Tuesday, October 28

My kid is high! and other diabetes adventures

I owe you an update on this guy.

10 years old. practically a man.

We've been managing Peyton's Type 1 diabetes since his diagnosis in January (his story).

And he isn't really "high" - not in blood sugars these days, nor on drugs (whew!).

Actually, he's been low or normal most days because we're still in what doctors call the honeymoon phase, where diabetes is new and more manageable and ... I guess, exciting?

Come on, aren't all honeymoons?

So here's the thing: Peyton has a really sucky disease. If I am real, then I should say the diagnosis wasn't a 2014 highlight. But - still being real - some good has come out of this, and I am concentrating on that.

I always get questions about his management. And by "his," I really mean Peyton's because he is on top of this thing. Blessing #1. He was old enough when diagnosed to handle this, and he's just controlling enough to want to do this mostly solo.

By "do this" I mean that he is:

  • Poking his finger with a lancet device 5-6 times a day to check his blood sugar before he eats.
  • Determining how many carbs are in the foods he eats
  • Knowing the best ratio of insulin to give himself based on food, exercise, and whatever else might be coming up in the next hour
  • Filling his own syringe
  • Stabbing himself 3-5 times a day with the insulin-filled syringe to cover the sugars (carbs) in the food. (He always does his own shots; can't remember the last time I did one for him.)
  • Prepping for bed with a snack that will keep his sugar levels up overnight so he doesn't have a nighttime low.

It's a lot. Scott and I monitor each of these steps. The routine of it is both comforting and frustrating all at once. Sometimes I'd love to say "just go eat that slice of pizza and don't worry about it." Sometimes I don't want to carry his meter and a man-purse full of supplies when we go out. But that will never be his reality.

(OK, we are working on replacing the man-purse ...)

Point is, he is doing good. Really good. Aside from some weird, unexplainable highs and lows, he is quite the healthy diabetic. And he still eats whatever he wants, although he has a hankering for most protein products. But never rule out chocolate peanut butter ice cream. As he says, it's always worth the shot.

The diabetes support group that is the rest of his family is also doing well. I am the Supply-Orderer and Flex Spending Reimbursement Seeker. Thank God for good insurance. Scott is the Great Explainer of All Things Medical when Peyton has questions. Thank God for him, too.

And we are training Sam in both our ways because she's back-up, as well as the Annoying Big Sister.

But I would be lying if I didn't say I still lose sleep over this disease. We don't check Peyton's blood sugar in the middle of the night --- currently. Due to the length of time between blood sugar checks, the body's unique chemistry at night, daytime activity factors, and nighttime insulin, Peyton's levels could drop low at night. Low is not good. Many mamas check, for many reasons. Because Peyton has been so consistent in recent months, we haven't checked since before summer. 

I don't know what will happen when the honeymoon is over.

Still, every single morning that I wake up, I visit his room first to see if he's still breathing. And 3-5 nights a week I wake up in the middle of the night to do the same thing. I don't check his levels because it is so incredibly disruptive to his sleep, and because he wakes up with an extremely consistent set of numbers.

But I won't pretend this is forever. We let him live his life - go to sleepovers, actively play sports, make some poor food choices (hello, he's 10!) and not disrupt his sleep when he doesn't want to be disrupted. 

It is hard to let go of the fear. 

We need a cure. Insulin is a HUGE blessing (this was a fatal disease before the 1920s) but it isn't a cure. A cure would mean that no one would need insulin again. For me, this is a cause worth rallying around.

But if we never get a cure, he still needs to live fearlessly. So do we. Heck, what I really want is a cure for fear. Isn't that what people with all manners of incurable diseases and permanent disabilities need? 

The courage to truly live big even when life has thrown you some disadvantages. 

Really working on this.


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PS-

Thank you for your many, many kind words, texts, calls, and visits after the last post. Heart is hugely full. It's never easy to be real about the raw stuff, but there is so much freedom when you do.

And here is what else happened:

On the 26th, I wrote my first post in months. I pressed "publish," then grabbed a Sharpie and wrote 3 words on a Post-It that I wanted in my face for-freaking-EVER.

Hope. Because I had forgotten even how to do this. I placed self-preservation above hope.

Trust. Because I had become too jaded.

Adventure. Because God is always saying to me, "Go, do, and tell. Small things, big things, and a bazillion new things."

Then, on the 27th, I read this in Jesus Calling:

"Many people are so preoccupied with future plans and decisions that they fail to see choices they need to make today. Without any conscious awareness, they make their habitual responses. People who live this way find a dullness creeping into their lives. They sleepwalk through their days, following well-worn paths of routine. 
I, the Creator of the universe, am the most creative Being imaginable. I will not leave you circling in deeply rutted paths. Instead, I will lead you along fresh trails of adventure, revealing to you things you did not know."

YES. Tell me this is true. My longing to bust out of my current boxes is big and real and OK. I believe it is OK to feel restless - just as it is also OK to be content where you are.

Sometimes you need a balance between the two - GRATITUDE for what you have and MOVEMENT to leave behind what is no longer productive.

There I am.

3 comments:

  1. Hey lady, you're amazing and your attitude is tremendously inspiring. Hang in there... I've got you in my prayers, sister!

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    1. Thanks Jamie - I do miss you! I need to come and hear you sign sometime ... that would be an instant pick-me-up!!

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  2. Miss you too, girl. Let me know if you're ever in our fair city!

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