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).

Sabotage

Just a couple weeks ago Ben suggested he wanted to take more responsibility for managing his diabetes.  His hope is that soon he will be able to do things without needing a nurse or Jeff and me by his side.  He decided that he could help by remembering on his own to check his BG and bolus before he eats.  We all agreed that was a great first step.

At the time I thought this would be a simple first step, a no-brainer really.  It has been two weeks since Ben made this commitment, and so far I have NOT been able to shut my mouth, bite my tongue, and stop nagging.

 

The thing is, I am usually a fairly laid back person.  I like to describe myself like Julia Roberts described her character, Vivian, Pretty Woman.  "I am kind of a fly by the seat of my pants gal." But that's not really true anymore.  Living with diabetes has a way of changing you (and your brain.)

 

When I wake up in the morning, before I am even out of the bed, I first look at the clock and think, "What was Ben's number last night?  Should I check him right now or do I have time to take a shower first?"  Eventually, we make it downstairs for breakfast.  I grab a cup of coffee and then start my morning diabetes worrying, "What is for breakfast and how many carbs is it?  Do we need to change Ben's pump set?  What should we pack for snacks today?  Where is his diabetes bag?  Is everything we need in it: test strips, glucose tabs, juice boxes, protein bars, glucagon?"

 

Now all that worry happened in just the first hour of my morning.  The rest of the day continues the same way.  These diabetes worries pepper my thoughts ALL DAY long. 

 

Then at the end of the day, before I get in bed to sleep, I check Ben's BG again (likely the 10th check of the day) and decide if his number is good enough for me to sleep for a few hours before I get up and check again at 2:00am.

 

I bet if a researcher were to perform a brain scan of a T1 parent they would easily find the worry center of the brain because it would randomly light up every few minutes.  We have been doing this for almost 4 years now and I think this constant worrying and nagging Ben has overdeveloped my worry center, or what I like to call, my diabetes brain! 

 

With all these random diabetes thoughts flashing in my head all day, I am finding it impossible to give Ben the time and space he needs to remember to check his BG and bolus on his own.
 

Before Ben even has a chance to pull out his test kit before a meal, either Jeff or I have placed it on the table.

Before Ben can take out a test strip and prick his finger, we have already asked him, "What is your number?"

 

Sadly, I have come to realize we are sabotaging Ben.  We need to give Ben the room to make mistakes, learn and develop his own diabetes brain.  Which sounds simple enough, but to do that I am going to have to figure out how to shut my diabetes brain off (or at least put it on pause)!

Now to do this I am going to need a plan.  So I came up with a quick list of things I can do to stop me from jumping in too quick to help Ben:

 

I can yell “SHUT UP!” (in my head of course)

Bite my lip (which likely will lead to a swollen fat lip)

Pace (this option seems a whole lot less painful then the lip biting)

Distract myself by worrying about what Ben's brothers are up to (they are both teenagers now so this might be my wisest option)

 

If I can do this, learn to pause my diabetes brain, maybe someday soon, Ben can earn the independence he craves.  And maybe someday, my diabetes brain will chill out ... and I can be a fly-by-the-seat-of-my-pants-kinda-gal again.

Pumps and Baseball

When Ben plays sports he continues to wear his pump.  When he plays hockey he tucks the pump into a slit that Jeff cut open inside his hockey pants.  Ben loves it because no one can see his pump, and no one ends up asking him annoying questions. 

When Ben plays baseball it is a little trickier to hide his pump.  Last year he just clipped it to the waistband of his baseball pants.  When he wore his pump this way everyone in the stands could see it.  Parents would always ask, "Why is that boy wearing a pager?" And kids would always point it out and ask questions.

This year when the baseball season started Ben decided to clip his pump to the waistband of his baseball pants again.  But instead of completely tucking in his jersey he would leave some of the shirt untucked and cover/wrap his pump with the hem of his jersey.  In the end his jersey would only be half tucked in (which technically is against little league rules.)

Ben's rule-breaking-pump-disguising baseball uniform went unnoticed by any little league umpires this season ... Until today.

Today while Ben was up at bat, the umpire called timeout and asked Ben to tuck in his shirt.  I was sitting in the stands and could not hear their complete conversation, so after the game I asked Ben what happened?

Ben explained, "The ump asked me to tuck in my shirt.  I lifted up my shirt and showed him my pump.  And told him I like it this way."

I asked, "What did the ump say then?"

Ben chuckled and said, "The ump said' "WHOA what is that?” I told him it was a pump.  He then said, "Oh ... oh OK then." That's when I blushed.  I felt my face get hot.  I don't think that has ever happened to me before."

I assured him he had nothing to be embarrassed about.  He had handled it like a champ.

Ben then said, "It didn't bother me too much.  I still hit a double."

Good News and Bad News

Sunday evening after a long hot day of baseball, everyone gathered in the family room to watch NHL network (seriously the sports never stop in our house.)  Jeff and Ben curled up together in our big leather chair while the rest of us sprawled out on the sofa.  

After everyone settled in, Jeff said, "Hey Ben, I have some good news and some bad news for you, which would you like to hear first?"

Ben replied, "How about the bad news first then the good news.  That way I end happy."

Jeff chuckled, "That sounds like solid logic.  So the bad news ... I know you wanted to go on day trippers camp the first week of July but you are not going to be able to."

Ben pouted and made his sad little puppy dog face then asked, "Why?"

Jeff explained, "Because there will be no nurse there to help you with your diabetes.  You will have to stay on campus and do general camp."

Ben pouted more and made an even sadder little puppy dog face. 

Jeff then reminded him, "But I said there was good news too ... You also wanted to go on day trippers in August.  We talked to L (his babysitter who also has T1) and she said she can go with you!  The camp director said she can come too and help take care of you."

Ben smiled, clapped and cheered, "Yeah!"

(Which I must add is going to cost a fortune.  We have to pay for camp + a babysitter for 40 hours.  Thankfully the camp is not going to charge the sitter for the camp and also generously offered to pay for all her tickets and fees.)

After his quick celebration, Ben added,  "I need to start learning to take care of myself more.  Then I won't always need L or a nurse."

I now chimed in, "That is a good idea.  As you already know taking care of diabetes is a lot of work.  There are prescriptions to fill, doctor's appointments to make, there is carb counting, set changes, and midnight checks.  Dad and I want to help.  You don't need to take everything on.  But maybe there is a small piece you can take on as your own job."

Jeff then added, "You know you do a lot already.  You are a great carb counter.  And when you are at school, you remember to visit the school nurse before snack and lunch."

Ben was quiet. 

He thought for a few minutes. 

Then he said, "I know! I will remember to check myself before I eat and bolus when I am home.  You won't need to remind me anymore.  Will that help?"

Jeff agreed, "Yes it will.  That is a great first step!" Then Jeff and Ben fist bump.

I wanted to jump off the sofa and just kiss his face off!

I often feel as if God dumped a bucket load of crap on Ben back in October of 2009.  But maybe, just maybe, God knew what he was doing.  Because every time this stupid disease, diabetes, tries to break him ... Ben wins ... and always comes out stronger!

No?

This afternoon I watched an interview with Dick Hoyt and his son, Rick.  This father and son have run marathons and triathlons together for over 35 years.  Which sounds impressive enough, but what makes their story even more impressive is that Rick has cerebral palsy.  They told a moving story about a father's love. The interview ended with the son speaking through a computer and telling the audience to never give up hope because you can do anything you want to do.

Since Ben was diagnosed almost 4 years ago we have heard this advice often (like really often).  And so far we have never told Ben he couldn't do anything because of his diabetes.  There have been moments when I have thought about it.  There have been times when it would have just been simpler to say “No”, but my heart has never allowed me to take the easy way out.

But today when I heard that advice again my heart hurt.  Because today it became clear that maybe sometimes it is just not true.  Sometimes there really are things that Ben just cannot do.  Today Jeff and I are faced with the fact we are going to have to tell Ben “No”.  Not and ordinary “No”.  Not a “No, you cannot stay up until midnight.” But a “No you cannot go to the summer camp you have had your heart set on for 4 years because you have Type 1 diabetes.”

Both Jeff and I work full time so the boys have spent their summers attending day camps.  Ben has attended all the same camps as his brothers.  They have split their summer weeks between a sports camp and a traditional day camp.  Both of these camps have a nurse on staff that has helped take care of Ben.  Now the traditional camp offers different activities for the older kids and one of the options is what they call day trippers.  The day trippers week is a week filled with field trips.  One day they go to the beach, another day to an amusement park and another into Boston for a tour of Fenway Park.  This is his older brothers’ favorite week and Ben has anxiously been waiting to be old enough to go with them.  This year Ben finally is.

Jeff met with the camp director this week to discuss how we can help Ben be able to join his brothers on day trippers.  Sadly, the conversation ended with a simple Ben cannot go.  The camp does not provide a nurse for this trip and without one they will not allow him to go.  Ugh ... Sigh

Then this evening, after I was done with work, I raced to pick up Ben's brothers and get them to their baseball games.  First I dropped off Cole.  But before I could drop off Garren we had to stop for gas.  We stopped at the full service gas station (of course) and while the gas attendant pumped the gas we sat quietly in the car.  All I could think about was, “How can we tell Ben about camp?”  Soon Garren interrupted the silence and asked, "Why are you so sad." First I swore him to secrecy and then explained Ben was not going to be able to go on day trippers with him this summer.  He then asked, "Why?" I replied with the simple answer, "Because he has diabetes and there will be no one on the trip to help him." Garren looked puzzled and ask, “You know last year we had a counselor on day trippers that had Type 1 diabetes.  Maybe she could help Ben?”

A spark of hope! Maybe (just maybe) this story doesn’t have to end with a “No” …