Tuesday, November 19, 2013

Yes, It's Personal.

On Friday, our daughters had their quarterly endocrinology appointment. 

I don't mind our endocrinology appointments.  I like the doctors, nurses and caregivers that are part of our team.  For us, it is like a visit to hang out with extended family.  They know us and we know them.  It just feels normal.  Weird, right?

Upon arriving, I knew that we were to expect higher A1cs.   The numbers had been climbing and the reasons were not hidden.  One daughter, our youngest, was in the middle of rapid growth and hormone driven puberty changes and one daughter, our oldest, had been enjoying some new teenage behaviors like feeling hungry, all of the time

Our average blood sugar hovered in the 180s for both girls, so if you do a bit of A1c sleuthing, you already know that those numbers transferred to a 8.1 and an 8.2 for each child.

And if you read this blog, you know that my perspective is that each of those A1cs is just a marked moment in time.  There will be A1cs that are lower and A1cs that are higher during their lifetimes.  That is the stark truth of type 1 diabetes.  I never allow a number to dictate on how well we were during.  It is simply a gauge of where we are - right now.

My attitude is good, I think.  After all, I am raising two daughters with this disease.  I want them to feel empowered by their care and not the other way around... which is defeated. 

Yet still, when our sweet Endocrinologist asked how things were going and I candidly responded, our oldest daughter had a tough time listening.

And in case you have younger kids living with type 1 diabetes, please understand that they will be listening when you are talking to the endocrinologist.  Kids are smart little beans and they get more than we are aware of.

Oldest daughter listened and was able to voice her thoughts, albeit through tears, to let us know that she felt a bit like she was being reprimanded, even though the discussion was NOT directed AT HER.

She listened and knew that she had made choices.  Her routine was to come home from school, grab a snack and start homework.  After one snack was gone and she was still hungry, she grabbed another.  And so on, until dinnertime. 

Being the responsible kid that she is, she also remembered to test her initial blood sugar, add up her carbs and dose appropriately.  And then, bolus some more.  And some more.  And some more.  All the way until dinner was over.

Unfortunately, even with her dedication to insulin, her blood sugar never had a break from 2:00 p.m. until sometime before bed.  This translated into high(er) blood sugars through the day and evening.

Sitting in her chair in the endocrinologist office, with her head down low, she started to cry.

And oh, my heart break (and our doctors too) to watch her cry because there was truly nothing that she was doing "wrong".  It was simply a matter of learning how to adjust to this new phase of life.  To understand that feeling hungry all of the time is a normal response when you are teenager.  However, as a teenager living with type 1 diabetes, it was also an opportunity to change the approach and to learn how to handle it best to avoid spiking blood sugars.

How in the world did my calm and relaxed approach to type 1 diabetes care not make it to my daughter?

Then, it hit me.  As much as I want to explain that type 1 diabetes is a family disease, it really isn't.  Our daughters are the ones carrying this with them every single day, every single hour, minute, second.  It is PERSONAL.

It is personal to my daughter because this is her body. 

So what did I do?  I stopped talking.  I hugged her.  I comforted her.  I told her that she was amazing.  I gave her positive feedback in front of our endocrinologist to point out the wonderful attributes that our daughter has and how wonderfully she has managed her care at school, at play practice and by even achieving another straight-A report card. 

None of this should be forgotten.  She is so much more than a number.

Our oldest daughter recovered from her tears and managed a small smile.  Shortly after, the appointment was over and we headed to a labs for a blood draw and then home.  Wisely, I decided that it had been enough 'diabetes' for the day and that no good would come out of further conversation.

The next day, when our oldest was ready, we discussed how she felt in the appointment.  She explained that it was indeed personal and that she did feel like she let us down.  I told her that it wasn't the case and that it was just about changing the way that we did things before to a new way.  In this case, we incorporated another 'meal' into the day to avoid extended afternoon snacking.  The visual cue would be for our daughter to load up a dinner plate, then count all of the carbs at once and dose before she started eating.  Thus avoiding, the many trips to the pantry, yet still feeling full when she was done.

Two days later and we had another conversation - which this time - included marveling over how much better blood sugars were, giving a high five and watching while she was still able to enjoy a snack after school.  "Such a simple change", our oldest daughter said.  "Who knew that it could make a difference?"

I asked her how she felt now.

"I can't believe I got so upset.  I didn't understand what you were saying then.  I thought I was in trouble.  I guess, I just needed to see how it worked.  And to learn that I wasn't doing anything wrong." 

Such a true statement. 

In the world of type 1 diabetes, let us not forget that no one is doing anything wrong.

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