Tuesday, July 22, 2014

CWD 2014 ... Aha! Moment

Here is my crazy-T1-mom confession ...  It’s not the lows that scare me and keep me up at night it’s the highs! 

I can’t even count the number of times I have been told stories about so-and-so’s great-aunt who lost her toes because she had diabetes.  Granted she had Type 2 diabetes … but, I figure, she probably was diagnosed later in life, in her 50s, and lived with it for maybe 20 years before she started suffering from complications.  20 years!  That’s not very long really.  Ben was diagnosed when he was 6!  (I don’t even want to do the math here.)

So when Ben’s blood sugar is over 200 I go a little bonkers.  And his BG is over 200 a lot!  Every time I see a BG over 200, I start imagining all that extra glucose floating around his body, banging up against his eyeballs, kidneys and toes.  And as I watch those stubborn highs continue to stay high, I think crazy thoughts like, “Is this stupid high taking away another day of his life?”  Seriously, a 300 or a 400 can send me over the edge.  I start obsessing about his basals, carb ratios, and sensitivity factors.

Now here is the thing, I have been told often, “Our kids diagnosed today with T1 can live a long healthy life.”  I have been told, “If you manage the disease well there is no reason to fear acute complications.”

But how can that be true?   Every time someone made that statement it felt like a lie.  It just didn’t make sense to me.  The logic didn’t fit.  High blood sugars whether caused by Type 1 or Type 2 are bad, really bad.  I had to be missing something …

Then came the 2014 Children’s with Diabetes conference.   And that is where I had my Aha moment!

I believe it was on Friday of conference week, I was attending one of the last sessions, and honestly I don’t totally remember what the main topic was, but somewhere near the beginning of the hour one of the presenters said, “Your kids diagnosed today with T1 can live a long healthy life.”

And I thought to myself, “Yeah, right … Liar!”

I am pretty sure, I just thought it, and didn’t say it out loud … because then he explained, “Just so you know, your kids do not have to suffer the same complications your friend’s grandmother with Type 2 suffered.”

Now he had my attention … he continued to explain (and I will paraphrase here) …

When you are diagnosed with Type 1 diabetes, your pancreas was working, chugging along and then all of a sudden it stops.  You can live a few months or so like this, but eventually you make your way to the doctor and get the diagnosis, “You have Type 1 diabetes.”  Now with Type 2 diabetes, the diagnosis isn’t quite so abrupt, it’s much more of a gradual decline.  And that decline can happen over years and years, and it can be measured decades!  And during those decades your blood sugars are rising and sadly causing damage.

Aha!  It’s the pre-diabetes I was missing!

This all seemed to make sense now.  I could put all the logic pieces back into place.  There is no conspiracy of liars.  Ben really might be OK.  Next time I saw Ben’s BG cross that 200 line … I don’t have to freak out!  We need to just keeping fighting the good fight … a fight that suddenly seemed fairer.  Us, manned with our fancy technology, conferences, textbooks, and doctors, might just be able to help Ben live a long and happy life despite his diabetes.

Deep breath

Exhale

The presenter dropped this nugget of wisdom and then quickly moved on to his real presentation (which I still can’t remember) but I did quietly think to myself, “Thank you.”

Sunday, July 13, 2014

Why We Continue to Tri

On Sunday, June 29th, Team Ben completed our 5th Cohasset Triathlon and raised another $6,000 for JDRF.  It wasn’t pretty.  Our team was a bit smaller and plagued with injuries and health issues this year.  We did it (again.) 

Every year after the race we like to take at a team picture at the finish line under the Cohasset Triathlon banner.  This is never a simple task.  We need to find all our team members scattered through the crowd and then ask to them wait in the hot sun as we try to find that last lost team member which is most likely one of the kids ignoring our calls as they climb the rocks on the beach.

This year seemed extra hot and I was extra sore as I walked through the sand looking for our last stray child.  Eventually we did find almost everyone (sorry Maeve and Chris.)  We then found a passer-by willing to take the photo.  We arranged the group perfectly under the banner except we were again missing one person, Ben.  That’s when someone asked, “Where’s Ben?”

His little buddy knew, “He’s back here.”

We couldn’t see Ben because he was behind the group sitting on the ground.  I went around back and asked Ben to come up front.  That’s when he mumbled, “I … c a n ‘ t.”

My heart sank.  He looked awful. He was slumped over his backpack fumbling with the zipper.  “Are you ok?”

Ben answers, in what sounds like slow mo, “N o … I  f e e l  l o o o o w.”

“Let me help.”  I grabbed his d-bag and quickly dug out a juice box, unwrapped the straw, and handed it to Ben.  He fumbled even getting the straw into his mouth.  So I positioned his hand closer to his mouth and put the straw tip between his lips.  He was able to start sipping, but not as fast as we liked.  That’s when Jeff started squeezing the juice box forcing the juice in that much quicker.  I dug out his test kit and started assembling it so I could check his actual blood sugar … 32!

“He is going to need another juice box!”

“Ben can you drink another one?”

He was still lying there like a rag doll.  “ I … don’t … know.”

I dug through the d-bag, found our last juice box, handed it to Jeff, who then assembled it, stuck it in Ben’s mouth, and started squeezing it again.

This is when I realized Ben’s face is dripping with sweat.  It was hot, too hot for Ben who never seems to do well in the scorching sun.  Right next to us was the registration tent.  The race officials were clearing it out but there were still a few tables and a lone metal folding chair sitting in the corner.  When Ben was finished with his last juice box I carried him over to the chair and told him we would wait here.  Someone had found him some cold water which he insisted I pour into his baseball cap and put on his head.  He loved it.  He slumped back in the chair and waited.

During all this our very hot, tired and patient team was still waiting to take the team photo.  Jeff felt badly asking them to wait any longer and suggested we take the picture without Ben.  But no one thought that was a good idea and they continued to wait.

And wait they did.  It took at least another 20 minutes for Ben’s BG to reach 80.  I asked him to come join the group so we could take the photo, but he still felt awful.  He wouldn’t move.  That’s when our team decided to take the picture in the tent.  Ben wouldn’t even have to move.  They assembled themselves around Ben and has chair.  We found another innocent bystander and we took this photo.



This photo strikes me as both sad and sweet.  It’s obviously sad that Ben was suffering but at the same time there is so much love there.  These people spent one of their prized New England summer days to swim, bike and run on a very hot day, through injuries, to support Ben and raise money to find a cure!  We are so grateful.  I am grateful for our Team Ben racers (both past and present) and I am grateful for all of you who have donated to our team, raising close to $70,000!

We have lived almost 5 years with Type 1 and Ben has only suffered through a few of these scary and always surprising lows.  For the most part, Ben does well with his diabetes and his doctors are always impressed with his A1Cs.  But sadly, living with Type 1, no matter how well you “control” it, means suffering through lows (some scarier than others.)  I share this story, not to scare anyone, or even to make anyone feel sorry for Ben, but to explain why we, Team Ben, continue to race this crazy triathlon.

I will continue to bug (and nag) begging for donations until we find a cure.  Yes a cure!  I am super excited about the artificial pancreas, but that’s not enough.  The number of children and adults who are diagnosed every year is increasing.   We need a cure … and that is why Team Ben continues to Tri!

Wednesday, June 18, 2014

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!

Sunday, June 15, 2014

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

Friday, May 23, 2014

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
3rd 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 5th 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 …

Sunday, May 11, 2014

Hello Mothers ... Don't Forget You!

Last summer
Winooski, Vermont
25th 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

Wednesday, April 30, 2014

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