No D day: Screw brevity, we're talking the secret to life

Sometimes thoughts require more time to ruminate then my schedule permits... this post is what happens when I'm excited by an idea but don't give it enough time to solidify in my mind. I though that it may be interesting for you to see an unfinished thought... 

The thought of sitting down and committing words to an idea in long-form makes me happy inside. I likely could spend the rest of my life discussing and dissecting topics, what topics? Doesn't really matter. I just love to take ideas apart to see what made them. I've always wanted to be a writer because the time of sitting around a fire and talking endlessly is far past and writing seems like the last way to completely explain a view of and to the world. What follows is less of a complete thought and more of a guide to imparting ideas, preparing children and the pursuit of being able to explain your experiences in a way that makes you feel like you've helped someone. I think the kids call it blogging...

That's right - I've got the secret to life and No D day seemed like as good a time as any to give it away... Think of this as a poem to communication as it may have no traditional beginning, middle and end but does include seemingly disjointed thoughts that I gaurentee will leave you feeling like you understand the secret to life.

If brevity is the soul of wit, what does that make length and contemplation... I assert that it's the soul of understanding and of finding truth. Thoughts and ideas have levels and they are initially understood by people at different depths. A conversation about recycling may sound like talking about trash to one person while another in the group fights back the emotions that come with contemplating the end of the world. Spend enough time talking and the complexity of the issue becomes apparent to all as it's levels and depth are revealed. Just because a concept first strikes you on one level doesn't mean that you can't come to understand it on all - but you have to be willing to devote a few minutes and open your mind to something that may not at first make sense.

While brevity has it's place and is the preferred tool of communication (and blogging), I think that at times it does us harm. Often we are overwhelmed by the thought of disseminating our knowledge. The emotion of wanting to be clear and heard overwhelms. The pain of not being able to articulate your thought in the way that you desire often causes us to convey complex concepts in far too brief and non descriptive terms. How many times have you heard that, "being married is hard... you have to work at it"? We've all listened as a new parent proclaim, "I'd do anything for my baby". These phrases and thousands more are thrown around as if they are sage-like wisdom but honestly they are neither helpful nor do they resonate with the kind of understanding that they require.

I'm going to use my first example to make my point. Of course being married is hard and obviously it requires work to maintain any relationship but how is that advice in any way helpful? It's not the being married that is difficult, it's the not saying something stupid at the wrong time, it's being giving of yourself when you feel like you don't have any more to give. It's acceptance, forgiveness and selflessness, those things are hard - not being married. Even though I've broken the idea down, my words still don't constitute any actual advice. I would have to take each thought and separate them into their own thousand words to clearly leave you with a meaningful direction to follow. What does it mean to be accepting? That concept is a chapter in a book, an hour in a conversation and should not be carelessly boiled down to some trite sentence and passed off as advice. 

Our lives our setup in a way that doesn't leave time to listen to a more learned person speak at length about the things in life that matter most but often seem unimportant. That lack of time is the precise enemy of happiness. The not sitting still and listening and by extension the not taking of time to impart the knowledge that you've amassed is destroying our ability to grow. We can't build a skyscraper if each time a shift change happens the next person chooses new fertile ground and starts over. We have to continue from where the last person left off, understand the mistakes they made, adapt and forge on.

When I imagine my life it looks like a road that at some point encounters a fork. Each path after that has it's own fork. When I step back from that image, it appears to me as a tree that grows endlessly into the sky. All of the branches lead to a slightly different destination, all somewhere at the top of that tree. I want to get to the highest, happiest spot that I can before there are no more forks in the road to choose from - but that's not my life goal, that's just one thing that I want to accomplish. My goal is to set Cole and Arden on their own road and give them the insight to consider each fork with not just the map of knowledge that they've amassed but with mine and Kelly's as well. I want to teach them to slow down and consider the depth and level that ideas happen on before they choose which way to walk next. I wish for them the personal serenity that is required to listen, filter and apply the wisdom that others that they meet impart. I hope that they have the love for speaking, writing and hearing thoughts at length in the way that I do... because "being married is hard" doesn't constitute advice or guidance.

When you speak to your children please don't leave out the stuff you messed up or struggled with. In fact, I'd lead with it. I'd tell your kids every stupid, poorly considered and just plain moronic choice that you made, show them where potential speed bumps will be and if you can't... because you just don't know how to, if you can't tell them how to avoid those bumps, find someone that can - no shame in it. Be transparent, show them your human side, let them know that it's not just okay to mess up, it's expected. Tell them to go make their own mistakes. I find no life sadder then the ones that appear to be nothing more then Mom 2.0 or Dad part II. It may feel easy to see a child doing familiar things in familiar ways but in my opinion, that's a wasted life - you already lived that life. Your children should be reaching in a way that makes you nervous. They're lives should feel unfamiliar to you, new, exciting and unsure.

Bonus thoughts... (like an extra chapter in a paperback)

The act of planning to express yourself in words has this wonderful side-effect. There is this thing that happens when you know that you are going to sit down and write, you really pay attention to life. Knowing that I want to blog causes me to focus on things that may, very reasonably, seem like minutia to most. I hope that I can convince you that those small moments aren't filler but in fact are where life happens. There is depth everywhere, levels to everything, the beauty is in the moments in between the things that stand out.

I just might have a problem that you'd understand

Arden's blood sugar fluctuates, that's no surprise to me or to you. It goes up and down, somedays more then others. There are times when it stays steady and the line on her DexCom CGM seems to be perfectly still.

My very soul feels attached to that line and I ride it like a roller coaster. Most days I don't feel the stress or hold myself personally responsible for where that line goes. I just do my best to keep it steady. The amount of care and effort that goes into managing that line is immense. It starts with grocery shopping as I try to plan meals that are healthy and have a low impact on Arden's BGs. It's tough with younger children because I'm also trying to find foods that they enjoy while gently directing them to healthy choices. Then there is pre-bolusing, the act of administering insulin before a meal to aviod spikes in that line, administering the insulin, watching that she eats and on and on. It must sound strange to an diabetes outsider but all of that is incredibly stressful and it happens every few hours.

The stress stems of course from the knowledge that high BGs are dangerous to Arden's longevity and the lows are no better. The real source of my terror is that I know Arden isn't feeling her best when her BGs aren't in range and steady. Every meal, every snack is an oppurtunity for her to live an hour or three in a way that any parent wouldn't want for their children. I feel all of those minutes in my heart in a way that would take a thousand words to describe.

When she seems to space out on the sofa as her insulin struggles to bring her back to normal, I feel like a die a little inside. When she falls to sleep at night as her BG drifts down, I watch hoping that it will stop where I need it to. When it doesn't and she gets too low, the moments strikes at my soul. If she stays too high and I have to give her more insulin, that's just another night that I don't sleep. In all, almost every moment of the day is lived in uncertainty.

Last night I just couldn't be strong anymore. I tried but when Kelly and I went to bed, I layed there taking deep breaths, trying in vain to expel my stress but I couldn't so I pulled Kelly close to me and when her skin touched mine I began to cry.

In an instant the tears were crashing down my face and I could hear them splashing on the pillow, I thought to myself, "I haven't cried like this about diabetes since Arden was diagnosed". When it finally stopped, I had an overwhelming urge to speak outloud the only thought that remained in my head but it felt stupid to say, childish even. I did finally say the words to Kelly even though they felt like a complete waste of breath...

"I don't want her to have this anymore".

Kelly and I spoke about stuff too private for even my transparent blogger heart to share and then I pulled myself back together, snuck into Arden's room and took a look at her CGM - I was strangely refreshed.

This morning while I was making Arden breakfast she started to sing out of the clear blue. I swear to you that I'm not making this up or embelishing in any way.

Arden started to sing 'Lean on Me'...

I'm crying now just thinking about it. I know that we are going to be okay and I wanted to share this with you so that you might consider a good cry next time there's "a load you need to bear that you can't carry".

She sang 'Lean on Me' having no idea of what transpired the evening before. No kidding, huh? Pretty great...

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Sometimes email doesn't cut it

Earlier this week I spoke on the phone with the mother of a child with type I diabetes. The story of how we met is short but it points out just how powerful and rewarding helping another person can be.

Last year I spoke to our Congressperson about Arden's diabetes during a JDRF Promise Meeting which led to a staffer in his office sharing my web address with someone. That person emailed me with a question nearly a year later and we decided to talk over the phone instead of going back and forth vial email.

And I'm very glad that we did!

Had we not spoken, I would have just answered her questions and probably never heard from her again. Instead, we had a meaningful conversation that went far beyond her initial question and it left us both feeling better about a number of issues that can hang over parents like us. 

The details are private but this statement tells the story. She told me that was so happy that she spoke because, "I always thought that I was the only one going through all of this" and that feeling left her with the terrible feeling that she must "be doing everything completely wrong".

I knew exactly how she was feeling because I've felt the same way in the past. I urge anyone that is feeling defeated by the rigors of caring for a child with type I to find someone to talk to who can understand your concerns. You can't imagine how much better you'll feel after you've spoken to someone that has walked a mile in your shoes. 

I was so happy to be able to help another type I parent that the experiance rekindled an idea that I had last year... I hope to have some more news about that very soon.

Please know that the you aren't alone, that it is very likely that the moments that seem like failures are quite common and that I'm always here if you want to reach out.

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Hello fellow Podders!

I just received the email that Insulet sent today and I wanted to take a moment to say hello! If you are visiting the site for the first time... there are a few ways to navigate that I think you'll find helpful.

Consider going back to the beginning and watching how the site evolved from a personal blog about type I to what it has become.

You can also search through the over 400 entries by keyword. For example 'OmniPod', 'DexCom', 'transparency' and much more.

You can begin at the 'Blog' link in the navigation bar or the keyword cloud in the right most column near the bottom
of the page.

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Best,
Scott

Five years with type I.

I sit here with a strong urge to share how I’m feeling. I think that what I’m about to say will be of no surprise to some and very pleasurable to the recently diagnosed.

Today is the fifth anniversary of Arden’s diagnosis. I’m not sad, glad, mad, jealous or thrilled... in fact I have no special feeling associated with the anniversary. What I can impart is this, upon realizing that today felt just like any other day, I experience a wonderful feeling of satisfaction. I think that if I was to give myself a pat on the back today, I’d do it with a sturdy, “well played” and move on - nothing to see here.

This all feels normal now and I think that is the greatest thing that I could say. If at the moment you are overwhelmed, sad, mad, in denial  - know that one day it will all be gone. 

We are diabetes normal and in this house, that’s perfect!