1:37 am

In the fog of my blissful sleep, I hear something.  It's important.  I recognize that as I slumber.  I try to remain asleep, but my mind searches for the implications of the sound.

It's 1:37 am.

My subconscious knows to to be on "high alert".  Joe just participated in a power skating camp this evening...with a failed site...which resulted in a HIGH blood sugar... which required a new pump site...and a correction dose of insulin.  This may, or may not, end up with unstable blood glucose readings.

Unfortunately for me and more importantly Joe, this will be a rough diabetes night.

It's 1:37 am.  My mind and my body wake from the alarm.  Joe is low.  It's the "MEMMMP...MEMMP...MEMMP!! - Your kid is super friggen low...low alarm".  I'm still a little dazed from my slumber.  I catalogue the day.  The power skating, the site change, the correction are recollected.  This could be bad. 

I stumble into his room.  I'm tired.

I ready his glucometer with the test strip.  I lance his finger, as he sleeps.  The blood is wicked up the test strip.  He is 40.

I turn off his insulin pump for 2 hours.  Four glucose tablets are grabbed from the supply kept in his room for exactly this; our nights.  I didn't even need to coax him to chew the tablets.  In his sleep, he chomps on each tablet.  They are each consumed in short order.  His body knows ... it needs them to survive.

I plod back to my bed.  I lay down.  I know I won't sleep; he is too low for that.  I'll need to know he is OK.  40 is nowhere near "OK" when he sleeps.

I start on my left, turned away from my night stand where the CGM resides.  Eventually, I turn to the right.  I take a peek.  He's only 45, smooth.  I wait.  I turn.  It's about 2 am.  I turn.  50 smooth.  Still, I wait.  I know it will turn around.  I just need to wait a bit longer.  Just a little longer until I'll feel OK.  Just a little longer until I'll feel he'll be OK.  Just a little longer until I can go back to sleep again.  Back and forth I go, peeking at his number.  At 2:17, or so, 63...diagonal up.  The next time I check he's 115 ...diagonal up.

But, is he truly alright?

I need to check on him to be able to sleep.  I prop myself out of my bed.  I plod back into his room.  I want to check his pulse.  Weird, I know.  If it's his carotid (on his neck) it may wake him.  I take his wrist in my hand.  I feel a strong, steady radial pulse.

Finally, I can go back to sleep.

A glimpse of a rough night in the day-in-the-life of parenting my child who has t1d.

The Tree

Yes, the title has nothing to do with the post.  I just loved the photo I took of the area where we waited out the low.

Over the past 10 years, diabetes, for the most part, has become routine in the day-to-day, the hour-to-hour, the meal-to-meal, the night-to-night.  It blends in and really, at times, doesn't seem to be too big of a deal until it stops your child in his tracks.  When it stops Joe from walking, well... that is one of the times t1d kinda becomes a big deal; I can't just pop him some sugar, scoop him up, and lug him around like I could when he was 3, 4, 5, 6..or even maybe when he was 7 or 8.

A few weeks ago...on Father's Day..

We had set out on a family hike with my sister and my brother and their families.  The day was warm, uncomfortably so.  Joe had recently checked a blood glucose and his number was in the high 100s.  He ate a snack.  We walked.  We then played at the water's edge of Lake Champlain.  The thought of a low fleeted through a brain synapse or two, but then drifted away as I enjoyed this time with my siblings.  Joe seemed upbeat, as he skipped rocks across the lake's surface.

When we readied ourselves to leave, to hike back to our cars, it hit and the quickly and resolutely stated "I feel low," was heard.

He was 40 something.  Skittles were munched.

He stumbled, trying to take a few steps to start the long, hot walk back to the cars.  He wasn't gonna make it just yet.  I knew from the way the first step went, we would have to wait this one out.  It was gonna be a bad low.  The family, there were 10 of us, moved on and started on the hike.  I directed Joe to some shade.  He plopped down and then proceeded to lay face down in the grass.  I gave him another fistful of Skittles.

He didn't complain of the discomfort the low caused him.  His focus was on missing time with his family.  He repeatedly attempted to sit up to ready himself for the walk, but was unable to do so.

He rarely complains of the physical discomforts associated with t1d.  Over the years, it has been the stopping or the waiting that have bothered Joe.  Diabetes care appears seamless to outsiders, but trust me there is way too much stopping and waiting involved; especially for a young, growing, active boy.  Stopping to check a blood sugar, to count carbs, to bolus, to do a site change.  Then there is the waiting.  Waiting for a low to release it's hold on your body.  Waiting for a stomachache to subside after a bad pump site and the subsequent ketones.  Diabetes can most certainly be a tester of one's patience.  And on this day, it tested Joe's.

Explaining the psychology of a low in Joe's day-in-the-life.

Acceptance

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

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


But..

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

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

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

I approached him.  "Hey..you low?"

The mouthful of Skittles provided the answer.

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

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

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

"What?"

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

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

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

The Toe Is A No Go

Perhaps I shoulda warned him before doing it.

Maybe a little heads-up woulda been the appropriate thing to do?

I'm not sure what good toe poking etiquette entails.  In hind sight, initializing a toe-poking-protocol on a sleeping subject is probably not the proper procedure.

Yesterday morning around 6:57-ish, the house was still sleeping; well everyone, but me.  I was headed out for my morning run.  Joe's Dexcom was showing a 67 and diagonal-downing.  A check was warranted on the sleeping Joe.

I entered his room and readied the glucometer with the test strip.  While wielding the lancing device, I assessed the target situation.  Joe was dead asleep with both hands tucked under his head, making his finger tips unavailable.  I noted his toes, peeking out from under his blanket, were easily accessible.

Pry fingers from under his head...wake him up?

Poke toe...maybe he sleeps?

Fingers?

Toes?

Welp, I haven't tried to poke his toes since he was like 4.  Let's just say I tried to yesterday morning...and... he did not sleep through it and as his leg briskly recoiled, he might have said something like "for the love of all that is good and holy..!" (but with different nouns and verbs).

I wanted him to sleep in.  He's growing.  He's tired.  He was up late the previous night.  He's up, due to diabetes nonsense, more often than not these days.  Note to self:  poking his toes will not help him sleep in.

I then poked the kinda-awake-and-kinda-annoyed-Joe's finger. A 99 was obtained.  The basal rate was decreased by 40% x 1 hour.  I ran.  Once I arrived home, a smooth 122 graced the Dexcom screen.

Waking Joe, via the toe, while simply trying to manage the day-in-the-life.

Sub Flub

"Did it bother you?"

"No mom, I was OK with it..  ..  It really wasn't a big deal."

A couple of afternoons ago...

Joe was sharing about his school day.  He had a substitute teacher in one of his classes.  His Dexcom started donging off "Meep-Meep-Meep style" indicating a low I presume, from the history of numbers.

One of Joe's classmates started teasing Joe...stating he should put his "cell phone" away.  The students were trying to rattle the sub, not tease Joe per-se.  Another Meep-Meep-Meep and from the sounds of it, the substitute teacher was not impressed with Joe and his ding-donging cell phone.  She asked Joe to put his cell phone away promptly or she would be referring him to the Principal's office. 

 Joe then took a deep breath and went into the abbreviated version of he has type 1 diabetes and the ringing noise was from his continuous glucometer called a Dexcom.  Joe said the substitute then apologized and he added she was quite nice.

This is the third time something like this has happened this year.

I admired Joe's willingness to openly explain his medical condition and the technology that accompanies it in front of his peers to the substitute teacher.  He didn't appear to be too bothered by it.  To him it's part of it, of having t1d, the explaining himself.  Frankly, he knows no differently.

He will be put in this position where he needs to explain himself; to stand up for himself; to advocate for himself.  I think that is part of life for all of us.  Society does not need to handle Joe with kid gloves.  Friends, family, and strangers should feel comfortable to ask questions in a respectful manner.  I suppose... I guess what kinda bothered me about this situation for Joe is it was a potentially embarrassing scenario he was left to deal with, on his own, during the already awkward-y place called Middle School.  Not.Too.Cool.

I figured if I could lessen the frequency of events like this it was worth a try.  So, I emailed Joe's school nurse and requested the teachers add a note about his CGM to their sub binders.

Trying to save him a little bit of explaining about his day-in-the-life.

Sleep Drinking Talking

Last night...Or shall I say this morning at 1:37am-ish...

I'm doing the one-eye, half asleep, orange-juice-dispensing-via-a-straw-maneuver to a sleeping Joe.  He sleeps during night sugar dispensing.  He chews and drinks in his sleep.  Frankly, I kinda sleep through it too.  Sure, I wake up to the donging off of the Dexcom's alerts, and yes I plod to his room in the darkness of the night, and yup I lance and squeeze his fingers for some blood to test, and of course I then grab some sort of sugar to "boost"  him up. 

I do it all with one-eye partially open; the effect is a sense of doing it all while I'm sleeping, but I'm not...but...I am...but, I'm not. 

Back to last night.

I was holding the straw to his lips.  He sleep drank (like sleep walking, but drinking) and I was nodding off as I balanced the juice and the straw.  All of a sudden, a sleepily, soft "Happy New Year, Mom." startled me from my slumber.  Joe continued to sip and talk with the straw positioned at the side of his mouth.

"Happy New Year, Bud."

"Mom..."  (still sleepily drinking juice, as I'm still sleepily dispensing it) "when does the President take office?"

Juice is gone.  I'm not gonna talk politics with him at 1:40am-ish in the morning.

"Goodnight, Joe."

Our day-in-the life, even on New Years!  Happy 2016.

One Third (It's a BIG "Hunk")

In response to "Overkill or Good Diabetes Parenting?"

Store hours?  I wish.

I wish that diabetes management had like store hours or something.  Like maybe Joe's beta cells could "magically" come back to life from 9pm to like 8am.  Ya know?  Like every night Joe's glucometer and insulin pump and CGM could put up a "CLOSED" sign.

Yea...right...

What is 8/24?

I believe it is one third.

I believe it is one third of our 24 hour day.

If it is one third of our day~in~the~life of living with diabetes, guess what?  It is one third of our A1C.  I guess I shouldn't say "our"...it is one third of my child's A1C.  One third is a big hunk of my child's well being.

I am not going to be wishy-washy here.  I am not going to say do what works for you and your family.  I am not going to.   I am going to say that I think night checks are part of managing diabetes.  I don't do night checks solely out of fear of lows and out of fear of the dreadfully named "Dead In Bed Syndrome".  I also do them for trending blood sugars and adjusting basals accordingly.  And.  I do them for correcting highs as well.

It is a third of one's A1C  during a chunk of time that would normally have "predictable activity" (sleeping), with "predictable carbohydrate intake" (not eating, because sleeping), and with, for the most part, a "predictable amount of insulin" (no carb intake, because not eating, because sleeping) on board.

Our nightly routine here is:

Dave checks Joe's blood sugar @ 11pm (the following assumes no IOB and no CGM):

• If Joe's blood sugar is less than 70, we treat by using the rule of 15s.
• If Joe's blood sugar is 71-100, we give 8 grams of CHO
• If Joe's blood sugar is 100-250, we do nothing.
• If Joe's blood sugar is greater than 250, we correct and then set an alarm to check Joe's blood sugar in 2 hours.

Dave or I checks Joe's blood sugar between 2am and 3am:  We use the same actions as written above.

A day~in~the~life of managing my son, Joe's, blood sugar at night.

Sharkie

A couple of mornings ago...

I forgot that he was going to be getting them.  I remembered, yes...that the Orthodontist said that he may need a few braces on his top teeth to pull the disobedient tooth forward.  The Orthodontist stated that the said tooth would need to be shoved or pulled into position to prevent future possible "pulling" of the tooth and for "cosmetic" reasons to keep Joe's self-esteem intact.  I then proceeded to call Joe "Sharkie" (a nick-name I had given the tooth)...after that comment, the Orthodontist quickly realized that the said tooth would not be the cause of self-esteem destruction.

These new braces mean no more Starbursts for LOW treatments.  The sticky nature of the candy can pop-off a bracket in no time.  So, we are back to Glucose Tabs and juice.  This made me ponder our choice of Starbursts for treating the lows in the first place.  They are sticky ... probably not good for Joe's teeth, ya think?  Furthermore, the unwrapping of the candies must be frustratingly difficult for low, shaky hands and digits.  I will not be around to "mother bird" him forever.

A day-in-the-life of diabetes with braces.

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.

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'

The Interrupter, Refuser, Moper...

Pre-post Note:  Joe does not get into trouble at school.  This is an unusual event, where...in my opinion....the "low" trumped the reasoning for his visit to the Principal's Office.

"I thought it was all my fault mom." ... was stated in the sweet, soft, lispy Joe-voice... "I did not even think about my low or that the teacher would not let me see the nurse."

This infuriated me even more; Joe blaming himself.

Joe's daily log came home tucked in Woodchuck.  His numbers were documented.  Insulin doses were transcribed.  A visit to the Principal's Office was also written down on the log.  Apparently, he had to go see the Principal after his morning snack.  His pre-morning snack blood sugar was 66. 

Me:  "Joe, it says here that you had to go see the Principal ...  ...?  What's the story?" (questions were posed in a surprisingly even-tone by your's truly)

Joe:  "I was moping.  I asked my teacher if I could go see the nurse because I felt low ... I interrupted her; she was not happy with that ... she made me sit back down at my desk ... then I wouldn't do my math ... my head was on my desk .... I was mope-y-ish ... she then sent me to the Principal's Office ... the Nurse noticed me waiting ... checked a BG...66 ... " 

Me:  Trying to wrap my brain around the situation, "so you are saying that you asked to see the nurse because you felt low...the teacher made you sit down at your desk because you interrupted...and then sent you to the Principal's Office because you refused to do your math and you moped?"

Joe:  "I did not handle it the best."

Me:  "Did you not do your math because you didn't feel like it because of the low or because you were mad at the teacher?" and...by the way ... I don't know why I even asked this.  It is so, so, sooooo not the point.

Joe:  "My brain did not feel like it could do the math and I was angry.  I really did not handle it well."

Of course he did not handle it well.  The one person who he depends on...in the classroom... the gatekeeper to the nurse, to safety...was denying him access to help.  The "low" trumps the whole situation.  Of course he did not feel up to doing the math... there is a physiological reason for that.  Of course he moped...Joe can be a "moper" in normal situations...add on a low during a frustrating situation and you are gonna get some serious "mope-age".  AND!  Of course he went up to the teacher to ask to see the nurse.  He does not want to raise his hand and ask to see the nurse in front of the whole class.  He does not want to call attention to his "difference".  I GET it.  I GOT it. 

The following morning, as Joe and I were driving into school to rectify the denial-to-see-the-school-nurse-during-a-potentially-life-threatening-situation-situation, from the back seat a "Thanks mom... thanks for sticking-up for me."

Stuck up for him, I did.  It wasn't pretty.  I wasn't that calm.  Cool, I was not.  Collected?  Perhaps.  I was collected in my point.  Denial to the School Nurse is not an option when Joe feels low.  My voice was shaky.  It was loud.  I think I said I was "very upset" ump-teen times.  I did not cry though.  I felt like it.

My message to Joe throughout this ordeal was two-fold: 

1. Do not let anyone deny you access to sugar or to your supplies if you feel low.  You may whip out your glucometer and do a check and have sugar anywhere.  OR, you may walk out of your classroom and head to the Nurse.
2. I know this one doesn't seem quite right...BUT...I said something like "Joe, this is an example why you have to be on your best behavior all.the.time.  It will be easier for people to pick-up that you are "off" diabetes-wise, when there is an actual problem.  Maybe not the right message. 

A day-in-the-life of sticking up for my son Joe.

Tuff Mutha

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

We all know about this rule.  Who breaks it? 

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

A couple of days ago...

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

"Mom?"

"Yeah Joe."

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

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

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

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

"Please mom." (tears)

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

"Please mom." (tears)

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

"Please mom." (tears)

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

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

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

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

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

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

Close Call

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


A few days ago while sledding...

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

You can see where this is going...

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

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

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

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

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

The Waiting Game

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

This photo says it all...

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

**********

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

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

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

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

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.

Confidence

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


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

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

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

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

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

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

I walked away. My heart was light.

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

The "Double Low"

"I feeel soooooooo terrrrrrrrrrrible."

I could tell he was low by the way the "e's", the "o's", and the "r's" were drawn out and by the tone and pitch of his voice. It was 1:28am. Joe was stumbling into my room and climbing on top of me as I woke to his entrance. I released myself from the heap of Joe and hurried to his room to grab the glucometer.

He was moaning, saying it was a "bad one".

He was 50. The low was treated. Afterwards, Joe did not want to leave my bed. "My body won't work". I offered to carry him back to his bed, but the thought of that made him just groan and roll-over. He was on my side of the bed. I retreated to the guest room. Another alarm was set for 2am. Another alarm was set to ensure his blood sugar was in a safe range.

When he woke the following morning...

"That was a bad one mom; not a normal low. I don't get them often. But when I do ... I feel like I am a 20-something. That was what I call a double low."

I questioned, "A double low?"

"Yep, that is what I call those. I have only had a couple, but they are the really terrible, awful ones."

A day-in-the-life of understanding diabetes through my son's perspective.

How Long Has This Been Going On For?

Last night...

At 3:32 am....

I am awakened by the the bright glow of the hallway light flooding my room from the doorway, as Joe enters.

"Mom, can you cover me with a blanket? ... I just had a really bad dream..."

"Sure Buddy."

I got up. I followed Joe back to his room. I grabbed a blanket from his closet shelf and spread it over his lean little 8 year old body. I kissed his cherubic, dimpled cheek. I grabbed the glucometer and readied it for a blood sugar check. I lanced Joe's finger. The blood wicked up the test strip. 5-4-3-2-1. A 97 graced the screen. Dexter was showing a smooth trend-line. I picked up the Dex 4 container. Shook it a bit. Nothing. No sound. It was empty.

Joe then chimed in, "Oh, I just took the last glucose tab right when I woke up Mom ... Dexter was 71 with a diagonal down."

Too tired to process the information, I said goodnight and headed back to sleep.

This morning I addressed it. Apparently, Joe has been taking glucose tabs when he feels low in the middle of the night. He is not waking us up when he feels low. He reads Dexter and "boosts" accordingly. While I am encouraged by his independence and his diligence in avoiding lows, I am a bit concerned that he has not been letting me know that he is feeling low. And. His pump settings may be off a bit due to the fact that I have not been aware of his "nocturnal boosting". Great. I am livin' the dream folks...livin' the dream.

A day-in-the-life of reigning in Joe's evolving independence.

It Was A Bad One

Trying to "harness" Joe's exuberant energy level is an impossible task. I know this. I don't even know why I tried. I expended more energy yelling at him while I was trying to run and keep up with him. I should have just saved myself and only focused on the running part. He is what he is and it is one of the things I love most about him.

"Walking LEGS Joe!"

and...

"Joe WAIT!"

and...

"Joe SLOW DOWN!"

and...

"JOE STOP!"

.... were repeated over and over and over again yesterday on the Snake Mountain Field Trip. It rained. The trail was wet and muddied. Leaves camouflaged rocks and roots that inhabited the path. My eyes were always glued to Joe who seemed to go into stealth mode and would suddenly be like 80 feet ahead of me. I fell a couple of times. It rained. I got eaten alive by mosquitoes. No really...it was all good. Seriously.

I digress...back to the story...

While hiking, my friend said she had never seen me like this. She had never seen me so anxious about Joe. Odd how I am fine with him playing hockey, skating up and down ramps at skate parks, and careening down slip and slides while standing on boogie boards, but a damn hike in the woods sends me over the edge.

Let me explain.

I am afraid of losing my diabetic kid in the woods. I am afraid he will get lost. I am afraid he'll go low. I am afraid no one will be there to help him and he will die. Alone. It is that simple.

*******

The hike started at a Tasmanian-like pace. Joe was working the trail with vigor. He and his friend were chatting incessantly. I was keeping up while hanging and talking with a good friend. Joe seemed fine ... for awhile. We had boosted him with 20 grams of carbs on the bus and decreased his basal by 30%.

About 10 minutes into the hike, Joe was 180 and double downing on Dexter. He drank a juice and continued on at a generous pace for a bit. Then he took another look at Dexter. I could tell he was starting to feel "off". Whenever he starts peeking at Dexter frequently like this, he is in for some massive blood sugar swings... 140, still double downing. I performed my heroics as a life-sized human Pez Dispenser and doled out a couple of Starbursts and changed the basal reduction to a negative 60%. I suggested a "break" from hiking until the arrows stop plummeting. No. Joe will hear none of it. We continued on with our friends.

A few minutes later...

"Mom...my legs don't work."

Here we go. It will be a bad one.

Joe sat on the side of the trail. His blood sugar was 50. Dexter was showing a 40 and double-downing. He was dropping fast. We were in the middle of the woods in B.F.E. I encouraged our friends to move on. I didn't want to ruin their hike. Joe was chomping down Starbursts. I was kneeling beside him. As far as my eye could see, the trail was then uninhabited. I felt a teensy-tiny bit uneasy as Joe was pasty and his CGM was still showing a 40 with double arrows down.

Joe's voice snapped me out of my unease.

"Mom, you may need to carry me down the mountain. I cannot make it up."

This angered me.  Not at Joe. But at the disease; at the low. You see, my son ... my Joe ... is not a quitter. He would not back down from a hike. It isn't in his nature. The low was clouding his judgement and making him feel so weak that he was considering giving up.

"Joe, I know you feel bad now. Let's ride out the low. We are hiking this mountain. Has mom ever let you down before? You will feel differently in a couple of minutes Buddy. Hang in there."

With the pep-talk complete and a few more minutes under our belt and some good friends coming up along the path, we continued on our way up Snake Mountain. Joe made his way to the front of the pack and was with the first group that emerged from the woods; from the hike. Due to his speedy-hiking, I got the "added bonus" of sitting on the bus an extra 40 minutes waiting for the rest of the Third Graders to finish the hike. Yay me (in a "Livin' the Dream" ~ like voice).

A day-in-the-life of Type 1 Diabetes and Joe on Snake Mountain.

The Hill

"The way I look at it guys is that we have one of two options." We were faced with a dilemma on our "Adventure Ride" yesterday. Joe and I were in-line skating. Bridget was biking.

Bridget was glinting her eyes in the face of the blaring sun while trying to focus on me. Joe was crumpled by the side of a heavily traffic-ed road taking on sugar.

"We can either turn around and go back home on the same path that we took to get here. It is mostly down hill. It would be easier...blah...blah..."

"OR?" they chimed in.

"We can wait until Joe feels better and continue on up the hill. It is a big one. It will be challenging...blah...blah...blahbitty..."

As she was staring straight ahead and straddling her bike at the base of the steeply graded hill with the traffic whizzing by her, Bridget quietly stated under her breath "I hate Diabetes".

In a calm and amiable tone, Joe evenly stated "Me too Bridget."

I said nothing.

In unison, they agreed to take on the hill.

A day-in-the-life.