The Mirror

As we walked side-by-side through the parking garage into the hospital yesterday, his 6' frame towering over me...he said 'I don't really even think about having diabetes except on Endo days and sometimes when I have to check a number.'

'Really?'

'Yeah'

He then went onto say something that briefly caused my eyes to sting.  He said, 'it's weird, but when I look in the mirror...I don't see my POD anymore.  I don't see the CGM.  I just see me.' 

When Joe thinks of himself, he says diabetes doesn't even enter his definition of who he is.

The Endo appointment went well.  Joe continues to do the majority of his care.  He is an active high school freshman and manages to juggle school, being an athlete, and managing diabetes successfully.  His A1C was 7.  A fine number considering his growth and his independence.

He turns 15 at the end of April.  We discussed his drivers permit with his endocrinologist.  You see, driving with diabetes adds another element of risk to just the act of driving.  People with t1d need Medical Clearance Paperwork, in order to get their driver's permit or license.  When Joe starts to drive, he should check a blood glucose prior to driving and every hour if he is driving for more than an hour's time.  He should not drive unless his blood glucose is 90mg/dL, or higher.  Driving low is more dangerous than driving inebriated.

I'm not sure how I am doing with all of this.  Actually, that's a lie.  I do know how I've been doing.  I've been fairly anxious.  High school has been more of an adjustment for me...than for him; I think.  I have had to back off as a hands-on pancreas and trust that I have taught him well.  I have.  Can I just say, at this age, sometimes having that damn Dexcom is a blessing and a curse all in one.  Watching his blood sugar remotely can cause my mascara-fringed eyeballs to bulge outta their orbits when his number is tanking to the 40's, while he is at school or at a hockey practice.  There isn't a darn thing I can do to help him.  I watch.  I wait.  I worry, then I hope and I trust things will be OK.

A day-in-the-life update.

They Don't Train You About This Stuff

#theydonottrainyouforthisatdiagnosis
#nightchecksdothematyourownrisk

There was no time for a thought to flicker in my thought feed, as I dropped to the floor like a 140 pound sack of potatoes.

Last week...

It was 2-ish a.m.  I had just checked Joe's blood sugar and turned off his bedside lamp and was traversing my way around and through what looked like laundry fields, hills, and mountains.  The laundry - some piles clean, some dirty, and some were possibly unknown (clean or dirty or both) is a typical scene in Joe's room these days.  He does his own laundry.  I think he has a system?

Back to me...

I was maneuvering myself through the laundry landscape and came upon a crumpled up large blanket.  I decided to walk on the blanket pile.  The pile was large; it looked soft; it looked safe.  One step onto the blanket and my right toes hooked into a metal laundry basket catapulting it up on end to impact my right shin, tripping me.   The laundry basket then falls to the ground in time for the top metal edge to absorb the impact of my anterior thigh.

Do not underestimate the impact of our day-in-the-life.

Confidence in the Desired Outcome

The title...I think that means "hope".

Where has the time gone?  He is starting high school in the fall.  He's been living with, living well with t1d for like 11 years now.  I've been typing away on this blog on and off over the course of  7 years.

Graduation from Middle School

Woodchuck (I think normal people call it a "diabetes bag") has evolved from a camouflage-murse to a gray kinda-like messenger bag to a  royal blue Nike string-strapped backpack.  This new bag, well...it's not as convenient for me to assess supply needs, as everything is just jumbled up on the bottom.  Joe prefers it though.  It looks like what many of his friends carry.

NIKE Woodchuck

He wears a medical ID now; dog tags.  It's a must as he traverses the community without me present. I expressed the importance of having some sort of identification on him...you know, in case.  It's hard to phrase things like you might need help if you go so low that you can't talk...a.k.a. you are unconscious or maybe having a seizure...So I just kinda mumble through those moments.  He knows.  He knows he may need help at some point.  The ID is worn daily; no reminders needed.

Joe.  Joe seems pretty typical to me.  He is checking his blood sugar regularly.  He boluses for snacks and meals.  He doesn't appear uncomfortable with his diabetes-ness.  His CGM and POD are on his arms.  They are visible often.  He performs his care in front of his peers.  This is where I think an early diagnosis maybe has helped us; helped Joe.  He knows no different.  Having "something" has been his norm.

Me.  I go from this elated feeling of 'WOW...he's a teenager and he's still doing pretty well with the daily grind of managing t1d.'  My life has gone from micro-managing blood glucose levels, carb counting, bolusing, pump-site inserting, CGM inserting, blood sugar boosting 24/7 x 365.  Now, I assist with CGM insertions only.  Joe does the rest.  Occasionally, I check in on his self care with a "what's your number?" or a "did you bolus?".  I am pleasantly surprised by his response to a "how many carbs are you counting that as?" and his reply is within 5 grams of my calculation.  There is a huge relief in all of this.  He can participate in sports, solo, with minor d'-sasters here and there; these are learning experiences.  Each season he becomes better and better at handling the rigors of t1d and activity.  I say all of these things and then it sneaks in; the fear.  Fear of nights, of driving, of college.  Eleven years ago, when he was 3, I couldn't imagine us here.  He is thriving.  This is what I hold onto as I look forward to the next several years.

A day-in-the-life of hope...confidence that Joe will grow up happy and healthy and live a long life.

The Exam Table

There was a time I had to lift him up to the exam table. 

His A1C was 7.1%.  

An 8:15 a.m. appointment, during his first week of summer vacation, was not a cool start to his day-in-the-life. 😀

...On A Stick

As he stumbled to the pantry  for a juice box, an  'I feel like a butt cheek on a stick' was heard.

'What's your number?'

'38'

A teenage boy's description of a low in the day-in-the-life.

Letting Go ... A Bit More

Sometimes I feel like this d' mom business is like being drug down a path, not of my choosing - mind you, by my 4th toenail; I claw and scratch and dig at the earth in resistance.  I worry.  Many times I feel alone with that worry, as it can be belittled by those who don't truly understand the nuances of t1d.

Yesterday...

Maybe it's because he hasn't really ran this far before.

Maybe it's because it's a crowded and chaotic event.

Maybe it's because we really have no experience with basal reduction and carb boosting with distance running.

Maybe it's the logistics of him running 5.3 miles out and then needing to take a shuttle, on his own, to get back to the finish line.  

Maybe it's because I'm running the whole marathon and I won't be able to get to him easily if he needs help.

My friend offered Joe a leg in the Vermont City Marathon.  It is taking place this Sunday.  I am registered to run the marathon and Bridget is going to do a half marathon.  It's a big event for Burlington, Vermont.  The news has been broadcasting updates on the weather and marathon details for over a week now.  Downtown Burlington is congested with thousands and thousands of people: runners, spectators, and volunteers. 

When my friend asked Joe about the leg, I was sitting in between her and Joe.  Joe perked up and confirmed he would like to run the leg.  I kinda did a grumbly-mumbly under my breath 'uhm...we aren't really prepared for him to run a leg.'

My friend: 'Oh don't worry my kids haven't done that distance either.'

Me: 'No...d...ddiabetes."

I felt bad for even saying that.  I don't think Joe heard me.  Yes, I have always tried to show him he can do anything despite having diabetes.  He has....but...I've always been there.  I've been there with sugar sources, back-up supplies, and a brain that can make split decisions about bolusing, boosting, and adjusting pump settings. This will be a 5 mile jog without his parents close by, but surrounded by thousands of people...and aid stations...and even medical stations...and there is even a race tracking app.  I guess it's as good of an event as any to let go a bit more.

Last night..

'OK..you can do it, but you need to have sugar with you, your phone with you...and you have to wear your medical ID.'

'I will Mom.'

I'm a Checker, but not a Mice Checker...Yo

A few days ago..

 

Pre-post note:  We are currently besieged by mice.  Traps are set in the basement and the main level of our home. 

The words "GI BUG" scare the BeJeezus outta even the most resilient, calm, cool, and collected of d' rents.  Joe currently has one.  I was up at 3 am ... checking a blood glucose, ketones, and then bolusing insulin.

As Dave woke, I updated him on the night care provided.

Me:  "I checked his BG...high 200s, ketones were OK...I've bolused twice over the last three hours."

Him:  "What about the mice?"

Me:  "What?"

A sick Joe with Oscar.  Miniature Schnauzers are supposed to be mousers! 

Him:  "Did you check the mice?" (referring to our traps)

Me:  "I'm the ketone checker; you're the mice checker."

Checking in on the day-in-the-life, but not on the mice. 😱

Maturi-D'

Over the years, I've tried to teach him the proper way to do things.  A healthy diet was discussed and modeled.  But... he did his own thing, choosing to eat from the "Brown and Beige Club" for years - chips, bread, mac and cheese, chips, crackers.  Now, lean meats and vegetables are consumed regularly.  Blood glucose checks were encouraged multiple times daily.  This has been his routine for the most part, but with some nagging.  Rotating pump sites, took years; like 9 to be exact.

The lumps and bumps are persistent in one arm; his right.  Until this last year, he used the backs of his arms exclusively for pump sites and CGM sites.  He was reluctant to try a new area.  Reluctant should be translated as "refused".  

Several months ago, Joe first found these lumps.  I explained it was most likely due to lack of site rotation - lipohypertrophy. I encouraged rotation, but didn't say much more.  A few weeks later...

 

A little more maturity in the day-in-the-life.

Growin' Up D'

Just like when you questioned their ability to one day pee and poo on the potty, to feed themselves using a utensil, or to tie a shoelace, a parent of a child with t1d questions the ability of their child to perform the tasks involved in managing t1d, independently.  The tasks are one thing.  They are fairly straight forward.  First do "this", then "this", and then "this".  This approach can be used to teach checking a blood glucose, carb counting, and delivering a bolus of insulin.  There is a whole other level to managing t1d; the critical thinking aspect.  If "this", then "this", but if "this", then think of "this" and then try "this", but do "this" if "this" is happening.  This is much more difficult and challenging to impart.

About a week ago...

In an early morning hour, I entered the kitchen.  The blood ketone monitor and a scrumpled strip wrapper was laying on the island.  When Dave woke, I asked him about it.  He didn't use it.  Eventually, Joe woke.  He explained it.  He decided to check ketones before going to bed the night before.  He had been in the 300's all day (due to a cold) and was in the 400's prior to going to bed.  He thought it would be a good idea.

When he was diagnosed at three, the thought of teaching him how to check a blood glucose seemed unattainable.  It happened...when he was four.

The thought of him learning to bolus was overwhelming.  Again, it happened...when he was five.

Carb counting seemed out of the question.  It, too, occurred ... I think it was when he was 7-ish or 8-ish.

Pump site changes... yup...he started those when he was 9.

The previously mentioned tasks are just that.  They are tasks.  They are the foundation of managing t1d.  The next level is where the critical thinking skills come in: managing activity,  managing illness, managing pump settings.  We are at this point now.  He's doing it.  

Independence and it's progression in the day-in-the-life.

Feelin' "Got"

I'm not sure if isolation quite describes it.  I suppose it is a feeling of loneliness and of feeling misunderstood.  Today, I didn't feel that way.  Today,  I felt "got".  Today, my eyes teared up as I read an email from one of Joe's teachers. This email was not in response to any recent issues.  It was an unexpected email of praise for Joe. 

A portion:

'I can only imagine how challenging it is to live each day with diabetes, and the impacts it has on Joe's personal and academic life. And, as if managing the health aspects of it isn't enough in itself, he also has to learn how to advocate for himself and build new coping skills to manage it's impact on all aspects of his life. I see so much growth in these areas as well.'  

The blood sugar checking, the carb counting, and the insulin dosing are one thing.  Sure, at times, the numbers cause physical discomfort.  Yes, the management, the needles hurt.  The thing about diabetes is... the actual disease and the management are so enmeshed and interconnected throughout our days and our nights that it is impacted by just about everything;  it impacts just about everything.

Proud of Joe and how he handles his day-in-the-life.

Chromebook Confiscation

NOTE: Joe does not have a Chromebook Confiscation history.

I knew, over the years, we'd run into difficulties of not being understood.  Sure.  We all deal with that in our day-in-the-life.  I guess I didn't think I'd be saying things like this to an educator:  'Not only is his access to his school day limited by treating and waiting out lows, but to take away his Chromebook for the remainder of the school day, because of his medical condition... limits his access further.'  My voice was measured.  My temper in check. 

The blood sugar checking, the carb counting, and the insulin dosing are one thing.  Sure, at times, the numbers cause physical discomfort.  Yes, the management, the needles hurt.  The thing about diabetes is... the actual disease and the management are so enmeshed and interconnected throughout our days and our nights that it is impacted by just about everything;  also, it impacts just about everything.    

About a month ago...

Joe experienced a school day riddled with lows; blood sugars hovered from the 50's to the 70's.  He spent some time in the Health Office, but for the most part he remained in the classroom.  At one point in his day, he left his Chromebook in a hallway.  He forgot it as he was dealing with another low.  The Chromebook was confiscated for the remainder of the school day.  It was confiscated because it was unattended.

At the end of the school day, Joe visited the Chromebook Confiscator and let him know he had a medical issue that caused the infraction leading to the "confiscation".  The Chromebook Confiscator made Joe promise it would not happen again.  Joe promised.  His Chromebook was given back to him.

Within a week's time...a week where lows were plaguing his days and nights...again, the Chromebook was confiscated by the Chromebook Confiscator.  Joe went to gym class.  He placed his binder and his Chromebook on a bench in the locker room; not in his locker like the students have been instructed to do.  You see, he was nervous about going low during gym.  The shakiness of his hands make maneuvering a combination lock challenging; making access to his belongings quite difficult.  Even if a low was treated, it could take 15 to 20 minutes for him to feel better, for the shakiness to subside.  Joe did end up low.  His Chromebook, gone from the locker room bench...taken away for the rest of the school day.

So, it is at this point... at Chromebook Confiscation #2 that I stepped in.  Joe needed an advocate.  He was missing class due to managing low blood sugars AND the only mechanism to access his work electronically, at school, was being taken away from him.  It was being taken away from him because of diabetes, none-the-less.  

I spoke with the Chromebook Confiscator.  I explained Joe's medical condition.  I explained how low blood sugars can impact executive functioning.  I explained when he feels low, he needs to treat the low promptly.  The Chromebook Confiscator's solution was when Joe feels low, he could walk his Chromebook to his locker and then treat the low.  Tears, while not yet visible, could be heard in my voice.  'You aren't understanding me.  He should not have extra steps added into his routine when he feels low.  He needs to treat the low...not walk to a locker...unlock a locker...and place his Chromebook in the locker.'  

So, then the Chromebook Confiscator proposed, Joe not even have a Chromebook.  He proposed a desktop be provided for Joe in each classroom he attends: Math, Social Studies, Spanish, English, Science...I explained firmly, this was not an option.  Not only was the proposal just plain wrong, but hey...let's make Joe feel even MORE different... he has a pump, a CGM, sees the nurse multiple times daily...oh and let's add ... there's the kid who has to use the desktop computer in FIVE different classrooms.  Awesome.  Ugh. The conversation left me feeling alone, misunderstood, and questioning myself.  Am I asking too much?  Am I over-complicating things?  It also left me feeling a bit sorry for Joe and for myself.  Why can't things just be easy?  This life, of managing t1d, is difficult enough.

In the end, Joe's School Nurse and the Principal met.  A sticker was placed on Joe's Chromebook that states something like "If found, return to the Nurse."  

The Chromebook Confiscator disrupting our day-in-the-life.

'

Night Shift

At least he piled up the juice boxes neatly.

The above is the scene that greeted me, as I went in to wake him a few weeks ago.

'Joe, the juices are not for snacking on.'

'I was low in the middle of the night.'

'Three times?!'

'Yes.'

Over the years, people have asked me ... 'When will Joe start taking care of his diabetes during the night?'  These people are well intentioned.  I've been pretty adamant that Joe sleep when he can.  Diabetes keeps him up enough.  He wakes, at times, when he is poked.  He wakes, at times, when I am cramming a juice straw into his mouth.  He wakes, at times, to the beeps from a pump failure.

He is a growing teenager.   His energies should be focused on school, sports, friends, video games....and other teenager-y things.  He needs his sleep for typical growth and development.  I have slept with the CGM by my bedside, nightly, for years.  It alarms, I wake, I take care of what needs taking care of.

On the three-juice-low-night, Dave checked Joe prior to bed ... and accidentally left the CGM in Joe's room.  While I found it reassuring that the alarm woke the sleeps-like-the-dead-Joe, I will still cover the night shift.  I know, one day ... soon enough, he will need to manage that, as well.  For now, it will continue to be me.

More on on our day-in-the-life of nights.

Choke It Down

A couple of weeks ago, after a hockey game, Joe bought an apple strudel-y muffin from the rink snack bar.  He was going to eat it on our 30 minute trip home.

'My number is 223...60 grams..I'm not going to correct, but will cover the muffin.'

A 5.5 unit bolus was then cranking into his subcutaneous tissue to cover this muffin ... which he hadn't yet tasted.  I chimed in with a 'I sure hope you like it.'

'If I don't, I can either cancel the bolus and drink a juice ... or ... I'll just have to choke it down.'

A day-in-the-life of knowing you may have to 'choke in down'.

School Nurse Call

At about 3pm, the end of the school day, a few days ago...  I received a call from Joe's school nurse.  She notified me of a recent low; he treated.  He left school without re-checking his blood glucose; he didn't want to miss his ride home.

'Ok...so your telling me to call him and make sure he makes it home alive (laughter) ... and if he doesn't, I won't hold you responsible.'  Laughter closed the conversation between Joe's school nurse and I.

These are the things you say, cuz they are kinda true.  He's meandering the community, alone...sometimes low.  At times, I just gotta have blind faith that he'll be alright.  He knows what to do.  I have taught him well. And.  I also realize..there could be times, he may not be ok.  There are no guarantees with anything in this life; certainly not with t1d.

I called him.

'You ok?'

'Yeah.  I'm 120s.  I didn't want to miss my ride..'

Conversations with the school nurse while dealing with the day-in-the-life.

Life Support Fad

 A fad or trend or craze is any form of collective behavior that develops within a culture, a generation or social group and which impulse is followed enthusiastically by a group of people for a finite period of time.

More on track ...

I don't think about it much.  They are a part of him; his CGM and his pump.  When I see him, I see Joe.  The devices are a seamless blur on the backs of his arms.  They help keep him safe; alive.

I remember when he was three.  I remember when the choice was made to start him on the pump.  It was a mere three months after his diagnosis; maybe not even that long.  I struggled with that decision.  Between the meals and the snacks, between the needles and the blood, and between the monitoring and the carb counting... he looked typical.  There was nothing "visible" about the disease.  There were no reminders that he had a chronic condition.  He looked like his peers. Adding technology, adding devices changed that.

Joe has never felt the need to hide his diabetes.  He wears his pump and CGM where people may see them.  Sure he gets questions. Usually, he responds to them.  Sometimes, if he is focused on something else, he may divert the conversation elsewhere. 

Last week, while we were at the track meet where Joe learned about kidney-pancreas transplants...

I was timing with a group of parents.  Joe came over to me, to my purse, for money.  As he walked away, a parent commented on the "new fad".

Timing Lady: "What is this new fad?"

Me:  "What?"

I followed her line of vision, she was watching Joe walk away from us.

Timing Lady:  "I've seen a lot of kids wearing those, what are they?  ... on the back of his arms?"

Me:  "OH."  I then saw what she saw.  "My son is a diabetic.  That is his insulin pump and a continuous glucometer."

Timing Lady:  "I thought it was some new kind of accessory the kids were wearing on their arms."

Nah,  just life support.

The "craze" of sporting some life support in his day-in-the-life.

Not the "Cure" I Would Want for Him

Joe ran up to me, as we were leaving his track meet yesterday.  An excited  "Mom, I just met a man who said he 'used to have diabetes'".

I looked directly at Joe .."What?"

"Yea, he saw my pump and then told me."

My head did a subtle side-to-side shake.  My mind then went to the word "whack-a-doodle".  I was worried Joe had ran into someone who gave him false hope; someone who was telling him a tale about a Dr. MoonLoveJoy who cured his diabetes with a rainbow, sparkling with unicorn horn dust.

"Joe, don't believe it.  Whatever he told you isn't true.  There's not a cure for type 1."

"He said he got a kidney-pancreas transplant."

Oh.  Now.  This changed everything.  "Yes, then yes.. he is technically cured.  But ... Joe ... that isn't the way you want to get a cure ... by having your kidneys .. fail."

Joe and I talked more about transplants.  I used to take care of  kidney transplants post-op.  Typically, a pancreas transplant takes place in a person with severe t1d who is also in need of a kidney transplant. The transplanted organs require life-long use of anti-rejection medications.

"So, you don't typically see a person just receive a pancreas transplant."

"I know mom ... I wouldn't just get one for sh*#'s and gigs."

Ha!  "No Joe, you wouldn't just go get one for the heck of it.  Anti-rejection drugs can have some serious side effects."

As we drove home, we talked more about kidney failure.  It's been years now.  Years, since I've thought of this manifestation of poorly controlled t1d.

A day-in-the-life of talking organ transplants with my 13 year old.

Insulin Reigns Supreme

D' Blog Week:  Day 4:  I went with the Wildcard of getting physical.  Managing diabetes during exercise can be tricky, so share what works for you or your loved one with diabetes and maybe it can help someone else.  What do you do when you want to work out, but your blood sugar is lower or higher than you would want?  How do you cope with this?  Or how do you manage gym days at school for your child with diabetes?

I was living the dream...

Pancreating for a stubborn three year old who was as active as a rabid squirrel ingesting cases of Red Bull.  Fast forward 10 years ... I've learned a few things about t1d and activity.

Never, ever, never, ever, never, ever, never, ever, never underestimate the power of IOB (Insulin On Board).  If possible, I try to have Joe avoid a large bolus of insulin within 2 hours of a workout that will last for an hour or longer.  We don't correct highs (up to 300) and do about 1/2 correction for a BG over 300, before a workout.

Never, ever, never, ever, never, ever, never, ever, never underestimate the domination of insulin.  Joe's preferred sport is ice hockey.  During practices, we struggle with lows.  During games, we struggle with highs.  For hockey practice, I decrease Joe's basal by 40-50% starting about 1 hour prior to practice and keep it decreased for the duration of practice. He typically drinks a chocolate milk (28 grams CHO) before practice to "boost" his BG.  He drinks a Gatorade (another 20-something grams CHO) during practice.  And he typically has a "free snack" (18-30 grams of CHO) after practice.  During a game, his blood glucose will spike up to the high 200s to the 300s.  We typically do a 1/2 correction after the game and this will bring his BG back into range.

Never, ever, never, ever, never, ever, never, ever, never underestimate the potency of insulin.  Have access to plenty of fast acting sugar sources and longer acting carbohydrates during periods of activity.  Fast acting sugar is great for heading off an imminent low and then follow-up with something more complex to keep that number up.

In addition to our ice capades...

Joe also participates on his school's track team.  The practice is held at school, immediately after school is dismissed.  I added a "sliding scale" of sorts on his daily diabetes log.  I used to do something similar for PE days.

A person with t1d can be active; they, like all of us, should be active.  Yes, they need to pay attention to BG trends and what works and what doesn't work.  The above tips took years of logging and tweaking and will inevitably change over the next few years.  Also, sugar sources are a must if you are going to work out.  Have them on your person.  Have a stash of change to buy sugar.  I've had to raid vending machines after depleting our Skittles supply during hockey practices.  Just be prepared for the unexpected.  It happens.  But, it shouldn't deter you from getting out there.

A behind the scenes look at what goes into an active day-in-the-life of living with t1d.

"This Isn't Diabetes 101!" ~ Reyna Maher

D' Blog Week: Day 3:  There is an old saying that states "Sticks and stones may break my bones, but words will never hurt me."  I'm sure we've all disagreed with this statement at some point, especially when it comes to diabetes.  Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes.  For some, they don't care, others care passionately.  Where do you stand when it comes to "person with diabetes" versus "diabetic", or "checking" blood sugar versus "testing", or any of the tons of other examples?

The following doesn't happen all to often.  Well the "mascara part" does; that happens daily.

Typically, when it happens, it's in the morning as we prepare to get the kids off to school and the adults off to work. 

Typically, it's when Joe has forgotten to check a pre-breakfast blood sugar and Dave hasn't followed-up on making sure he has checked a pre-breakfast blood sugar.  Where am I?  You may be wondering and asking.  Well my eyelashes aren't gonna mascara themselves, are they?

So, typically...I come downstairs and ask about Joe's number only to find out no number has been checked.  My eye balls kinda bulge outta my skull and I then go all scholarly on Joe and Dave and say something like...

EYES BULGING OUTTA SKULL (note mascara use though)

"Guys, this isn't Diabetes 101!"

I then lecture them up and down about checking a morning blood sugar.  Ummm, they know this.  We've been doing this for 10 years.  I'm thinking we have enough Diabetes credit hours to have earned a Bachelors, and a Masters, and a Doctorate (a few times over).  

Dave and Joe laugh.  

Eventually, I will too.  

I do temper my behavior at some point in the interaction, reminding myself of the power of my words and actions.  I recognize the need to be authentic and real.  I don't think Joe is fragile.  I certainly don't handle him with kid gloves.  

I have, however, measured my words over the years.  

I never use the phrase "test your blood sugar."  Testing implies passing, or worse ... failing.   I also try to avoid saying things like "that's a good number" or "that's a bad number."  I try to view all blood sugar numbers as data. I am thankful for any data that could help guide decision making in Joe's care.

I also have some reservations about labeling Joe a "diabetic".  It's never seemed natural to say something like "my son is a diabetic."  So I've never said it.  

And...for some reason, I take pause with the word "disease".  To me the word means sick.  I tend to lean toward the word "condition", which really doesn't sound any better...oh and there is the equally unhealthy sounding word "disorder".  I use the words, once in awhile, but they don't roll off of my tongue.  Perhaps it's hard to accept words like illness, condition, disorder, and disease as a part of your child. 

A Diabetes 101 lesson on talking about the day-in-the-life.

Acceptance

Blog Week:  Day 2:    We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally?

The psycho-social-emotional toll of t1d has never been lost on me.  The micro-management of food.  The time the care takes.  The numbers "rating" how one is doing at managing the disease.  The stares.  The less-than-helpful, well meaning, misinformed comments.  And... I am sure the physiologic effects of the highs and lows impacts one's sense of well being.  Absolutely.


But..

I'm not gonna write about any of that today.

About a week ago.. as I was walking home after a run, I saw Joe headed down the street to our neighborhood.  His gait was slow.  His shoulders were slouched.  He then slumped down onto some one's lawn.

This happens.  When he gets a kinda badish low, his legs stop working.

I approached him.  "Hey..you low?"

The mouthful of Skittles provided the answer.

"You want me to run and get the car?"

"No,  Mom wait...I'll walk home with you."

Once his low released it's hold on his legs, we walked and talked and discussed Joe's day at school and then at track practice.  Somehow we got to talking about friends and then diabetes got thrown into the mix. Joe said something like "I just make jokes about my diabetes to my friends."

"What?"

"I try to make them not scared of it.  I figure if I make it into something funny, they'll feel more comfortable around me."

This kinda made me mad ...and ... well, sad too.  This disease demands enough out of Joe and the thought of him worrying about trying to make it better for his friends just annoyed me.  Not at him.  Not at his friends.  But just annoyed and mad and sad at the situation.

Trying to make his day-in-the-life a little comical for some acceptance from his buddies.

The Solo Sleepover

And, there are times I write about the day-in-the-life to let you know you are not alone.  And, we did it!  We made it through some new situation alive, some-what happy, and with some sorta glucose stability.

Words like "trampoline park" and uh ... "sleepover"  scare the bejangels outta even the most seasoned of d'rents.  Well, I got to experience them both in the time span of less than 48 hours.  The trampoline park escapade was with a friend and his grandma; not with me and my watchful eyes.  The sleepover was an impromptu arrangement made at 8pm last night;  it was to occur at a home where I have not provided any education about t1d (and this is where hot fiery pokers repeatedly jabbed into my mascara fringed eyeballs sounded more enjoyable than enduring the anxiety that was about to ensue).

The trampoline park went well.  Joe consumed roughly 80 grams of carbohydrate for "free" and we reduced his basal by 40% for a couple of hours.  His blood glucose stayed safely in the low to mid-200s.

It was the sleepover where I really struggled.

Joe ran into the house last evening.  His voice was laced with hope, as he asked for permission to spend the night with a couple of friends.  It was the last night of his Spring Break.  The sleepover would be at a home where he would essentially be flying solo with his diabetes care.  Yes, he is independent, but it is reassuring to have a some sorta supervision over all the blood sugar checking, carb counting, bolusing, and equipment management; not-to-mention the whole sleeping thing.  Joe sleeps like the DEAD.  He does not wake up for Dexcom alarms.  Sometimes, he wakes up from a low. More often than not, I catch the low first and treat him while he sleeps.  Nights are scary for me, if I'm not there to help him.

I offered to let him stay at his friends until 10, until 11, until midnight.  Joe felt that defeated the point of a "sleepover".  He was right.  I know this much about diabetes... the psycho-social-emotional part of this disease can smother your spirit.  The over-dramatic struggle taking place in my brain looked something like this "let him go ... he most likely won't croak" and "don't let him go ... he may become a depressed, maladjusted mess of a person."  The struggle was real.

The question "would I let him do this if he did not have diabetes?" repeated and repeated in my thoughts.  The answer was, of course, a resounding "YES".  I needed to let him do this.

So, he did.  He slept over at his friends house.

The Dexcom Share was on through the night.

He texted me every couple of hours with his blood glucose until he was incommunicado, while he slept.  The Dexcom eased any concerns of demise, due to hypoglycemia.

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Anxiety, and over-coming it, is perhaps the main reason I write about our day-in-the-life.