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.