Wednesday, June 7, 2017

A life of "probably"


I’ve lived in this world of “probably” for the last 19 years.

“He’s probably ok.”

“He can probably get through the day safely.”

“He’s probably going to go low.”

“He’s probably going to need extra insulin.”

“That’s probably enough food.”

And every single morning when I open my eyes:

“He’s probably alive.”

I’m aware that nothing in life is for sure; in fact that is how I survive my life of probably…

But my “probably” and a family’s “probably” that doesn’t have children with a chronic disease live on completely different “probably” planes.  Our percentage of ideal outcomes very widely.

Type 1 Diabetes is one big fat probably.

Nothing ever is for sure; meaning random variables are always present.

“My children are going to probably live through the day.” It’s a truth for every parent. It’s an ever-present reality for me.

That is why the Dexcoms my boys’ wear have been life changing for me.

I wake up in that cold sweat in the middle of the night, wondering if I slept through my alarm, and in that very instant I can look at my phone and see that all is well. I can glance at my phone in the middle of a movie and see if my boys at home remembered to bolus for their dinner. I can be driving and look at my watch and know that my college student is safe.

I can see if their sugars are trending up. I can see the double arrows down indicating quick action is needed.

I can breathe better, because those moments when I have to hold my breath are fewer and far between.

How can I convey the monumentality of this?

After using Dexcom for 6 months our insurance denied our reorder.

This has never happened to me before. Our family has always been extremely blessed to have insurance that would pay for everything, and have doctors that would know exactly what to say to make sure things got covered.

And here I was facing the end of those extra breaths. I knew we could survive without it, obviously, but I also knew our quality of life was better with it.

Or maybe it’s fairer to say, MY quality of life was better with it. I can’t speak for my teenagers.

But for me? To have the background worry paused every now and then brought a soft breeze of normalcy that I haven’t been able to enjoy for a long, long time.

I didn’t take the Dexcom numbers for granted. I knew they were a gift. But now to have that all taken away?  (Cue “it isn’t fair” rant.)

But thankfully, I had met a new friend last month willing to pass along some sensors.

And thankfully too, Dexcom called us because a friend had passed them along this tweet.


Also thankfully, our new Endocrinologist here in Indiana is a fighter and even though it took almost 6 weeks…I’ve received word that the Dexcom supplies have been approved for all three boys. 

Though nothing is just that easy. I called the pharmacy to see if they’ve processed the order and they said they are waiting on a fax from our Endo with the approval. I messaged our Endo and they haven’t actually received the approval yet. They received it verbally, but not in writing.

It will probably work out.

The problem with “probably” is it’s not a passive thing.

Probably takes constant effort, there is no sitting back in a big comfy chair, forgetting about Diabetes and expecting everything to “probably” be ok.

The fates don’t have any control in the direction of my teenagers’ blood sugars. Only effort and thought does.

And with the Dexcoms, it takes a lot less effort, and a lot less thought…for my boys.

For me, it has enabled my position as my boys’ PDS. (Personal Diabetes Secretary.)

It’s a job I’ve recently taken on to help my struggling teenagers out.





I’m probably annoying them.

But when I remind them, they take action.

And that is a big win.

Thank you, Dexcom.

I hope with all my heart that we’ll (probably) never part.




3 comments:

  1. If you live in Indiana, you might consider DYFI's summer camp: http://dyfofindiana.org/summer-camp/

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  2. Wow...I admire you and your family. I have type 1 diabetes for almost 35 years. I know is very hard for my parents to have a daughter with diabetes and you have 3 sons with D life. Keep on going and fighting for your kids, you are admirable ��

    ReplyDelete
  3. The DYFI summer camp is great and right up the street form my house. I have faith that the Dexcom's are on the way.

    ReplyDelete

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