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Arden's Day Blog

Arden's Day is a type I diabetes care giver blog written by author Scott Benner. Scott has been a stay-at-home dad since 2000, he is the author of the award winning parenting memoir, 'Life Is Short, Laundry Is Eternal'. Arden's Day is an honest and transparent look at life with diabetes - since 2007.

type I diabetes, parent of type I child, diabetes Blog, OmniPod, DexCom, insulin pump, CGM, continuous glucose monitor, Arden, Arden's Day, Scott Benner, JDRF, diabetes, juvenile diabetes, daddy blog, blog, stay at home parent, DOC, twitter, Facebook, @ardensday, 504 plan, Life Is Short, Laundry Is Eternal, Dexcom SHARE, 生命是短暂的,洗衣是永恒的, Shēngmìng shì duǎnzàn de, xǐyī shì yǒnghéng de

Filtering by Tag: Perspective

I've Never Been Hit in the Face with a Shovel

Scott Benner

This story takes place a few days after Arden's diagnosis in the summer of 2006...

If you've ever read our diagnosis story you know that Arden was diagnosed during a family vacation, just a few weeks after her second birthday. 

With the exception of one day, Arden spent that 'vacation' sick and waiting for us to figure out that she needed medical attention or in the hospital - she was released on a Friday, the day before we were scheduled to make the long drive home.

This was a day full of firsts for us. It was the first time that we gave Arden an injection in a restaurant, first time Kelly hung over the front seat to test a BG, first time I worried about driving with Arden and the first time I cried standing next to my car. It was also the first time I thought my son had cancer (he didn't and doesn't - keep reading).

It was a few hours after we ate at a roadside restaurant, the people at the hospital said we should retest after meals and so I drove as Kelly contorted herself and performed a finger stick from the front seat. The meter revealed that Arden required insulin. Of course we didn't know what the hell we were doing and had packed the insulin in the back of our SUV, I pulled onto the median and got out of the car to retrieve it.

I closed my door and watched Arden in her car seat as the dome light faded to black. Traffic was racing by us with such force and volume that I felt unsafe, this was;t something I would have done prior to diabetes. It was so dark and I couldn't see where I was walking, my eyes began to fill up with tears as I made my way to the rear hatch. A moment later was the first time that I drew a syringe outdoors, or in the dark for that matter. I had to lean over my son Cole to get to Arden's thigh because her door was on the traffic side of my car. I remember that feeling wrong to do.

Life seemed about as unfair as I could imagine as I plunged the needle into Arden...

I rubbed her leg and then turned my attention to Cole as I wondered what all of this must feel like to him. I smiled and put my hand on his face in an attempt to make everything feel okay, that's when I felt the bumps on his neck. I asked him to turn his head and saw that he had large bumps, that to my untrained eye looked like enlarged lymph nodes. The lumps were on both sides and ran down his neck from his ear to his chest. I though in an instant that he had cancer. Keep in mind that I had no reason to think that, it was just what popped into my head, "Lymph nodes > enlarged > cancer > Arden has diabetes > Cole has cancer".

I've never been hit in the face with a shovel but I bet I could describe the sensation with a grand amount of accuracy. The last thing that I felt that night was my hope leave my body. Every sense that I possessed shut off. I couldn't hear, think, smell, I stopped worrying about the traffic whizzing by - I was bereft in every way that we count ourselves as human beings. It's a good thing too because the ride home would have been unbearable if my senses were intact.

The next morning we took Cole to the doctor, he of course did not have cancer and we were told that it isn't uncommon for the lymph system to become enlarged during an infection.

With hindsight I can see that this moment was among the first in a long line of lessons that Arden's diabetes has taught me. Before this moment I thought of myself as someone who didn't panic, I believed myself to be cool under pressure. As it turns out, I had never been under this level of pressure. I know for certain that I wouldn't respond like that today because the person I have become, or perhaps I should say, the person diabetes has forced me to become - doesn't break so easily and doesn't give up so quickly. Diabetes takes far more than it gives but the stuff it gives is valuable - it's one of my goal to pass that message onto Arden and to all of you.

more posts on Arden's Day

Diabetes Breaking Bad

Scott Benner

I wrote about this the day after it happened a few months ago but haven't posted until now.

My story about last night begins one week prior... it is an epic opus that answers the age old question, "Will diabetes ever get easier".

My son Cole and I left for Virginia early last Friday morning to attend a four day baseball tournament. The ride took nearly six hours and the games began soon after we arrived. It was during that road trip that I first notice how different the weekend would be without Arden with me, you know, because when I got hungry and reached for a snack... I realized that I didn't pack any food for the trip. If Arden was with me – I would have had enough food to feed ten people.

The next thing I knew I was at a rest stop paying $400 for pretzels and an iced tea, it occurred to me as we checked out that this was the first time that I didn't experience any sort of separation anxiety about leaving Arden in another person's care. Don't get me wrong, my wife is an amazing D-Mom, but I still worry. You know what? It's not worry, it's more a feeling of shirking my responsibilities. This was the first time that I didn't feel like I was passing off my responsibility, it was the first time I didn't feel guilty. "Maybe", I thought, "maybe diabetes is getting easier?".

Kelly and I spoke once during the four day trip (Cole's team came in second place!) about diabetes, Kelly was handling things perfectly and really just needed help deciding if a high BG she was battling with was food or pump related. When she called, I felt like a consultant.

When we returned home Monday night it was almost eight in the evening, thirty minutes later Kelly and Arden arrived at the house from Arden's softball practice. Kelly promptly packed a suitcase and left for a three day business trip. We almost didn't see each other except to pass on the details of Arden's BGs. 

The next morning I was unprepared for reality and still pretty tired from all of the driving I did on Interstate 95 so I took the kids to a morning movie. We sat down with a little popcorn, ready to enjoy the show. Then things broke bad...

Arden's insulin pump experienced an error and shut down about half way through delivering her popcorn bolus. I took a deeeeeep breath and said, "No big deal, just eat a little less popcorn and I'll keep an eye on you BG with the DexCom receiver". I remember thinking that we could stay for the movie and Arden could snack a little. I didn't want to drag everyone out of the theater and back home. Arden looked disappointed to begin with (and hungry) and she had brought a friend with her. Lots to consider. I reached into her bag for the DexCom receiver, and it never ceases to amaze me when this happens but, it also was having trouble operating.

I'm not going to lie, I recited a string of extremely offensive curse words to myself as I looked down at those tiny, glowing and useless screen.

Arden looked mortified and asked, "We have to leave, right?". I replied, "No way! I want to see the dragon movie, we are staying... just eat the popcorn really slow – like one piece at a time. I know that sucks but its better than leaving, we can go home after and take care of all this".

And that's what we did. Then we went straight home put on a new pump, changed the pesky CGM sensor and bolused like there was no tomorrow. Arden's BG was back to normal again in a couple of hours. 

The next few days haven't gone much better. We have a couple of overused sites that need a break, sensors haven't been giving the best feedback and when I finish writing I have to call Insulet because Arden's PDM is causing her Pods to error every time I change the batteries. But none of those annoyances can hold a candle to last night.

Last night was one of the longest diabetes nights that I have ever lived through. Unexpectedly high numbers led to blousing that didn't accomplish much. Those boluses led to an injection, that led to a pod change and more bolusing... I didn't close my eyes at 6:30 am. It was the first time that I was glad that I missed 'Breaking Bad' when it was first on television because no show makes you not care how exhausted you are quite like 'Breaking Bad'.

Kelly is still away for work so the last I did before watching the sun come up was to send my son a text that read,

"Cole. Arden's BG was tough last night. I didn't go to sleep until after 6:30am. Please watch her CGM and wake me if you need to. Don't let me sleep past 11:30. Thanks!"

These last few days have been as unpredictable and taxing as I can recall and I'm fine. I didn't make myself nuts when I left Arden last week, I didn't overreact when shit went wrong, never felt scared at the theater or when I woke up this morning. It's just another day at the office but not because diabetes gets easier, it never gets easier – you just get much better at it (which is kind of the same thing but, you know, different).

Carry that Weight

Scott Benner

I can feel myself getting older, at least I think that's what this feeling is - I can't really tell. Sometimes my head is so foggy that I can't envision accomplishing anything in a day beyond fighting with diabetes. I do have moments when I think that all I need to do is push a little farther, jump back on a treadmill perhaps, retune my body. Then the fog surrounds my day and I run out of time, energy or the will to push myself.

I have this recurring thought that tries to sneak into my mind when I get tired like I am right now, but I don't allow myself to concentrate on it. I wonder if you know what I am talking about? It's a thought that I can see it in my mind's eye and I know what the entirety of the thought is. That is, I know what words I would hear in my head if I allowed my mind to settle on the idea and consider it - but I don't let myself do that. I never think about how much I look forward to the day that I can sleep, exercise or concentrate on myself because those thoughts feel like giving up on my daughter. I know that's unreasonable, but it is how I feel.

It's no great secret why I don't think about those things or why I imagine that I won't be able to do them when the day comes that Arden leaves for college. How would I do that? How could I possibly do that when Arden can never get away from diabetes. I don't like thinking about diabetes as an attachment to Arden. I want to feel sad on the day that Arden grows up and goes off on her own, that good kind of sad that tells you life is progressing in the way that you hoped.

That's why I'm trapped in a maze with no exit, we both are really. One day, a door is going to open and I'm going to be invited to walk through it, but I can't imagine walking through that door and leaving Arden behind to wander this unrelenting maze by herself. Moreover, I don't want to feel relief when Arden moves into the next part of her life. I want that happy sadness, I want hopeful, I want future - not relief. 

Boy, you’re gonna carry that weight
Carry that weight a long time
Boy, you’re gonna carry that weight
Carry that weight a long time

I never give you my pillow
I only send you my invitations
And in the middle of the celebrations
I break down

Boy, you’re gonna carry that weight
Carry that weight a long time
Boy, you’re gonna carry that weight
Carry that weight a long time
— John Lennon, Paul McCartney

I am as hopeful about life with type I diabetes as anyone that you'll ever meet but some days, and maybe it's just these long sunless winter days talking but, some days feel like we are surrounded on all sides by a unstoppable force intent on our destruction. 

I don't say that life needs be fair, but it would be nice to be able to imagine an end game.

It would be easier to fight on days like today, if it didn't feel like we were only fighting to get to tomorrow... so that we could fight some more. 

I don't mind carrying the weight, I never expected being a parent to be easy, but I can not accept having to pass that weight to Arden one day, like a weary baton carrier. I can't spend the end of my life watching her shoulder that burden when I know how heavy the relentlessness of diabetes feels to even the people who are living well with it. I imagine that we all feel like this sometimes, know that you are not alone. But we have to leave those feelings behind us and continue to move forward. There has has to be an answer somewhere out ahead of us. We can fight one more day, and another if necessary. I believe in us even on cold, grey and dank days. I believe in us when the sun feels like it's behind a thousand miles of heavy clouds. I even believe when diabetes weighs more than I can carry - I believe because the men that wrote this song, are the same men who saw the sun coming. I know that we can carry more then days like this lead us to believe. 

I've never said this before but, I want a cure and I think I want it as much for me, Kelly, Cole and all of you, as I do for Arden. 

Fight one more day, and another if necessary.