Monday, July 21, 2014

Hope Springs Eternal

While sitting on the couch last night taking a break from the movie we were watching I decided to click on Facebook to pass the time.  I saw a post by a fellow D dad.  His son and Riley are very close in age and dealing with the same all-consuming stupid disease that is Type 1 diabetes.  We’ve been “friends” for years.  I know little about him.  But, the only thing I really need to know is that he hates Type 1 diabetes as much as I do.  And, he has the same ache in his heart for his son that I have for mine. 

I clicked on this video.  I knew it was about the clinical trials being done now to test the bionic pancreas.  I’ve been reading some about it.  Just the other day I found out one of the participants is a little girl whose mom has a blog I used to read.  She was just one year old when her pancreas decided a permanent strike was in order.  I was so happy for her and for her family.  I also thought how great it would be for Riley if this artificial pancreas thing pans out.  And, then I promptly put it out of my mind. 

Like I said, I knew it was going on.  But, I’d kept myself on the fringes of it.  I knew about it but I didn’t really want to KNOW about it; didn’t want to get too close to it.  I didn’t even realize that’s what I was doing until last night. 

The video began innocently enough.  I was watching.  They were explaining what Type 1 diabetes is and how they were able to fund this trial.  They show the kids running around, splashing in the mud, playing games all while grinning from ear to ear.  I felt a little lump forming in my throat and the sting of salt water behind my eyes. 

Then, it got to a part where they show a group of girls sitting around a table.  The camp counselor is explaining that 8 of the girls will be on the bionic pancreas for the next 5 days.  And, during those days their diabetes will be cared for exclusively by this little medical device.  That means there will be no sugar checking, no carb counting, no activity restrictions, no middle of the night sugar checks; you know, those things all the rest of us take for granted every day.  There was clapping and a countdown and smiles all around. 

And, then I lost it.  I started bawling like a baby.  I was overcome with emotion that this is going on, that this is REALLY happening.  This isn’t some far off in the future, maybe-one-day-we-can-hope-for-this-kind-of-thing that we diabetes parents are used to.  We’re used to hearing “this might be possible one day” or “whenever we can get enough funding”.  But, “Hey, look, this wonderful awesome thing that will benefit your child, it has come to fruition and we’re getting to test it and the findings so far have been great.”?  Yeah, we don’t hear that too much.  Like, not at all. 

After the video was over, I sniffed for a while and wiped my eyes and got my emotions under control and went back to watching the movie.  But, something felt different.

Today, I watched the video again, this time with Riley sitting by my side watching it with me.  Out of the corner of my eyes I watched as a grin spread across his face as he took it all in.  When the guy said that the device would do all the work, Riley turned to me, his grin widening and said:  “That means you wouldn’t have to get up in the middle of the night and check my sugars anymore.” 

Really?  That’s his first thought?  Not, “Yay me!  No more sugar checks, no more carb counting, no more having to factor this in to soccer practice.”  No.  His first thought was for me.  I wish I could take the credit for how awesome he is.

Of course, by the end of the video I was bawling again.  Riley looked at me in that pre-teen my-mom-is-crazy way and galloped off to his room to build worlds and mazes on his computer.

I sat there, a familiar feeling in my chest.  It took a moment for it to register what it was.  It was like a scent you catch on the breeze and it makes your stomach flutter but you’re not quite sure why.  Then, it dawned on me what it was. 


It was hope. 

Hope that one day Riley really will be able to just live his life without giving thought to whether what he is doing or eating may affect his blood sugar.  Hope that when he goes off to college I won’t be up at night wondering if he’s up at night checking his sugar.  Hope that when his first child is born or he’s standing at the altar waiting for his bride to walk in that diabetes will be the furthest thing from his mind.  Because, he won’t have to think about it anymore.

I don’t know when I pushed hope to the background.  I don’t think I ever gave up hope.  But, somewhere along the way I gave up hope on hoping. 

How did that happen?  Hope has been my mantra almost from the moment Riley was diagnosed 8 years, 9 months, 15 days, and 2 hours ago.  I even have the word “hope” emblazoned just under my left collarbone.  A reminder that no matter what, all is never lost.

I realized I had given up hope on hoping for one simple reason: what if it never happens?

But today, instead, I’m thinking: what if it does?

Oh. My. God.

What if it does?


Karen said...

I think you both are amazing, and I'm glad we all have a reason to have a little more hope these days.


Wendy Rose said...

What. if. it. does?


My daughter is participating in this year's camp study -- right now. As I type this.

It's happening.

I couldn't believe it either, so I sent my kid to scope it out from the inside. (It was her decision, but I put the option on the table.)

There will be details coming.

And more hope.

Anonymous said...

This is fantastic news. And, yes, it will happen. But... what about those teens, young people who do not want to wear three sites? Even with a pump with a dual chamber, I imagine that would need two sites plus the site for the cgms. And considering insurance is asking for prior approvals for insulins, which had to be appealed in order to get and then only for a limited amount of time, considering she cannot choose her meter and strips but must choose one approved by the insurance company, even with appeal, which was denied, do you really think the insurance companies are going to pay for this? I have very good insurance and I am seeing denials I have never had to deal with before. These devices will be, not only for those that agree to wear them, but for the privileged few. I need a less invasive therapy for our DD.

Cameron Von St James said...
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Control de peso said...
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S Rocks said...

Very well written and informative article, thank you :-)


S Rocks said...

Very well written and informative article, thank you :-)



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التميز المثالي said...

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