His cup is still half full

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

Monday

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

Tuesday

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

Wednesday

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

Thursday

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

Ben plays catch with brother

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

More insulin

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

Jeff home from work now

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

Later in the evening

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

Ben walks by

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

“Mom, what do you want?”

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

“Remember at conference,

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

Not the answer I was expecting

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

The Conversation

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

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

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

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

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

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

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

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

That's it.  No handouts.  No lectures. 

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

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

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

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

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

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

The Right Side

Ah! Time for bed

Finally a cool night

Good sleeping weather

I make it to bed first, before Jeff

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

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

Right side, sleep side

Chose right side

So tired

Pull down covers

Roll to my side

Sleep

Dream

  

BEEP! … BEEP! … BEEP!

2:30 am

Hear angry slap of alarm

Jeff throws back covers

Click of bathroom light

Setup pricker

Shuffle down the hall

Feel badly

But roll back over, anyway

Sleep

 

Krinkle … Krinkle … Krinkle

What’s that?

Ah, juice box straw

“Ben’s low?”

“No, not really, 85”

“How about setting a temp basal?”

“Just did that”

“Still need juice?”

Grumply reply, “I don’t really know”

Quietly reply, “OK”

Roll back over

Need to stop nagging

I chose right side

Sleep

 

Sun shines through blinds

Wake up

7:00 am

Shower

Come down stairs for breakfast

Ben already sitting at table

Jeff at stove cooking bacon

Ask, “What’s your number?”

Jeff snaps, “High”

Ben adds, “220”

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

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

  

Silence

I walk to get coffee

Stand right next to Jeff now

Sadly this time,

Jeff mumbles again, so only I can hear,

“But I was nervous …

I was tired …

I just wanted to sleep …

And not be scared”

I pour my coffee

Then I mumble back,

“It’s OK …

I get it …

I chose the right side.”

To Blog, or Not to Blog?

Last week my family attended the Children with Diabetes conference in Orlando.  One of the first sessions I attended was a panel discussion about how medical professionals feel about the Diabetes Online Community (DOC).

You can find the full video of this discussion on Scott's blog here.

For the first half of this session the discussion went mostly as expected … Then at exactly 57:47 the discussion turned to whether parents should be blogging about their T1 children.  It was suggested that a parent should err on the side of caution and share almost nothing about your child’s life with diabetes.

My gut reaction was … Ack!

Until that moment, I did not realize I was doing anything wrong.  I thought I was helping my son … not hurting him.  And it never occurred to me before that by writing this blog I was being selfish and putting my interests before my son’s.  Thank God another mommy blogger spoke up to defend herself (and what felt like me too).  I felt some comfort knowing I was not alone.  But I did leave the session convinced I should pull down this blog and beg for forgiveness.

Later in the week I attended another session about blogging.  (Seriously, I must be a glutton for punishment.)  My hope was that I would find some comfort listening to the advice and wisdom of my fellow bloggers.  Soon the topic of children’s privacy came up again, and again, and again. 

Ack!

I left this session again convinced my blog needed to come down, if I write one more word my son will never be able to get a job, or insurance.  His life will be ruined and it will be entirely my fault!

I immediately hunted down my husband, Jeff.  He works in education specializing in technology.  I knew he would have an opinion.  When I found him, I starting babbling about how I am ruining our son’s life and I am the worst most selfish mother on the planet!  Jeff, of course, disagreed and suggested I calm down!  Jeff insisted I shouldn’t feel so badly.  He said he was proud of my blog and all my advocacy.  He also suggested that everyone has a digital footprint and what we need to do is learn how to take advantage of it instead of being so scared of it.

Ahhhh!  Now that was an interesting perspective!

With that little bit encouragement I began to reconsider my decision to quit blogging.  (I even posted a story while we were still at the conference.)  But I was still not 100% convinced.  Once I arrived home I started scouring the web for more information.  I started by googling “digital footprint.” I wasn’t even sure I understood exactly what that meant.  I eventually ran across this short video that describes what they call your digital dossier (aka digital footprint).

The basic premise is that you are constantly leaving behind a trail of all your interactions on the web and the whole digital world (including your TV and phone).  This happens when you visit websites, make purchases at web stores, Google information, and use social media.  So the idea that our children have any real privacy online seems unrealistic.

Some of this information we unwittingly put out there when we visit websites and visit web stores.  But there is also a load of personal information in our digital footprint we put out there ourselves, via Facebook, Instagram and BLOGs!  Now you can be like me and run away scared, deleting Facebook accounts and taking down blogs … or you can be smart and brave like Jeff and realize you hold the power, the power to mold and control your online identity. (And the online identity of your super-awesome and brave T1 son!)

Ahhhh! 

Now this idea led me to a couple more questions …

First, what is the purpose of this blog?  (It most certainly is not to ruin my son’s life.)

I started this blog last year because I felt I had a story to tell … a story that was too long to tell over a dinner or while chatting during a hockey game.  I also felt it was a story people needed to know.  I am certain that if the whole wide world understood (really understood) what life was really like for all these T1 kids there would be a call to arms!

Secondly, what is it I want the world to know about me and my family? 

I am a mother of three wonderful boys and my youngest has T1.  We are a family learning how to live (and love) life with Type 1 diabetes.  We have had triumphant days and other days we would assume just forget.  But through it all my son has proved to be tough, resilient, un-complaining and the light of our life.  He is our hero! (And to any future employer … you would be lucky to have him.)

With those questions answered I finally have decided to keep blogging.

I started this blog to tell our story.  And serendipitously, I have found the support and love of the DOC.  I honestly believe this blog has both educated folks and at the same time made me a better T1 mom.  I will continue to tell honest stories.  I have always been careful to not share too much, but will now be even more diligent.

So after a couple weeks of soul searching and trying to better understand our online world, I am left with this simple idea … If the whole wide world and web is listening to you when you are online then you better make sure what you are saying is interesting, compelling and the best representation of yourself. 

The power is yours!

His cup is half full

This week our whole family is in Orlando at the Children with Diabetes conference.  It is week full of education, support and all things diabetes. (By the way, it's pretty awesome.) 

Yesterday Jeff, Ben and I met up for lunch (Garren and Cole were off with their friends pretending they didn't know who we were.)  We had just finished our first conference sessions.  Jeff and I had listened to a talk about carb counting and Ben had spent the time talking with other T1 10-year-olds.

As we were unraveling our napkins and getting ready to eat, I asked Ben, "How was your session?"

He responded with a quick, "OK." 

That wasn't enough info for me so I pressed on, "Did you talk about anything interesting?" 

Quiet pause. 

"Well ... There was one interesting thing." 

Knowing Ben I had a feeling this was going to be really interesting.  For a quick moment I considered recording what he was about to say, but I was on the edge of my seat, so I quickly asked, "Ah ... What was that?" 

"At one point Joe asked everyone, if there was a cure for diabetes discovered today, raise your hand if you would want it." 

"That is interesting.  Did everyone raise their hands?" 

"Nope." 

"Really?  Did you raise your hand?" 

"Nope." 

"Really?  You wouldn't want the cure?" 

"Nope." 

"Why not?

"I think having diabetes has made me a healthier person.  I know what to eat.  If I didn't have diabetes I would probably eat too much junk.  I would probably be really fat.  I am smarter now."

I knew I should have recorded this conversation!   

I was surprised, maybe a little shocked.  There is so much negative that comes with living with T1, but Ben is right, there are so many positives too.  Ben has identified one.  And he has chosen to focus on that.  Ben is a cup-half-full kind of guy! 

Eventually, we did finish our lunch and then ran off to more sessions.  I spent my afternoon listening to a talk about managing diabetes and exercise with a smile on my face, knowing that Ben was OK.  Ben is completely OK with his diabetes and who he is.

$60,000!

Last weekend was the Cohasset triathlon.  Team Ben competed for the 4^th year in a row.  Now using the work “competed” is a bit of a stretch describing how I did!  I spent my winter in hockey rinks and my spring on baseball fields … when I should have been training.  I knew it was going to be a tough race but I was determined to “compete.”

Half way through the bike you pass a sign marking Mile 6.  By the time I was passing this sign I was exhausted.  I had watched biker, after biker, after biker, after biker, after biker (I think you get my point) pass me by.  The voices in my head were beating me up pretty badly.  They sounded something like this:

“Are you watching everyone fly past you?”

“Yep, EVERYONE!”

“Who exactly do you think you are?”

“You are a 47-year-old woman who did not properly train for this race.”

“You have no right even being on this course!”

At this point I was pretty close to pulling my bike over, sitting in the grass, and crying.  But I knew I couldn’t do that.  First, I have way too much pride to be a quitter.  Second, I was doing this for Ben, to raise money for JDRF.  So I decided if I was going to finish this race, I was going to have to change the conversation in my head!

As I was pedaling, I thought about the Hoyts. (http://www.teamhoyt.com/)  Just the day before, after we had registered for the triathlon and received our race numbers we went to hear the Hoyts tell their story. (The Hoyts seem to keep finding their way into this blog.)  During their presentation Dick Hoyt (the father) told us after they had run their very first race together Rick (his son with cerebral palsy) told him that while they were racing he felt free for the first time.  Dick Hoyt then explained that as long as he could give his son this feeling, the feeling of being free, he would run with him as long as humanly possible.

That was the moment I choked up.  I know Ben and Rick Hoyt have very different physical issues.  Their lives are not really similar at all.  But what they do have in common is they both have parents that want them to feel “free”.  Free for Ben would be a life without the constant burden and worry of his diabetes.  And I would do anything to give Ben that freedom … including racing this god forsaken Triathlon!

Slowly, I was changing the story in my head.

As I am working on my resolve … SWOOSH!  One of our Team Ben members races by me and shouts, “You can do it, Dolores.”

Instantly, I remembered I am not in this alone.  I thought about all our AMAZING Team Ben members.  I thought about all our friends and family who were racing with us that day; who have supported us over the past 4 years; who have done their own fundraising sending emails to their friends and coworkers telling Ben’s story and asking for help.

Then the tears started.  I was not 100% certain exactly why I was crying, but I was certain I couldn't do it right there, right then!  Certainly, if someone noticed a blubbering, 40-year-old woman, panting on this bicycle they would call an ambulance.

So I started chanting in my head, “You can do it … You can do it … You can do it.”

Then the conversation in my head went like this:

“You can’t let your team members down.” 

“You need to keep pedaling this F***ing bike.”

“You need to finish this race!”

“And unless they find a cure this year, you are going to do this again.”

“And next year … you are going to train!” 

Eventually I did finish the race. (Only after my dear friend, and team member, Sarah encouraged me through the last 2 miles of the run.)  We ended the race taking this photo before we headed off to our Team Ben BBQ.

 
But wait!  This is not the end of my story!  This group of athletes (Yes, I am now calling myself an athlete, I did just finish a triathlon) in 4 years has raised $60,000 for JDRF!  And in that time (and I like to think with that money), there have been significant advances made.  We seem to be a whole lot closer to a viable and working artificial pancreas, a tool that won’t cure T1, but will provide all those children and adults living with T1 a real sense of freedom!  My dream come true.

I wish there were a way to let all our Team Ben members know how truly thankful I am.  I hope a hug, a kiss, and a smile will do for now, because there can be no more tears (like I already said, I have too much pride for that).