Best Year Ever

It’s the last week of school and I am picking Ben up.  After not so patiently waiting for him (I hate the pick-up circle) I spot him running across the courtyard with his garbage bag stuffed with dirty gym clothes he finally cleaned out of his sports locker (seriously gross.)  He pops open the back of the van, throws in his backpack and dirty laundry then yells to me, "I still need to go to the nurse's office to get my stuff."

As he runs off again, I slowly move the van up to the front of the pick-up line and continue my game of Candy Crush.   Before I can finish my next level, Ben is in the back seat.  He throws me the sheet of paper with his daily BG log and says, "Let's go."

I put the van in drive and before I can say anything annoying about his BG log, Ben announces, "Mom, this was my best school year ever!"

This surprises me a bit because this past year was Ben's first year in the middle school and it wasn't a year without its challenges.  I ask, "Really?  Why do you say that?"  Then I tease, "It's certainly not because you did so well in Math."

He laughs and says, "No.  It's not because of that … my grades.  It's because this is the first year everyone stopped asking me questions.  No one asks me about my pump or why I have to go to the nurse.  This year I just was ... I just was one of them."

I’m a little stunned.  I wasn’t expecting that.

Jeff and I fought so hard this year.  We fought the school for more independence for Ben.  We fought our own fears, allowing him to go on more sleepovers, letting him walk to the center of town after school to have pizza, and all the while managing his diabetes on his own.   And it was tough (so tough I couldn't even blog about it.)  Jeff and I butted heads at times, because it was scary, like very, very, very scary, but maybe it was all worth it.

My heart swells, "That makes me so happy."

I am watching him in the rearview mirror.  He is looking out the window smiling at his friends who are horsing around still waiting to be picked up and he says, “That makes me happy too.”

Hands

Buzz … Buzz … Buzz.

I open my eyes but I see nothing.  It’s dark.

Buzz … Buzz … Buzz.

I slowly wake up, realizing Ben’s CGM is vibrating on the night stand beside me.  I reach over carefully slapping around trying to find the buzzing CGM without, at the same time, crushing my eye glasses I stupidly placed right next to it.  Eventually my hand feels the familiar leather case.

Buzz … Buzz … Buzz.

Will Ben be high or will he be low?  My foggy midnight brain is unable to guess.  I flip open the case and push the button.  The bedroom lights up from the glow of the CGM screen.  I squint to diffuse the too bright light and see … 275.  I guess he is high tonight.  I check the time, trying to decide if it’s worth getting up and leaving my very warm bed.  It’s only 1 am, 6 hours until we start our morning business, too long to let this high go unattended. I throw back my ever-so-warm covers and feel a rush of cold winter air.  I shuffle to the bathroom where I assemble Ben’s test kit and then shuffle down the hall to Ben’s room.

I flick on his bedroom light.  Ben doesn’t move.  He is used to these middle of the night intrusions.  I wait a second and let my eyes adjust.  I don’t see Ben.  I never do.  He sleeps in a ball completely covered by his blankets.  I sit down on the edge of his bed slowly pulling back the covers searching for a limb, an arm, a hand.  I find his elbow and try to pull his arm out from under the covers without twisting it into horrible hurtful positions.  I finally find his hand and place it in mine.  It feels so big, so strong … Wait! What?  Ben’s hand is almost the size of mine.  That can’t be.  He is my baby.  Maybe I have the wrong child.  Maybe someone else is under that pile of covers.  But then I see the tell-tale signs, this hand, these fingers have been pricked before.  I see on the sides of his fingers the calluses that have developed over the years, 6 years of blood checks.  And I know its Ben.

6 years ago when Ben was first diagnosed he had just started 1^st grade.  He really was my baby, so sweet and fun loving.  He was still wearing his Harry Potter costume to the movies and his Obi Wan Kenobi costume (his Ben namesake) to the super market.  And I was scared.  I was scared for my baby to be out of my sight.  I picked him up every day after school because I was too scared to let him take the 30 min school bus ride home.

But it’s been 6 years and Ben isn’t my baby.  He is in 6^th grade, in the middle school, writing papers and taking math exams.  Just this weekend he went to movie night at the all-girls school down the road, he went out for pizza after and spent the night at a friend’s house, all without me (or his dad) hovering and nagging.  He managed his diabetes on his own.  I was still scared.  I didn’t sleep a wink the night he wasn’t sleeping in his own bed right here at home.  But as I sit here holding his hand, his grown up hand, marveling at how much time has passed, I have hope … hope Ben will grow up healthy and strong.  (We have already made it so far.)  And despite all my fears I have hope Ben will be OK.

Brothers

I was scrolling through my old posts and came across this one.  I totally forgot I wrote this ... and I feel the need to share again.  The T1 siblings are heroes ... and certainly should not be forgotten!


One evening in July when we were at the CWD conference, I asked Garren and Cole how they were enjoying their sessions.  I asked questions about how their sessions worked and what they talked about.  They explained to me that often they get separated from the kids with T1 so they can discuss issues specific to being a sibling of a kid with T1.  I continued my probe and asked what kinds of things did the kids bring up.  Cole said a lot of the kids mentioned that their parents spend more time taking care of their T1 brother or sister and less time on them.  hmmm ... interesting 

 

So I asked Cole, "How do you feel about that?  Do you think we spend more time with Ben?"

 

Both Garren and Cole replied, "Yes."

 

I then asked,  "Does that bother you?"

 

Cole quickly responded, "No!  Because I know that is what you have to do."

 

Seriously, my boys are pretty awesome!  And I think its time to devote a post to Garren and Cole and let the whole world know (or at least the handful of people who read my blog) how truly great these two T1 siblings really are.

 

To start, Garren is our oldest.  He has been the light of this family since he was born.  He has a talent for being able to chat as easily with an adult as with a toddler.  I marvel at how self-assured he is.  In social settings I tend to be wallflower, but not Garren!  Within a few minutes he will know the names of everyone in the room and he will even have several new cell phone numbers to text to.

 

Cole is a thinker.  He never stops asking questions.  When he was young he would pepper me with questions.  He would want to know how the seasons worked, how far was it to China, and why was the sky blue.  Once after a long day of questions I had to tell him I just did not know all the answers!  And Cole, the ever-clever toddler, responds, "Mommy how could that be true, you went to college twice?” To this day he is still asking questions (thankfully, I am no longer his only source for the answers.)

Now to be clear, my boys are not angels.  At times I find myself refereeing their arguments.  I often refer to them as the "bicker brothers."  Believe me, a three-hour car ride to visit their grandmother in Maine can be extremely painful.

 

But at the same time I know how much they do love each other.  They have proved it to both Jeff and me time and time again.  Since the day we came home from the hospital after Ben was diagnosed these two brothers have been nothing but supportive.  They have made sacrifices without complaint.  They have learned to carb count.  They have taken care of Ben through both highs and lows.  They have even worked to raise money for JDRF in the hope of finding a cure!

 

I have often been teased that I love Ben the most.  Admittedly, since Ben’s diagnosis Jeff and I have definitely spent more time taking care of Ben and worrying about his diabetes.  We have spent hours and days working on raising money for JDRF.  And I have spent hours writing stories for this blog.  But in no way does that mean I love Ben the most.  How could I when Ben has two of the greatest brothers, Garren and Cole!

Liability

Liability.  We often bump up against this word.  Recently we smashed up against it.

We asked for some help watching over Ben.  We got a, “Hmmmmmm, we need to check with our lawyers first.”

At this point, I know exactly where this is going, and I have already moved on.  But I let this little charade play out, letting the little devil on my shoulder get a tiny bit of satisfaction and a good laugh letting them waste their time, energy and money.  After the lawyer “talk”, we are told, “We can’t help you because it’s too much of a liability.”

I have heard this before, and it makes little sense.  I am not a lawyer, but I did take Law in high school and my teacher spent the whole semester explaining the difference between criminal court and civil court.  The lawyers didn’t say it was against the law to help Ben.  The cops aren’t going to knock down doors, slap on handcuffs and cart anyone off to criminal court.  Liability means suing, and that means a trip to civil court.  What the lawyers are worried about is a trip to civil court and a money settlement.  Now to take this one step further, I ask, “Who exactly would be taking them to civil court?”  There is no T1 mom union out there suing people.  The only logical people who would and could sue them would be Jeff and me!

What they are really saying is, “We can’t help your son because we don’t think it’s worth the risk that YOU will sue us.”

Now that is a bit insulting and offensive, but I am neither.  Because I know sometimes there is a difference between what you say and what you really mean.  And what they really mean is, “We are scared.  We are too scared to help you.”  Now that I get!  Because I am scared too!  And to be honest, if you are too scared to help I would prefer you didn’t.

This is when the little angel on my other shoulder, whispers in my ear and reminds me, when you are knocked down and feel kicked in the gut, these are the moments when you learn who the brave people are.  Because eventually someone will stretch out a helping hand and you get to meet real life heroes.  We have met these people before, our old school nurse (I Believe in Angels), Ben’s friend’s parents (A Sincere Thank You), his hockey coaches (An Ode to SMS Hockey), and they are all a blessing.

So with my little devil chuckling, hoping a nice big lawyer bill lands on someone’s desk and my little angel reminding me real angels do live among us, I shut the door on any more stupid liability talk.

We are doing fine, matter of fact, Ben is doing great!  And we can handle this, with the help of those people that love us and all of those brave real life super heroes!

Forgetting

Saturday night

Everyone is home

From soccer tournament

From hockey game

From soccer game

From working mom’s weekend errands

Putting away groceries

Ben finds his favorite

A bag of frozen wontons

“Please mom?”

Kitchen is a buzz

All three boys

All at the same time

Telling stories

Of their athletic triumphs

Open wonton bag

Dump in hot pan

Dump bag in trash

It’s a cacophony

Of play-by-plays

And we tease

And we laugh

And I forget

Kitchen timer buzzes

Wontons are done

Ben rushes over with plate

“How hungry are you?

How many do you want?”

“Can I have them all?
Chuckle

“Can you save some for me?”

But I am a mom

And Ben is my heart

So I give him most

His plate is full

Ben smiles

I smile

Jeff interrupts

“Do you know how many carbs

are on that plate?”

Carbs?

Oh my!

I forgot

For a glorious hour

I totally forgot

We were a normal family

Cooking a meal

Laughing

And not worrying

About blood sugars

Insulin

And carbs!

Well at least I forgot

Fortunately, Jeff did not

I laugh and tease

“I am a horrible T1 mom!

I totally forgot Ben had diabetes!”

As I am digging through trash

For wonton wrapper

To help with carb math

Ben whispers in my ear,

“Sometimes I do that too.

Doesn’t it feel good?”

I don’t want to admit it

I don’t want to encourage forgetting

Not the healthiest

Or safest

Way to handle a chronic disease

But he is right

For a sweet moment

It did feel good

So I smile at him

And nod my head

And he smiles too.

Hard Work

I haven’t written a post in awhile

Been busy
With other non-D things

My oldest started high school

Spent the summer obsessing
Obsessing about his schedule
Like I obsess about Ben’s BGs
Convinced his entire future
Hinges on me getting this right

All the while

Ben’s BGs are all over the place
Tweaked every pump setting
Basals
Insulin to carb ratios
Sensitivity
Hoping his numbers will come down

Nights were the toughest

Always high
Stubbornly high
And I hate highs at night
Figure if I can keep those down
Might offset the madness that happens during the day

Friends, family, neighbors ask,

“How is Ben doing this summer?”
“Great,” I say
Then me, being over-honest add,
“But his BGs have been all over the place.”

Over-sharing, bad idea!
Because this always leads to,
“I know so-and-so who has Type 1
And they have it all under control.
Why is it so hard for you?”

Scratch head
Never sure how to reply
Since I don't know so-and-so

After the third time,
I am asked the same question
I finally come up with this reply,
 “There is a difference between
Having a hard time and trying hard.
We are trying hard.”

This usually leaves them scratching their head

And conversation changes
And life goes on
Before summer ends
We take one last vacation
Before school starts

Not only is my oldest starting high school
Ben is starting middle school
With Ben’s new schedule
His BGs are again all over the place

Every day after school

I asked my oldest, “How were your classes today?”
I asked Ben, “How were your numbers today?”

Eventually, I stop nagging

Over the first few weeks of school
My oldest settles into the high school
Making the soccer team
Enjoying most of his classes
(there will never be joy in Algebra)
And Ben’s BGs settled down too

Just this week was

Endo appointment time
Before we left
I already figured
We were going to see a high A1c
It had been a rocky summer
And a rocky start to school

But, to our surprise

Ben’s A1c was the lowest it has ever been!

When we got home

Jeff asked Ben,
“How was the appointment?”
Rather nonchalantly Ben said,
“Doctor didn’t really say much
Because she spent the whole time
Telling us how awesome we are.”

I gave myself a high five

Sometimes trying hard
Does pay off!
Now, if only I could convince my oldest
Hard work could pay off in Algebra too!

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.”

Why We Continue to Tri

On Sunday, June 29^th, Team Ben completed our 5^th 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!

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!