Yesterday morning I entered Arden's room about an hour before her alarm was scheduled to sound. Her DexCom G4 was asking to be calibrated and so I put a test strip into the OmniPod PDM, turned the MultiClix to a new lance and took my daughter's hand in mine.
As I was choosing a finger to strike a hole into, I noticed that her hand felt heavier then it did the last time that I held it to test. I was certain that it hadn't grown bigger since the day before, but yet it felt unmistakably heavier. I sat on her bedside as the machine did it's job and found myself feeling lucky that I have these moments with my sleeping girl. Not too many people get to do this I thought. I get to hold Arden's hand almost every evening after she has fallen to sleep and those moments give me a different perspective on her growth and allow me precious time to gaze at her growing face.
So if you are in need of a silver lining today, maybe this thought could be one for you. We get to hold our kid's hands while they sleep.
I like to wonder about the things that I struggle to understand. I find it relaxing to think about something that I can not fully absorb and then push myself to grasp every facet until I can feel my mind stop trying. That point is the wall, it's the end of my understanding. The topics vary, often I think about type I diabetes, my marriage, my children, what happiness is. Lately, if I'm being honest, I think a lot about how to help my book to find new readers.
I love the quiet that exists when my brain doesn't know where to go next. I don't consider hitting that wall as an impediment, I find it exciting, I trust that new concepts will eventually appear and that anticipation is electric. Sometimes nothing comes, I take those moments as a sign that I'm in uncharted waters, a place that I've yet to explore and I find the challenge to discover new ideas to be intellectually sexy.
Recently at the 2013 Lilly Diabetes Blogger Summit, I realized that there was a new place where answers about type I lived, a place that I didn't yet understand how to get to. That moment was exciting because it meant that one day I could do an even better job of keeping Arden's BGs in range. I like that idea very much.
Olympic skier Kris Freeman visited with our group at Lilly and during part of the discussion that we had with him, he spoke about his team. There are people that help Kris to optimize his insulin regiment so that he can perform at the peak of his promise. His team has, of course, access to machines and monitoring equipment that I don't have. More importantly they posses the know-how and intellectual prowess (far beyond mine) to read Kris's data and implement changes. Now, I don't have a team and I'm not a doctor but neither of those truths brought me down, on the contrary... they made me feel hopeful. If a bunch of smart guys can figure out how to keep an Olympic skier's BG from fluctuating, I can figure out how to mimic that response in a little girl whose sitting in a third grade class and playing softball a few times a week - right!?
It should be known that despite the vigorous testing, his team's calculations aren't always fool proof. Kris told us a story about a wildly varied BG that snuck up on him just before a race. His tale left me sure that diabetes is a wild bucking stallion for everyone at times. I loved how normal I felt listening to an Olympic athlete tell me that his BGs got crazy just like Arden's, it was so genuinely comforting to hear him speak those words.
Back before I knew what a CGM was I would test Arden's blood glucose at odd times just to see where meals and insulin would take her BG. I remember this one day in our Endo's office, Arden's NP asked how her A1c was so good when all of her BG checks where so high, I said, "Oh don't pay attention to those numbers, I'm trying to figure something out". I didn't exactly know what I was doing back then, what I did know is that there was some variable that I was struggling to comprehend, I could feel that it wasn't right to shoot insulin and then just except that the next three hours where okay. Today, thanks to those BG checks at crazy times and the advent of CGM technology, Arden's BGs are far more level and controlled. Tomorrow, thanks to Lilly and our meeting with Kris... I have something new to wonder about, something that may well bring all of this into even better focus. I can't wait to find out what lies beyond that thought.
There's always an answer. Please don't stop looking for it just becasue you've reach the end of your ability to understand. Push yourself, experiment and ask lots of questions until your conversations bring you the answers that you deserve.
Lilly Diabetes invited and paid for me to attend the 2013 summit. Airfare, lodging, food and transportation was all covered by Lilly. I did buy a jammin' lemon pound cake slice for myself at the airport. They never asked me to write about my experience or in any way tried to sway my opinions.
I wanted to share an excerpt from 'Life Is Short, Laundry Is Eternal', in honor of Mother's Day. This slice is from Chapter 12 which is titled, "I May Be Growing Ovaries".
I saw a movie back in 1996 called Microcosmos. It’s a documentary about insects. The filmmaker used incredible close-ups and time-lapse photography that gave me as the viewer the feeling that I was standing next to some of the most amazingly varied and fascinating living things on the planet. Slowing down the filming let me examine each step of each frame in a way that left me feeling like I’d experienced the subject’s entire life in just a few moments. As truly awe-inspiring as the film was, my real takeaway leaving the theater was the knowledge that all of this was going on all around me and I never knew it.
It may sound a bit crazy, but that is how I see motherhood. Each day is full of wondrous and critically important moments. Endless decisions are made and carried out by our moms in homes all around the world. Each step holds the hope of survival, growth, and prosperity, but as important and plentiful as these women and their work are, it goes unseen by most. When someone does finally pay attention, it’s unlikely that the viewer will take the time to learn about the complexities of these seemingly simple tasks. You can watch bees collect nectar and dismiss it as just bugs eating, or you can spend a few minutes understanding how their repetitive act literally makes the world spin.
This chapter is dedicated to the women I know who asked me if my book was going to help their husbands to understand what they do all day. I hope this is what you had in mind, girls. I don’t just think that you are the center of everything, I know that you are. I may not be a woman, but I try very hard to be even half the mom that I know my gorgeous wife would have been if our lives would have gone a different way. I hope every day that I am making Kelly proud, while properly representing all that you ladies do, feel, and love so diligently when no one is looking.
It was a long Sunday and the nights hours were burning away quickly. We just wanted to have a fast and easy dinner when we made the call. It ended up being anything but.
I pre-bolused. I counted carbs. I over-estimated those carbs. I set temp basal rates. I did everything that I know how to do and two hours later, it appeared as though my foresight had won the battle. Arden's BG was 150 two hours after insulin and some ninety minutes after she finished eating. I was victorious!
That victory was however, short-lived - Chicken and rice... not so nice
The next few hours were a slugfest. I traded punches with diabetes all night. It hit me in the jaw, a countered with a bolus. It responded with a gut punch, I shot insulin with a needle. Uppercut, water bottle. Jab, Temp basal. We went back and forth like two prize fighters in a ten round fight. This exchange went on until four in the morning, I was staggered by the unrelenting nature of the attack. Defeated physically as well as spiritually.
We just wanted a number four with dumplings
It's so incredibly frustrating at times. The old diabetes adage really does stand true. You can do everything that you did the day before in the exact same situation and get completely different results. We don't make a habit out of Chinese take-out, but I was certain that I had developed a great system for combating those crazy carbs. Not on this night I guess, my best laid schemes failed me.
But little Mouse, you are not alone, In proving foresight may be vain:
The best laid schemes of mice and men
Go often awry
The most difficult part of staying up overnight in these situations isn't the loss of sleep, though that did eventually catch up to me. It's the stillness of the dark and how it allows you the time to reflect on what the high BG is doing to your child's body. The darkness makes me want to be better. Do better, make better decisions. I do a fair job of not beating myself up in these moments, I try to learn their lesson. Knowing that you are standing in the dark with me helps keep that attitude in the forefront of my mind. We are only alone in these moments if we forget that somewhere, there is another person just like us, having the same doubts, fighting the same fights. The DOC is always with you!
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.
Thursday, May 23, 2013 at 10:11AM 
