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.

The Smiley Face Did The Trick

Joe finds them annoying; the questions.  The questions a head pancreas, who is supervising a pancreas in training, ask. It was much easier when I did all of the diabetes care. 

  

“Did you check?”   “Did you wash your hands?”

“What is your number?”  “What was your number?”  “Joe, check your number?”

“What is Dexter saying?”  “What was Dexter saying?”

“Have you bolused?”  “Did you bolus?”  “Joe, bolus.”

“Did you eat sugar?”  “Eat sugar.”

“Do you have your supplies?”  “Don’t forget your supplies.”  “Go get your supplies.”

“What did you eat” “What are you going to eat?”  “You gonna eat all of that?”  “How many grams?”

“Change your site?”  “Did you change your site?”  

This is a pretty accurate blow-by-blow of our days.  Mind you, the questions aren’t asked one at a time.  They pretty much get peppered out the way I wrote them.  We ask one; no answer.  So we ask again … and … at times, a third question or follow-up statement is required.  Parenting a preteen, a preteen male, a preteen male with type 1 diabetes, can be maddening. 

Even via text… 

I think the emoji prevented me from needing to ask a third time.

A day-in-the-life of a transitioning pancreas.

"Good"?

My vision was tunneling, the periphery clouding.  I had to hunch myself over a bit in an effort to avoid passing out.  I was hoping the lady would stop talking and move on.  The lady was an acquaintance-y friend of mine.  She is the mother of one of Joe's school-mates.  I had not talked to her in a couple of years.

I had just popped off a 5 mile run without hydration.  The humidity and heat were elevated.  It was on July 4th.  I ran into this acquaintance-y friend of mine on the sidewalk about a mile from my home.  About a mile from hydration!

"How's Joe?"

"He's doing well."

"How's his diabetes?"

How to answer?  How to answer?  It's good?  I mean really?  Is it ever good?  Sure.  I can smile and pretend it is all well and fine and that Joe and I just luuuuvvvvvvvv checking blood sugars, counting carbohydrates, and changing pump sites and staving off lows, while avoiding the long-term complications of highs.  The easy answer... the easy answer is just like the response we all give when someone asks how we are doing in passing.  The easy answer is "good". 

Still feeling a bit passing-out-ish...

She (Joe's~school-mate's~mother) then went onto tell me about a childhood friend of hers. She had a childhood friend.  She had Type 1 Diabetes.  She did fine through childhood...grew-up...went to college.  She came home from college for a school break (Christmas Break?  I cannot remember)...she took a nap... she never woke-up...her mother found her dead ... dead from the diabetes.

Welp.  Good to know that I don't have to go with the "good" response here. 

"How's Joe's diabetes?"

The words "good" or "bad" are too polarized.  I need something more general to describe Joe's diabetes on most days.  But then there are some days that "good" sums it up.  And then there are days that the word "bad" is perfect.

My general answer when asked "How's Joe's diabetes?" will be:

Joe's diabetes bears watching and managing; not just day-to-day, but hour-to-hour. 

In response to Joe's~school~mate's~mother about her friend:

I live with knowing that there is that possibility that I will get "the call" someday.  You know, "the call" that your son was found down and has been taken by ambulance to the hospital.  I live with being as prepared as one can be for walking in on an unconscious (or worse) Joe.  I do not live in fear.  I just simply live knowing this is my reality. 

A day-in-the-life of trying to explain being a parent of a child with Type 1 Diabetes.

Today I Remembered The Shin Pads!

Before we get to Joe, Bridge got ahold of my phone the other day.  Here is what I found:

OK...onto Joe:

A youngish lady was standing at the back of an SUV parked at the field entrance.  She was checking in campers, while another fella sat on a fence post handing out soccer balls to each attendee.

Thought feed went something like: *Nah...I don't think this is where I tell them about the diabetes business*

They instructed us to move on down a wooded path to the fields.  Camp-goers were gathered down and to the left; the coaches were way out on the fields straight ahead.  Joe immediately peeled off to the left.  As for me ...  I was the only parent approaching the coaches.  I identified that I had a camper with medical needs.

Joe attended a half day soccer camp yesterday in 88 degree heat with high humidity.  The camp coaches are British, which in my opinion makes everything they say sound nice.  The camp is close to our home; it lasts from 9 to noon.

Me to coaches:  "My son, Joe Maher, has Type 1 Diabetes."

(for some reason I then kind of wiggle the Woodchuck side-to-side ... like the Woodchuck represents the diabetes)

I continued:  "What time does snack take place?"

One of coaches (in British accent):  "Haf pas ten."

The "haf" and the "pas" threw me off, so I asked to clarify:  "Ten?"

The young woman coach could see my confusion and responded:  "Ten thirty."

I then unzipped the Woodchuck and showed them my plan:  Glucometer/sugar/snack/track phone and pointed out my cell phone number, which is written right on Woodchuck's lid.  Joe would be checking a blood sugar at snack time.  He would call me with his number and he and I would discuss how much, if any, of his Go Lean Bar (snack) he would bolus for.  I then briefly went over lows, their immediate threat to his well being and pointed out my phone number again.

Me to the coaches:  "Do you want me to bring Joe over here so you know which one he is?"

Coaches:  "Nah...Joe Maher...right?"

Me, a little wary:  "Yea"  (wiggling the Woodchuck again) "he'll be the kid with this bag".

So, I left him.  I left Joe at a half day camp with no intention of returning until noon.  It was a first.

9:42am I get a call.  It is Joe.  It's his quiet voice; the I'm~not~feeling~good~and~not~having~fun voice: "I'm 84.  I'm calling for your opinion."

My opinion:  "Eat two Starbursts and then your snack now Joe...for free."

Apparently Joe had an opinion about my opinion: "No, mom... that is for snack time..." and then something was mumbled about the heat.

My other opinion:  "K.  Do four Starbursts then."

We hung up.  I was worried that he was just slumpily sitting on the sidelines not feeling well.  An 84 in the early morning is not a safe place for Joe's blood sugar to be.  He usually has a ginormous post-breakfast spike (like into the low 300s) and his settings are adjusted accordingly (i.e. he receives a 1:10 breakfast ratio...with a 1:60 morning snack ratio to put the brakes on the breakfast insulin).  After all this thought and careful planning that doesn't even seem like "thinking" or planning anymore because I have been doing this for like seven years now...I realize that I sent the little guy to soccer camp without shin pads.  Ugh.

I called his phone at 10:00, hoping that he would not pick-up.  If he did pick-up, it meant that he was not feeling well at all.  He didn't pick-up. 

10:30am another call from Joe:  "Hi, I am 117 and it is snack time."

Me:  "Eat the Go Lean for free...have fun! ... oh and sorry about  the shin pads."

Him:  Mumbling and grumbling about the heat.

A day-in-the-life of taking diabetes, but not shin pads, to soccer camp.

Too Many "Special" Things?

A quiet, drawn out plea of "Stay .. with .. me .. mom." came from Joe.

"You want me to read some of our book?"

"Yea"

It was last night.

His blood sugar was a bad 39.  Not that there is a good 39, but the "bad" means he was really feeling the 39.  His eye lids were closed.  His lanky bod was twisted up in the covers, curled tight in my bed.  He was motionless.  At times it was difficult to tell if he was still "with me".    As I read "Catching Fire" aloud to him, I would check in with a ..."Joe, you ok?" every few paragraphs.

Yesterday afternoon he had attended a three hour birthday party.  The party included three hours of swimming with eight of his buddies. The swimming consisted of playing "King Of The Cheese"... basically this can be described as "King Of The Mountain"... but in the pool using an inflatable cheese as "the mountain."  There was freezy pop ingestion in the hot tub where Joe reported if you wanted the freezy pop to be less freezy, you just dipped the bottom tip of it down into the warm hot tub water.  Of course the party included a couple of pieces of ice cream cake and snacks.  His blood sugar was steady throughout the party (80s to 130s).

On the heels of the party, we decided to have dinner out as a family.  You know...stuff a normal family should be able to do.  Pasta Alfredo and a sundae was ordered and consumed by Joe.  Carbs were counted.  Boluses were dispensed, combo and regular.  Within and hour after dinner, Joe's above mentioned 39 was experienced.

Joe's original response to the 39 was regret over eating the pasta for dinner.  I reassured him that it was not his fault.  I explained that I over-bolused for his meal while underestimating his previous activity at the birthday party.

Here is where he got me.  It is here where I felt the sting of the unfairness of this damn disease.

"I guess we just did too many special things today ma." 

Too many special things?  Really!?  He went to a birthday party and then out to dinner.  These are things that all kids should be able to do without a second thought. 

A day-in-the-life of  childhood and Type 1 Diabetes.

Going Well!

I promise I did not "wear" the headlamp as I dropped off Joe to his friend's house for the sleepover last evening.  However, for your viewing pleasure I did ....

I thought the "head lamp" was a thoughtful token for night-check-ease.  Salami and pickles were brought for Joe's snacking pleasure to veer him away from heavy carb snacking into the night.  In general, Joe does not eat carbs after dinner.

So far so good.  I have not heard from Joe or Joe's-friend's-mom since 10:30pm last night.

Up to that point Joe had consumed pizza (2 slices), ice cream (1/2 a cup, which he thought was a cup and we bolused for a cup, and he then called me back to say it was 1/2 a cup and we then made up the difference with Starbursts, which I believe ultimately lead to a low...but whatever), salami, salami wraps (cream cheese spread on salami that is then rolled up into little cigar-shapes), and pickles. 

His numbers have ranged from 55 to 270. 

I'll take it.

A day-in-the-life of support pancreating remotely.

I Don't Have All The Answers

"I knew about the highs and not taking care of my diabetes and losing arms and legs...but I did not realize I could feel so sick."  ~ Joe talking to me about his death~ate~a~cracker ketone sickness feeling from the other day.

"...so without insulin, would I just feel like that?  I would feel that sick until I died?"

*Uhh oh.  Not the dying business.  Please don't ask.  Please don't ask.  Please don't ask.*

"How long do ya think that would go on for?  The dying?  A year?"

*Ohhhh Man.* 

*Of course, he had to ask.*

"I dunno Joe.  Maybe a week or two?"

No one or nothing can really prepare you for all the conversations you will have with your children.  Limb loss and death have got to be amongst the toughest.  This talk of arm-less-ness and leg-less-ness and life-less-ness ("less-ness-es" added in to "lighten" the mood here) made me squirm as a parent.  What to say and how to say it; I do not know. 

Yesterday...




...Joe "raced" to CURE diabetes.

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

Fickle D'

"What was he?" ~ Dave to me at 3am...

"144"

My "one-eye" started to close and then I thought perhaps maybe I should ask why he was asking. 

My "one-eye" reopened ~ "Why?"

Dave's sleepy voice yammered off something about 9 glucose tabs and something about the 40s.

Me ~  "oh, I forgot to tell you that I never bolus for all of S'mores ... just half ... he always goes low after eating them."

Joe had a rough diabetes day yesterday.

6:54 am 337
9:06 am 306
10:05 am 319 (ketones 3.9)
11:18 am 248 (ketones 2.4)
12:14 pm 319  (ketones 1.4)
1:46 pm 448
2:14 pm 422
2:53 pm 406
4:01 pm 255 (ketones 0.0)
5:35 pm 56
6:56 pm 46
7:15 pm 110
8:15 pm 77
9:00 pm 80
10:49 pm 52
11:09 pm 41
11:29 pm 65
2:30 am 44
3:16 am 144


He handled it with grace.

A day-in-the-life of fickle d'

An Hour's Time...

The numbers never cease to amaze me.  How quickly they can turn on you; for the better or for the worse.

10:00 am-ish today:  BG: 319    Ketones: 3.9.  Site was removed; cannula was kinked.  Supposedly Joe had been in the 300s since 6am.  I never checked in with him about his pre-breakfast number until now (head hangs and shakes from side-to-side in shame).  New site was placed.  A "correction" of 2.3 units of insulin was given.

"How long will this last?" ~ Joe to me.  He is referring to the death-ate-a-cracker-feeling that he is enduring.

"Hopefully not more than a few hours."

Joe's sick.  Ketotic sick.  He's never been that kind of sick before.  Sure, he has been vomit-bug sick with subsequent ketones, but not vice-versa...the ketones inducing the "vomit-feeling" sick.

He is pale.  He is lethargic.  He is nauseated.  He is crumpled in his bed.  He should be at a baseball game right now.  And, sadly I actually tried to push him to go and play.  (I have a "competitive issue".... and ahhh... a "suck-it-up issue)."

Sometimes, actually a lot of the time these days...I forget that I am messing with a disease.  Not sure what I think I am doing with all the blood sugar checking and bolusing and carb counting and needle jabbing.

The "invisibilities" of  type 1 diabetes are like a double-edged sword. On the one hand, I am thankful for Joe's "normal-ness" in his appearance. His ability to run, jump, skate, bike, scooter, gallop, skip, and careen astounds us all. I am thankful for it; truly I am. On the other hand, what is difficult; what stings; what is painful is that the very thing I am grateful for is the very thing that detracts on why a cure is so desperately needed. It takes away from all that is done "behind the scenes", hourly, to ensure Joe's safety and wellbeing. The hidden sequella of it all can lull you into a false sense of comfort. It can lull the public into the inaccurate perception that we "have it under control". It has even, at times, lulled me into apathy and indifference.

An hour later...11:00 am:  Joe's perky voice is calling from his bedroom announcing his recovery as evidenced by his sudden urge to consume a fluffer-nutter.  BG: 249    Ketones:  2.4.  Carbs: 48.  Insulin Bolused:  2.3 units.

Things are going to return to "normal" quickly it appears.  The numbers, like I said before, never cease to amaze me.  How quickly they can turn on you; for the better or for the worse.  In and hour's time, things are drastically different.  Must be unsettling for one's body and subsequently for one's psyche.

A day-in-the-life of  an hour's time of living with type 1 diabetes.

The "One-Eye"

I think I was pulling the "one-eye"... you know...the middle of the night check "one-eye"?  It is where I only open one eye so that I can traverse the walk to Joe's room and sift through his d' supplies to grab a blood sugar check, while tricking myself that I am still sleeping b/c one eye is closed.  I think I was pullin' the "one-eye" at 6:07am this morning as I stumbled back into my room...from Joe's.

Dave to me:  "What are ya doin'?"

Me:  "Just checkin' to make sure Joe was still alive...he is not in his room...so he must be good."

Yes.  I am serious.  This is what I said.  This is what goes on in our d' home.

Here is what happened...here is what went down.

1:47am - I woke.  On my own.  I usually do in anticipation of the alarm.  I set my alarm for  3am,  but usually wake an hour or so prior; my internal clock so-to-speak.  The "one-eye" was employed per usual.  Joe's blood sugar was 280.  I went to bolus...I cannot remember how much the pump called for.  I think it was like 1.8 units.  I scrolled up the insulin dose, pressed OK.  Then that "dunh..nah..nuh...nah...nuh...nah...NUH" alarm went off.  You know (Animas users) that alarm that means something is up.  I looked at Joe's pump.  It said something to the effect of "there is not enough insulin left in the cartridge in this pump to give that dose you just scrolled up to".  There was 1 unit left in the cartridge.

You and I both know what I should have immediately begun to do.  You know.  Like open the other eye...traipse down the stairs...get out a new cartridge, a new set, an alcohol pad,  Site Prep,  IV 3000, and oh yea...the insulin.  You and I both know that I needed to be putting in a new site.

Now, please don't get judge-y here.  But, you wanna know what I initially did.  Yes, it is embarrassing.  It is embarrassing for a few reasons:  1) I am a nurse 2) I have been a d' rent for a pretty long time and know better and 3) this is my child and I should be taking decent care of him.

Ok...

Here goes...I stumbled, "one-eyed" back to my room and into my bed dividing 1 unit by his basal rate of 0.3 units/hr.  Hmmmm...I figured out that should get him to about 5am...with the non-corrected 280....knowing that I was hoping to sleep into 7am.  Then I actually was wondering how long it would take the ketones to climb...and finally I thought of the ICBCs (kinda going all "Princess Bride" here...you remember the ROUSs ~ Rodents Of Unusual Size).  ICBCs translates to Inevitable Cartridge Bubble Clingers.  So, technically Joe may only have about 0.5 units left in that pump.

Eyes (both of 'em) were opened.

Bed was exited.

Stairs were traipsed down.

Supplies were collected.

Site was changed.

280 was corrected.

The CARNAGE..  Note:  No Glucose Tabs were used in this scenario...They were toppled over from a previous night...left them in photo for "drama factor"



Technically, I should have set an alarm for 4-ish or 5am.  Too tired to set the alarm, I was relying on my internal clock to just kinda jostle me awake around then.  It didn't happen, hence the check for life at 6:07am.

A blood sugar was finally checked at 8am.  A 107 graced the glucometer screen.

A night-in-the-life of managing type 1 diabetes for my son Joe. 

Cyclone Holding A Chicken?

My message to Joe's school's attendance line, which is manned by a friend, this morning (names have been changed for "privacy-sake"):  "Hi Lucy.  Joe will not be at school today.  He is still feeling under the weather.  He will, however, be at the play again tonight as long as he doesn't spike a fever.  And... George (Lucy's son) made a great monkey last night!"

Joe's school of fourth and fifth graders have been working diligently over the past several weeks to put on "The Wizard Of Oz".

Joe was/is part of the backstage crew... AND ... wait for it .... wait for it ... wait for it.....  He got the part of .... "The Cyclone".  No, the irony is not lost on me. 

Prior to last night though,  Joe had been telling me he was "The Tornado With A Hay Bale."  Uhhh, ok, so I am not all that artsy and I am by no means a meteorologist ....ah sooooo .... I really did not think about the "cyclone"/"tornado" thing and I just had visions of Joe twirling all willy-nilly across the stage with a hay bale  leaving a trail of straw in his wake.

So, the opening night was last night.

Yesterday, Joe had come home from school sick.  No fever.  Just a scratchy throat and lethargy.  He rested throughout the day and felt well enough to participate in the play last evening.  His blood sugars had been unpredictable and then subsequently on the rise.  At 4:30-ish I fed him dinner.  His blood sugar was 350, negative for ketones.  I smacked him with a good 4.5 units for his blood sugar and a cup of mac and cheese.

Off to the play we went.  Joe busied himself backstage and with his pals.  I hogged-up a bunch of seats and proceeded to wait for the hour until show-time.  Joe came by once to check-in with me.  No diabetes tasks were undertaken.  Dave, Bridget, and friends eventually arrived and filled the seats around me.  The play started.  I did not see Joe with the backstage crew.  I did not see a "Tornado With A Hay Bale" fling by on stage when Kansas was gonna be no longer.  I had not seen Joe in over an hour.

I got worried.

I had the Woodchuck.

Joe did not have sugar on his person.

He was sick.  He was 350.  He ate mac and cheese.  He had not checked a blood sugar in over 2 hours.  I had no clue where his number was (ahhh...do I ever?).

My visions of Joe were of him slumped over somewhere in the halls of the high school, the venue for the production.  Maybe he was slumped in the corner of the dimly-lit backstage area?  Perhaps he was slumped over in the bathroom.

All these visions of slump-age made me (and Dave) more and more uncomfortable.  I waited for a pause in the action and made my way out of the theater and high-tailed it to the backstage area.  I went to one side and asked about Joe. A scarecrow told me Joe was on the other side.  I trounced behind the stage to the other side.  There was Joe.  He was on the edge of the stage, waiting for a scene to end so he could go grab a hay bale.  He would not come off for a check until his duty of hay-bale-removing was completed.   Once hay bale #1 was removed from the stage, he came to me.  Gave me a finger.  I pierced it (yes, I still do this sometimes when he is focused on other things...like cool life events).  5-4-3-2-1.... a 194 graced the screen.

I asked him about the "tornado scene".  I told him I got worried when I didn't see him come out with the other "cyclones".  His response was, "Mom I was the first cyclone ... the one holding the chicken".

Nice.

A day-in-the-life of monitoring my "cyclone".

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.

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.

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.

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. 

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.

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.

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.

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.

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.