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Feel World Diabetes Day 2012

I've spent some time recently thinking about what World Diabetes Day meant to me, what did I want from it, what did I hope it's existence would leave for those that witnessed or participated. On Monday night I found the answer to my question...

Arden brushed her teeth before bed, she put on a silly pair of pajamas and climbed under the sheets. Her voice called to me and said that she was ready to be tucked in. When I entered her bedroom she had the lights out, her face was illuminated softly by a stream of dimmed light from the hallway. Her eyes were closed, she was pretending to be sleeping so that she could try and scare me as I approached. I stopped halfway into her room to tease her, she was trying so hard not to move, carefully holding her lips together so that she wouldn't smile. I looked at her face for a long moment before I sat next to her so that she could scare me. She popped up, I acted frightened, and then we laughed. We talked about the next morning and she expressed how happy she was that I was able to schedule a play date for later in the week with one of her friends. It was a wonderful few moments, some of the best that I had that day. 

Our party was crashed seconds later by the electronic beeps of Arden's CGM. Three beeps to be exact. It's urgent bells told me that her blood glucose was falling, I looked at the clock but I knew that it was doing so far sooner then I planned. Those beeps brought me right back to reality. We tested and continued to mess around, Arden's spirit was unchanged. I decided that Arden needed a juice box, she didn't want it, actually Arden hasn't enjoyed a juice box in some years because they feel like medicine after all this time. I could tell by the slight change in her face that she didn't want to drink the juice but she didn't make a fuss. I smiled and continued to talk about the next day as she forced herself to drink. It occurs to me now that we were both putting on a brave face for the other.

I hope that World Diabetes Day allows one new person to see my blog today, anyone's diabetes blog really. I'd very much like it if as many people as possible could understand more about type I diabetes. I'm not talking about the tried and true stuff. No talk of how many shots or pokes, those things suck but you can't fully appreciate them if they aren't your reality. But feelings, we all understand feelings.

This may seem on the surface to be a minor thing, a petty inconvenience but please trust me when I say that it's very much more. I sat on the left side of Arden's bed as she forced down a juice box that she didn't want. She did it so that she could go to sleep without worrying that her BG would fall to a dangerous level, she did it because she had to, did it because that's what she does. She tried to keep the happy in her face, tried to hold on to the joy that we made together only moments before. She did a good job, I may be one of the only people in the world that could have seen through her mask. 

Watching my daughter with that juice reminded me that there are forces in each moment of her day that manipulate her life. These moments aren't scripted, we don't know when they will happen, how they will end or if we are responding to them correctly. They demand that we stop living and pay attention to them so that we may continue to live. It probably only took her three minutes to consume the juice, but those minutes and all of the ones like them, they steal from us and they take more then time. My hope for WDD is that someone takes the time to understand a little better that which is the life of a person with diabetes, and that they feel as best they can what it means to carry type I through each day. I think that understanding will make an advocate out of even the most casual observer, and that understanding will lead all of us to a brighter tomorrow.

Arden hates drinking juice, I loath having to ask her to do it. Each time acts as a mallet that strikes at my soul. I can't be sure of what it does to Arden, I probably couldn't handle knowing. Please don't think of this as a story about a juice box, it's a story of a chronic disease and it's effects on an innocent person. I began this post with the intention of describing the sadness that watching diabetes do what it does has on me, but I can't find the words. I guess I'll simply say that it hurts, physically hurts me. It changes me. Some days and in some ways for the better, sometimes for the worse, but I am inarguably changed. 

November 14th is World Diabetes Day, November is Diabetes Awareness Month, people that live with diabetes do so bravely each and every second of their lives. Please try and feel what that means, let it change you.

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Reader Comments (8)

Well said! Completey Understand...

November 14, 2012 | Unregistered CommenterAS

Thank you for sharing this post, Scott. Each and every time you share your experiences you leave an impact on others. My interactions with you and others within the Diabetes Online Community have changed me as well. For that, I am grateful.

My best, Laura K.
Sanofi US Diabetes

November 14, 2012 | Unregistered CommenterLaura K.

That was your most memorable post yet. Thank you.

November 14, 2012 | Unregistered CommenterJohn Pennisi

Two amazingly touching comments on what has been a very emotional day in our community. Thank you to everyone that took time out of this busy day to be here. I genuinely appreciate the warmth that your support creates. Be well...

Happy November 14th!


November 14, 2012 | Registered CommenterScott Benner

Beautifully written, man. Thank you for sharing this piece of your life. Thank you for all of the pieces that you share so frequently. Just telling your story is advocacy enough, in my opinion...but I know that you do so much more. So thanks.

November 15, 2012 | Unregistered CommenterMike

I just passed by your post and let me tell you how strong she will be because of you. I am 22 and i have diabetes type 1 since i was 6, and i know, as i`m sure your daughter knows, how much you love her and how much it affects you, just as i know how much my parents love me and how much this changed their lives. This is not the life parents wish for their kids, but this is what we got. Moment like the one you describe, are the ones that she will remember and treasure, knowing you didnĀ“t want to give her the juice, but you did because you had to and you love her. I'm sure she will be okay, just as i am, because we both have the luck of having parents like you.
(I apologize for the wrong spelling. English is not my first language)

November 15, 2012 | Unregistered CommenterClaudia

To echo Claudia, 45 years later, I still marvel at my mother's ability to deal with the diabetes diagnosis of her nine year old daughter. At that time, there were no pumps, CGMs, glucometers or even disposable syringes. She did the best she could following the guidance of the late Dr. Robert Hare, a Portland endocrinologist who recommended weighing every gram of food (carbs, proteins and fats) that entered my system. The specter of complications loomed large then and I somehow knew (though I don't remember anyone ever telling me this) that my lifespan would be shortened. Mom made it all routine and no big deal. I was encouraged to do whatever I wanted to do. No over-protection from her. And I've been relatively healthy these many years- no major complications. I'm still waiting for the cure ("just around the corner") that was promised that nine year old and Mom is still my rock.

November 15, 2012 | Unregistered CommenterLisa Borgen

It sounds like Arden doesn't hate drinking juice; she hates HAVING to drink juice at inconvenient times because of her diabetes. It's not the juice that's the problem, it's what the juice represents--a reminder that she's different.

December 9, 2012 | Unregistered CommenterEmily

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