Gratitude

“Piglet noticed that even though he had a Very Small Heart,

 it could hold a rather large amount of Gratitude.”
― A.A. Milne, Winnie-the-Pooh

 

I wish I just walked around recording my conversations with Ben because sometimes it's hard to believe that someone so young can be so wise.  Just this past Sunday, I was driving around town with Ben and his older brother, Garren, running errands.  And this day I had won the radio wars!  We were listening to NPR and not their horrible dubstep “boom boom” music, I hate.  (I have finally turned into my father.)

On our way home from the supermarket the Ted Radio Hour came on and we all became enthralled with the story told by Eleanor Longden.  The radio host, Guy Raz, was interviewing her about a recent talk she gave at a Ted conference where she described how she started hearing voices in her head and how she was eventually diagnosed with schizophrenia. (Eleanor Longden: Is It Possible To Live With The Voices In Your Head?)

At the end of her interview she was asked this very question:

RAZ: But, I mean, if someone were to say, OK, you're going to wake up tomorrow and you are never going to hear those voices again, what would you think?

LONGDEN: I sometimes feel I should insure my voices 'cause if they ever, do ever go, I'd be out of a job. So my professional livelihood depends on them. I would miss them if they went, which is an extraordinary admission in some ways because I am somebody, who at one point, would literally rather have died than live with my voices.

She then concluded her interview with this comment:

LONGDEN: The human animal is a unique being, endowed with an instinctual capacity to heal and the intellectual spirit to harness this innate capacity. We don't have to live our lives forever defined by the damaging things that have happened to us. We are unique. We are irreplaceable. What lies within us can never be truly colonized, contorted or taken away. The light never goes out. As a very wonderful doctor once said to me, don't tell me what other people have told you about yourself, tell me about you. Thank you.

Right as she was saying "Thank you" Ben said, "I understand what she means."

Both Garren and I asked, "Really?"

Ben said, "I am not sure I would ever want my diabetes go to away either ... it's hard to explain why ... it's just who I am."

Garren wasn’t buying it, so he asked, "So you are saying, if there was a pill that could cure your diabetes, you wouldn't take it?"

Ben was then silent for a few minutes.  I looked at him through the rear-view mirror. He looked a bit perplexed and sad.  My heart broke a little.  After a few quiet moments Ben said, "So many good things have happened because of my diabetes.  I have made so many friends and Team Ben."

That’s when Garren interrupted and stated, "If I had diabetes and there was a pill I could take to fix my pancreas I would take it."

Ben thought some more but eventually replied, "I am not sure.  Maybe I would take the pill ... BUT," He added with emphasis, "I would never wish that diabetes had never happened to me!"

I continued to watch him through the rear-view mirror, and he was no longer sad, he was looking out the window seemingly very pleased with himself ... he was smiling ... and I smiled too.

This very question was posed to him last year at the Children with Diabetes conference and I blogged about it here: His cup is half full and then I blogged about it again here: His cup is still half full

It might seem I am a bit obsessed with the question, but what I really am is confused.  I would give my own pancreas to cure Ben's, but he wouldn't even want it.  That seems so odd to me.  I am with Garren, if I were in Ben's place I would take the pill (and if I were Eleanor Longden I would want to get rid of the voices in my head).  But it seems Ben (and Eleanor) might have a better understanding of life than me, and I think it might be more than just finding your inner strength.  Ben is more than just strong.  Ben is happy.  How is that he can so easily and freely embrace his diabetes?

I have been thinking about this conversation since Sunday.  And I have decided what separates me from both Ben and Eleanor, is that they are living their life with gratitude.  When Ben considers what his life would be without diabetes he does not focus on the annoying bad parts.  Ben considers all the good things he would lose.  Ben is grateful.  And this simple act of being grateful shifts his focus from what his life might lack to the abundance that is already there. Ben’s life is filled with family and friends who love and care for him, and that is all that he sees.

Ben is wise beyond his years.

And I am grateful for him!

A Sincere Thank You

Dear Ben's Buddy's Mom/Dad,

Thank you!

Thank you for inviting Ben over for a sleep over (and then even inviting him again).  Thank you for agreeing to do his middle of the night BG checks (even though you must be exhausted from wrangling a small herd of 11-year-old boys all evening).

Your generosity is a gift; a gift which allows Ben to enjoy a sleepover, a rite of passage, just like every other boy his age; a gift which allows Ben to feel included and no different than his friends; a gift which allows Ben to assert some T1 independence outside of my T1 mom hovering eyes.  As you open your home to Ben at the same time you are opening the door to an independent fun filled world, a door which is often closed to young T1 kids.

You are likely familiar with the old proverb which states, “it takes a village to raise a child".  This proverb is especially true for all the kids with Type 1 diabetes.  Ben's village includes me, his dad, brothers, grandparents, aunts, uncles, doctors, nurses, friends and his friend's very generous and loving parents.  Thank you for being part of his village!

Sincerely,

From the bottom of my T1 mom heart,

Dolores

A Chorale Concert, Charades, and a Kick Line

5:30
I shut down my computer
Time to make dinner
Phone rings
Jeff
“I am on my way home with the boys.
Did you know Ben has choral concert tonight?”
“Ah … nope”
“Show starts at 7:00.”
“OK, I’ll fix a quick dinner.”
Hang up
What to make?
Tacos

Hear garage doors
Hear thumping up basement steps
Door slams open
First Cole
Drops backpack in middle of kitchen floor
Then announces
“I hate tacos”
2 more backpacks drop on floor
“Yeah tacos”
At least someone is happy
Dig out test kit
From Ben’s backpack conveniently placed
In middle of kitchen floor

Throw Ben test kit

“Please check”
“134”
“How many carbs?”
“47”
Ben quickly eats
Runs upstairs to dress
Returns wearing
Wrinkled shirt
Dirty tie
At least blue blazer is clean

Hand Ben a tube of glucose tabs

“Keep in your pocket just in case”
I Remember
3^rd grade chorale concert
We also arrived late
Sat in back of auditorium
Helpless
Watching Ben sweating and shaking
Suffering a low
In front of the whole school
But only Jeff and I knew

This night we make it to school on time

In time to find seats up front
Want to be close enough
Want to be in CGM range

Concert begins

Enjoy the music
And the faces of all the lovely boys
Dressed in their wrinkled shirts and crooked ties
CGM is working
Yeah
Numbers look good
Arrow is steady and flat

Now it’s time for 5^th grade boys

Shuffle up on stage
Jockey for positions
Finally settle in
Sing

Ben is sweating

Brushing the hair off his forehead
Jeff gives me the eye
Oh God
Not again
Buzz, Buzz, Buzz
Double arrow down
We keep smiling
Pretending nothing is wrong
But secretly praying for song to end
But it doesn’t
Feels like the longest song EVER
Like Stairway to Heaven long
Ben keeps wiping his forehead

How long can we wait,

Until I pull him off stage?
That would be soooo embarrassing,
Would he ever forgive me?
I repeat to myself
Hold on
Hold on
Hold on

Eventually the song does end

Ben walks back to his seat
We start waving our hands
Trying to get his attention
He is laughing
Poking his friends
Eventually he looks our way
I start my game of charades
Sticking hand in my pocket
Then miming eating
Ben is puzzled
I keep repeating
Hand in pocket
Hand to mouth
Dramatic chewing
Ding, Ding, Ding
Ben finally gets it
Pulls out glucose tabs
Ben puts up 1 finger
Than 2
I answer with a very empathic 2

More kids sing

And I watch CGM
Watch arrow change
From 2 straight down
To 1 straight down
Eventually to a steady arrow

Ben returns to stage

For the big finale
Arrow is finally heading up
They are all smiles
I am wiped out
Concert finishes with boys singing
New York, New York

“These little town blues, are melting away

“I’m gonna make a brand new start of it …”

Kids are singing

Kids are laughing
Now a kick line!
So much joy
Deep breaths
It's melting away …

Hello Mothers ... Don't Forget You!

Last summer
Winooski, Vermont
25^th college reunion
Ack!
25 years?
Feels like yesterday
But it’s more like a lifetime ago
A lot has happened
Fell in love
Married
Had 3 boys
Fell in love 3 more times
Became a pancreas

Late one evening

Sharing a bottle of wine with college buddies
Sharing stories of our lives
Stories about work
Stories about kids
Stories about medical problems
Yes … our medical problems
It has been 25 years
And we are getting old!

But I share no stories

I remain quiet
Very unlike me
But I had little to share
Then my old roommate asks me,
“How have you been feeling?”
“Hmmm … fine …
“Honestly, I can’t remember the last time I saw my doctor.”

Gasps

Scolding
Try to explain
But I am a T1 mom!
Don’t I get a pass?
My life IS prescriptions and doctor’s appointments
Just not mine
No pass
Just more scolding
And a little more scolding

Then another glass of wine

Conversation changes
Laughing ensues
Now we are 2 glasses in
Stories of late nights on Church Street
Stories of parties in the quad
But I didn’t forget my scolding
When I get home
I call my doctor
My roommate was right
I need to take care of me

September

Finally see my doctor
Doctor pulls out my files
“When did I see you last?”
With a guilty shrug, I say,
“I have no idea.
“It’s been awhile.”
Hmmm …
“Says here September 2009?”
Bing, Bing, Bing …
“That makes perfect sense!
“My son was diagnosed with Type 1 diabetes in October 2009.”
Doctor nods a sympathetic nod
“That’s a tough one.
“But no worries.
“You are here today.”

Doctor checks all normal stuff

Asks how I have been feeling
“A little run down.
“A little tired.”
I joke,
“Could be because I haven’t sleep through the night in 4 years.”
Doctor doesn’t laugh
No sense of humor
Or just a really bad joke
Instead asks,
“Let me check one more thing.”
Doctor rubs my neck
“Can you feel that?”
“Hmmm … suppose I do.”
“You have a lump.
“You need to get that checked.”

Fast forward to today
I did take care of myself
I am good

I am healthy
Feel better than I have in a long time
Happy I was scolded
And I sit here on Mother’s day
Typing this post 

For my fellow T1 moms (and all mom’s out there)

But I won’t scold
Because I get it
Being a mom is a lot of work
(That’s why there is a Mother’s day)
And being a T1 mom is a super-duper lot of work
(Every last available moment filled with BG worries)
But please remember
Put your oxygen mask on first
Kind of hate typing that over-used analogy
So I will state more simply
Don't forget you!
And if you do,
If you are lucky enough to get a scolding
from someone who loves you
Listen

My Honor II

This time last year, at the end of the hockey season, I wrote a post about my oldest non-T1 son (My Honor).  I want to do it again.  But this year I want to pause my regular T1 rantings to write a post about my middle non-T1 son, Cole.  (He is going to kill me, so I am intentionally going to keep this one short.)

This year Cole made the Bantam A hockey team (the same team his older brother won the championship with last year.)  This team had a great season and they reached the playoffs with a 19 game winning streak.  The boys were eager to start the playoffs.  The championship felt in reach.  Their expectations were high.

Fast-forwarding to the championship game, their team had the lead entering the third period, 1 to 0. Then came the last 2 minutes.  A lot can happen in the last 2 minutes of a hockey game, and it did.  A couple bad bounces and the other team scored 2 goals.  My heart sank.  The boys had worked so hard, but the championship had slipped away.  After the buzzer the other team threw off their gloves and celebrated.  With their heads low and their shoulders slumped our team skated back to their bench.

The league officials skated to the center ice with their boxes of trophies.  Each team then lined up on their blue line and waited for the presentation.  Since we lost, our coach took the microphone first to hand out the dreaded 2nd place trophies.  The first 2 players called up from our team had been injured earlier in the season and weren’t able to skate that day, so they carefully shuffled across the ice to shake the coach’s hand, receive their trophies and then shuffle back to their place in line.  The next player called up was Cole.  He skated up to the coach shook his hand, accepted his trophy and then paused.  My mommy-sense was tingling.  I knew he was up to something.  Then instead of skating back to the end of his team’s line he skated over to the other team and he shook each player’s hand and congratulated them on their win, only then returning to his place in line.  Then as each player was called up they too followed his lead and congratulated the winning team.

After the game, as we were driving home, I asked Cole, “Did coach ask you to congratulate the other team after he had handed you your trophy? “

He said, “No.  I was nervous.  I stopped and thought about it and wasn’t sure what to do next.  But I decided it was the right thing to do.”

With a very full mommy-heart, and a lump in my throat, I said, “You were right.  That was the right thing to do.  You are a brave boy.  I am not sure I would have been as brave as you.”

This year the championship game didn’t end with the same glory as last year.  But sometimes, you learn more from losing.  And I learned that Cole knows what’s right and is willing to take the lead when called upon.  He is a class act.  And again this year I state ... I am honored.  I am honored to call this classy hockey player, my son.  (And yes, there really are classy hockey players.  I know a whole team full!)

Cole, I kept it short.  I hope that wasn’t too embarrassing.  Love you, Mom 

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.)

 

 

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)