We Wouldn't Do This Again

At 8th Grade Graduation practice my daughter's class was told in no uncertain terms that they could not carry anything as they marched down the aisle. A two minute conversation would have led to her being allowed to carry her meter, but she didn't want to.  She wanted to walk in empty-handed like the rest of her classmates. Having a 'what's the worst that could happen- it'll all be fine,' moment, I acquiesced.  Here's what we did and why I wouldn't do it again:

Because the middle school's auditorium is small and infamously hot, the program was held in a large gymnasium at different school.  The kids were to arrive at 9 a.m. and meet in the building next door to the one where the ceremony was held.  At 9:30 they would process in and sit together in the front of the room.  The program was expected to last until about 11 a.m.

Creating a safe diabetes plan would have been easier with pockets as part of the equation, but she had a great dress to wear.  We knew a pump pack fit well underneath, but when we tried to add the Dexcom, there was an obvious bulge.  At least when we added a roll of glucose tabs tucked into the waist band of the pump pack, there was not. Those glucose tabs were our insurance policy.

We decided that she would check her blood sugar and make any needed adjustments in the car on the way to the ceremony. There had been no mid-morning blood sugar issues of late, which made us feel more comfortable with this plan. If at any point when we were not together she felt she was low, she would err on the side of caution and would (with a discreet move practiced before leaving the house) obtain glucose tabs from beneath her dress and eat a couple.  Then, once she was in the room with us, I would have the Dexcom and be able to signal her to eat glucose tabs as needed.  No problem.  Except these two unforeseen problems:

At about 9:25, just before the kids were to make their way into the ceremony, an audience member experienced a medical emergency.  There was a nearly half hour delay while the person was treated and eventually taken away by ambulance.  The kids were kept in their holding room in the next building over, too far away for the Dexcom to reach.  The half hour we'd expected to be apart turned into an hour.

Also, as we arrived at the venue, we learned that the kids would be seated in the empty chairs facing the podium, not facing us as we'd originally assumed. So there was no eye contact to be made and no hand signals to be used should my daughter need to be aware of a need for her hidden glucose tabs.

The story has a happy ending.  She left the ceremony with a blood sugar of 132, and a lovely award from the music department.  But in retrospect this was not a smart decision.  We should have had her carry her bag. Or asked a teacher who was supervising the kids in the other room to bring it over and slip it to my daughter once she was seated.  Or found a roomier dress with pockets.  As a rule, we don't even go around the corner without carrying a meter and a juice box.  Because as we were reminded on 8th grade graduation day, you never really know what's going to happen.

The Boy on the Field Trip

My daughter's 8th grade wasn't the only group visiting the family resort/camp on the day of their field trip.  After telling me that she hadn't talked to her school nurse all day, my daughter shared this contrasting story about a boy from another school:

There was another kid there with diabetes.  I felt so bad for him. I saw him out of the corner of my eye when I sat down for lunch.  He was a table over from us.  I could see him checking his blood sugar.  His nurse was hovering over him with her giant bag of stuff.  It took him a long time to check.  Then they got out a Calorie King book.  You know- not the app but one of those old books like we have on top of the refrigerator? 




Please rest assured we no longer use this alarmingly outdated 2003
COLOR edition to look up restaurant foods or packaged foods.
It's for fruit, grains, baking ingredients and other natural and recipe basics.

I could hear their conversation.  It was painful. They were looking up hamburger buns and macaroni and cheese.  It took them forever.  They came up with 65 first but the nurse decided that was too high (I think she was right) so they rounded down to 55 but weren't sure about that either. I thought about going over there and saying, 'a hamburger bun is usually 21 and half a cup of macaroni is 20-ish.  Enjoy your lunch.'  But I didn't.

I'm not even sure he'd started eating by the time we left.  I felt really bad for him.

We talked about what might have slowed this boy down.  The most likely scenario was that he was newly diagnosed and that this adventure was all new territory for him, diabetes-wise.  Or maybe he didn't eat out much and/or burgers and mac and cheese weren't on his usual menu.  Maybe his was a nervous nurse who needed to be sure they were taking care of his diabetes 'by the book.' 

Whatever the scenario, I understand my daughter's decision not to jump into the conversation. They probably would not have taken advice from another kid, and so her appearance would likely have just further delayed the poor boy's lunch.  She did wish she'd run into him later at one of the activities.

I do wish I'd seen him somewhere else. I would've told him that it'll get easier but I never saw him again.  I hope he didn't spend the rest of the day in the dining hall trying to figure out his lunch carbs.

The (Im)possible Field Trip

Something caught my eye as I skimmed through the school communications three years ago, at the end of my daughter's 5th grade year.  The 8th grade was preparing for its annual end-of-year celebration field trip.  They would be going to a family resort over an hour away.  They'd leave early in the morning and return around six at night.  There would be swimming, boating, a ropes course, tennis, volleyball, hiking and countless other fun outdoor activities.  Lunch and snacks would be served.  The only chaperones would be school staff.  And I thought, 'No way. There is no way she'll be able to participate in that.  The diabetes stuff is way too complicated.'

Last Friday I dropped her off in time to board a bus for the very same trip, without a second thought.  I made sure she'd packed well, filling a string bag with her meter, juice boxes, glucose tabs, smarties, and her dexcom.  She had a deep desire to keep her blood sugar in range so that she could play tennis, swim, and try the ropes course rather than spend any time with the nurse.  But the nurse was there, just in case, both to help if needed and to be a source of back-up supplies. Lunch was easy to count: hot dog and hamburger buns, pretzels, watermelon. The 8th grade teachers all know my kid, and they were stationed around the property to supervise the activities. I knew that they would help her if she needed it.

Especially considering what a big deal the idea of this trip felt like when she was a 5th grader, by last week it felt like no big deal at all.  It turns out she's come a long way in the past 3 years.  She can count carbs with the best of them, keep an eye on how she feels, carry her own supplies, troubleshoot problems and trust her own judgement. 

The only conversation she had with the nurse was at the door of the bus for the return trip home:

Nurse:  Hi!  Everything good?

Kid:  Yup!

Last Field Day!!!

This week marked our 9th and final field day. I never much liked it as a kid.  As a parent of a kid with diabetes, I like it less because:

It's always hot.  Dehydration and diabetes don't mix well.  Insulin and heat don't mix well.  And the whole 'am sweaty and weak because I've just run a relay in the sun or because I'm low' question is on replay all day.

Everyone is in constant motion.  The obvious risk of this for my child is exercise-induced low blood sugar, but there are other risks to her from the chaos.  Teachers are just barely keeping their groups together and the events going, let alone keeping an extra eye on my kid to potentially notice symptoms of low blood sugar.  My kid is encouraged to keep up with the group and less likely to have a moment to assess how she feels and use her glucometer or drink water as needed.  The nurse is busy because constant motion means constant bandaids and ice packs, which means my kid may find a line at the nurse's tent if she shows up there needing help.

The distractions are endless.  When she was little it was worse, but even today my daughter is still less likely to notice an approaching or full-blown low blood sugar when there are lots of other things going on.  The constant sensory input from the events, the people, and the novel outdoor setting could easily cause her to miss the sensation of dropping blood sugar.

Field day often includes a treat.  This week, for example, she played volleyball, did some activities on the track and then ate a popsicle at 11 a.m.  For the first 3 years of elementary school there was a pizza lunch between the morning circuit of games and the end-of-day tug of war and popsicle event.  Managing unusual and unusually timed exercise is challenging.  Managing unusual and unusually timed treats is too.  Putting the two together adds yet more variables to an already very complicated equation.

Field day got easier over the years as my daughter became more aware of and responsible for keeping an eye on her blood sugar.  Once she started middle school I no longer felt compelled to send extensive communications to the staff imploring them to look out for her.  And I've felt decreasingly anxious over the years that something truly disastrous would occur.  But this year, like most years past, she ended up in the nurse with a low blood sugar by the time it was over, and the following hours provided a line of peaks and valleys on her Dexcom graph. 

At least her team won the day.

Teenage Thoughts Interrupted

This is only a sample of what I imagine is circling through my daughter's mind, on repeat, every day:

when am I eating next
4x+y=47...where do I start
what's my blood sugar
when is that English essay due
we're running in gym today so I might be low
I wonder if Molly can come over after school
I'm sitting for an hour and a half in the assembly- I'll probably be high at lunch
I love the new Nick Jonas song
the school schedule changed for the day so lunch is really early- that'll mess up my blood sugar
should I get a new mirror in my room
should I have dinner before or after tennis so I don't go low
my piano recital is on Saturday
is it site change day
which dress should I wear for 8th grade graduation
why am I high
I need to get something for grandpa's birthday
should I ask all my friends to stop and wait for me while I check my blood sugar
why are my friends arguing over where to go for lunch on Friday
how many carbs are in this dish of Italian ice
are the Red Sox on tv tonight
should I correct again or will I crash because I might only be high from being nervous about the quiz
when are auditions for the summer musical
did I silence the dexcom or is it going to alarm during the concert
maybe I'll call my cousins tonight
why are there no clean measuring cups so I can measure my rice for dinner
that panda video is adorable
should I go to the nurse for this 69 blood sugar or just eat a couple of glucose tabs at my desk
should I ask for a new phone case
I need more dexcom tape
maybe we could shop for shoes for the 8th grade dance this afternoon
I have to bring more juice boxes into school tomorrow for the nurse's office
does the library have the book I'm waiting for yet
where did I leave the meter
is it my turn in words with friends with grandma
I have to remind mom that we need to reorder the pump supplies
should I post a selfie on Instagram today or is it too soon since the last one
maybe I'll just have cucumbers and hummus for snack so I don't have to count carbs
I'm so excited about this ancient Egypt history project
I can hear the alarm but where did I leave the dexcom
this box of tic tacs is almost gone

Banting!!!

My daughter has the opportunity through her school to participate in a scholastic competition called "National History Day." If you want to know lots about it, you can click the link.  But in a nutshell, students in middle and high school extensively research a topic within the year's announced category.  Working alone or in groups, they can create an enormous display board, a documentary, a website, a performance or a paper based on their topic.  They attend a regional competition where they present their projects, and from there can progress to the state and national levels.

This year's topic is 'Exploration, Encounter and Exchange.'  The sample topic list given to the kids was all over the map, with obvious choices like the pilgrims arriving in the new world and the work of Margaret Mead, to the seemingly only vaguely relevant like Pop Art and China's Explosion into Gunpowder.

"We're thinking of doing something that has to do with science," my daughter reported when she came home from school last week.  She and the girl she's teamed up with were considering Jane Goodall, Margaret Mead, Steven Hawking and ... Frederick Banting, discoverer of insulin.   "Exploration in Science:  Jonas Salk and the discovery of the Polio Vaccine" was one of the sample topics, and it got her thinking.

Yesterday they made the final decision: a website about Banting!  He was exploring scientifically, encountered a life-sustaining treatment, and the exchange is still occurring- allowing people with diabetes to live increasingly long and healthy lives.

I'm excited about this for many reasons: 

She'll learn about the guy who discovered the stuff that keeps her alive.

She discovered that this classmate she's working with has 2 relatives with type 1 diabetes, so a new little diabetes community connection has been made.

I get to spend the next 4 months immersed in information and ideas about something fascinating and near and dear to my heart.  This is refreshing since the knowledge I gained from last year's topic of Toussaint Louverture will benefit me only in trivia contests.

She has begun in November, and will continue into the spring, to spread awareness about diabetes.  Her project will be viewed by her classmates, teachers, regional competition participants and judges. 
And awareness is important, not only in November, but always!

Where My Rope Ends

The phone rang at 10:30 in the morning again.  I spoke with my daughter, trying to calm and reassure her as she finished her juice box.  When I hung up, there were tears in my eyes.

This kind of reaction doesn't happen often for me.  I'm ordinarily even-keeled and able to roll with the punches diabetes doles out on a daily basis. 

It's not the dramatic, emergency-type  moments that send me over the edge.  I'll treat a 30-something with great calm, and move past a night of high post-birthday cake blood sugars with a deep breath.

It's when I can start to see it in my daughter's eyes, or in this case hear it in her voice, that I lose it.

This was the fifth or sixth time she'd had to leave music class or gym (back-to-back favorite classes) to treat a low blood sugar.  It was the third day in a row.  She was mad. 

I'd been making what I thought would be helpful insulin adjustments. I'd even downloaded the Dexcom, which is a rare event around here.  But there she was.  With the nurse, while her two friends worked on the guitar trio as a sad duet.

And I sat less than a mile away, helpless, wishing things could be different.

Little Things

Some years, the 504 meeting has been formal and dedicated to big-ticket issues like being allowed to use a glucometer in the classroom or the procedures for standardized testing accommodations. 

This years issues are more trivial:

When a nurse is assigned to be present at an extra-curricular activity, could someone let my daughter know who it is?  Somehow this seemingly important step is being missed. My daughter usually takes care of her diabetes stuff on her own at after-school events and texts me if there's an issue, but if someone's being paid to help her, why not at least let her know who it is and where to go for help?

And, in what may seem to be a counter-intuitive follow-up question, could we please just put in the 504 that she is allowed to use her cell phone for diabetes purposes at extra-curricular activities?  The reality is that she does, and that the staff in charge of these programs know she does and are perfectly okay with it.  The school cell phone policy is that kids can use their phones at after school activities with permission from the person running them.  All I'm really asking is that that permission be granted through the 504 instead of her potentially getting caught texting me by an unfamiliar teacher involved in the play practice.

I'm incredibly grateful that things are going well and that there's nothing major to discuss.  But with an opportunity to sit down and advocate for my daughter to have a school experience as unencumbered by diabetes as possible, I figure it doesn't hurt to bring up little things.

 

Wandering Around Town

The latest bit of independence I've allowed my daughter is the freedom to wander around town with a friend or two.  The middle school is in the middle of town, and our house is just a few blocks from the main drag.  After school, the girls will sometimes stop to buy a snack before walking home.  On a half day or a weekend, they may walk around the park or go for lunch. 

We had this past Wednesday off for Yom Kippur.  My daughter and a friend walked around the park in the afternoon and headed home via the convenience store.

The phone rang an hour and a half into this expedition.

"I just stopped to check and I'm 62.  We're sitting on the grass at the edge of the empty lot."

"You had juice?"

"Yes- a whole box and I bought mini York Peppermint Patties at the store.  The whole bag is...let me check..."

"49,"  piped up a familiar voice in the background.

"Yup...49 grams...thanks. I'm only going to eat about half of it.  It's a lot."

"O.k.  Stay there for another few minutes and check to make sure you're coming up.  Then you should probably bolus for some of the candy if you're going to eat it on the way home or you'll end up high."

She was fine.  She was fine because she stopped to check her blood sugar.  But also because she had a friend with her.  A friend who knew about her diabetes, and who'd even learned to read a nutrition label.

I worry about her wandering around out there without a diabetes-savvy adult.  But in a way, I'm happy when something does go awry.  Because it gives her a chance to prove she can take care of it, and because it's so reassuring to know that her friends have her back.

Behind the Scenes of an Average Friday

On Friday, my daughter got up, had breakfast, got dressed, and went to school.  She had a test and a quiz there, ate lunch, and walked the track during gym.  After school she and a few friends stopped at a pizza place and went to the park for an hour before walking back to a friend's house. Once home, she practiced piano, watched t.v., ate dinner, and enjoyed dessert while watching baseball.  She was in bed before 10 and asleep soon there-after.

Sounds like an average 13 year old day, right?  Let's look a little closer:

On Friday, my daughter had her finger poked at 2 a.m. and was woken up to drink juice.  When she got up in the morning, she poked her finger again, chose among a limited selection of high fiber/high protein breakfast choices, and did some math problems.  She programmed her insulin pump and finished making breakfast.  She wanted to wear a skirt she likes, but decided that since a busy afternoon was planned, she'd be happier with her insulin pump tucked in the pocket of shorts so she wouldn't have to worry about it slipping off her waist band. 

She poked her finger after gym at school and was detoured to the nurse's office for juice before heading to take her quiz.  She finished the quiz while the rest of the class started the next lesson.  Before lunch she went back to the nurse to poke her finger again and program her pump using the note her mother put in her lunch saying how many grams of carbohydrate were in there.  A friend came with her to the nurse and they both arrived at lunch later than the other kids.

After school, she poked her finger again before walking to the pizza place. She really wanted to try the garlic knots.  This decision necessitated a phone call and several texts with her mother to discuss how many carbs would be in this snack.  After deciding they were close in size to half a mini bagel each, she programmed her insulin pump and ate.  She and her friends walked the block to the park and after walking around for a while, she poked her finger again.  She needed to eat some glucose tabs before walking to her friend's house.

When she got home, she poked her finger again, gave insulin for a high blood sugar, and drank a large glass of water to counteract the effects of the high.  Between piano practice and t.v. time, her mother used an enormous spring-loaded contraption to insert a sensor under her skin.  She hugged her stuffed rabbit.

She poked her finger again before sitting down for dinner.  After sitting down at the table, she had to get up again to get a measuring cup to make sure she ate the amount of rice she would take insulin for.  She then programmed her insulin pump to deliver a dose for the meal. 

During a commercial in the baseball game, she poked her finger and counted 10 mini nutter-butters into a small bowl. She debated whether she was still hungry and whether she wanted to add some apple slices to dessert and decided it was too much trouble to count and dose for them.  So she put on her pajamas and her insulin pump pack, since pajamas don't have pockets.

At around 11, her finger was poked one more time before her father went to bed, but she didn't wake up.  It had been a busy day...even busier than most people would imagine.

Nurse #6

I met the new school nurse last week.

Again.

Each time gets easier, though.

As she gets older, my daughter is less dependent on the nurse. By 7th grade last year, her usual interaction in the nurse' office was down to a quick 'hello.'  Gone are the days of needing daily 1:1 help to check her blood sugar and give her lunch bolus.  Her nurse needs are now limited to troubleshooting high blood sugars, helping with treatment of lows, occasional supervision of a site change or pump battery replacement, and ability to administer glucagon should the need ever arise.

While we want the nurse to know about diabetes and to be helpful in a true emergency,  the thing my daughter needs most in the nurse's office is to feel comfortable.  She needs to know the office is a safe, friendly place to go every day to check.  And even more importantly, she needs to feel good about going there when she's having a problem.

If first impressions mean anything (which I firmly believe they do), this year's nurse is a keeper. She was calm. On her first day in a middle school of over 700 kids, she was calm.  She was also kind, smiled easily, and asked a few very appropriate questions.  She talked about making sure my daughter took care of her diabetes as independently as possible while having all of the help and moral support she needed. She seemed like the kind of nurse who will make small talk with her through a low.  I don't think she'll hesitate to call me with a question.

As I left the office, the nurse had these parting words:  "I'll tell her, but you should tell her too: more than anything I want her to know she's welcome to come here any time.  My door is open.  I want her to feel comfortable here." 

I think she will.

Watching

This summer marks the first when my daughter is sometimes hanging out at the town pool without me. She and her friends gather there in the afternoon after their assorted camps and volunteer activities.  They bring snacks or money for the snack bar.  They play volleyball, swim, and walk in circles around the pool grounds to see and be seen.

For me, it's an exercise in trust.  First, I have to trust that our general routine and a healthy helping of good luck will keep her safe from any diabetes emergencies.  Second, I have to trust her that she will keep an eye on herself and be aware of impending lows so that she can treat them.  Thirdly, I have to trust that she will choose and bolus for her snacks wisely.  And fourth I have to trust that she will 'remember' to reconnect her pump within a reasonable amount of time after swimming.

I still like to go to the pool too.  On a hot day, some time in the lap lanes is my favorite form of exercise. When I can arrange to meet some other moms there in the late afternoon, it's fun to catch up. When I go, my daughter still sits with her friends and does her own thing.  Which is interesting to watch.

One day as I watched, she ate a cookie, and bolused for it.  She reconnected her pump after swimming, clipping it onto her bathing suit.  She checked her dexcom after getting out of the water the second time and grabbed a handful of goldfish crackers, later telling me she was 80 and felt like she was going down.

Another day I watched as her friends waited patiently for her to reconnect her pump and gather her little bag before they headed for the snack bar after a swim. She bought sour patch kids and bolused for them, as evidenced by the blood sugar of 77 when we got home for dinner.

Would I rather she bring a container of grapes or pre-portioned packages of whole grain crackers to snack on?  Of course.  Do I worry about whether she's going to forget to reconnect her pump and end up super high?  Yes.  Do I wonder if she's relying too much on the dexcom and not actually checking with a meter while she's there. Sometimes.

But here's the thing:  She's coming home with nice looking dexcom graphs and excellent pre-dinner blood sugars.  She's obviously responsibly reconnecting her pump and bolusing for the junk food.  She's noticing when she's trending low and grabbing a handful of something to stop the slide.

Really, this is a great opportunity to practice dealing with all kinds of diabetes issues on her own.  She'll make mistakes this summer, I'm sure.  I've made my fair share of them over the past 12 years when I've been in charge.  Nobody's perfect.

But so far so good.

Baring It All

I'm incredibly proud that my daughter is willing to bare it all at the pool.

Said no mother ever.

Except me.

She's not really baring it all all, of course.  But she decided this spring that she really wanted a bikini.

Many sentences uttered at our house now start with, "All of my friends are...," and I was informed this spring that all of her friends would be wearing only bikinis at the pool this summer.  This was a big step for two reasons:

While some girls wear bikinis from the beginning, my daughter never had, so this was a milestone in terms of growing up.  Despite our concerns about finding bikinis appropriate for a tween/young teen, we found two very cute ones.  Ruffly tops and bottoms with plenty of coverage are out there if you look long enough.

The second concern, of course, was the increased obviousness of the diabetes paraphernalia.  About this, my daughter decided she simply didn't care.  Wearing a bikini trumped any concern about the dexcom sensor taped to her belly and the insulin pump clipped to her bathing suit.

My daughter has so far had more people ask her about the dexcom and  pump at her morning summer music program (where it's generally in her pocket or clipped to her waistband under a t-shirt) than at the pool. Perhaps we'll keep a running tally.  When asked, she has a couple of short answers prepared, and is able to move on without much fanfare.

The only comment I've heard so far was from a mom I know tangentially, a friend of a friend, who came up to me and said, "I just wanted to tell you I'm so impressed with her wearing a bikini and not caring what anyone thinks.  I think that's just great."

At 13, it's an impressive decision to make. As a rule, these are the years of trying to fit in, the years of "all my friends are."  So I'm proud of my daughter for baring it all at the pool.  I'm proud that she's comfortable with what she looks like, taped on contraptions and all.  I'm proud that she's willing to answer the inevitable questions.  I'm proud that she's not going to let diabetes stop her from doing something she wants to do, however relatively trivial this particular decision may be.

I still have mixed feelings about this. Watching my little girl walk past me at the pool in her bikini makes me do a double-take every time.  But it has nothing to do with the dexcom sensor.

Rules Are Rules

I'll need to stop by the school this week to pick up my daughter's diabetes supplies from the nurse's office.

I'll empty the bin full of test strips, lancets, infusion set supplies, juice boxes, glucose tabs and the glucometer into a large shopping bag. I'll be given the insulin from the fridge.

My daughter isn't allowed to carry this stuff home.  Only a parent may pick up medical things from the school.

She is, of course, allowed to carry these items with her in her purse or on her person every day.  She brings or wears them to school, has them with her all day and then brings them home.

But somehow these ones in the nurse's office require my special loving transportation.

I'm Doing What?

For reasons we're not privy to, the regular middle school nurse has not been at school lately.  Instead, the school has been offering a 'nurse of the day' program for the past 2-3 weeks.  Since we're in our 8th year of school nurse use in this district, we're very familiar with the substitute nurse rotation and with the regular nurses on staff throughout town.  My daughter has seen most of them as the school year closes down.  She was particularly happy to see a couple of faces she hadn't seen since elementary school.

Then the day finally came when the list had been exhausted and a new face appeared.  Loosely in my child's own words with animated facial expressions to match, this was the experience:

I walked into the nurse's office and there was a nurse there I'd never met.  She was wearing silver leggings- like sparkly, really-, a white shirt with a black cloud on it, and a very bright neon yellow sweater.  I went straight to my box of stuff and started to check just like I always do.  She didn't say hello but she was just staring at me.

"I have diabetes," I said.  "It's my lunch time."

"Oh, so you're monitoring your blood glucose then?"

"Um...yes."

Um...yes.

And um...yes, this phrase is sticking around.  Prior to all meals and other checking scenarios, we'll make sure to remind my child to 'monitor her blood glucose.'  It's very, very important stuff.

Efficient

"People with chronic conditions are able to lead efficient lives when they effectively treat their disease."

This is a loose quote from my daughter's Health class notes.

I was helping her study for her quiz on non-infectious diseases.  The notes about the two types of diabetes were accurate, if vague, but this sentence gave me pause.

The Dictionary.com definition of efficient is this:

performing or functioning in the best possible manner with the least waste of time and effort; having and using requisite knowledge, skill,and industry; competent; capable

I suppose most of this is truer than my initial reaction assumed.  With the requisite skills and competency, people can manage chronic conditions and live well.

But I still struggle with the 'with the least waste of time and effort' part.  I suppose it's not 'wasted' per se, but managing diabetes takes an enormous amount of time and effort.  So much so that it decreases our efficiency in many other tasks.

Diabetes decreases my daughter's and often our entire family's efficiency in:

-preparing and eating a meal

-getting out of the house to go anywhere, even a walk around the block

-taking a shower

-getting in and out of the pool

-ordering and eating a restaurant meal

-getting through airport security

-packing for vacation or even a day trip

-any task which is sidelined by a low or high blood sugar

-sleeping through the night

And that list barely grazes the surface.  So yes, we're grateful that she has the tools to live well.  But sometimes diabetes still slows us down.  Efficient still isn't a word I'd ever choose to use to describe life with diabetes.

Snack Time

I hear a lot about teenage boys.  They're always hungry.  You can't keep anything in the house.  Buy out the snack aisle before you even consider inviting their friends over.

What nobody every clued me in to was that the same is apparently also true of teenage girls.  Maybe it doesn't last as long, or maybe I'm encountering a particularly hungry bunch.  But these kids are ravenous.

A bunch of friends came over on a recent half day.  Each one had bought a sandwich or a bagel at one of a couple of eateries on the way home from school.  They sat around our dining room table and ate them. Completely.  It wasn't long ago that I'd have 6 girls here for lunch and there'd be half bagels, large portions of sandwiches or the bulk of the pizza I'd ordered leftover.  On this day, there were napkins and crumbs.

Half an hour later my daughter emerged from the basement playroom (hang out room? rec room?  what do we call it now?).  "I'm bringing down the popcorn chips."

Within half an hour she returned with a bowl containing only a hint of popcorn dust and absconded with over a pound of grapes.

Pretzels were next, enough to fill a large sized salad bowl.  Crumbs and salt covered the bottom half an hour later when it was returned for a refill, and again when it was cleaned up as the girls went home.  Presumably they, like my kid, proceeded to eat full dinners and ask for dessert.

The whole experience felt like a cross between feeding cookie monster and a pack of wolves.  Food disappeared instantaneously.   Crumbs and dust were left in the wake.

The diabetes link in this post, you ask?  It's a challenge to bolus for this kind of grazing.  Up to a year or so ago, I just didn't allow it except at the occasional party.  Snack time involved a bowl, careful counting or measuring cups, and a nice solid bolus.  And on a regular basis, that is still the preferred procedure here.

Somehow, though, she managed to count and bolus enough of her snacks to end up with a very good blood sugar by the time her friends went home and she started asking what was for dinner.

From The "It Gets Easier" Files: Sleepover

My daughter came home Friday with a request.  She'd been invited to sleep over at a friend's house that night.  Could she go?

The first sleepover terrified me.

A few subsequent ones caused significant anxiety and loss of sleep.

There was one for which we had to say no.

But this one felt surprisingly easy.

It was at the home of her oldest friend, at whose house she's slept several times before.

It's just a few blocks from our house.

The mom would never hesitate to call me about anything.

She'd eat dinner at home first and then go.

The house is always stocked with plenty of pre-packaged snack choices with their easy to use nutrition labels.  Since sleepovers and snacks go hand in hand, I'll take well-labeled junk food any day.

She'd have Dexi with her, which wasn't the case at the earliest sleepovers.

So aside from considering the next day's plans and the potential ramifications of sleepover-related lack of sleep, there wasn't much to think about.

"Yes. You can go." was an easy reply.

She checked on the way to her friend's house.  She texted me at 11 with a 'bedtime' number.  She texted me when she woke up at 7:30, and at before breakfast with a carb counting question.

The half an hour or so before 11 when I was struggling to keep my eyes open until her goodnight text was long.  The 45 minutes I was awake waiting for her good morning text was longer. Overall though, it truly felt like no big deal.

Would I still say no to an overnight 2 hours away?  Probably.  But small steps are being made for both of us, and that's a good thing.

Why We're Not In The Cloud

Making mistakes and learning from them is, in my opinion, part of being 12.

When my daughter says, "I don't need to study for the quiz. We reviewed in class and I've got it," I say o.k. When she puts off a chore until the last minute, I don't nudge.  When she's upset by the results of these decisions, we talk about what happened and she learns from her mistakes.

When she came home the other day with a blood sugar of 282, we had this conversation:

"Didn't Dexi alarm?"

"Yeah, but I was only 200 and I was in art and my hands were all gross."

"O.k., but now it's over an hour later.  What could you have done differently?"

"Checked after I cleaned up."

"Yeah...you'd probably be lower by now if you'd corrected, right?"

"Yeah. I'll check sooner next time."

In this scenario, she made some decisions.  They weren't great ones.  But we talked about it, calmly, and I'll hope that the next decisions she makes in these circumstances are better.  Had I been watching that CGM graph on my mobile device in the hour before she got home*, I'm not sure I would have handled the conversation as calmly. I may not have seen the opportunity to let her take a lead in problem-solving for next time.  I would have spent that hour getting increasingly irritated that her blood sugar wasn't coming down, and probably would have texted her to test and correct as soon as she turned her phone back on after school.

In the scenario we've chosen, the numbers are hers to deal with in the moment they occur.  Then, help is available if she needs it.

She knows she can text or call me whenever she needs my help. The nurse is there all day at school, and my daughter doesn't hesitate to stop in her office.  The Dexcom receiver reaches our bedside tables so she can have the night off from responsibility.  But when she's at school or out with friends, it feels like it's time to let her flutter around outside the nest a bit. We watch carefully from a short distance ready to come to her rescue whenever needed. Once she's home we talk about any glitches that occurred and about what she could do differently next time. For her, this seems like a great way to learn all she'll need to know when those safety nets aren't around anymore.

If I had a kid who regularly ignored highs and lows I'd think differently.  If her Dexcom receiver didn't give us readings when she was in bed, I'd think differently.  If she was littler, I might even think differently. If at any time I feel she creeps over the line of 'learn by doing' to a place where her safety is compromised, I'll not hesitate to reconsider all of the technology available to us. Everybody's experience with diabetes is different and we all need to do what works for us at any given time.

For now, though, this is what works for us.

*If you're unfamiliar, an explanation of 2 CGM in the cloud technology options are here and here.  Essentially it enables the data from a continuous glucose monitor to be sent to a designated smartphone so that there is another set of eyes on the information.

The Departure

The e-mail from the principal was an unpleasant surprise.  It informed us that "Mrs. Nurse You Have Now" will soon move on to a new opportunity and that "Mrs. Nurse You Don't Know" will be taking her place.

We've done this before.  In third grade, the "Best School Nurse Ever" retired. We spent 4th grade with a professional and well-meaning person who could never have filled her shoes no matter how hard she tried. At the end of that year, we met the middle school nurse and decided we really liked her, only to receive a letter in July saying that she'd been replaced.

It turned out that this new nurse, currently referred to as "Mrs. Nurse You Have Now" has been wonderful. We have specific expectations of a school nurse, and she's met them all:

First and foremost, of course, is to know what to do in a real emergency.  Know how to use glucagon. Be willing to shove a glob of glucose gel into my child's cheek if needed.  Know when she's low enough that she needs to sit in the office for a little while longer.

Train the staff.  Provide enough information to my child's teachers so that they know what to do when she is experiencing a high or low blood sugar. Make sure the lunchroom staff isn't going to interrogate her about taking her last 2 pretzels out to recess.

Trust us.  We will provide the physician's school forms every year.  Once they're in the folder, please listen to my child, and to me.  If we're having a week of low blood sugars, please let her shave a few tenths of a unit off of her lunch bolus.  If something bizarre happens with the pump, call me.  If she's 105 but still claims she feels low before gym, let her eat something.

Last, but of utmost importance, be cool.  My child has to spend an extraordinary amount of time in the nurse's office.  She's there every day at lunch.  She has to hang out there whenever she's low.  She needs good company.  She needs someone who will a tell her a funny story, who will ask what she did over the weekend, who might even offer a hug if she's having a tough day.

So we'll spend the next week on 2 projects.  We'll try to accelerate our progress on eliminating this fall's round of low blood sugars, so that my daughter doesn't get roped into providing a full-scale orientation to this new employee while spending hours on end in her office.  And we'll think up a lovely parting gift for "Mrs. Nurse You Have Now," to thank her for 2+ years of helping diabetes interfere as little as possible in my daughter's day but for being there-and being cool-when it did.