some-way those forms get to where they need to get. Hopefully the issue here is that Joe forgot about those particular forms on that particular week a couple of weeks ago.  Hopefully he is all set to go...for tomorrow.  Hopefully, I am frustrated for no reason.

Me:  "Joe the forms were in the folder." (firm, no-nonsense voice)

Joe:  "Ahhh .... what folder?" (mind you, there is only this one folder in Joe's life right now)

Me:  "Joe, this is your job.  I put the papers in your folder two weeks ago.  It had your permission form.  It had your menu choices.  It let them know that I am riding the bus and going on the field trip with you.  I am gonna blow a gasket on ya."

"And ...did you turn in your book order?"

*his blank expression spoke for him...he forgot to turn that in today*

"Fine.  If you don't hand in the book order, you don't get the books.  That is a logical consequence."  Using tactical parenting lingo while actually parenting is most likely not smart.  I am giving him an unfair advantage.

We pulled into the driveway.  I had, finally, calmed.

Bridget, Joe and I settle into the kitchen.  I look over Joe's daily diabetes log. We are still struggling with managing a large drop from pre-recess to post-recess.  At this point, I hesitate before looking at the numbers...depressing.

Joe notices me looking at his numbers.

Joe:  " I was double-downing before recess..." (he was 108 while Dexter showed the rapid drop)

Joe continued on:  "I didn't go for an Oreo~boost.  I needed fast-acting sugar for that number ... with the double-down and all.  I went for Skittles".

Joe's day-in-the-life of being a normal, forgetful nine year old boy while showing D' diligence.

Wednesday, September 26, 2012

The In-Between Place

11:58pm last night...on the heels of the news of another child lost, at the age of 13, to Type 1 Diabetes...


I hear it.  Is it part of my dream?  As I lay there in some sort of state between wake and sleep, I try to figure it out.  The sound.  What is it?  Then it stops.  My mind rests.  I slip back into sleep.

It starts again.  I hear it.  My body and mind struggle with the sound; having a difficult time placing it.

Some nights it seems that Joe's Dexcom can alarm for a good hour before I wake enough to identify it.  There are hours of my nights that are spent in that "middle" place...not awake...not sleeping...in a cloudy haze.  Too tired to wake.  Too awake to sleep.  If that makes any sense what-so-ever.

Finally, I placed the sound.  Shit.  It is Dexter.

"LOW" is on the screen.  The "Under 55 Low" alarm.

I kinda lay beside Joe, as I ready the glucometer...eyes half-focused...so tired...cannot really tell if he is breathing...he is not really moving...or responding to my touch as I handle his finger for lancing.  Good.  The blood comes quick after the poke.  A sign of life. 

The blood is wicked up the test strip.  The glucometer counts down 5~4~3~2~1.  A 105 graces the screen.

I shutdown Dexter.  His accuracy has been off with this sensor.

I leave my 3:00am alarm set.  The 105 bears watching.

A day-in-the-life of my nights watching over Joe. 

Friday, September 21, 2012

KinKy In The Car

5:50a.m. this morning...Dexter was donging-off for "LOW", Joe was actually 223.  I corrected and planned on changing Joe's site when he woke.  It had been in since Monday (that is a long time, I usually change him out every two to three days).  I also made a mental note to rip out Dexter.  He was dead to me. Liar.

About an hour later, still wearing his clothes from yesterday, jeans and a long sleeve tee, he was snuggled in his bed with our Miniature Schnauzers.



"How was your sleep bud?"

"Great, I am just giving these little cuties a tummie rub." His face was buried in Oscar and Henry fur.  (See, I just call him a "troll"...he is a pretty darn good kid with a kind heart)

"Look it, you cannot go to school in the same clothes your wore yesterday and last night...change and come down stairs for a new site."

He changed.  New site was done.  Dexter was ripped out.  Pre-breakfast number was 189.

He ate 54 grams worth of wheat toast smeared in butter, peanut butter, and honey.  He was bolused.

Off to school he went.

9:30-ish a.m. The School Nurse calls.  Joe was in the 400s, washed his hands...rechecked, he was 388.  I tell her about the new site and that if his pre-lunch number is over 250 to check for ketones and to call me.  The site may be bad. 

12:00-ish p.m. Yep.  You.Guessed.It.  The School Nurse was calling to let me know that Joe was 468 with moderate ketones. "OK.  I'll be right over.  He needs a site change."  I shove my partially consumed salad in the fridge.  I don't want Joe to miss out on much of his lunch-time and am dreading the "recess" plan.  He should not be running around ketotic.  This was not gonna go over well with a 400+ Joe.

As I pulled into the school, the front of the school, Joe ran out to greet me.  Apparently, we are back to doing school~site~changes in my vehicle.  He plopped in the front of the car...upper body in the drivers seat...butt up over the console-y thing...I was in the passenger side with Joe's legs.  He wanted the door shut.  Fine, I crammed myself in and shut it.  The bad site was removed.  The new site inserted without issue.  I could not find the IV 3000 that I had placed in the car for the site change.  I was trying to hurry ... I grumbled at Joe about the ridiculous position he and I were in...in the car...and could he see if the IV 3000 was under his hands in the driver's seat.  As I grumbled at him, he grumbled at me..."Diabetes is ruining my lunch and recess...." 


KINKED SITE

IV 3000 was found, under my butt.  I slapped it on Joe's butt.   (the IV 3000 keeps Joe's sites situated and allow Joe to be the ever-loving...always-moving Joe that we know and love).   Joe then got his shorts situated.  We hugged; both of us knowing and needing to convey to one another that none of this is our "fault". Diabetes was being a turd today.  Period.
 
The lunch bolus was gargantuan.  I gave 2/3 of the correction and a full carb bolus.  I have learned that bad sites followed by good sites...can drop Joe quickly...thus the 2/3 correction.

I've got the mechanics down.  The numbers, the boluses, they don't make me second guess myself often.  It is here, with the recess issue, that I struggled.  Moderate ketones...huge bolus...and recess...are not a good combination.  I knew that this was not going to go over well with Joe.  The School Nurse offered some fun hang-out-in-the-Health-Office-time with a good buddy of his choosing.

Nope.  This did not sound like a good deal to Joe.  He did not whine or complain.  He was, however, firm.

Me:  "Joe, do you think you could do recess without running?"

Joe:  "I just wanna do the bars...back flips."

Not really back flips...but going backwards around the bars...he has been learning tricks from the girls.

Me:  "OK...the bars ONLY."

Joe:  "How about swinging and the Gyro?"

Me:  "Fine. Swinging, NO Gyro." (Swinging seemed harmless...just some leg pumping...no to the Gyro because it is kind of high off the ground ~shoot...just realized the swing is high off the ground as he pendulates... back to the Gyro.... he has to hold on for dear life and it spins...it just seemed like a good idea to have denied it, as he hopefully euglycemi-tizes (a word?).

So, I am left here second guessing the activity and the ketones.  If they were HIGH, I would have said "NO" to recess.  Moderate...with known cause...I "modified" recess.  What do you guys do?

Our kinky day-in-the-life.

Thursday, September 20, 2012

A Mess

Ugh...It was a mess.

It started with Joe rolling up the BETA BUDDIES Book and kind of sitting on it.  He did not want the class to see his picture on the cover.

I think he looks CUTE here...

So, Joe and I presented Type 1 Diabetes to his class yesterday...

I think, well I know that I embarrassed Joe.  I left his school feeling pretty bad, sad, and mad.  Mad at myself for not choosing my words more carefully.  Disappointed in myself for still crying.  Six years into this life of managing diabetes and I still cry when I tell his classroom that what I want them to take away from my talk about diabetes is that Joe is a normal boy that can do anything that he sets his mind to.  Of course I did not say it eloquently like that.  I said something like "he likes to run and play just like each one of you...he has brown hair...he has brown eyes...and ..." (* could not speak as my eyes started stinging and I lost my composure a bit*)

Joe's teacher, thankfully, took mercy on me and got the class engaged in talking about all the sporting activities Joe participates in.  They talked about his sweating issue, which they all thought was due to diabetes.  I chimed in with I think Joe is just a "sweat"-er.

One child then asked how I knew to take Joe into the doctor when Joe was diagnosed.  I talked about the sippy cups full of water just to satiate Joe during short car rides to the grocery store.  I then said something about urine laden diapers.  Apparently, and I realize this is common sense, "sippy cup" and "diaper" and perhaps "urine" are taboo words when talking about your nine year old in front of their entire class.  I am sure the "sweat" coversation did not help matters either.  I suck.

Joe handled it with grace.  He pulled a "Reyna", by diffusing his embarrassment with humor.

I left his school heavy hearted, feeling like I let him down.  I think not having the book to focus my attention lead me down the path of insensitive bodily excrement talk and infantile product discussion.

Ruining Joe's day-in-the-life.

Tuesday, September 18, 2012

SIX

Welp.

It was six years ago today, at about this very time that I was driving Joe to his Pediatrician's office.  It was there that his urine was dipped and sugars and ketones were detected.  It was then that he was diagnosed with Type 1 Diabetes.


An important day that changed our day-in-the-life.

Wednesday, September 12, 2012

Thank You Phone Caller Friend. Community.

You can thank the letters "W" and "M" for the following post.  I have been up.  I have been up at 1:40 correcting a 300.  I have been up at 4:15 making sure the correction worked or that it didn't induce coma.  And I am now...just up..because who can sleep with all these ups and downs.  I wonder how Joe's body feels while it is "W"-ing and "M"-ing?  And I swear that right before the "W" there is like a finger pointing at me...like I did something wrong.


**********

Phone call the other day after school.

Me: "Hello?" (newish phone, didn't have friend in my contacts yet, hence the "?")

Phone Caller Friend:  "Hey...we just saw Joe pushing his bike up Brickyard (a street)...he looked a little .. tired.  Does he have a phone or something?  ... Just thought you would want a heads-up..."  Now I am pretty sure she was calling to give me a diabetes "heads-up", but maybe it was a normal "heads-up" call.  My mind almost always goes to "diabetes" where Joe is concerned.

Me:  "Thank you so much.  I just checked his number at school.  It was in a good range for him to ride home.  He is walking because ... bike is a BMX bike ... no gears (by the way, let me insert here ... a total blood sugar buster).  Please always feel free to call if something looks off.  There may be times Joe could use some help."

A village.  Did I ever tell you that I actually do live in a village.  Essex Junction is a village.  A village, by definition is a community smaller than a town.  I think the term "It takes a village"  really hinges on the "community" part of the "village" definition.  Community:  A group or society helping one another. 

**********

This year, after school is going to be a bit different.  Joe will bike home and go to after school activities.  I reflected this on his daily log; the piece of paper with carb counts and instructions that accompanies Joe to school daily via Woodchuck.  I have added a "sugar sliding scale" of sorts to boost him according to his 2:45pm number. 

Presenting the 2012 "LOG"

Here is the blown up part of the "sugar sliding scale" instructions.  I also like to use it for P.E. Days.



Community in our day-in-the-life of looking out for Joe.

Monday, September 10, 2012

No Boluses



Last night...

In our kitchen...after dinner...Joe with a smidge of a smudge of Ranch Dressing on his cute chin...

Somewhat outta the blue...

Joe:  "So I would die without Insulin?"

Me:  "Yeah...not immediately ... but eventually..."

* (uhhh ... ...  would it take days?  weeks?  I hope he doesn't ask.. please don't ask...please don't ask) *

Joe:  "So, before Insulin was invented people with Type 1 Diabetes died?"

* (thank you ... ... not asking... not asking) *

Me:  "Yes, they would."

* (I will not go into the uplifting "Death By Starvation, Dehydration, and Acid-ation" talk right now) *

Joe:  "Gosh, I just want Diabetes to be CURED."

Me:  "Can you even begin to imagine? A CURE?"

Joe:  With eyes wide and a smile tweaking his lips "No boluses, only checking!!"

It is here where my heart broke a bit.  I am not sure if it is the way his face lit up when he said it or if it was the fact that taking away just one portion of the care was a CURE to Joe. 

Conversations with Joe during our day-in-the-life of living with Type 1 Diabetes.

Thursday, August 30, 2012

Our Parenting Conversations Are Different

Six years almost.  Six years since Joe has been diagnosed.  It is strange how a certain acceptance has developed.  As I send him out on his bike, on in-line skates, on foot into our community, as I tuck him into bed at night, as I drop him off at school ... a teeny-tiny part of my heart and my brain is always aware and somewhat prepared for the possibility that I may not see him again. 


The kids were out in the 'hood playing with their friends.  Joe was squirting a hose into a gaggle of girls squealing their protests.  I was prepping dinner by laying out the leftovers on the kitchen island.  Dave walked in from his day of work.

This was last evening.

Me:  "Good day?"

Dave: "Yeah..."

*Or I think he said "yeah".  I was only half listening.*

Me:  "Kids had a good first day of school...Bridget loves middle school ... Joe said his day was boring...blah...blah...blah."

*pause*

Me: "A child died last night.  Seven year old.  Diagnosed at two.  Low or Dead In Bed.  Parents slept through a night check alarm. Found him in the morning."

Dave: "Can you imagine?"

Then, we went there.  We went to a place we haven't gone.  Actually, it is something I had not thought about; one of us blaming the other for a missed night check and a gone Joe.  We are human.  We need sleep.  This family is facing our worst fear; the death of their child.  The night check ... done or not ... may or may not have prevented this death.  The thought of struggling with "the blame" and "the guilt" while dealing with "the grief" is overwhelming.

Me:  "We would not blame one another... would we?"

Dave:  "How could you not 'go there' ?"

Me:  "I guess you are right ..."

A day-in-the-life conversation between my husband and I, as we parent a child with Type 1 Diabetes.

Tuesday, August 28, 2012

His Pancreating Ways R Driving Me Cray Cray!



"Owww...HARhumph .... MOM!!!  You are talking way too loud!"

Joe and I were on the phone the other day.  He has a new Tracfone.  Dave and I had bought it for Joe as a safety-net as he undertakes all of his various endeavors before and after school, while playing with his pals in the 'hood, and all of Joe's what not.

Joe was calling me from his friend's house.  He and his friend were about to eat a snack.  Our plan was that he was going to call me with a blood sugar number and a carb count and an activity report to calculate how much of an insulin bolus to give.

Back to the convo....

Me:  "Joe, I don't know what you are talking about.  I am talking "normal"." (using an extra calm and soft, soothing voice ... yes, I have one of those)

Joe:  "Oh...I put it on speaker...oops...gonna keep it there though.  My ear is sweaty."

***Ewww****

Joe:  "We are gonna eat a snack."

Me:  "How many carbs?"

Joe:  "29"

Me:  "What was your number?"

Joe:  "Huh?"

*seriously?...how many years have we been doing this?...eye-roll...no sigh...trying to be somewhat of a good parent and pancreas all at the same time... which, by-the-way, is not easy*

Me: "Ah...did you check a number?"

Joe: "No."

Me:  "JOE, check a number."

Joe:  "OK"

*muffled voices, screams, laughter...he is having a good time*

Joe:  "101"

Me:  "What is the snack?"

Joe:  "A Popsicle-y thing."

Me:  "Is it all Popsicle? OR is there some ice cream involved with it?" (If it were all Popsicle, I would only have him cover 10 grams max.  Between the activity level and the glycemic index, Joe tends to drop like a rock when I fully cover Popsicles, juice, and the like)

Joe:  "It is like an Oreo Ice Cream Bar."

Me:  "OK...bolus for 20 of the 29 grams."

Joe:  "Bye Mom"

**********
Not sure what is going on with Joe these days.

We have been doing "Diabetes" for roughly six years now.  The last month or two have proven to be a bit difficult as Joe's independence with diabetes and "life" in general is expanding.  He meanders the 'hood on his bike visiting friends and looking for "work".  He started a Lawn Care business with his friend (his motto is "We put the CARE in Lawn Care" ... catchy).  The playdate, mentioned above, is the fifth home that he has ever gone to without me, his portable pancreas, in tow.  It is the first place that I did not train the parents in preparation for his stay.  I am becoming more and more comfortable with letting loose a bit.  He always travels with sugar. He has the phone.  He is with a friend. We always discuss, double discuss, and triple discuss our "plan" regarding blood sugars and diabetes management.

We are running into some issues though... 

1)  He isn't checking his blood sugar before he eats.
2)  I am getting frustrated. 
3)   I am sighing...out loud...sometimes. 
4)  He says he forgets.  Once he is reminded, he does it without complaint. 
5)  AND.  I catch him free-basing crackers, chips, and snack-like items when we are out with friends. 

Burnout?  I dunno.  Is he really "forgetting" to check?  It is his routine, has been for years.  I think he is he is a bit sick and tired of the never-ending-ness of it all.  I know I am.  Frankly, I am looking forward someone else supervising his "pancreating ways"  when he starts school tomorrow.  And, yes, I feel some guilt over those feelings.  Joe won't get a break.  Ever.

Joe's pancreating driving me nuts in my day-in-the-life.

Thursday, July 26, 2012

Tough Choice

I know better.  I know better.  I know better.  When pray-tell am I going to do better?   I know that he goes high after the movies.  Yes, I crank-up his basal by 100% for an hour and a half while he sits.  And... yes, I even pre-bolus him for an hour of basal while cranking-up the basal.  And... of course I RAGE BOLUS for the "kiddie combo" of popcorn and fun-sized Skittles.  Post-movie, Joe's blood sugar was a titch over 300.  He corrected, under my instruction ... even though part of me knew he would crash, but the 300 got under my skin.  I could not let it be.  After we arrived home, to add insult to injury (aka "activity to correction") we then proceeded to finish out our afternoon by heading over to our local pool and park via bike.  Joe experienced a significant low an hour later.  By "significant", I mean not only was his number low (in the 50s), but his legs became weak and he was out of sorts emotionally.  

Significant lows happen.  Unfortunately, they are not always "convenient" with the pressures of life, parenting, and schedules. 


"You are all that is keeping me going."  His voice was strained.  His pedaling slow.

"I would normally be home by now."  His verbage and demeanor cracking.

"This low has me pedaling at 1 mile per hour." Briefly I saw the humor of his Y chromosomal need to quantify the shitty hand that this low dealt him.

Then he cracked as his bike was listing, tears in his voice "I hate diabetes."

"I know buddy.  Do you need more sugar?"

"Yeah...let's try that."

We stopped, straddling our bikes.  Two more Starbursts were unwrapped and mother-birded.  "Can you keep going Joe?  We need to keep going.  Joe we gotta keep going ... we are going to be late to pick-up Bridge." 

At this moment I was hating diabetes too.  Once again, it placed me in a position of feeling like an inadequate parent.  On the one hand, I was left pushing my son to keep biking to get home...to get to our car .... so that we could pick-up Bridget from camp.  I know that biking or any physical exertion on his part was detrimental to him and his recovering blood sugar, yet there I was coaxing him to pedal-on in order to make some sort of progress. On the other hand, it, diabetes, was now going to take away a timely showing for Bridget at her first day of camp.

After the Starburst pit stop, the bike riding was not going well.  Joe was too weak to make it up the final two hills to our home.  His number was recovering, but physically he had not "caught up".  So, I had a tough choice to make.  Many of you may question my judgement.  Not sure if it was the right thing.  I ditched him.  I ditched him in a lawn about two to three blocks from our house.  I left him with his bike and Woodchuck (his diabetes supply bag).  "Mom is going to speed home and get the car Joe.  If you feel you are dropping, take more sugar.  I'll be right back."  Leery of my decision and still a bit pissed at the disease, I parted with Joe.

I hauled ass home only to realize that my keys were in Woodchuck (ya know...the "Woodchuck" I left a few blocks back with Joe).  Expletives were flying off the tip of my parched tongue like rapid machine gun fire as I hauled booty back to Joe and Woodchuck.  Upon approaching Joe, I was relieved to see him sitting upright and color returning to his face.  I snatched the keys from Woodchuck and then hauled booty back home and hopped into the car to haul booty back to Joe and then onto haul booty to pick-up Bridget from her first day of camp.

I was 7 minutes late.

A tough choice in our day-in-the-life of managing type 1 diabetes. 

Tuesday, June 26, 2012

"Thank You" ... It Is Not Quite Enough.

A little over a week ago...On Joe's last day of Third Grade and his last day at Hiawatha Elementary School...

Written and folded into a paper airplane by Joe's School Nurse:

A 4 YEAR JOURNEY...

NEVER TO BE FORGOTTEN.

A SPECIAL STUDENT WHO TOUCHED MY LIFE!

A SPECIAL FAMILY WHO MOVED ME!

SOME OF THE LESSONS LEARNED:  HOW TO BE BRAVE, SMARTER, PATIENT, KIND, HARD WORKING, FLEXIBLE, SAFE, A BETTER PERSON, A BETTER FRIEND, GOOD WITH NUMBERS, A BETTER READER, A BETTER NURSE AND A BETTER HUMAN BEING IN HAVING MY LIFE TOUCHED BY YOU JOE MAHER AND FAMILY!

THE LIST COULD GO ON...BUT I WANT THE PLANE TO FLY AND I WANT YOU TO FLY JOE, FLY ON IN LIFE AND COME BACK AND LET ME KNOW WHAT YOU BECOME SOMEDAY!


Kindergarten Joe

I would search the building for her.  I would.  My eyes would have to meet hers before I would leave him there; before I would leave Joe for his full days of Kindergarten.  It was an unspoken thing.  It was a security thing.  It was a "I need to know my kid is gonna make it through the day alive" thing.  The School Nurse was Joe's life-line, which in turn made her mine.

As many of you know, Joe was diagnosed with Type 1 when he was three years old.  I had attended preschool with him for weeks, while the staff learned how to check blood sugars and to treat lows.  I was present for daily snack times to dose Joe with Insulin, as the school ... and I ... were not ready for that responsibility shift.  I had been Joe's pancreatic~shadow for two years prior to his Kindergarten year.  I was not comfortable leaving him with many people, not even Dave.  In hindsight, yes, I realize that this was not a "healthy choice" for myself, for Joe, or for my family.  But, it was how it went down.

After reading the above, you can only begin to imagine the anxiety I experienced when sending Joe "away" for full day Kindergarten.  To experience 7 hours away from Joe, from the numbers, from the "micromanaging", from the tweaking was a bit of a shock.  Frankly, I cried for the first few days of school.  Not sure if the tears were out of happiness, sadness, or fear ... or what.  Perhaps they, the tears, were out of relief.  It was a relief to have a break.  It was a relief to not clock watch.  It was a relief to not carb count.  It was a relief to not bolus, to not worry about activity, to not throw test strips away, to not tote sugar sources.  More importantly ... most importantly ... obviously ... It was a relief to know that he was in safe, capable, and in the most caring of hands.

As Joe matured and traversed the First, Second, and Third Grades he was supported in his growing independence in regards to his diabetes care in the school.  I did not hover.  I did not need to see the School Nurse before I was able to leave Joe at school.  Eventually, I would just drop Joe and "Woodchuck" off at the curb.  The School Nurse and the staff knew Joe; they knew diabetes.  They cared for and nurtured Joe as a growing boy, student, and pancreas.

The School Nurse was integral in facilitating Joe's independence in a safe manner.  She got it.  She shifted and followed Joe's lead.  For Joe to "fly" he needs to learn to manage diabetes safely and independently.  He is well on his way thanks to you Mrs. C. 

A day-in-the-life of "Thank You" just not seeming like quite enough.

Tuesday, June 19, 2012

Socially Acceptable?

I think in the past I...and not Joe ... have done the blood sugar checking in potentially bio-hazard-y situations. 


Yesterday...

The checker~outer~bagger~guy was eye-ing Joe.  Joe had found me in checkout lane #8.  "Mom...I feeeEEEL LOw." I know that climbing and descending octave voice.  It is Joe's low voice.  I could not reach Joe, as I was pinned-in my lane by the shopping cart.  I tossed Woodchuck (Joe's diabetes supply bag) over to checkout lane #7 and instructed Joe to do a check.

Joe had just spent the last four hours swimming and biking on a pump track.  Swimming rarely causes Joe blood sugar issues.  He keeps his Ping on.  No decrease in basal...bolus as normal for food...minimal free carbs are needed to keep him euglycemic.  Pump track riding may be a different story though, as we battled many lows yesterday afternoon, evening, and on through the night and into this morning.

Enough about numbers, let's get back to the checker~outer~bagger~guy and the grocery store blood sugar check...and the blood...oh yeah, the blood....

So, checkout lane #7 was vacant.  Joe walked up to the "conveyor part" of the lane and started unzipping Woodchuck.  Now ... I don't give the whole blood sugar procedure a lot of thought.  You know, the blood borne pathogen business.  I don't really think about the "biohazardness" of our day-in-the-life.  With Joe's Woodchuck splayed out all over lane #7, I started dreading a "gusher" (yes, at times Joe's finger can spew like a volcano..now no one is gonna come over for dinner).  The thought of blood splatter on the conveyor belt and the sequella of that splatter ... blood droplets smeared all over not only the black belt but being smeared all over the hard~to~reach~to~sanitize conveyor parts underneath the checkout counter ... and the possible tainting of fresh produce ... the thought of the blood on the belt and the look of the checker~outer~bagger~guy taking in Joe's predicament had me take pause and instruct Joe to move his procedure to a less traffic-ed spot.  He did it by the checkout lane #7 bagging station.  Not sure if that was much better.

His number?  It was 59.

A day-in-the-life of trying to manage diabetes in the checkout line in a "socially acceptable" manner.

Monday, June 18, 2012

"Same-Same" At 70mph...

I think this was the first wedding ceremony that I actually enjoyed a beverage, an alcoholic one at that, while spectating.  Tara and I clinked bottles, as we waited for Chloe, Bridget, and Joe to escort Mom down the aisle.  My mom got married at my sister's lake house this weekend.  Congrats Mom!


Yesterday....

As we were driving home from Connecticut...where the ceremony took place....

I was zoning out in the front passenger seat, as Dave drove.  Then I saw it.  A Connecticut license plate had the letters "D" "I" "B" "E" "T" "E" "S".  No, that could not be.  I wondered if the "DIBETES" was short for "DIABETES".  My answer quickly flashed by before I had time to verbalize all that had been going down on my side of the car with the license plate and my curiosity.  My answer was in the form of an arm site...a CGM?.  I caught a glimpse of it as Dave whizzed by the young adult female.

"Dave!!!  I gotta get by that car again." I think I was kinda excited.

"She has a license plate that says D-I-B-E-T-E-S...and she has diabetes!!!"

"She has an arm site of sorts."

" I think it was a Dexcom."

I desperately wanted to share some sort of "uniting" moment with this woman.  So, I talked Dave into slowing up and positioning the car so that I may "interact" with her on some level while we careen down the highway.  My idea was to wave some sort of diabetes paraphernalia out the window.  Bridget was horrified.  Joe did not even know what was going down as he was head-phoned and engrossed in The Princess Bride.

Dave maneuvered us in and out of traffic.  He slowed.  He weaved.  He got us over to the right lane.  She, "DIBETES License Plate Lady", was in the middle lane.  She passed us.  Dave then crossed the middle lane and got us into position in the left lane.  He stepped on it.  I rolled down my window.  I had Joe's Dexcom receiver in my hand.  I was waving it out the window ... kinda fist pumping it in the air ... at "DIBETES License Plate Lady".  I think I was screaming "WOHOOOOOOOOOO!!!" or something.  She and the passenger, another young adult female, took notice of me and responded in like with multiple fist pumps, while "Wohoooooooo-ing".  Huge grins were gracing our faces.

Upon closer inspection, her arm site was a pump site.  It looked "Medtronic-y".

A day-in-the-life of wanting to express "same-same" at 70 mph.

Saturday, June 9, 2012

Tuff Mutha


The RULE OF 15: If your blood glucose is 70 mg/dL (3.9mmol/L) or below, use the rule of 15 to treat hypoglycemia.  Treat with 15 grams of rapid-acting carbohydrate.  Check blood glucose in 15 minutes.  If your blood glucose is still less than 70mg/dL, eat another 15 grams of rapid-acting carbohydrate and re-check blood glucose in 15 minutes. Repeat as needed until blood glucose is in goal range.

We all know about this rule.  Who breaks it? 


Memorial Day Parade 2012...The Essence Of "Joe" (Thank You Nikki)

A couple of days ago...

A pause...then the heavy Joe breathing that I know as heavy Joe breathing because it seems he is always breathing heavily when he calls me from school.

"Mom?"

"Yeah Joe."

"I am 56.  Can I please just eat my snack with my friends?"

"Joe, you need to wait for the 56 to come up."

(tears and a quivery voice were then heard) "Please mom.  You have let me eat when I am like 68"

"56 is too low Joe.  Wait for your number to come up."

"Please mom." (tears)

"Joe, put Mrs. School Nurse on the phone." (firm voice)

"Please mom." (tears)

"Joe, put Mrs. School Nurse on the phone." (firm voice)

"Please mom." (tears)

"Joe, put Mrs. School Nurse on the phone...now." (extra-firm voice)

I explained that the 50s was just too low to go ahead and let Joe eat.  I wanted Joe to wait 'til the fast acting sugar brought his number back to a safe range (greater than 70) before he ate his snack.  He ended up missing snack time with his peers.  He waited out his low in the Health Office, with the nurse...he ate 15 minutes or so after his buddies.  Sucks.  But it is life with "D".  Rarely is a complaint voiced by Joe.

I am not sure if Joe's tears were out of frustration or due to the low.  Most likely they were a product of both.  When parenting a child with a chronic condition, restrictions and limitations are part of our day-in and out.  Sure they are a part of everyday parenting of any child to keep  them safe and to raise them to be a somewhat kind, caring, respectful human being.  However, in our situation...the limitations and restrictions are present on yet another level.  On a few levels actually...for safety~sake...and for guiding their self-management for the one day when they will be independent with this big time, high maintenance, laborious condition. 

I have let Joe go ahead an eat when he has been in the mid to high 60s.  After fast acting sugar has been consumed, he has sat down to eat.  The bolus in this situation would be given after his meal is consumed..and/or an extended bolus may be executed.  The 50s, while he is at school...and not under my watchful eye, was too low for me to acquiesce.

What is your cut-off low number?  How do you manage it...delayed bolus...combo bolus...extended bolus...free carbs?

A day-in-the-life of being a tuff mutha.

Thursday, May 31, 2012

Who Has DONE IT On Stilts?


Joe did.  Yesterday, after school, I saw my kid strutting his stuff on stilts.  Routinely we check a blood sugar upon dismissal.  Yesterday...we did it stilt~style.  Joe's blood sugar was 133.


Why the heck was he on stilts you may or may not be wondering. He and his friend are performing a stilt routine in the Talent Show today... yesterday was the dress rehearsal.  And yes, I realize the stilts look a bit "Forrest Gump-ish".

Checking blood sugars in our day-in-the-life.  A cool, bloggable, moment.

Thursday, April 19, 2012

I Let The Dirt Bike Comment Go...

A couple of days ago...in the car, on our way to school...

"OK Joe, so I'll bring your LEGO Ninjago Space Ship~Thingy and Catching Fire for the Endo visit." No comments on the Catching Fire. Bridget read it. Yes, violence. Yes, it, the violence, isn't as "depersonalized" as Star Wars with it's Lightsabers, or as Harry Potter with it's "STUPIFY", etc. I know ... kids killing kids with spears, arrows, and hand-to-hand combat that is organized and sensationalized by the government to instill fear in the "governed" seems to be a bit inappropriate for an eight (almost nine) year old. After typing that I realize that... indeed ... yes, I suck.

Back to the story at hand...

"Oh... and... Joe, please try not to laugh when the doctor examines you. He is a diabetes expert and he needs to look you over to see how your body is doing with diabetes."

In the rear view mirror, I see Joe's eyes widen. "You mean he is the best at diabetes in the world."

"Ahh. No. Well, I don't know exactly Joe. Let's just say he is the best at diabetes in children in our region. How's that?"

"mmmm" Joe seemed satisfied with my shifty response.

I dropped Joe off at school. I had a couple of hours before I needed to return to grab him for the Endo appointment. Now, usually I am not too thrilled to be going to Endocrine appointments. It seems that they coincide with a bad batch of blood sugar trends. I have felt that I was going in to "face the music". I have had "defensive manifestos" prepared for my actions with the pump, with boosting, with letting the settings ride. This time, however, I felt confident. Joe's numbers have been steady. Diabetes has been in the periphery of our day-in-the-life. Joe's last A1C was 7.3%; his highest, since pumping. I was hoping for a 6.6 to a 6.9%.

With Lego Ninjago thingy and Catching Fire in hand, I collected Joe from his school and off to Endo we went. While entering the parking garage, I saw a stretcher with a covered body being loaded into a hearse. I scope out Joe's focus. He saw it too; the body. He thought it was being loaded onto an "ambulance" and he did not understand why the persons head was "under a maroon colored sheet". I explained that the person was dead and that the body was being taken for burial. Joe chimed in "so the doctors did everything they could to save that person and they just couldn't". So... do I just go with it? Or, do I let him know that "life" isn't always the "best outcome" for the patient. I let him know ... the truth. This upset him a bit. The part that a person would choose death over treatment options. He wanted to know that I would always choose to treat anything that comes my way in the "medical condition" department. I reassured him that I would at this stage of my life... that I would do everything possible to ensure that I would be here for he and Bridget. A simple "good", was his response.

After the "body" sighting and deep discussion we headed into our appointment.

The Endo visit was uneventful. Joe's A1C was 6.9%, with a fairly tight standard deviation.

We checked out. On the elevator to the parking garage, an elderly man in a wheel chair joined Joe and I for the ride. I looked down at the gentleman's feet. He was missing one. His prosthetic was visible. I notice Joe's eyes were taking it in (face palm... I don't think I can handle another deep convo with this kid today). We departed from the elevator; from the one-legged man. Joe said nothing for a few moments. Then... "I think he lost his foot racing dirt bikes Ma."

A day-in-the-life of trying to parent a kid through doctors visits at the hospital.

Saturday, April 7, 2012

Wanted A Bit More..

I don't know if the 'missing instruction', or being 'last to lunch', or being 'late to Math' are magnified in his 8 year old mind. Perhaps they are. What I do know. What I can tell you. And. What many of you know is that it isn't the pricks, the pokes, the lows, and the highs that get you down. It is the psycho-social ramifications that can wear on you a bit. The "waiting", the "missing", the "stopping" for Diabetes Care is the part of Type 1 that Joe could definitely do without.

Yesterday...

Mid-spread of the peanut butter on Joe's sandwich...

I stopped dead in my tracks...and did an about face to Joe.

I had been busily preparing breakfasts, lunches, Joe's Daily Diabetes Log, and micromanaging my trolls (my children, I can call them that) hygienic needs prior to our departure for school. Amidst the scuttlebutt, I was discussing next year with Joe. I was lamenting our "good-bye" to his current School Nurse. I was planning out our "care-plan" for next year. I said something like "...and next year we will run it the same...all your care in the classroom...except for lunch."

Shifting his weight, Joe seemed to struggle with the information he was going to share with me.

"Ahhhhhhh...Mom, none of my care is being done in my classroom."

"What? ... For how long Joe?"

"For months."

*a disheartened ----*

As many of you know, I had worked diligently at the beginning of the school year to get more of Joe's care transitioned to the classroom. We had a plan in place. I thought it was being followed. I was under the impression Joe was not missing as much classroom time and I was under the impression that his days seemed more "normal" and "acceptable" to him. In fostering this plan, I had really backed off on my presence in the school. I drop off The Woodchuck to his classroom daily, but that is it. I had not met with the School regarding Joe's care in quite awhile. Things seemed to be going smoothly; I had become complacent.

Perhaps this issue doesn't seem like a big deal to many of you. Perhaps it seems trivial. It's not. It takes knowing the day-in-and-out of diabetes management intimately to truly "get it". During the school day, Joe requires a minimum of three blood sugar checks a day. On a Physical Education day, he requires four blood sugar checks. If he is experiencing lows, he could need many more checks. Each of these checks requires him to go to the Health Office. Many of these checks requires some sort of action: insulin dosing or sugar administration. If Joe is low he must stay in the Health Office for 15 minutes until his blood sugar is re-checked to ensure it is in a safe range. The long and the short of the previously written is that he misses a ton of classroom time.

Let's look at the psycho-social-emotional aspect of this. He misses instruction. He has been made fun of by his peers for not knowing what to do on assignments due to his missing key directions. He misses socializing during snack time. He may arrive to the lunch room late and have to socially navigate his seating arrangement after his peers have settled into their spots. This has been his arrangement for Kindergarten, for First Grade, for Second Grade, and now...apparently...for Third Grade too.

I discussed my concerns with the Principal and the School Nurse. I stated we can continue with the current arrangement as there is only 9 weeks of school left. I did impart this message upon them: I explained that Joe is more than "diabetes", much more. He is a bright, eager student. I would hate for his school day routine to be based solely on his health needs. He was ready for more independence. I wanted to nurture this. I wanted to foster it. I wanted to facilitate a learning environment that wasn't dictated by his diabetes care. My hope is that in the future the psycho-social-emotional aspect of a student's care is considered. Joe is oh,oh so much more than "diabetes".

Joe is an intelligent, independent child. He has an excellent grasp of his diabetes care and I was hoping to foster his growth and development by stream-lining his care in the school this year. I am not unhappy with the school. I feel that Joe is safe there. I feel he is cared for: the blood sugars are checked, the boluses for snack and lunch and highs are given, the lows are treated. I guess I was just hoping for a bit more.

Joe's day-in-the-life managing Type 1 in School.

Wednesday, March 14, 2012

Close Call

He has fallen off of playground equipment; fairly big falls over the years. A fall off the top of monkey bars when he was 4 years old with a blood sugar of 43 resulted in a scraped up contused, screaming Joe and a shaken D' Mama. I was a novice then; a novice "pancrent" dealing with a 5 year old Bridget, a 4 year old friend of Joe's, and low...injured...less than tolerant Joe. He was also low during "The Concussion Incident". I don't know if that low made him more prone to falling off the slide or not. I cannot help but wonder though. It must always be taken into consideration during our day-in-the-life. Always.


A few days ago while sledding...

Joe and his pals had found a little stream at the base of the sled hill. The ice was thawing. The combination of mud, ice, and water was inviting the boys to build dams with ice chunks, throw ice chunks and to explore the path of the water and the ice chunks. The stream was directed under a two-laned country road via a large drainage pipe. It was perhaps a couple of feet in diameter.

You can see where this is going...

Per my usual, I am paying some attention to the boys antics but am not overly involved in micro-managing their play.

During my neglect, I hear Joe's peers calling his name in an "echo-y" fashion. I look over to see them all hovered around the drainage pipe. Of course my kid...my Joe ... my kid, Joe, who has diabetes is on his hands and knees crawling through this icy, wet, muddy drainage pipe.

Now, most moms may be a bit hacked by the wetness and mud that they are gonna have to contend with after such an expedition. Some moms may be cool with such and adventure. Me? Well, I was cool with Joe exploring the pipe. But. You want to know what was going through my head? The first thing that popped up was "please Dear Lord do not let him realize that he is low in the middle of the crawl through the pipe." You know those lows that his legs and body stop "working". I was imagining pulling "The Wounded Soldier" through the confines of the space to access Joe's oral cavity with glucose.

He made it out without incident. Muddy and wet, he ran over to to me. He felt low. He was 31. It was a bad one.

Thankful for a near miss in our day-in-the-life with diabetes.

Saturday, March 10, 2012

The Waiting Game

For Non-"D" readers LOW BLOOD SUGAR effects can range from mild dysphoria to more serious issues such as seizures, unconsciousness, and (rarely) permanent brain damage or death.

This photo says it all...


The pallor, the grim expression, the dark circles creeping up under his eyes.

**********

His focus wouldn't settle. It was like he couldn't find a place or an activity to make him feel "OK" or "right" in his body. This is what I observed of Joe at the New York Hall Of Science in Queens, NY last weekend when we were visiting my sister.

I suspected a low. Right as I was suggesting a blood sugar check, he stopped abruptly, sat, and said in a decrescendo voice "I feeeel low." He was ... a 50 graced the glucometer screen. Four Starbursts were dispensed to Joe, one to Bridget, and one to Cousin Chloe. We all copped a squat next to Joe right in the middle of the exhibition floor. We then waited. We waited with Joe. We waited for his legs to work. We waited for his mind to clear. We waited for him to feel well enough to move on.

At times I find it difficult to explain life with diabetes. Sure, it is relatively easy to talk about insulin, pumping, counting carbohydrates, and "boosting" for activity. But there is oh so much more to it. The waiting. The waiting is something I don't talk much about. We do it. Quite often, I suppose. Joe has some lows that will stop him dead in his tracks. When I see him splayed on the ground, on the floor, on the ice and hear the words "my legs won't work". I know. I know it is a bad one and we will be waiting a good 10 minutes or so before he will feel well enough to continue with his day. Sometimes there will be crying. Sometimes he needs to curl up in my lap. Intense hunger accompanies these lows as his brain waits for the glucose to hit his blood stream and cross the the blood brain barrier.  Eyes stinging... ****ing diabetes.



A day-in-the-life of loving and supporting a child with type 1 diabetes.

Thursday, March 1, 2012

In"D"pendence

Essentially I send my kid out into the world daily hooked up to a hormone that can kill him. Yep. It is true. I don't think many people "get" that. Managing type 1 diabetes is tenuous. Balancing activity, carbohydrates, and the hormone insulin is the nuts and bolts of the matter. It is difficult at best. The balance of blood sugar numbers is not easily achieved in an active, growing child. Perhaps just as challenging is balancing "safety" while my type 1 child, Joe matures.



It was a first, the above text. Joe sent it to me from my mother-in-law's phone. She was watching him while I ran out to the store.

Times are changing.

This year the calls from school are from him, not from the School Nurse.

Each and every call to my cell phone is initiated with a whispery-question-y, subdued Joe voice "Ah... ... mom?" (who does he think is gonna answer?) "I am 72, double down ... should I do a combo bolus heading into lunch?" "I am 45, I was 42 before that ... I think we should turn down the basal..." "MOM!!!" (frustrated) "you don't understand... it is a Substitute Nurse ... she cannot help me with the Beef Taco carb count!"

Times are changing.

He asks to run across the street to play with friends. <*GASP*> Inside their homes even. He checks his blood sugar first. He lets me know where he is at "number-wise". He takes sugar according to his IOB and Dexter arrows. He consults with me, sure. I usually respond to any questions with "what do you think you should do Joe?" Many times he is spot-on. He is excellent at considering possible activity. He is getting better at recognizing the impact of IOB. Once in awhile, I will mention a combo bolus or a temp basal as a suggested action as well. He knows the implications of a bad lows and will boost, boost, boost to avoid them. He does not seem too concerned about highs and does not report them to me. He thinks he is "good-to-go" with numbers in the 200's, even in the 300's, and will head across the street care-free without a word to me.

As he becomes more independent, I notice that we tend to run him a bit higher; we run him a bit higher for "safety-sake". Times are changing. And. With the changing of times, Joe's last A1C bumped up a bit. And. With the changing of times, there are more people involved in Joe's management ... namely, Joe. As with everything else that requires balancing in diabetes care, the carbs, the activity, the insulin; the transference of care, the evolving independence demands balance and careful attention too. During Joe's last Endocrinology appointment, his doctor cautioned me about Joe's independence level with his diabetes care. A "let the reins out gradually ... and ever so slowly" approach was encouraged. Makes sense. Wish me luck.

A day-in-the-life of raising a child with type 1 diabetes.

Saturday, February 25, 2012

Confidence

The following happened yesterday afternoon, after school. The interaction took place between Joe and one of his oldest and dearest friends. Children, and adults for that matter, can say things out of anger and frustration.


The snow was falling, heavy and wet. Joe was playing with a group of friends in the distance. I approached with Woodchuck. After school lows have been a frequent companion lately. A quick check confirmed it. 68. A juice was spiked and dispensed. Joe knocked it back.

I then gently probed him about a disagreement that he had just had with his friend.

"He was being mean to me mom. I told him that if he kept acting like that he would not have any friends. THEN. He said to me that if I still had diabetes when I was an adult I would not have any friends."

I wasn't really interested in the "he said-he said" business of the incident. There was only one thing I wanted to be sure of...

Before I walked off to leave him with his pals, I casually asked ... not wanting to make a big deal of the situation ... "Joe, you know that is not true?... right? ... diabetes will not make people not like you."

In an authentic, upbeat voice, Joe said "Of course not mom. Diabetes makes me even cooler. I'll always have friends."

I walked away. My heart was light.

A day-in-the-life of confidence despite diabetes, perhaps ... dare I say it? ... enhanced by it.