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!