The Tightrope

I started a blog post almost a month ago and the first sentence was ... Just last weekend Ben was invited to a sleep over ... Since I started typing that sentence it seems life got very busy and for the first time, in a very long time, Diabetes has not been dominating all my thoughts, which really is a great thing.  But I miss writing and this blog ... And so I am back.  Back to finish that half written blog about Ben's big sleepover!  Here I go ...

Just last weekend month Ben was invited to a sleep over.  Since Ben's diagnosis he has had a handful of sleepovers, all over at his best buddy's house with his best buddy's parents waking up for his middle of the night BG checks. But he has slept over NO where else, not even his grandparent's house.  We have always been hesitant to allow him to sleep over anyone else's house ... to be honest, a few years back we had one very scary middle of the night incident (like really, really scary) and Jeff and I were a bit traumatized.  So when Ben received this invitation for a sleepover my first thought was ... No way.

But that was not the answer Ben was hoping for and it was not the answer he was going to settle for. Ben promised he would take good care of himself and with his handy dandy new CGM he would keep a close eye on his BG.  Then he gave me his pouty face and said “Pleeeeease.”  I quickly caved, like I always do when he gives me that look, and we RSVPd … Yes.

Now to make this work we had to make a few decisions.

First, the day of the sleepover Ben had a hockey game scheduled.  I reminded him that managing his BG overnight after a game can be tricky business.  Ben quickly suggested he skip the game.  With that settled, we agreed to a few more rules.

1. You must check your BG before eating
2. If you question a carb count, text me
3. If you question if you need to correct a BG, text me
4. Before you go to bed check CGM and text me
5. Don’t forget your cell phone so you can text me!

 

Ben happily agreed to the rules and then asked, “What should my number be at bed time?”

Now this was a tricky question for me.  Ideally we like Ben to be around 120 before bed.  For the most part Ben’s BGs hold nice and steady all night (as long as he didn’t have a hockey game that day.)  The steady line on the CGM always reminds me of tightrope.

But, and that is a big BUT, unlike the Great Wallendas, we still occasionally fall off the tightrope.  Sometimes we see inexplicable lows in the middle of the night.  Yep, this is my greatest fear; Ben falls of the tightrope without Jeff or me to catch him.

Except … there may be an easy answer here … you can’t fall off the tightrope if you never get on it!  Maybe, for this one night only, it will be OK for Ben to go to bed with a much higher BG than 120. (I want to make it clear here, I am NOT a doctor, a nurse, or a therapist.  I am just a mom.  So please don’t take this as expert advice!)  In the end, Ben and I agreed the night of his sleepover his target bed time BG should be greater than 150 and closer to 200.

Fast forward to the night of the sleepover … I drop a very, very happy Ben off at this buddy’s house.  I run through a quick T1 training with his buddy’s mom.  Basically, I tell her, Ben is in charge.  I just ask her to keep an eye on him and if she has any questions at all please call/text me! 

Ben did everything we asked.  He checked himself, counted all his own carbs, and texted me through the evening.  We never corrected any highs and let his BG stay around 200.  Now I know these aren’t ideal numbers, and his high BG likely was harming his body in some way … but he got to sleep over at a friend’s house.  And he got to do that without his mom or dad hovering around and pricking his fingers.

Even though the sleepover worked out, I still worry we may not have made the best choice.  I worry that I have set a bad precedent.  Even though we are right back on that tightrope, I have now shown Ben that it’s OK to just not worry about his diabetes for a time.  I worry that my future teenage Ben might throw this all back in my face. But then, T1 does come with a whole boatload of worry!  So I think I will just add this new worry to the pile.  And for now, I will be happy that for one night Ben got to be just a kid! 

Date Night ... sans T1 babysitter

Since the hockey season began in August, Jeff and I have been waiting for a free Saturday night, a Saturday night we didn’t have to drive anyone anywhere.  We were hoping to have a proper date night.  And this date night we decided we would not call our T1 babysitter.  This date night we would leave the boys alone and Ben, along with his older brothers, would be responsible for managing his diabetes.  We figured after 4 years the boys should be able to handle it.  This would be as much an exercise in empowering Ben as it would be an exercise in us letting go.

Fast forward to last Saturday night, our first free night.  Jeff made a reservation at a local restaurant (within my 5 mile allowable radius, just in case.) 

This Saturday was also the first day Ben started using his new Dexcom CGM (more about that in my next post.)  Most of the day Ben and I spent watching the lines and arrows on the CGM.  This was good stuff!  At his brother’s baseball game the CGM even alarmed and caught a potential low.  Ben was loving it!

After all our day’s sporting events were over, I fixed dinner for the boys and then got dressed for our own dinner out.  Before Ben ate his dinner he was 120.  The CGM was just about on target.  When it was time for Jeff and I to leave Ben was feeling confident.  He knew what to do, his brothers knew what to do and he had his CGM.  So I said a quick prayer, crossed my fingers, and Jeff and I left the boys alone.

We arrived at the restaurant five minutes later (like I said it was really, really close to the house.)  As we sat down at our table I placed my iPhone on the table.  I know this seems rude (I am certain that’s the waitress thought as she gave me the evil eye), but I am a T1 mom, so too bad.  We then listened to the waitress-with-an-attitude-problem tell us the specials for the night ... pork with apple chutney, a fish I had never heard of before … tweet, tweet, vibrate

I am 57

Deep breathe (and another for good measure.)
Remind myself … we can handle this.

We spent the rest of the evening texting ... through appetizers (mussels, they were delicious), dinner, and Jeff’s chocolate canapés.  As each course was served we questioned, “Should we leave now?”  But we didn’t.  We figured Ben’s next text would say he was back up.  We just needed to wait 15 more minutes.  But once the bill came, we still had not received a text with a BG that was higher than 84.  So we skipped watching the Red Sox game at the bar and raced home.

When we got home, Ben was happily sitting on the sofa watching Minecraft videos.  Ben was fine.  He was still hovering in the 80s.  I checked his shiny new CGM and I had to take a picture.

After I changed (put on my comfy pants) and sat down to watch the Red Sox I finally relaxed … and reflected.  I figured there were 2 possible lessons to take from the evening's events:

1. We are the worst T1 parents on the planet and we should never, ever leave Ben alone again!


2. We did it!  Jeff and I were brave (Yeah us!)  Ben managed his own low like a champ (Yeah Ben!)

I spent the rest of the evening playing mental ping pong, flipping back and forth.  Every time I convinced myself to embrace Option 2, the guilt of Option 1 would slowly creep in.

How could we have been so foolish? 
But Ben is fine, he did great! 
But something really bad could have happened? 
But it didn’t, and if he had his brothers were there to help.

As you can imagine, it was a painful evening for me.  But with time, a week later, I feel more confident that Option 2 is my take away lesson.  So Jeff and I are searching our hockey calendar for another free Saturday night and we are going to try again.  And hopefully this time, we can actually talk to each other about something other than BG numbers and even stay later to watch a game at the bar … Go Red Sox!

Complications

A couple weeks back a very dear friend (and fellow Team Ben teammate) came up with an idea to raise some additional dollars for JDRF.  She owns a dance studio and was hosting an open house.  She suggested that Ben and I come with our Team Ben posters and as an entry fee she collect donations to JDRF.  I was so touched by her generosity and support.  Ben and I happily agreed.

The morning of the show I dug through my stack of posters I have used at previous Team Ben fundraisers.  I chose some fun pictures of Team Ben at the triathlon and others with facts about T1.  Ben and I put on our Team Ben t-shirts and packed up the car.

When we arrived at the studio and as we unpacked the car I asked Ben to hold out his arms. One by one I stacked the posters on his outstretched arms and then asked him to carry them into the studio.  I, of course, was a little anxious (I hate speaking in public) and I did not pay close attention to how I stacked these posters.  So as we were walking across the parking lot I was startled when Ben asked, “Mommy, what does complications mean?”

Right on the top of the stack, right under his nose, with no where else to look, I had placed this poster:

 

ACK!  You idiot!

In an attempt to hide my crushed mother-heart, I nonchalantly replied, “Oh, those are just some of things that can happen to some people with T1 who don’t take good care of themselves.  But don’t worry too much.  You are doing and excellent job.”  And then like any true coward, I walked away ending the conversation.

Up until that very moment we had never discussed T1 complications with Ben.  Complications were things that happened to other people.  We have always focused on the very, very short term … today.  Ben knows what his blood sugar should be and he knows if it goes to high he feels badly and if it goes too low he feels really, really badly and scary things can happen.  That has always felt like enough for a young boy to worry about.  And to be honest, that was enough worry for me too.

Thinking about potential T1 complications is something I have always purposely avoided.  I know they exist but giving them anymore thought has always been painful, sad and most of all SCARY.  I have spent hours (and hours) reading text books and researching how to properly manage blood sugars, but I have spent less than 10 minutes trying to understand potential complications.  And those 10 minutes were spent creating this poster.  I googled  “type 1 diabetes complications”, found this list and created the poster.  And to be honest, I don’t know what half those words really mean.

Fast forward to this week, I had an appointment to see my eye doctor.  Jeff had recently brought Ben to see the same doctor for his first real eye exam. Neither of us really understood what the doctor was looking for in Ben’s dilated pupils.  We knew we were supposed to bring him but it was never clear to me exactly why. 

As I waited for my pupils to dilate and waited for doctor, I thought about Ben, his eyes, his diabetes, the poster, and his questions.  Eventually, the doctor entered the exam room.  He shined lights into my eyes and quickly concluded everything looked fine.  As he was typing his notes into the computer he asked, “Do you have any questions?” 

I was about to say No, but I didn’t.  I decided it was time to be brave.  I started with a fairly long drawn out, “Well …..”

“I do have a question … but not about me.  It’s about my son.  He has type 1 diabetes.”

“Oh, what would you like to know?”

“I know one of the potential complications is eye damage, but I don’t really understand what that means.”

“Yes, a potential complication is retinopathy.”

“Right.  But what is that? … other than a very scary word.”

The doctor was so sweet.  He pulled up a picture on his computer of an someone's perfectly healthy eye ball.  He showed me all the blood vessels.  He explained that high blood sugars can cause small hemorrhages.

“And does that kill the eyeball and cause blindness?”

“Not exactly.”  He explained that the hemorrhages cause the blood vessels to contract and tighten up which in turn can cause the retina to detach.  “But,” he quickly added, “we can treat this.  There are lots of new treatments that we can do right in this office.  We should see your son every year and if we see any problems we will treat them right away.  If your son develops retinopathy it does not mean he will become blind.”

He added years ago within 15 years of diagnosis someone with type 1 we would develop retinopathy.  But he reassured me that he sees lots of patients that have lived 15, 20, even 60 years and their eyes are perfect.

I thanked him.  And as I was starting to pack up my things he said, “Diabeetus, is a tough one.  Good luck.  I will see you and your son next year.”

I felt so much better.  This doctor had turned a very scary word, retinopathy, into what it really is … just a complication … a complication we can handle.

Knowledge really is power.  I can no longer live my life believing bad things are what happen to other people.  We already have proof that just isn't true.  So I figure I can’t stop here. 

Next up … What the heck is nephropathy?

The Sweet Spot

Phew … Sick week is over.  I sit here at my kitchen table sipping my bulletproof coffee (that’s for all the Whole 30 fans) after giving Ben his third dose of antibiotics and finally relax.  The week started off well.  After our endo appointment last week we made a few adjustments to Ben’s pump settings and … Voila! … We were seeing the best BG numbers EVER, no numbers over 150, without even a single 275 or 321 sneaking in.  I even began to think … Maybe we have this?!  Maybe out next A1c check will come with a few gold stars and a high-five for good measure.  We had hit our T1 sweet spot!

Then comes Wednesday, hump day, apparently, we had reached our peak and now it was time for the downward slide, fizzle, putter, crash.  The day started simply, everyone waking up and getting ready for work and school.  Because I am the slowest waker-upper in the house I was still in my room when Ben came knocking on my door.  He immediately, laid down on my bed and whines that he couldn’t eat breakfast because his tummy hurt.  I responded with a very unsympathetic, “Seriously?!”  He then begged me to take him to the doctor.  Since I do have heart (he is my baby) I told him to lie down and I would call the doctor’s office.  But before I did so, I had to ask, “What was your morning BG?”  “75”

Now 75 on Monday and Tuesday would have been great, but not today.  Being low and having a belly ache is not a great combination.  No longer I am I hoping for our sweet numbers from Monday.  Now I would love to see a 175 or even 200.  On the way to the doctor’s office we check again … 82.  Ack!  We set a temp basal reduction (and I silently pray.)

During the doctor’s visit she asks lots of question about where the stomach pain is and what it feels like.  She asks him to sit on the table.  She checks his temperature (which is fine), she swabs his throat (quick strep test comes back negative) and checks his ears.  As she is peering in his ears she asks, “How is Ben’s diabetes?  Is it under control?”  Ugh.  My very, very most HATED question.  Usually, I answer with some snarky response, but not this time.  This time I say, “This week we hit the sweet spot.  We had the best numbers ever.  Not one number over 150.”  And yes, I was gushing with pride.  The doctor then says, “OK.  His ears look fine.”  What?!  Not a, Wow, you’re the most awesome T1 mother in the whole wide world? … Nope … instead she tells us she didn’t find anything specifically wrong, we should treat his symptoms and then sent us on our way.

On the way home we check Ben’s BG again … 78.  We lower his temp basal some more. The rest of the day goes the same way, unpleasant visits to the bathroom, blood sugar check that never hit 100, and more temp basal reductions.  Eventually, we make it through the day.  BGs are Ok and no visits to the emergency room.

Thursday morning starts off the same as Wednesday.  I am slow to get out of bed and Ben knocks on the door.  He still doesn’t feel well.  Another day home with me, except this day his BGs are sky high, 300s, 200s, never a 100.  Together, we make it through another sick day without a visit to the ER and Ben is finally eating again.  His high BG numbers continue through the night and into Friday morning.  But, Friday we decide it’s time to go back to school (and I need to get back to work.)  Finally, Ben is off to school and I am back working … until the doctor’s office calls.  Ben has strep.  He needs to come home from school and start taking his antibiotics.

And now today, Ben woke up with another high … 176.  Sadly, I think the BG sweet spot we had hit earlier this week is now gone.  We are back on the diabetes rollercoaster.  There is still hope that once Ben is 100% better we can find our way back.  But I have my doubts, because that’s not what diabetes is.  Diabetes is up and down and sideways.  But before I say, “adios” to our sweet spot, I want to revisit Monday’s numbers again.  Here are Ben’s actual BG numbers from Monday:

 

 

Ahhh … now that was sweet!

Sunday

BD (before diabetes) we were a typical family living in a typical American suburb.  We were active volunteers in our local school, church and pretty much every sports club in town.  We were very, very busy but we always made time for church on Sunday mornings.  I was certain we were doing everything “right”.   And our world felt just right.

Then came diabetes.  And it seemed as if the whole world had changed.  Before the world seemed like a place full of love and now all I saw was sadness and pain.  Now to be clear, I realize I wasn’t the one with the broken pancreas, but I am a mom and my heart was broken.  (And I mean shattered into a million little pieces.)

In this new world, our focus was diabetes, diabetes, diabetes.  We had to learn how to best take care of our son.   It was time to circle the wagons and focus on our family.  There was no longer time for volunteer work.  And Sunday mornings became a time to steal some extra sleep. (As any T1 family knows, taking care of diabetes is exhausting.)  What was left of my broken heart just wasn’t moved to go to church.  And slowly, over time our family just stopped attending Sunday mass.

It is now 4 years AD (after diabetes).  And we have adjusted to our “new normal.”  (I always hated that phrase.)  Slowly, my broken heart is mending and I think it’s leading me back to church.  So this past Sunday, I dragged myself and the boys out of bed and went to Sunday mass.  It was time to give it another try.  

The gospel reading for the week (yes, I am Catholic) was the story of the Prodigal Son.  When the priest started reading I thought … Hey, this is story of a man who left his family and then returned begging for forgiveness, maybe this is a sign, and maybe God is speaking to me.  So I sat up straight and forced myself to listen.  But then the priest read the story of the young son who asked his father for his inheritance and then ran off and squandered it on partying and extravagant living.  Wait that’s not me!  I haven’t spent the last 4 years partying.  My life has been quite the opposite. That sounds like fun but that’s not me.  And sadly I thought … this is not a sign.

But then, that’s not the end of the story.  After the son begs for forgiveness the father decides to throw a party.  Then enters the bitter older brother who complains he has worked hard and remained loyal and done everything “right.”  He then asks his father, “What about me?”  Ahhh, now this is sounding a little more like me.  I thought I was doing everything “right” too.  And maybe my broken heart was a little bitter too.  And maybe I too want to ask, “What the heck is going on here?”  Alright … now I am paying attention again.  How does this story end?  What does the bitter brother decide to do?

But wait … that is the end!?  We never learn if the bitter brother goes to the party?  I suppose the real question is what am I going to do?  Am I going to join the party?  I did, at least, open the door and came in ...

The truth is we are no longer the typical family.  Our world has changed (some it for the better).  And in our new world … which is filled with countless sleepless nights filled with too many highs and lows … sometimes sleeping in on a Sunday morning might be the “right” thing to do.  Living with diabetes has taught us a lot.  And one thing we have learned is … you have to take each day one at a time.  So for now, I will take each Sunday one at time.   And I suppose I will just follow my heart. 

The Conversation ... the school version

This year before the first day of school I again met with Ben’s homeroom teacher.  I was time for yet another “conversation.”  However, this year the conversation was very different from previous ones.  This year I brought NO handouts.  There were no diabetes 101 lectures.  I even, flat out said, “If you are interested in learning the details of Type 1 diabetes I would be happy to send her some literature and answer any questions she may have, but I did not bring any here today.”

I continued … paraphrasing of course … because there were a lot more stuttering and long pauses … I am not always the most eloquent speaker …

“Today I want to talk about Ben.  Here at your school you emphasize teaching the ‘whole boy,’ focusing on more than just academics.  Now for Ben … his ‘whole’ is just slightly bigger than the average student.  Ben’s ‘whole’ includes Type 1 diabetes.

“We have already walked through his care plan with the school nurse.  Ben is aware of what he needs to do throughout the school day.  What I ask of you is to understand that no matter what, sticking to this plan and this schedule will be his number 1 priority.  Ben, so far, has been very responsible and knows what he needs to do.  My hope is this routine (which we have followed the past 4 years) will become a habit, will become muscle memory.  So when he becomes a teenager and we lose him … and he starts the eye rolling and hating every word I say … if he fights us and fights his diabetes care … Ben will at least, in the back of his mind, know what he should be doing.

“You know the saying, ‘your health comes first’ … for Ben that will always be true.  Nothing he learns at school will be more important … no reading, arithmetic, or history lesson will really matter if Ben doesn’t live a long and healthy life.  And whether that happens is really up to Ben.  We just need to help him get there and support him along the way.”

Ben’s teacher was very sweet and whole-heartily agreed.  She asked a couple questions, about low blood sugars.  I explained because of Ben’s fairly calm demeanor it is very hard to see any signs of a low blood sugar.  I further explained if he sticks to his scheduled blood sugar checks most impending lows will be detected early … but if he does tell you he feels low, please give him a glucose tab and walk him to the nurse.   I then asked, “Please do not let him walk to the nurse alone.”
We then went through Ben’s schedule and joked about the evils of Diet Coke.

I then thanked her for time.

I hope this year I was able to stress the importance of sticking to Ben’s care plan while at the same time not freaking out the teacher.  What I don’t want is for Ben to always be “that boy”, the boy the teachers hope they don’t get assigned to their class.

I hope it worked … fingers crossed … only time will tell … and hopefully Ben has lots, and lots, and lots of time. 

Why is it so hard?

Back in January of this year, our family was invited over to a friend's house for a dinner party.  Early in the evening Jeff, Ben and I had to take a time out from the festivities for a “diabetes moment.”  At the time Ben was either too high or too low (I can't remember which) and we huddled in the corner of the kitchen deciding what needed to be done.  Eventually, when we returned to the party one of my friends asked me, "Can you explain to me again, why is it so hard to manage Ben's blood sugar?"

I did my best to answer the question ... but I knew I had failed.  I wanted to explain everything clearly, but my red wine muddled brain quickly became frustrated.  In the end, I said something silly like, "It's really complicated."

The following day I continued to replay this conversation in my head desperately trying to come up with a better response.

I think part of the problem is some parents, who luckily don’t live with T1, imagine insulin dosing instructions should look similar to the chart found on the side of a Children’s Tylenol bottle.

 

Instead of giving a child who weighs 70 lbs 2 ½ teaspoons of Tylenol, the chart on an insulin bottle would say something like for 50 carbs eaten give 2 ½ units of insulin.  But insulin bottles don’t come with a simple chart.  The dosage calculation is more complicated.

 

I decided what I needed for the next party was a pocket card I could pull out with a bolus calculation.  (That would be a pretty cool party trick.)  It would include all the variables that we consider when calculating Ben’s insulin dose.  In my head I envisioned the finished product looking something like one of the chalk board formulas from “Good Will Hunting.”

 

 

I thought that sounded like a fun little exercise. (I am a total nerd.) So I drew up this bolus calculation …

 

 

But I was unsatisified.

 

What I wanted to show was all the variables that can affect this calculation.  I also wanted to show how each of the variables are not quite that certain.  I couldn’t figure out how to incorporate all that variability into one calculation.

 

When you look at the chart on the Tylenol bottle the only thing you need to know is how much your child weighs, which isn’t a difficult thing to figure out.  All you have to do is stand on a scale.  But to calculate an insulin dose you need to know how many carbs are in a meal, the insulin to carb ratio, current blood sugar, target blood sugar, sensitivity factor, and insulin on board.  And the trickiest part is, other than target blood sugar, there is no way to know for certain what any of these numbers are. 

 

You can read the nutrition label to find the number of carbs, for example on a box of crackers, but that number is not absolute.  The carbs listed on a nutrition label can be off by +/- 20%. 

 

You can get your current blood sugar by using a glucose meter.  But again this is not an absolute number!  This number again can be off by +/- 20%. 

 

Then there is the insulin to carb ratio and sensitivity factor which your doctor helps figure out.  But again these numbers are not absolute!  These numbers vary during the day, change constantly (especially for a growing child) and in the end are only educated guesses. 

 

Trying to come up with this calculation proved to be less fun and more frustrating than I expected. I am certain even Good Will Hunting couldn’t have done much better. So in the end I gave up. There would be no fun party card tricks. I saved my formula … and then forgot about it. 

 

Until this week ... After reading fellow bloggers posts about the Strip Safely Campaign.  The basic complaint is that blood glucose test strips are not all that accurate and there is no post-market inspection of these strips. This campaign reminded me how difficult it is to calculate a proper insulin dose and how frustrating it was for me to even attempt to explain why. 

 

I hope (and pray) the FDA listens and figures out a way to ensure the accuracy of blood glucose test strips.  Because wouldn’t it be nice to have at least one of these variables be more certain.  And wouldn’t it be really nice if we had to deal with less “diabetes moments.”  But wouldn’t it be really, really nice if it wasn’t quite so hard to manage Ben’s blood sugar!

His cup is still half full

Summer ending
No more camp
Boys hang at home
While I work

Monday

Ben’s BGs are high
Too much Xbox and sofa time
Correct
And correct some more

Tuesday

Ben’s BGs even higher
Maybe it’s the set
After quick argument
Ben hates set changes
Change set a day early

Wednesday

Ben’s BGs higher still
Maybe it’s the insulin
Bottle near end
Plus, bottle took trip to Maine and back
Open new bottle
After quick argument
“I know we just changed set yesterday”
Change insulin and set

Thursday

Yep, Ben’s BGs still high
Now what?
Up basal to 120%
And correct, correct, correct
First hockey practice of season tonight
Exercise should help
Instead of another set change
Ben suggests playing outside
Get some exercise now

Ben plays catch with brother

30 minutes later
Falls through front door
Sweaty
Weepy
Says tummy hurts
Lie down on sofa
Finally decide to check ketones
Small amount
But a lot for Ben
Almost always 0

More insulin

Hockey practice in 30 minutes
Tell Ben he must rest
Bring down BG
Get rid of ketones
No practice today
Sorry
Tears

Jeff home from work now

Ask him to change Ben’s set
I must suck at set changes
Figure it’s all my fault
My T1 mom fall back theory
Soon Ben feeling better
Ketones gone
And a BG that starts with 1 and not 3
Everyone *sigh*

Later in the evening

After all the day’s T1 drama has been forgotten
Sit down with IPad
Scroll through D-blogs
Stumble on my post His cup is half full
Story from this summer’s FFL conference
When Ben states he wouldn’t want a cure
Fellow blogger Scott suggested
Being at awesome T1 conference may have affected his position
Makes perfect sense
Always wondered if that was true

Ben walks by

Stop him and say
“Hey Ben, I have a question for you”
Ben pauses ready for question
Suddenly, remember day’s events
Ketones, tummy ache, tears
Think maybe not best time to ask
Oops

“Mom, what do you want?”

“Ah maybe now isn’t the best time to ask”
“Ask what?”
Hmmm
Decide maybe now is a good time
Day total opposite of happy FFL day

“Remember at conference,

When you told me about Joe’s question,
When he asked you guys,
If there were a cure,
Raise your hand if you would take it?”
“Yep”
“Would you still not raise your hand?”
“Yep”
“Yep, what?”
“I wouldn’t raise my hand.
I am fine mom.”
Then Ben runs off
His turn on Xbox

Not the answer I was expecting

I struggle to understand
But I stop
 
I may suck at set changes
I may not understand Ben
But I do know this:
Summer camp good,
Xbox bad,
And Ben is fine!
He said so himself
So I am fine too

The Conversation

Last week Ben started a new off-ice hockey training clinic.  This is a new type of workout for Ben with a new coach. And much to my dismay I had to bring Ben to his first session which also meant I had to have the "conversation" with the coach.  The conversation that starts with "By the way my son has Type 1 diabetes ..."

When Ben was first diagnosed it was the fall of his first grade year.  He had just started playing soccer.  Before Ben showed up for his first practice I had emailed his coach everything anyone could ever want to know about Type 1 diabetes, including the good, the bad, and the very, very ugly.  His coach was very sweet and claimed he had read through all the documents I had forwarded him. 

I look back now and wonder what that coach was thinking when he first read my email.  Surely the thought "I wished I had picked some other kid to be on my team" must have crossed his mind.  How could it have not?

Since that first soccer season we have been through dozens of coaches between hockey, baseball, lacrosse and soccer and with each new coach we have had the "conversation."  But over time, maybe simply out of laziness or maybe out of wisdom, we have whittled the "conversation" down to a few quick sentences.

We start with an introduction (we are at least polite), "Hello, I am Ben's mom/dad."

Now it's important from this point on to remain cool (channel the Fonz), to avoid freaking the coach out and wishing someone else was on their team.

So we continue with, "Ben has Type 1 diabetes.  During his workout we will need to pop in a couple of times to test his blood sugar.  We need to make sure his blood sugar does not go too low.  But you do not need to worry, because either his dad or I will always be around to help him.  And if Ben ever says he feels low, please have him sit down and let us know right away."

This usually leads to the my-great-aunt-had-diabetes part of the conversation.  We discuss some confusing diabetes misconceptions and then we end with, "I am so sorry to hear about your great aunt. And thank you for your hard work and looking out for Ben."

That's it.  No handouts.  No lectures. 

But I still struggle with my T1-tiger-mom ways and always question whether we even need to have the "conversation" at all.  Maybe Ben's diabetes is really no one else's business.  Matter of fact, between Ben, Jeff and I we seem to be able to handle his diabetes just fine! 

Then again, last week, while Ben was doing his off-ice training and I was sitting in the gym lobby watching the clock and waiting for our next BG check one of the trainers approached me and starting asking questions about T1.  He then mentioned that there is another boy who comes to the gym who also has T1.  This boy is a teenager and comes to the gym alone.  The trainer then tells me that when the boy first started coming to the gym he did not know he had diabetes and occasionally the boy would tell his coach he needed to sit down and rest.  The trainer then explains that both he and the coach both assumed the boy was lazy and not very dedicated to his training.

Ahhh, my heart hurt for this boy.  There he was bravely taking care of himself and the people around him saw something quite different.  They saw a lazy, slacking teenager, when in reality the total opposite was true!

The trainer then finished his story telling me eventually he and the coach talked to this boy's mom and she explained his situation.  He said they were happy to find out the truth and also happy that they could help this boy.

It's funny sometimes when people share the exact story you need to hear at the exact time you need to hear it.  I do not judge the mom or this boy.  I totally get why they chose not to discuss the boy's diabetes.  I would love to avoid these discussions too, not only because they are exhausting, but because I always worry about the judgment and scorn that follows.  Which I promise we have suffered through ... But not always!  This trainer reminded me there are so many nice people out there who are eager to lend a helping hand.

So I will continue to have the “conversation.”  And I hope when Ben is a teenager and Jeff and I are no longer hovering around him he will have the “conversation” too.   The truth is Ben is going to need a little help throughout his life.  But really ... don't we all.  

The Right Side

Ah! Time for bed

Finally a cool night

Good sleeping weather

I make it to bed first, before Jeff

Decide, which side of the bed do I want tonight?

Left side, alarm side, middle-of-night-BG-checker side

Right side, sleep side

Chose right side

So tired

Pull down covers

Roll to my side

Sleep

Dream

  

BEEP! … BEEP! … BEEP!

2:30 am

Hear angry slap of alarm

Jeff throws back covers

Click of bathroom light

Setup pricker

Shuffle down the hall

Feel badly

But roll back over, anyway

Sleep

 

Krinkle … Krinkle … Krinkle

What’s that?

Ah, juice box straw

“Ben’s low?”

“No, not really, 85”

“How about setting a temp basal?”

“Just did that”

“Still need juice?”

Grumply reply, “I don’t really know”

Quietly reply, “OK”

Roll back over

Need to stop nagging

I chose right side

Sleep

 

Sun shines through blinds

Wake up

7:00 am

Shower

Come down stairs for breakfast

Ben already sitting at table

Jeff at stove cooking bacon

Ask, “What’s your number?”

Jeff snaps, “High”

Ben adds, “220”

Jeff grumbles, “I shouldn’t have given him the juice”

I try to reassure, “That’s OK.  We can fix now”

  

Silence

I walk to get coffee

Stand right next to Jeff now

Sadly this time,

Jeff mumbles again, so only I can hear,

“But I was nervous …

I was tired …

I just wanted to sleep …

And not be scared”

I pour my coffee

Then I mumble back,

“It’s OK …

I get it …

I chose the right side.”