Saturday, March 22, 2014

A Real Vacation

We just spent ten days in Puerto Rico, a real vacation. Since Ben’s diagnosis we have travelled to Florida for the Children with Diabetes conference and to California for a few weddings. (FYI … flying across time zones can really wreak havoc on BGs.)  But this trip felt like our first real vacation. We had nothing to do but enjoy ourselves. And somewhere along the way, I completely stopped worrying about BGs. I stopped obsessing about the line graph on Ben’s CGM and I was unphased by Ben’s nightly BGs floating in the 200s.

Now the vacation didn’t actually start off quite so stress free.

One of the very first things we wanted to do was spend a few days visiting the small island of Culebra, which is an hour ferry ride off the east coast of the main island of Puerto Rico. (I like to describe Culebra as the Nantucket of Puerto Rico.) The ferry departs the main island twice a day, first at 9:00 am and then at 3:00 pm. (That’s it!) We arrived two hours early to purchase our tickets. Unfortunately, that was no way early enough. We were greeted with a long line. One of those lines that wraps around the corner and down a couple blocks, the kind of line that when you get in there is no way to see the start.  This line was filled with locals, Puerto Rican tourists, American tourists, English tourists and Chinese tourists (among others). And most of us were unsure of exactly what was going on because the line never seemed to move. It only got longer. Occasionally, there would be an announcement over a loudspeaker that almost no one understood.  Oh … and it was hot!

While I stood in line, Jeff waited on a bench nearby with the boys and our bags. As I waited in line I chatted with my fellow hopeful ferry passengers. We learned that the early ferry only had room for 200 passengers and there clearly were more than 200 people in line. People started telling stories about how the government had recently cancelled the contract for the company that had run the ferry. Now the local government had taken over and things had gotten confusing. There was a rumor that they were only selling one-way tickets.  We would have to stand in line again to purchase tickets to come back.  And again there are only two ferries returning each day.

That’s when I started to panic!
 
What if something went wrong with Ben?
It’s happened before.
His insulin could get ruined from the heat
It is baking in the sun right now as I stand in line!
We only brought one bottle with us.
Our backup is in the frig back in San Juan.
What if there was an emergency?
We would be stranded with no ticket to return.
And even if we had a ticket we could be waiting hours for the ferry.
Maybe this was just the worst idea ever!
Maybe I should just give up, find some air conditioning and head back to San Juan?

Then one of the guys from the couple in front of me cut back in line.  He had left to make a call to the local airport.  He was trying to find another way to the island.  Apparently, you can catch a plane to Culebra.  The flight was too expensive for them (and too expensive you our family too).  BUT, there are flights!  If we did have a diabetes emergency we could go straight to the airport (which is really just a small strip of grass where those tiny planes can take off and land).  We might have to max out credit cards to pay for the flight but we could get off the island.

Exhale
Deep breathe
Exhale
My big ball of stress started to unravel.

We will be fine.  With that simple plan I stopped panicking.  And that was the end of my diabetes worries.  Like the real end … for the rest of the trip.  Instead, of worrying where the closest emergency room was I started worrying where the closest Pina Colada was!

Eventually, the line started moving and we got tickets on the 3 pm ferry and return tickets for two days later!  We had the most FABULOUS time on Culebra.  Here is a picture we took on the most beautiful beach I have ever seen.  (By the way, I have no idea what Ben’s blood sugar was.)
 
 

Saturday, March 1, 2014

Failure

When I post my stories
I often receive nice comments like
“You’re such a great mom”
Which sometimes feels like false praise
Because I am not
Not even close

Often I fail
And fail a lot
Like I did last week
Starting on Monday, President’s Day
(Bear with me, this is a long one)

Everyone was home and we had no hockey
We didn’t know what to do with ourselves
So we settled on a movie
Because they are showing at same time,
Boys would watch The Lego Movie
Jeff and I would watch Philomenia
But this would only work
If we made it to the next showing!

As we rushed to get our coats on
Jeff asked Ben, “How much insulin is left in your pump?”
“18 units”
Which sounded like enough
Enough to ALMOST make it through the rest of the day
Accept
We were going to the movies
And movies ALWAYS = high blood sugar
High blood sugar = lots of corrections
Lots of corrections = lots of insulin
Lots of insulin = a lot LESS insulin left in pump
Did I stop and think all this?
Not while I was busy figuring out which scarf looked the cutest with my coat

FAIL

Off we went
With D-bag packed
And my cute gray infinity scarf

After movie
And after correcting Ben’s 325 BG
We had plans to go to a friend’s house for dinner
I had volunteered to bring a nut-free dessert
And I had waited until the last minute to get it

FAIL

So I drove from bakery to grocery store to farm stand
Finding anything truly nut-free isn’t as easy as I had thought
Finally found some chocolates that shouldn’t send anyone to the hospital
Raced back home just in time
To pack up family and headed out

Had a lovely dinner
While kid’s watched Adventure Time
Enjoyed some adult conversation
Then in walked Ben
“Pump is alarming … Low reservoir”
Thought “Crap”
Instead nonchalantly said, “OK, we will be leaving soon.”
Continued chatting
Lost track of time
Didn’t leave soon

FAIL

Eventually, Jeff whispered in my ear
“Ben ate your nut-free chocolate
He is high again with no insulin
We need to go”
Felt rude
But could no longer ignore Ben’s diabetes
Abruptly left

When we got home
Piled out of van
Asked Ben, “Where is your d-bag?”
“Oh oh”

FAIL

As we walked in the house
Jeff pulled out insulin and pump supplies and asked Ben for his pump
I pulled out phone book
Before I could dial the phone rang
“Hello, I think you left Ben’s backpack”
It was late
And I was tired (though I am always tired)
So decided to pick up d-bag the next day

FAIL

Inside Ben’s d-bag was his BG tester
But we had some old test kits in the cupboards
Dug them out along with old test strips
But it was unclear if the test strips had expired

FAIL

But … we had CGM
It was still in Ben’s pocket
If the test strip results were close to CGM readings
Decided we would be OK using what we had
And they did
So we changed Ben’s set
Corrected one more time
And headed to bed

Everyone was sleeping
I was sleeping
CGM buzzed
Low battery warning
Dragged myself out of my warm bed
Looked for charger but couldn’t find it
Slowly remembered
Charger was in d-bag!
At our friend’s house!

FAIL

Now resorted to praying
Praying the CGM battery lasted through the night
Tried to sleep
But CGM kept buzzing
Now Ben was low
Double checked with test strip
But there was only a few left

FAIL

Gave Ben a juice box
Watched CGM waiting for BG to start rising
Wanted to double check with tester
But needed to conserve the potentially expired strips
Night BG can be very stubborn
And it was
Ended up being a 4 juice box night

Next morning needed to work
So planned to pick up left behind d-bag before lunch
Boys stayed home playing x-box
Before I left reminded boys they were in charge
“Call me if you have any questions.  I will be right back.”
I started off on what was supposed to be my 40 minute round trip
It started to snow
Wasn’t too worried because if was going to be a small storm
At least that is what they said last night

FAIL

On my way home with d-bag in car
Snow was now very, very heavy
White out conditions
Only know I am still on the road because following tail lights in front of me
Started to panic
My 40 min trip turned into an hour and a half
And I had left my T1 son alone with his brothers
Without proper equipment
And now I can’t get back to him

FAIL

Cellphone rang
It was Ben,
“Hello Mom, Where are you?”
“Are you ok?”
“I am fine, just nervous because you aren’t here.”
“I am almost there.  I am sooooo sorry.”

And I was sorry
Sorry I had messed up so badly
Over and over again
I started writing this blog in my head
Counting all the times I had failed Ben in the last 24 hours

FAIL
FAIL
FAIL
FAIL
FAIL
FAIL
FAIL
FAIL
FAIL
FAIL

That was 10 times!  10 chances to make a different decision and potentially avoid the white-knuckle drive through an afternoon blizzard.  10 chances to stop the madness!

See …
I am not the greatest mom
NOT EVEN CLOSE
But I keep trying
And maybe what I should be doing right now
Is stop writing this post
And go double check how much insulin is left in Ben’s pump
And double check all our backup supplies
And maybe even take a nap

(Actually … I think I might just start with the nap)

Friday, February 7, 2014

A Tremendous Thing


“Why did you do all this for me?” he asked.
 “I don't deserve it. I've never done anything for you.”
 “You have been my friend,” replied Charlotte.
 “That in itself is a tremendous thing.” 
E.B. White, Charlotte's Web


Sunday morning, after a night of texting and nail-biting, I picked up Ben after his sleepover.  He was tired, very tired, but a thrill of excitement at the same time.  As the van door slid shut Ben started buzzing about how much fun he had.

“Mom, we had so much fun!”

I then asked the obvious mom question, “What time did you go to bed?”

“I don’t know.  We had s’mores at midnight … remember I texted you my BG then?”

“Yep I do … did you go to bed after?”

“I don’t remember.”  (That’s Ben code for I want to change the subject.)

“What do you remember?”

“We had so much fun … we played prank wars.”

Hmmm, “What are prank wars?”

“We split up into two teams.  A and I were on one team and M, A, and B were on the other team.  We used trip wires, water balloon bombs and shaving cream pies.  M, A and B setup a trip wire across the bathroom doorway and then when we walked through it a bucket of water balloon bombs were dumped on us.”

Now, this all sounds exciting and fun, but here is what a T1 mom thinks … “ACK, where was the CGM and pump?  Did they get wet?”  But I only thought that, I never had a chance to interrupt Ben’s excited story before he added …

“I felt sorry for A though.  He always walked into the traps first and all the water dumped on him because he was worried about my pump and he didn’t want it to get wet.  He took all the shaving cream pies too … right to his face.  Mom, he was really, really wet.”

“Wow, Ben you’re so lucky … A is a really good friend.”

“You’re right mom … he is.”

Ben continued on telling me every detail of their pranks wars, but I was only half listening.  I was so struck with how sweet A was.  This selfless act, taking on every punch and water balloon to protect a friend, is not what I would expect out of a 5th grade boy.  I had spent the previous day and night with a heavy heart, worrying about Ben and his diabetes … but now my heart was light.  This is exactly why, we must do all the hard work and help Ben go to sleepovers and spend time with his very sweet friends.  Being a good friend and having a good friend really is a tremendous thing.

Wednesday, January 29, 2014

What I hate the most ...

What I hate the most …
Isn’t counting carbs
Isn’t the fact that insulin bottles have taken over our butter compartment
Isn’t managing prescriptions
Isn’t set changes
Isn’t needles
Isn’t checking batteries in Ben’s pump, and test kit (which are different sizes)
Isn’t doctor visits
Isn’t packing our d-bag before we go everywhere and anywhere
Isn’t pouring over the endless stream of numbers, numbers and numbers looking for trends
Isn’t tweaking basal settings (based on a guess)
Isn’t tweaking bolus settings (based on a guess)
Isn’t panicking over a low
Isn’t panicking over a high
Isn't finding bloody used test strips all over the house
Isn’t middle of the night BG checks (I can do those the rest of my life)

What I hate the most …
Is the call from one Ben’s friend’s mom (or dad)
Asking if Ben can sleep over
Asking if Ben can join them for a Bruin’s game
Asking if Ben wants to go to the beach

Yes, Ben can … BUT
Not without careful planning
Not without having the “conversation”
Not without lots of nail-biting

What I really, really hate the most …
Is the feeling of my heavy, heavy heart
And the lump in my throat
Followed by a deep breath
And then a sigh
When I am reminded what Diabetes has stolen,
Ben’s carefree youth

((Deep Breath))
((Sigh))

Sunday, January 5, 2014

Mistakes

Freezing
Saturday morning
Hockey practice
Ben’s morning BG 218
Not great
Correct
Pack up hockey bag
Pour coffee in favorite travel mug
Head to rink

Dragging his hockey bag behind him
Ben runs to locker room
I settle in warm-room
Pull out book
Prop up CGM
Ben skates
I read
And watch CGM
BG heading down
But not too fast
Don’t worry
Just read

Practice over
BG 138 diagonal arrow down
Mark my page
Head to locker room to help Ben

Coaches laughing
Kids laughing
Throw Ben pricker
Start untying Ben’s skates
Ben pulls off smelly hockey gloves
Pricks finger

“What is your number?”
“I am two hundred …”
Ben pauses
Looks at pricker again
Looks at me
Eyes wide open
“Oh oh …
“I am not two hundred
“There are only 2 numbers there
“I am only 23.”
“Oh Shit!”
“MOM … don’t swear.”

That doesn’t make sense
CGM says 138
Pricker says 23
This is when I should pause
And think
But I don’t
Instead I PANIC!

Dig in D-bag
Give Ben a juice box
Ben sips
Still PANICKING
I mumble, “Oh Hell”
“Mom … stop swearing!”

23 is scary low
And I am SCARED
Find 3 old Mentos on bottom of bag
Give to Ben
Still doesn't feel like enough
Give Ben another juice box

While Ben chews his Mentos and sips his second juice box
Help take off his skates
Shove everything in Ben’s bag
Coaches and kids now leaving
Thankfully they didn’t hear all my swearing
“Bye Ben.”
“Bye.”

Few minutes later settle in car
Wait for car to warm up
It’s freezing!
Keep sneaking peeks of Ben in rear-view mirror
Looking for signs
Ben seems fine
But still scared
Before I can drive away
Ask Ben to check again
“But it’s only been 5 minutes
“It hasn’t been long enough.”
“I know, I just need to see a number higher than 23.”

Ben pricks … again
“Hmmm
“3 numbers now
“I’m 112
“But that seems too fast
“Do you think the 23 was wrong?”
I calmly reply, “Yep ... this time the CGM was probably right.”
But what I really want to do
Is swear some more!

I hate this disease
I hate how it’s impossible to get right
Because I hate to be wrong
I hate to make mistakes
And I hate how these inevitable mistakes
SCARE the SHIT out of me!

Ben interrupts my internal screaming fit
“Mom … I think we should go to Dunkin Donuts, don’t you?”
“You know you are going to be super-high soon?
“You just drank over 30 carbs you probably didn't need.”
Ben’s not bothered
He just wants a chocolate frosted donut
“It’s OK, we can fix that.”

He’s right
We can fix it
And I need to let all the fear and anxiety go
So I take a deep breath
Put the car in reverse
And reply,
“Sure, why the f*** not?”

"Yeah!"
Ben chuckles,
“But mom … you really should stop swearing.”

Monday, December 16, 2013

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! 

Saturday, October 26, 2013

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!