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Monday, August 25, 2014

And she's off!




Today Diabetes decided to give me the big ol' double middle finger.  I woke up to find a nice 235 staring back at me on the meter.  Of course on all the days leading up to this one she had been waking up in range.

But never mind that.  There is a reason I wake up super early... So I can catch these high BGs, pre-bolus, and make sure she's on her way down before breakfast. All in plenty of time to get her off to school.

So that's just what I did.  Except...

Except THIS morning I received a Bolus Interuptus in the form of a shrieking pod.  The PDM tells me all but .05 was delivered, but that's what it ALWAYS says.  I think the PDM likes to lie sometimes.

But all is well.  The pod was changed, breakfast consumed, and one very happy girl got on the bus and made her way to first grade

All the while, I know she's doing okay.  

We've come a long way, baby.

Sunday, August 10, 2014

Just... wow.

I have been meaning to post. Really.

I have all sorts of bionic pancreas updates, videos and information from Elise's experience that I want to share.

But I can't.  I sit down to type and all I want to do is cry.  It has been so incredibly hard to get back to "normal", whatever THAT is.

So I thought I'd share a story instead.  At first it will make you mad.  Really mad.  But in the end I think we can all agree to just laugh.  Because if you don't, you'll cry.

And I have done enough of that in the last three weeks to last me a lifetime.

Yesterday, our family, as well as Laura's, went to a local water park.  Hawaiian Falls hosts two "Champion's Days" every summer.  This is where they open up their park to the families of children with special needs two hours early, and at a discounted price.  Our family of five stayed all day for only $15.  

We love this place.

Anyway, Elise and I were standing in line for one of the slides when a little girl, perhaps around 4 or 5, asked Elise what happened to her leg (where her pod was).  Lately Elise has wanted no part in "talking diabetes", so I explained to the little girl that Elise has type 1 diabetes, and that she was wearing an insulin pump that gives her medicine to keep her healthy.

And that's when the child's mother leaned over and said, "you see, Ava, that is what happens to you when you eat too much sugar."

Wait.  

What???

Was I suffering from severe heatstroke or did this woman just erroneously use my child to scare her own?

Seldom am I rendered speechless, but it was like all of my words just simultaneously blew out of my head while my jaw hung somewhere two stories below the tower of stairs we were on.

I snuck a look at Elise who was giving me some googly eyes while shaking her head, so I turned away from the grossly misinformed woman and knelt down to Elise's level.

"You know that's not true, right?"

"Yeah Mom... I know."

"Do you mind if I explain to her that she's wrong and tell her about the real cause of type 1?"

"No Mom, I don't want you to."

There was a bit more back and forth, but the gist of it was Elise really didn't want me to try and do any educating.  So I didn't, but silently fumed about this woman and her hurtful and mistaken statement.

When it was finally my turn to go down the water slide, I saw the woman at the bottom waiting for her children.  Since Elise was still at the top, I took the opportunity to set the woman straight.

"I just wanted to let you know that type 1 isn't caused by eating too much sugar, it's an auto-immune disease where my daughter's pancreas doesn't make insulin anymore because the insulin-producing cells were destroyed."

What came next floored me as much as what she had said earlier.

"Oh, I know about diabetes... I just wanted to scare my daughter, she eats WAY too much sugar.  We have all sorts of diabetes in my family.  Type 2, type 3... plus they're all Italian."

At that point, I chose to walk away.  Like I told Fred when I related the story to him, "you just can't educate the stupid out of people."

Today I can laugh at it.  But what I really wanted to say to her was, "Listen you erroneous boob... how dare you use MY child and all the hardships she endures just so you can frighten the sugar out of your daughter. Plus, with one incredibly stupid statement, you manage to not only insult me and my child, but all type 1s.  And type 2s.  Plus the Italians.  If I can compare your comment to ALL the comments I have ever heard about diabetes to a garbage pile, then yours is the biggest, poopiest, steaming diaper full of crap in there."

I know this lady was not the norm.  I've had all sorts of responses when I put on my advocating hat. Most people I've talked to will actually listen, and sometimes even thank me for telling them.  But this woman sure took that cake... all 25, full-sugar grams of it.

Which, incidentally, did NOT give my daughter diabetes.

Friday, August 1, 2014

Two weeks... gone in a flash

The pictures are coming fast and furious via text. Fred is already at camp this morning and is getting to hug our little girl for the first time in two weeks.

I am so beyond jealous, it's not even funny.

She looks happy.  Older.  Wiser, even.  But she still looks so little and I can't wait to see her with my own two eyes.


From all reports, she did well.  Loved camp and even the bionic pancreas.  I'm excited for when Fred meets with the team to find out all the details.  Since I can't be there in person, I will be there via Skype. Thank goodness for technology.

These last two week have been glorious.  And terrible.

I am so glad Elise had this oppourtunity to spread her wings and be free and amoung her people.  The fact that she did so well on her own at the tiny age of 6 (and for the first time ever), speaks volumes about her strength, and I am so proud of her.



And yet it has been overshadowed by the loss of our son.  While my heart should be rejoicing, it is instead shrouded in sadness. And I hate that this experience will be forever tainted.

I've been told that in time, that the sadness will grow dim.  I just hope that the joy will shine brighter as we get closer to the bionic pancreas being a reality for all with type 1.