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).