Diabetes Forecast Magazine

Keep your eyes open for an interview with me in the upcoming June issue of Diabetes Forecast Magazine. I'll be featured in an article titled, "Fathers Know Best".

This Picture Makes Me Smile

Do you see Arden in the middle of the purple glowing smoke, the one wearing the hat. Arden danced the night away on Saturday during her first Bar Mitzvah without a care in the world. I just wanted to take a second to tell everyone how grateful my family is for the technology that makes moments like this better. Without Arden's DexCom G4 I would have interrupted her fun countless times during the evening. Each time taking her from the moment and drawing attention to her diabetes. Instead, we were able to monitor her post meal BGs from across the room and when she did require a bolus of insulin, I never took her OmniPod PDM out of my pocket. 

Wireless. Tubleless. Goodness.

Knowing that Arden was safe, carefree and completely unencumbered by diabetes while she danced is a feeling that may be lost on other parents, but I think that every parent of a child with type I will look at his photo and smile along with me. As a father, I found this moment to be completely joyous - nothing beats seeing my kids live without limits.

Have a great week!

Scott

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.

Argo

We don't have many diabetes ready babysitting options, and so we don't go out very much by ourselves. I'm sure that sounds familiar to a lot of you. Earlier in the week I found myself wishing that Kelly and I could get away for a couple of hours and then it dawned on me... Arden and I are managing her blood glucose so well via text messages from school with no adult involvement, why couldn't we do the same with her at home and me in a remote location?!

I enlisted my mother to babysit and told her that there wouldn't be any diabetes related decisions to be made. So with the comfort of knowledge that our New School Plan has brought, Kelly and I made our way to the cineplex and saw a movie that didn't have one, not one, talking animal in it!

It was the opening night of 'Argo' and so the theater was packed. Since we couldn't find a seat without a direct neighbor, I felt like I owed the person sitting to my left an explanation for why I'd be texting during the movie. A few moments before the trailers were about to begin I excused myself and spoke to the woman sitting next to me.

"Hi, I'm sorry to bother you. Our daughter has type I diabetes and I'm going to be helping her manage her insulin by text message during the movie". I was prepared for about a thousand different responses, every possible reply except for the one that I got. "Us too, well, our daughter has type I too", she said. "She's older now... how old is your daughter, when was she diagnosed?". We chatted for a few moments about our girls and then she said not to worry, put her hand on mine and told me that she hoped we enjoyed the movie. I smiled and said, "you too". It was like twitter, but in real life.

I guess we can get out more often now... It's been so long, pretty excited!

Oh, and both Kelly and I thought that the movie was excellent, really, really well done. Suspenseful and tense, even though we knew the outcome.

Ask Me Anything Answer: Kelly

I received this question from an anonymous poster on my 'Ask Me Anything' discussion board.

From posts and talks, it seems you are the only caregiver of Arden's diabetes. Understanding you're a stay at home dad, probably works easier that way, but I was curious how your wife is involved.

This is a great question and I am very glad that it was asked!

It was clear almost from day one that Arden's diabetes was a full-time job and that the 24/7 nature of the disease required a full day view of the events that not only transpired today but for the days prior. Those truths make handing Arden's care back and forth problematic. With that knowledge Kelly and I decided that one of us should be the primary and because I am a stay-at-home dad I was the obvious choice. If we were making the decision based on who was prettier, smarter or more detail oriented, Kelly would have gotten the job!

Arden's Day is written from my perspective and I don't share my stories in other's voices so it may seem like Kelly isn't as involved as she is. This is an unfortunate side-effect of blogging and why I was so glad to receive this question. I can be wordy so in an effort to keep my post to a readable length I avoid writing a lot of dialogue. Whether or not my writing is in any way special is up to the person reading it but I think my strength is bringing a reader into how I feel and allowing them to leave the text with the emotions that I experienced. I find that when a post has too much, 'and then he said this and I said that' things have a tendency to get muddled. In an effort to stay as short and sweet as my gabby mouth allows, I simplify some situations and combine characters. If Kelly and I confer for example, I may just relate that conversation to you as an inner monologue.

All that behind the curtain stuff aside... here are the ways that we manage things at our house.

During an average day I handle type I autonomously. I wake up every morning before Arden and check her BG and make adjustments if necessary so that she can begin her day with an in-range number. I come back into her room about 30 minutes before she eats breakfast and we pre bolus for the meal. During the school year Arden and I converse via text and phone throughout the day and make decisions together about her insulin, food and other type I needs. I am here when she arrives home and we take care of meals, bedtime and the rest. I wake up or often stay awake throughout the night to help keep her BG from causing issues as she sleeps... then we do it again. I take care of OmniPod changes, DexCom insertions, I order and maintain the supplies and go to the doctor's appointments. We handle things this way to make the best use of the knowledge base that continual exposure to type I care brings to me, not because Kelly can't or doesn't know how to handle them on her own. Kelly has a rather high pressure, long hour type of profession that uses a great deal of her time. We like to keep the time that she has left available, as best that we can, for her to enjoy our family. 

When all of this gets the best of me, and it frequently does, I reach for Kelly and she takes over until I can be ready again. Kelly will take an overnight for me a few times a month and there are days on the weekends when she manages Arden all day and night without my involvement to give me a break and keep her up-to-date with how Arden's type I management is morphing. It's difficult to pass care because there are so many little tricks that I use and adjustments that I make on the fly, these small but important decisions are bred from countless hours of managing diabetes and can't be easily passed on to another CareGiver. For example, I gave Arden more insulin this morning then I usually would have based on three factors; a BG that we got yesterday at the same time of day, the fact that she is on the first day of a new pod and a spike that I saw on her CGM overnight. You just can't teach that stuff and it takes a lot of time to absorb, if Kelly (or anyone else) were to have began the day caring for Arden they wouldn't have the benefit of those three experiences and would have no way to know that a change was required. In kind, I didn't know until I took the last steps of the morning and put it all together in my head. It really is true that diabetes management is more of an art then a science! 

I know from speaking to some of you that the method I described is very similar to how many two parent homes handle type I management. I think that each parent needs to have a working understanding of the way type I is handled because everyone needs a break once and a while and care shouldn't have to suffer during the moments of respite. I feel extremely lucky to have Kelly waiting to take the meter from me when I pass out, it's an ugly baton pass that very frequently begins with me slumping over on the sofa.

I'm going to borrow a passage from my own book and share it here. The book is only in it's first revision so this bit may or may not make it past editing but it will tell you all you need to know about Kelly and what she means to me and our family. I wrote this passage in the chapter that tells the story of Arden's diagnosis and subsequent hospital stay...

On the nights that are the hardest I think about Kelly in that crappy vinyl chair, sitting with sand in her ass, legs asleep and having to pee for the last twelve hours and I keep going in honor of what a great mom she is to our kids. I try my hardest to respect the fact that if our roles were reversed and Kelly was the one staying at home that she would provide daily that same level of care, love and concern that she did that day. I do what I do because it keeps Arden healthy, I do it because I love her, but I do it the way that I do it with Kelly’s example as my guide.