Saturday, October 6, 2012

Ella Does Diabetes Saturday: Day One

Ella's been living with T1 Diabetes for 9 months.
She's 7 years old.
She checks her own blood sugar, thinks it's fun to give herself injections and knows how to operate her pump better than the school nurse.
But she doesn't understand the idiosyncracies of her disease.
She doesn't know that if it's been less than 2 hours since last dose, she needs to choose "no" when her pump prompts, "use BG to calculate dose?"
She doesn't know that, during the school day, if she's between 150 and 250 at lunch that a half correction, rather than a full correction, will usually have her sitting pretty in the 100 to 150 range at 2:00. 
She doesn't know that she can drop pretty quick between 2 and 4, so an after-school snack at around 2:30 is needed to give her plenty of energy to play in the backyard.  
Most adults get confused about all of this, so do I really expect a 7 year old to know this?
But she needs to start learning. Because someday I'm going to have to turn this all over to her. Because no matter how much I want to take diabetes away from her and make it mine, I can't. It's not my diabetes. It's Ella's diabetes...for life.
I read a post by Diabetes Dad called It's Not Your Diabetes where he recounts a conversation he had:
What was she talking about that this was not ‘my’ disease? It affects all of us, so it belongs to us all. Give it back to her? What?!! Like a final punch in the head, which would be the knock out blow, she closed the conversation with this: “One day, my parents were no longer around. I was left to care for my diabetes and had no clue what to do. I was fifteen and had diabetes for years but my parents did everything for me, and I let them. And in one instant, they were gone. Do yourself a favor and the best favor you can ever do for your daughter - give her back her diabetes. The more she does for herself and the sooner, the better off you will all be.”
I decided the only way for Ella to start understanding is to start doing.
So today begins our first "Ella Does Diabetes" Saturday where Ella will be the one in charge with me watching...and yes, prompting. It is only Day One. I'm not expecting miracles here.
What I do expect out of today is for me to say: Breakfast! and have Ella know that this means wash hands, check blood sugar and bolus for breakfast. She did a lovely job adding up the carbs, dontcha think?
 I know that when we go to a birthday party this afternoon I will need to give her a little hint before she goes in the bounce house...I anticipate it going like this:
Me: OK, Ella, you're going to go in the bounce house. How long as it been since you last ate?
Ella: Ummmm....
Me: Figure it out using your pump.
Ella: 1 hour
 Me: Good. What do you think you should do?
Ella: Check my blood sugar
Me: Great. Now your blood sugar is XX. How much insulin do you have on board?
Ella: Ummmm....
Me: Figure it out using your pump.
 Ella: .25 units
Me: What do you think you should do?
Ella: Have a snack?
Me: Yes. Good. WHY?
I want Ella to start THINKING and making decisions and being confident in her decisions.
When she was first diagnosed I remember saying that I wanted to bear this burden as long as possible. To shield her from all of this decision making and thinking in order to give her a "normal" childhood. I realize now that I need her to start making decisions and thinking so she can do normal childhood things like go to sleep-overs and after-school activities and play at friend's houses without having to have her mom tag along.
So, every Saturday will be "Ella Does Diabetes" Day where she will take responsibility of managing her diabetes with Mom and Dad watching and helping and guiding. The best part? To her, it's not a burden. She thinks it's kind of fun.
I mean, really, what kid doesn't want to feel like they know it all?


  1. What a great idea... Elise is a little too young for this, but in her own way she has started taking control. She boluses herself and checks her own BG and helps me to weigh her food to figure out the carbs. That post struck a chord with me too, and I realize the sooner I let go of certain things, the better.

  2. So very true, yet such a very fine line between whats good to teach, and whats overwhelming. Sounds like you have an awesome plan!

  3. Cool! Bean does a lot of her care, knows a lot about all the D stuff, but may not get all of the 'why'...I try to talk through why I do what I do if we are changing things that the PDM suggests and she's getting it. It's process and however we start handing it back is a step in the right direction!
    You go, Ella!!!

  4. I ave always been torn with this... I want Justin to be a kid, but I know I will not be here forever. I want him to have control, but I don't want him to get burnout. I think I've settled for making sure he knows what to do when he needs to do it and then taking the burden off of him when I can. I often question whether or not I make the wrong choices. One day a week is a good plan... I hope you keep us posted on how it goes.