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!