The Descendants Made Me Cry 3 Times

WARNING - This post is full of spoilers for the movie.

This past weekend I found myself exhausted but unable to sleep. Remarkably, it wasn't diabetes that was keeping me up (like it did the five nights prior), this night I was trying to stay awake so I could pick my son up from a party at 1 am - so I turned on the television and found that 'The Descendants' was about to begin.

The movie follows a man (George Clooney) as he comes to terms with the news that his recently comatose and soon to be dead wife, was cheating on him. There is a scene toward the latter part of the film where the wife's father (played by Robert Forster) puts his hand on his adult daughter's head and kisses her while he is coming to terms with the fact that she won't be waking up. That made me cry the first time. It was a small moment in the film that was very touching, but did not effect me personally.

After the movie ended I made my way to Arden's room so I could make some last adjustments to her basal rate. When I was finished, I bent down and kissed Arden on her head just as I always do before I leave her room when she is sleeping. It was then that I began to cry for a second time, this time it felt personal. This time I thought about losing my daughter as the man did in the movie. I thought about how hollow the world would seem without Arden, and I wondered if I would want to exist in the void that her passing would leave.

I never thought about diabetes...

Until I did

I walked into our bathroom to collect myself because Kelly was sleeping and I didn't want to wake her. It was dark and so I could only make out shadows. There are personal photographs in that room and one of them is of Arden standing on the beach, it's from a few years ago and she is walking toward the surf with her hands stretched out to her sides. I took that picture as I watched her walk away from me. She looks like she is trying to absorb how wonderful the moment was... like she wants to hug the sun. I love that picture.

I just about had myself together when I heard Arden's CGM beep

Then I thought about diabetes and all of the things about it that we try to guard against but don't speak about very often. I thought about the possibility of long-term complications. And that's when I fell apart.

I was okay a few minutes later. I pulled it together and reminded myself that I get extra emotional when I'm tired and then I went back to Arden to check on that CGM.

I'm sharing this story today because I imagine that something very similar to this has happened to you - and it will happen again. It's totally normal, expected and human and I wanted you to know that it happens to me too.

BTW, I really liked the movie, if you've never seen it you should check it out sometime.

Pooh. Gilly. Bear.

Arden has been fighting off a cold for the last week and her BGs have been low overnight as a consequence. We've used up more juice boxes this week then in a literal year of overnights prior. I'm beginning to drag a little bit from the experience but Arden, despite her distaste for drinking juice when she isn't thirsty, is taking it all in stride.

I can't seem to avoid these lows, I've tried everything. By the time this story happened I had resolved myself to the fact that we would be dealing with low overnight BGs until her cold passes.

But anyway... last Friday we went to the movies and saw Monsters, Inc. Many hours after the movie ended in the wee hours of the morning, Arden's CGM alarmed and woke me. I checked her DexCom receiver and saw that her BG had fallen well below the low threshold, so I tested. Arden needed to drink a juice.

I was able to wake Arden with very little issue and she began to drink. I held my left hand behind her back at one point because she was having trouble holding herself up. When she finished the juice she handed me the empty box and said, "Thanks poohgully bear". Her words seemed without meaning, I was startled by her jumbled communication. Perhaps her low blood glucose was more severe then the Dex and meter indicated. I was worried that she was becoming incoherent. I asked her, "what did you just say?" and without missing a beat, she smiled and said again, "Thanks poohgully bear". I responded this time, "Arden, I'm sorry but I don't know what poohgully bear means. It sounds to me like you are saying, Pooh Gilly Bear".

"No, not poohgully bear", she said. Then she spoke the words again only slower saying, "Poohgully bear". In this instant Arden and I had slipped into an Abbot and Costello routine. I was sitting on her bedside saying, "pooh gilly bear" and she was responding with words that sounded, to me, exactly like what I was saying. Finally I realized that everything else about our conversation, sans poohgully bear, was very coherent so I stopped worrying that her BG was much lower then indicated. We agreed that I wasn't going to understand her message and we said goodnight. I told ther that she could go to sleep, adding, "I'll be back to check on you in about fifeteen minutes".

Before I walked out, I couldn't help it, I asked one last time "poohgully bear?". Her little voice answered back in the darkness, this time very, very slowly, "pooh gully bear". I laughed and said, "Arden I'm hearing pooh and bear but I just can't make out the middle word... are you saying gilly?" She answered only, "Never mind" and then giggled. I left the room expecting to never know.

Her BG leveled out some time around 3 am...

The next morning Arden and I were making breakfast together while Cole and Kelly slept in. I brought up our conversation because I wanted to know, even though I imagined that she wouldn't remember. "Any idea what 'thanks poohgully bear' means" I asked.

Then Arden said this, "Remember last night we saw Monsters, Inc., it's what Celia calls Mike... poohgully bear".

I laughed so hard that I thought I was going to break a rib and then replied, "do you mean Googley Bear?".

"Oh, is that what she calls him... sounded like Poohgully Bear to me".

We smiled at each other and then I couldn't help but to walk over and gave her a big hug.

Most low BG stories aren't any fun, but this one, this one needed to be shared.

Click the image to hear Celia

Update on Monday, March 18, 2013 at 9:45PM by Scott Benner

My new book, "Life Is Short, Laundry Is Eternal' is available now - Amazon/Kindle - Barnes&Noble/Nook 

Update on Monday, March 18, 2013 at 9:45PM by Scott Benner

My new book, "Life Is Short, Laundry Is Eternal' is available now - Amazon/Kindle - Barnes&Noble/Nook 

Have a Happy and Silly Thanksgiving

We hope that you have a peaceful and loving day surrounded by those you hold dearest!

Be well...

I'm Blue

Our 2nd JDRF Walk shirt, circa 2007

Today is the first Blue Friday of Diabetes Awareness Month. Wear something blue today and then tell a stranger why you are. Continue throughout the month to wear blue, and each Friday of the year.

Wear blue, spread the word!

Follow the hashtag #BlueFridays on twitter.

Day one of our New School Plan

Arden went back to school today to begin the third grade so it's time to put our new plan into action and see what happens. I had a nice 45 minute meeting with Arden's teacher and school nurses yesterday so we could discuss how the shift in care was going to happen. Having interested, committed and kind people on the other side of the table is such a pleasure, I wish I could thank them everyday for being so wonderful and adventurous.

I say adventurous because today Arden became the first child in the history of our school district to manage their type I diabetes without being required to do so in the nurse's office. I say wonderful because even though we are forging into uncharted waters, no one at the school is freaking out or getting cold feet. I suggested yesterday that we just begin down our new path together and let the process grow and adapt at it's own pace. I was thrilled when everyone agreed even though what I was asking for is covered by state laws protecting children with diabetes and Arden's Endo backed 504 Plan. What I hear from so many of you is that most schools get scared and put up walls when you try something different. For that reason alone I feel very lucky today that I have the relationship that I do with these amazing educators.

What is this New Plan all about? How does it work?

In the past Arden visited the nurse for every diabetes related decision but now she will only be going to their office if an emergency situation arises. We are going to try and limit the visits to unexpected low blood glucose readings, dizziness and other such moments that feel like they aren't manageable over the phone.

I began my day by visiting Arden's class to explain that this year would be different then last. Arden's entire class moved from second to third grade together this year and their teacher stayed with them so everyone understands the nuts and bolts of Arden's nurse visits and testing. This short talk was to take a bit of the excitement away as I don't want the exuberance of the children to cause the teacher or Arden to feel uncomfortable. You may be wondering how seeing something that they all witnessed last year as Arden's nurse visit companion will be exciting? Well, Arden will be communicating with me from her desk with her iPhone. We will be using text messages whenever we can but Arden also has carte blanche to call me and I her as we need/see fit. Talk about progressive, right?! 

I'll be right back... she's texting now...

We just set a temp basal via text and she is going to test in 30 mins and then text me. This is working!!!

Anyway, there are snacks in her class (see above) plus juice boxes in a small refrigerator. She will be carrying her OmniPod PDM as well as a juice box with her from class to class and every room that she visits (Gym, library, etc.) also have snacks stashed with the teacher. I've tried to set the school day up so that her experience in the building mimics the one that she has every other day. Arden doesn't make her bolusing decision autonomously yet so with the exception of the texting/calling, this won't be any different then when we are at home. Actually, sometimes we do text about BGs from room to room so I guess this is almost exactly the same.

Why is this so different?

Arden's school district teaches a number of children with type I diabetes. Many of them test and bolus without supervision, especially the older kids, but they all do it in the nurses office and then record their actions into a log. The school can claim what they want but the log is mainly kept to protect the school from litigation. The kids may use it for reference but make no mistake, it's there to cover asses. Arden doesn't have to submit logs to the school and unless she ends up in with the nurse for care, they won't be apprised of the steps we take throughout the day. It's a different approach then most take but I think it will go a long way toward giving Arden more confidence and independence. Perhaps best of all Arden won't be leaving class so much throughout the day. I found myself so concerned with type I related safety at school that at times I was willing to ignore that so much of the education day was being missed.

typos: Daddy 1 - Arden 0

Day one wrap-up:

Our new plan worked well on the first day. There was one instant where Arden didn't hear her text message alert so I waited for a few moments and then called her. I received texts during class, library and from the bus. There was a bussing issue in the afternoon that caused Arden to be stuck on the bus for much longer then we plan for and her BG did begin to fall during the ride. The entire event was handled by Arden with one text and a phone call.

Later in the day I received a phone call from Arden's teacher, she just wanted to reach out to say that everything felt smooth on her end and the addition of the testing and phone to the room was never an issue. She praised Arden for being so mature with the phone, we chatted for a few minutes and agreed that day one was a success. On to day two...

Special Request

I held this post back for one day so that I could write about the 'Unfathomable Loss' that one of our fellow DOC members recently experienced when her husband was taken suddenly by cancer. I hope that you can take the time to read my post about Meri and her family.

Update on Tuesday, October 2, 2012 at 8:28AM by Scott Benner

The first follow up to this post, 'New School Plan UPDATE: Emojis and texting DexCom data' is located here