#DAM Drinking Plan

#practicalJoe #adrinkingplan?

A couple of weeks ago, in the car, on our way to hockey...

'Well I don't like carbonation, so no beer.'

'Joe, there are other types of alcohol.'

'I don't see any point in drinking, it seems dumb ... and it costs money.'

While I appreciate his 15 year old views on alcohol consumption and his aversion to all things carbonated, this is a conversation that will need to be re-visited over the years.

'Joe, you may change your mind. I know how things go.... You may try drinking at some point. The important thing is that you have a plan.'

He was looking down at his phone...I think I lost him😔.

But, I kept going. This topic...is another anxiety inducing topic for me. You see, the liver is not a great multi-tasker. The liver can be helpful if you are having a low blood sugar, it helps release glucose into the bloodstream. But, if alcohol enters the picture, the liver moves detoxifying the alcohol to priority number 1. This can cause severe hypoglycemia ... add in that you might be passed out drunk...in the early morning hours; this is an extremely dangerous situation.

'If you do decide to drink, you will need a "plan". It is something we should talk to your doctor about. The plan may be as simple as eating an extra snack before going to bed, or checking your number more often, or not drinking on an empty stomach....'

(I think I talk too much)🤔

As the "drinking plan" discussion came to a quiet end, I realized "the drinking plan" sounds like way too much responsibility for a partying, possibly inebriated college-aged male.

Who am I kidding!? I'm humbled.

#makediabetesvisable #t1d

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.

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.'

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.

Anxiety, Courage, Bravery

This summer, in particular, I am aware of it.  Raising a child with t1d takes courage.  

This post, in no way is meant to take away from those living with t1d.  Persons with t1d are perhaps the most strong, brave, and courageous people I know.  I live it.  I watch it day in and out.  When you have a child you are there to love them, to teach them, to support them, to guide them, to comfort them.  To endure the diagnosis and the laborious management of this disease and then to pass on the management to your child is a tenacious process wrought with "what if's".  Yes, I know you should not live your life thinking about "what if's".  But, sometimes... a lot of the time lately, I do.  Joe is my child; my child who has a high maintenance, chronic condition that needs monitoring, management, and consideration every time he eats, when he is active, when he is sick, when he is sleeping, and so on. 

Something as simple as going to a friend's house for a few hours is not so simple for us.  Actually, I think it is simple for Joe; not for me.  Reminders are given regarding sugar sources and diabetes supplies.  Questions are asked and pondered by my t1d worrying gray matter. Will he check a blood glucose?  Will he count the carbs correctly?  Will he bolus for the carbs consumed?  Will he go swimming and then go low and perhaps have a seizure?  Will he have a low on his way home and be sprawled out, like a limp squid, on a sidewalk somewhere?  These thoughts fleet through my mind.  I push them away.  I have to.  I need to let him grow up.  I need to hope for the best.  I have taught him well; I know that.

The other night, after an exercise class, he wanted to go hang with peers a couple of streets away.  Of course, I was fine with it.  Did I worry?  You bet.  Post exercise, Joe has a higher chance of going low.  He took sugar with him.  It was dark.  Dave was traveling, so I was home alone.  I willed myself to stay awake until Joe came home safe and sound.  I left my light on; the TV blaring.  Worry of a low Joe in the dark streets of our neighborhood crept into my heart.  I texted him, I requested he check in with me when he came in for the night.  He did.  He said he took sugar a couple of times while he was out.  He was a 148 when he arrived home.  I have taught him well; I know that.

A week..or so.. ago..  Joe phoned me.  "Mom..we are going to bike to KFC."  His voice was laced with pride and excitement over the adventure of biking and the glutinous fast food consumption that lay ahead.  KFC is a few miles away.  He would be biking with friends.  He would be partaking in eating (yes.oh.the.horror).  My response was "OK..make sure to take your supplies."  Within a few minutes a sense of dread came over me.  The sugar he typically keeps in his supply bag was in his room.  He was biking a few miles with no sugar.   Thoughts of Joe low and unconscious splayed out in the middle of our town, after the bike ride or after a miscalculated bolus crept into my mind.  So, I grabbed the sugar, hopped into my car, and I drove the sugar to the center of town; to Joe.  The sugar delivery trumped possible embarrassment of my possibly dramatic sugar delivery tactics.  He didn't mind.  He knew it could've been needed.  When he arrived home from KFC, he was 88.  He boosted with Skittles, prior to heading out to swim with friends.  I have taught him well; I know that.

And, while I have taught him well, there are just so many details that can go wrong, that can be overlooked, that can be misjudged with t1d.  It scares me, the thought of someday sending him out on his own.  Preparing him and letting him practice what he has learned for a few hours at a time will hopefully prepare me for a most difficult task; letting him go and trusting he will be OK.

An honest look at the anxiety, the courage, and the bravery involved in the day-in-the-life of parenting a child with t1d.

Take That Growth Hormone

Growth Hormone is released from the pituitary, which is a part of the brain. Growth hormone counterbalances the effect of insulin on muscle and fat cells. High levels of growth hormone cause resistance to the action of insulin.  Basically, this means blood sugar levels will run high during periods of growth.


A week...or so, ago.. we visited Joe's endocrinologist...

Measurements were taken, values were obtained, a physical exam was conducted, mental well being was noted. 

Another 1.7 inches in height was reached; he is now taller than me.  A few more pounds of weight were gained.

His A1C was 7; down 0.3 from his last visit.

I'd say we are holding our own.

A day in the life of  growing UP with t1d.

The End of the Beginning

My time left with them is diminishing.  I'm soaking up the family moments with a keen awareness of changes and transitions that will inevitably arrive, in the all too near future.

Joe and I had an interesting conversation recently.

The conversation was last week; in the car...and yes, you guessed it, on our way home from some sort of hockey.

"I'm going to go to Saint Michael's."

Joe was talking about a local college.  He, apparently, is planning on going to school there in five years.  He is, apparently, planning on living with Dave and I while he attends.

"Joe, trust me, you will want to be with your friends.  You will not want to live with us.  That is OK; it is a normal part of growing up."

Talk of Saint Michael's then turned into a discussion about the University of Vermont, which is about 5 minutes further from our house than Saint Michael's.  His plan changed from living at home to living at school, but coming home every weekend to see us, the dogs, and to do laundry.  Again, I stated his feelings about this would most likely change.

Not once during this conversation, not once...even over the days following this conversation...did I think of, or consider, diabetes.  Over the past nine years, I have gone from micromanaging a preschooler with diabetes, to teaching an elementary-aged child how to perform diabetes-care tasks, to remotely managing a tween with diabetes, and now onto promoting critical thinking skills in a teen with diabetes.  I have been anxious, over all of these years, about the day he moves out; about the day when I'm not there to help him.

The future of his day-in-the-life.

Sled Dread

Driving away my thoughts were many:  1) a low Joe slumped and crumpled on a cold, icy snow bank at the bottom of the sled hill, 2) a lost Woodchuck (the diabetes bag that houses sugar and Joe's pump) in the dark woods, 3) guilt over our current typical mother-teen power struggles, and 4)  fear of something happening to him, like an untimely death, and our last conversation was me nagging him...

 

Many of the thoughts are typical of most parents I suppose; except for the low part and the Woodchuck part.

Yesterday...

I dropped off Joe to go sledding with his friends.  The drop-off was about 5 minutes away from our home.  It was dusk, soon to be dark.  Joe has a history of extreme lows in the cold, while sledding.  He's almost 13 now.  He wanted to sled alone with his peers.  I got it.  

I had him check his blood sugar in the car, on our way to the sled hill.  It was 130-something.  I asked him if he'd bolused insulin recently.  He had bolused for a snack 10 minutes prior.  I had him eat 12 Skittles.  During this interaction my instructions were short, my voice monotone.  My mind was on other, more "big picture", parenting issues.  Issues like wanting Joe to value his education, limiting screen time, and limiting access to processed foods.  The diabetes seemed benign in comparison.

It seemed benign, until I left him with a bunch of other teenagers, in the cold, in the dark.  Then it hit.  "It" being, it is not benign.  This thing that becomes so normal and manageable isn't so normal and, at times, is anything but manageable.  Blood sugar control is a daily, hourly, and at times minute-to-minute threat to Joe's well being.  I forget this, until I am forced to let him grow up, yet, a little bit more.

As I dropped him off at that sled hill, I left feeling uneasy.  Blood sugar is like "air" in a sense.  He needs enough sugar in his blood to make sound decisions,  to function at full capacity mentally and physically, to be conscious, and, yes, essentially to be alive.  Unfortunately, sugar is not just floating around and utilized as automatically and innately as air is. The sugar needs to be available and Joe needs to be aware of when he needs to consume the sugar.  Hopefully there is a sugar source available when Joe needs it. Hopefully, he listens to his body and stops and takes the sugar right when he feels low.  Hopefully, he doesn't let the low go too long to the point where he is unable to help himself. He's a teenage boy with one of the most high maintenance chronic conditions. It's all kinda damn scary.

An 8 year ago photo.  A 5 year old Joe. 

Anyway.  Back to the sledding.

I arrived to pick him up an hour later.  Joe was waiting for me in the front of his friend's house.  He hopped in the car.  

"Thanks mom...for bringing me..for letting me.  I had fun."

"I'm glad Bud."

A stable 158 graced the glucometer screen when we got home.

A glimpse of the anxiety in my day-in-the-life, as Joe's autonomy progresses.

Conscientious

Yes, he is 12.  Yet, it's already on his mind; driving and diabetes.  In particular, lows and driving and the impact of those two potentially dangerous things occurring simultaneously.

"If it's a long road trip... like a few hours, I think I'll stop and check every hour... does that sound good?"

"Yeah, Bud, that sounds like a good plan."

"I would never want to hurt someone."

"I know."

"You take good care of diabetes.  When it's time, we will ask your doctor about it.  I know you will be responsible."

"Would I go to jail?"

"For what?"

"If I caused an accident."

"Because of a low?"

"Yea."

"I don't think so ..  I really don't know."

"Hurting or killing someone else ... " His conversation trailed off.  He shook his head and looked out the car window.

All of these years have been spent caring for him and worrying for his well being, his safety, his psycho-social-emotional health in dealing with a somewhat micro-managed day-in-the-life.  Am I teaching him well?  Will he eventually get the hang of it all?  Will he make safe decisions?  The driving and the college years have started to seep into my thoughts.  I suppose it should not surprise me he has some concern over his increasing independence and the responsibilities that accompany it. 

Realizing how his day-in-the-life could harm others.

ADA Drivers License Laws By State

Not So Easy

Diabetes care is non-negotiable.  Joe knows it.

If Joe doesn't do his diabetes jobs, checking blood sugars and bolusing, there is a consequence.  It is the loss of his phone for the following 24 hours.  Some people think this is harsh; like he is being punished for having a disease.  Think of it this way, he is a 12 year old with an iphone.  It's not a big deal.  Not taking care of diabetes is a big deal.  It can alter his morbidity and mortality.  

A few nights ago, his head was hidden by his sweatshirt hood.  His face was buried into the couch.  An arm draped over a dog; Oscar or Henry, I cannot remember which one.  

Henry - black/Oscar - salt and pepper

 He didn’t bolus for an after dinner snack.  The bolusing is where we are struggling a bit. I was questioning him on it. 

“Why?”

No response.

Head remains buried.  

“Why don’t you bolus Joe?”

No answer.

Head buried.

Stroking dog.

“Please answer Joe.  Is it that you forget?  Does it take too much time?”

Silence.

“I’m trying to help us figure this out.”

Joe peeked up from the couch cushions, head still veiled by the hood.  “I don’t know mom.”

“You don’t know?”

“Mom, I just don’t know.”  His eyes shone with tears.

I let it go… for now.

A not so easy day-in-the-life of being a preteen with type 1 diabetes. 

Changing

The intake questions were directed to Joe.

Do you use Apidra in your pump?'

'Yes'

'Are you on any other medications?'

'No'

'Have you been to the hospital for diabetes since your last appointment?'

'Yes'

'Were you admitted?'

'No.'

'Have you had your flu shot'

'No, not yet.'

'When was your last dilated eye exam?'

Joe's eyes darted to me.  I answered.

A couple of days ago, we visited the Endocrinologist.  Joe's A1C was 7.1.  The usual things were discussed and assessed.  The unusual part of the visit was Joe was now an integral participant in the visit. 

More questions were directed to Joe, by the endocrinologist.

'How's the carbohydrate counting, the blood sugar checking, and the bolusing going?'

'I'm asking you these things, not because you are going to get in trouble, but because these are the things you  are in control of ...I don't want to recommend changes to your settings if you are missing boluses or if your carb counting is off.'

My mouth twitched.  I wanted to talk.  I didn't.  It's Joe's turn now.  He's 12. 

Joe responded, confirming he was good with the carb counting.  He is.  Joe responded, confirming he checks his blood sugar regularly.  He does.  Joe responded, admitting he forgets to bolus for afternoon snacks.  He has a few times over the past few months.

Overall, Joe is doing well.  The basal rates need adjusting.  Apparently I've kept him on little boy settings and need to boost them up to more "teenager-y" settings.

He's changed so much.

He's grown over 3 inches in the last several months.

His toes frequently grow out the front of his sneakers.

His face has thinned.

His legs have thickened.

His total daily insulin dose is now over 40 units; it used to be in the low teens.


As we drove away from the hospital, Joe asked if he could start to help me with adjusting his pump settings.  'I need to start being a part of that Mom... someday I'll need to do it on my own.'

A changing day-in-the-life.

Freak Show

"If he is unconscious or has a seizure - Glucagon is in his camo bag OR call me and I'll run over and give it..  AND call 911". ~  Yeah, so writing that part seems a little over-the-top..but what am I to do?  It could happen.  I like how I added in the part of just calling me so I could "run over" and whack him with the Glucagon.  It is so very difficult to not appear like a freak show.  To top it off I am sending Joe over with a jar of pickles and salami-wraps for "free" snacking into the evening hours.  Freak Show...

 

My Head On Village Person Body...Don't Ask...

 

10:56pm last evening, Joe's blood sugar was 25.  Haven't seen a number that low since he was 3 years old.

 

Tonight is the sleepover.  I am a little nervous, due to Joe's low trend through the night over the past week.  I cannot back out of this though.  I know it.  Joe is thrilled and I need to make this happen AND keep my composure to give the illusion of "normalcy".  So,  I analyzed his numbers this morning and backed off his basal rates. 

 

I then proceeded to type out "instructions" to accompany my 10 year old child. 

 

Here is what I came up with (I added the red just for my readers here on Beta Buddies.  No red was added to the actual document for "normalcy-appearing-purposes"):

 

Joe should check his blood sugar: every 2-3 hours and/or before he eats and/or if he feels "LOW".

 *Joe is going to call me with blood sugar numbers and carb counts and he/I will bolus over the phone.

 * I did talk to him about not "over-carbing".  I told him a couple of pieces of pizza were OK, but no more.  One carb snack in the evening would be OK, but he should not graze (unless he is running low, then it is OK).  It is OK for him to snack on the non-carb foods (the pickles and salami-wraps that I sent are for this purpose).

 LOWS - A low blood sugar for Joe is a number less than 70:  If Joe's number is less than 70 he needs sugar.  Sugar is in his camo-bag.  He needs either 3 Starbursts OR 3 Glucose Tablets.  He then needs to wait 15 minutes and then he should do a re-check of his blood sugar to make sure the number has come up to 70 or higher.

 If he is unconscious or has a seizure - Glucagon is in his camo bag OR call me and I'll run over AND call 911.

 NIGHT TIME CHECKS - Please check Joe before you go to bed and call me with the number.  Then at 2 am (sorry...ugh).  For the 2 am number, if Joe is < 70 please give him 3 Glucose Tablets (he will chew them while he sleeps) and then re-check his blood sugar in 15 minutes to make sure his number came up (double sorry).  If Joe is 70 - 100, please give him 2 Glucose Tabs.  If Joe's blood sugar is 100-249, do nothing.  If Joe's blood sugar is 250 or greater, then he needs a "correction" dose of insulin.

 Using the Glucometer/PUMP remote for "correction": (NOTE: You should be within 5 feet or so of Joe to deliver the insulin from the remote) Once the blood glucose number appears on the glucometer screen, you can select "bolus" (at bottom of screen) by using the down arrow to highlight "bolus" and then pressing the "OK" button.  The glucometer will then give you a menu of "types of boluses" , you will select "EZBG" using the arrows to highlight "EZBG" and then pushing the OK button.  The screen will then display the current BG/where we want his BG "120"/and a correction factor...the math so-to-speak.  Push "OK" (Joe's current BG will be highlighted).  The cursor will then be highlighting "show result", press the OK button.  There will then be a screen suggesting how much insulin to give (the amount will be next to the word "TOTAL=").  You will need to push the up arrow until the suggested amount is reached.  Once the amount entered is the same as what the Total suggested you will press the "OK" button.  The cursor then moves to "Go".  You will press the OK button again to deliver the insulin.

A day-in-the-life of authoring an "Instruction Manual" (of sorts) for Joe, my ten year old son who has type 1 diabetes.

The Dreaded "No Parent Zone"

The "No Parent Zone" sign, printed on neon green backing, increased my anxiety level a bit.

I explained (or tried to, but how on earth can anyone "get it" unless you live it) to the registration lady that Joe had Type 1 Diabetes and that I needed to talk to his instructor, give him some sugar, and have an idea where he will be on the mountain before I can remove myself from the "parent-free" zone.

Joe was on skis for the first time in his life yesterday.  Hockey is over for his team for the season, allowing time for new "adventures".  Frankly, I was nervous to take Joe skiing when he was younger.  I should have taken him, but I didn't.  His blood sugars would frequent the 20s, 30s, and 40s when he was 3, 4, and 5 years old.  I was not comfortable manning him solo on a mountain, in the cold, on skis (yes, I realize this totally doesn't sound like the Reyna and Joe that you have come to know, laugh at, and perhaps love just a bit).

Back to the sign, the registration lady, and the skiing...Joe started his day with a lesson...

The registration lady tried to usher Joe onto the back of the room to the "No Parent Zone".  I was following Joe, unwrapping Starbursts.  His pre-lesson number was 198 (it is morning, trust me...he will crash).  The lady stopped me from following Joe.

Me:  "Ahhh...I need to give him sugar"

Lady:  "Now?"

Me:  "Yep, now."

Lady:  calls over the Joe to have him come to the "Non-Parent-Free-Zone".

I gave Joe 4 Starbursts (I shoulda given him longer acting carbs, but it was all I had in my coat pocket) and sent him back into the "Parent-Free Zone."  I waited for the registration lady, who is dealing with other lesson-goers.  Once she was free, I asked if I could speak to the instructor.  The instructor was in the "No Parent Zone" and as you maybe can already tell there is no way, no how I am gonna access this "Parent-Free Zone"...and apparently the instructors don't come outta the "No Parent Zone".  So the registration lady stated that she would inform the instructor of Joe's Type 1 Diabetes, that he has sugar in his coat pocket, and that I will be located at the bottom of the hill if Joe needs me.  I watched the registration lady go tell the instructor.  I kinda waited to try to make eye contact with the instructor so that she knew what the mother (and bad-a$$ pancreas) of Joe looked like.. ya know ... in case she needed my assistance.  She never looked over.  I left feeling a bit nervous and anxious.  I was confident in Joe though.  He had sugar...he would be fine...

Off to the bottom of the bunny hill I went.  I think they really discourage this.  Oh well.  I wanted Joe to know I was there if he needed me.

45 minutes or so into the lesson, the instructor called down the mountain (hill...), "Joe's mom?"

Me:  "Yes, is he low?" (I forget he doesn't speak Diabese)

Instructor:  "Ahhh...I wanna move him up to another class.  He can already stop and turn and he belongs in the Moose or Raccoon Group, not the Chipmunks."

Me:  "Will he be going up higher on the mountain?"

Instructor:  "Yes."

OK.  So I went with it.  I checked Joe's blood sugar again (about an hour after the 190-whatever and the 16 grams of carbs).  He was 134.  I give him a couple of glucose tablets and then he is going to apparently slug back some Hot Chocolate in the "No Parent Zone".  So, I went with that too.  Just have like a smallish amount of Hot Cocoa Joe.  Yeah, right.  Who knows what he consumed in the "Parent-Free Zone".  Alls I know is that when the lesson was over and Joe was begging me to rent skis and get a lift ticket so that we can conquer the mountain together his blood sugar was 396.  I did nothing with the number.  It'd burn down.  I had more pressing issues like I was gonna have to ski.  I had not skied since 1996.  I tore my ACL (Anterior Cruciate Ligament) the last time I skied. 

Lift ticket purchased, rentals donned, I head out to get Joe off the bunny slope.  He instructed me on how to insert my boots into the bindings.  Once the skis were on, I was comforted that they felt pretty natural to me.  Off to the lift Joe and I went.  There was no line.  Once the chair passed us to scoop-up the people in front of us, I tell Joe to hurry and get up to the loading line.  I then heard him say "crap"...as, I got scooped up by the chair; Joe did not.  He had dropped a pole and was two chairs back from me on the lift.  The people behind him are yelling at him to pull his safety bar thing down.  He did.  The only comfort to me at this point is that his number was 390-something the last time we checked and that he could not possibly be low and dangling 30 feet over the earth, solo. (Now let me insert here that most parents would be worried about their kid  dangling precariously over the earth while trying to man poles and while swinging their skis a bit too wildly - in my opinion... especially when it is their kid's first time on the lift, I think the diabetes just escalates that worry and I was so very, very, very calmed by his previous high-ish number...trying to not think that perhaps his vision may have been a bit blurry with the high.)  Anyway.  He exited the chair like a pro.  Off we went to enjoy some green circle runs.  We did several of the same run...off the same lift.

Then...

We decided to mix it up a bit.  We tried a new lift.  This lift looked long.  This lift had some sort of midway exit.  As we approached the midway exit, Joe thought perhaps we should get off.  Me?  I thought what the heck?  We should scope out the top.  So, up...up...up we went.  When we exited, we had two choices to get down the mountain.  A blue square to the left or a blue square to the right.  We took the blue to the right.  It was narrow.  It was icy.  I think I maybe said some inappropriate things. 

I finally talked him into lunch.  BG was 262.  He ate.  I bolused for the majority of the carbs, but did not "correct".  Out we went, for more.

By the end of the day, Joe and I were sticking with our first lift/run combo.  Joe would mix it up a bit and go on different runs than me and we would meet at the bottom.  One time I was waiting and waiting and waiting for Joe.  Lunch bolus was on board.  It had been about an hour since he had eaten.  Nothing scares me more than losing him.  It isn't just the losing a kid thing.  It is losing the kid and people not knowing about the blood sugar business thing.  It is the lost in the woods...comatose from a low... in the cold ... kinda thing.

Welp, he was fine.  Apparently he decided to go off some sort of wooden-ramp-jump-thing and did a face plant.

A day-in-the-life of adventure with Joe.

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.

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.

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.

The Phone...

About a week ago a good friend asked me if it helps knowing adults with Type 1? She wondered if knowing adults that have had diabetes since they were pre-schoolers gave me hope for Joe's future.

I don't really think that far ahead.

I suppose, I take it day-by-day.

It is hard to describe. When I send him off on his bike as I follow on foot, I wonder if I will find him in the street crumpled from a low. I am relieved when I find him pedalling with intense vigor. When he is left in the car recovering from a low as I run into grab Bridget from an activity, I wonder what I will see when I return to our van. I am relieved when I find Joe with his eyes open and his skin taking on color. When I call into the house, I pause and wait for a response. I am relieved when the lisp-kissed, nasally voiced Joe calls out. Always, in the back of my mind...in the periphery of my conscious, I half expect no response ... eyes closed ... pale integument ... scrumpled...crumpled ... in-need-of-immediate-assistance Joe.

**********

So, Joe has been giving camp a bit more thought than I knew about.

Last night, Joe's phone came.

Last night as he came up the stairs, Joe said "I feel low". He then headed into the bathroom. I stopped him. I told him to check a number first. I reminded him that he must "react" to a low feeling immediately. If he puts it off he could become too low to know what to do to help himself.

I don't know if it was the arrival of the phone and what it represents that initiated his response.

Perhaps it was the blood sugar of 63...and my reminder of the sequela of untreated lows.

Joe curled his long, lanky body up in my lap last night and cried in my arms. He cried because he is scared. He is scared to go to camp without me. He is scared to manage diabetes without "help". I explained that I will be around the rink quite a bit and we will figure this out as we go. I re-iterated that he is never alone. His family, his friends, his community envelope him in love and in support and in certitude.

I then did what any Temporary Head Pancreata In Charge would do ... I quizzed the shit outta him.

Me: "What do you do when you eat?"

Joe: "I look at the carbs."

Me: "What else? What else has to happen when you eat? Let me know everything that you do..." I wanted to make sure he knew the sequence of what needs to take place without me in the midst reminding him.

Joe: Right on the money with, "Check a number ... count the carbs ... bolus."

Me: "What if you are low?"

Joe: "I take 3 sugars or drink a juice."

Me: "What do you need to do 15 minutes or so after taking sugar?"

Joe: "Check a number to make sure I have come up."

Me: "Right."

Mentally and physically preparing Joe for his day-in-the-life at Hockey Camp with Type 1 Diabetes in tow. 8 years old seems so young to me right now.

That Is NOT On My Playdate Cheat Sheet...

What sending Type 1 on a Play Date looks like:

A few days ago...

The water mushroom and the blaring music were a concern.

I lounged on my chair by the pool. The cell phone was poised on the arm of the chair. My eyes scanned it regularly for any sign of a call, a message, a notification. I was with Bridget and her friend. Joe was at his friend Adie's house. The phone is a constant companion during Joe's absence. I have trust and faith in Joe and in Nikki, Adie's mother. They may need me though.

The green notification light started blinking.

My right hand refreshed the phone. Damn. I missed the call. It was them.

I call them. The peripheral background noise makes the call difficult to interpret. Nikki let's me know that Joe was 63. I think that is what she said. I repeat into the phone staccato-like "six" "three". She confirmed. Something about sugar or Starbursts was mentioned. I ask in a loud cave-woman-y voice "He.took.sugar!?" Again, at least I can hear the "yes" that is delivered in response. Nikki goes onto say something about Joe wanting a snack and he was mumbling something at her like "combo bolus". Well.... Ok then. This isn't on my Play Date Cheat Sheet.

Joe gets on the phone.

The lisp-y, the nasal-y, and the soft spoken-y really isn't working for me here. The noise of the water 'shroom splashing and the Pop Rock spewing from the speakers is too much. I heard "snack" and "combo". I interpreted the issue as "Joe, are you wanting to eat now? ... are you calling because you don't want to wait the 15 minutes to recheck your blood sugar? ... and you want to do a combo bolus to cover the snack?"

I heard a "yes", with the emphasis on the slightly drawn out "s" that we all know and love in the lisp.

Fine.

I understood.

I tell him to do a 0%:100% extended over 30 minutes (this is NOT intended as medical advice). I tell him not to enter in his BG, assuming he will correct with the 12 grams of carbs he just consumed for the low. I can pick out an "OK" from his end. Then, abruptly, the call is ended. He hung up, ready to man his pump with the instruction given I assume.

Bridget comes at me from the snack bar. She is shaking two Tootsie Pops like they are maracas to the beat of the music with confidence and sass. I continue to scan my phone.

A text came in... "Don't worry... we r all good!"

I responded with ..."I know he is in good hands!"

A couple of hours later, when Joe is back with me, he checks his number. A 108 graces the glucometer screen.

A day-in-the-life of critical thinking as he expands his independence.

Click here for my original post on "Play Dates".

The ONLY Day-In-The-Life He Knows

It is 3:30 am.

I am up.

I am up for the day.

Sometimes my urge to write something down is so strong that I cannot go back to sleep after the 3am blood sugar check. This occurrence is relatively frequent, hence the "diarrhea" of my fingers.

The posted photo...the one that looks like a "great-now-I-gotta-make-up-the-grams-of-that-jelly-smeared-all-over-his-face" photo was what had me up and shuffling through a heap of old pictures that I have shoved half-haphazardly in a box. It is perfect for today's post on so many levels. It was taken "pre-diabetes", so no worries on the "carb-making-up". It was toast and jelly; the same thing Joe was munching on yesterday when he stated without emotion ... when he stated, matter-of-factly, that he hated diabetes. He continued on, void of emotion, that he hated everything about it. This picture represents a time before "D". Joe was two. Joe does not remember this picture. Joe does not remember a life where that jelly would not have to be "made-up" for in carb grams.

I help organize our JDRF Walk Kick-Off Luncheon each year.

This year, during the luncheon, we are going to be sharing how our "stories" are powerful tools in raising awareness about type 1 diabetes and ultimately, through the telling of our stories, the importance of a less laborious and rigorous treatment regimen and the need for a cure will be appreciated by the general public.

I asked Joe if he would like to talk at the luncheon about his life with diabetes.

His answer was, "What would I say? ..... I don't know what it is like."

I followed up with, "What do you mean Joe? How do you not know what living with diabetes is like? You have had it for four and a half years..."

*pause*

"Mom, I know no different..."

*WoW*

*my spawn is "deep"*

My response was something like, "So, you don't feel like you can talk about life with diabetes because you don't know how it differs from a life without diabetes ... you don't remember what it is like to not have it?"

"Yes, exactly..." in a lightly kissed, lisp-y, nasally Joe voice.

Well, fuck-stix. (Is that a sentence? noun (x), finite verb (x) complete thought (x)).

I have thought about this very topic over the years. At diagnosis, people were even so bold as to state "... blah...blah...blahbitty...blah.... at least he will know no different". Yes, true. He won't...He knows no different. He does not know what it is like to sit down with a box of crackers or a sleeve of cookies. He does not know what it is like to eat a meal without piercing his finger with a needle beforehand. He does not know what it is like to play a sport without frequent blood sugar monitoring. He does not know what it is like to not fear a low. The list is infinite. The list is life-encompassing. The list is somewhat sad.

Not sure how I feel about all of this... yet.

A day-in-the-life of knowing nothing else for his day-in-the-life.