This is water
We had lots planned for the 4th of July 2012, Cole's baseball game was at 10am, Arden didn't want to miss a 1 pm parade that we go to every year in the next state over and we were joining our family for a picnic and swimming at my in laws. Since the parade is about 35 minutes from our house (and in the same town Kelly's parents reside) Kelly and Arden left the baseball field as soon as Cole's game ended (they won) and I stayed behind with Cole so that he could hang out with his team for a while and then get changed before we left for the picnic.
Cole and I arrived at my in laws' home long enough after the parade had ended that everyone was swimming when we arrived. We walked into the house and made our way to the sliding glass door that leads to the pool. I paused for a moment to speak with someone, during our very brief conversation a gust of wind lifted one of the tall tables next to the pool. The gust, which came literally out of the clear blue, filled the orange umbrella of the table closest to where I stood, lifting it off of the ground. Without hesitation the table and it's contents clumsily tumbled into the pool. I was shocked by the site but not overly concerned as I saw that no one was in it's path either on the sidewalk or in the pool as it fell. At first glance this all seemed like no more then an annoying situation that would need to be cleaned up. Watching all of this through the glass door gave me the sensation of watching television with the sound muted. In an instant Kelly came from stage left entering my field of vision in a full sprint, she didn't slow down as she approached the pool and jumped in with an urgency that caused me to think that someone was pushed in by the heavy glass table. I began to move outside to help when Kelly held up her right hand over her head, she was clutching Arden's D-supply bag. The bag that we keep her OmniPod PDM in. My stomach turned. When I approached the scene, Kelly was handing Arden's PDM to my sister in law, followed by her DexCom CGM, Kelly's Backberry from work and her personal iPhone.
I immediately asked Kelly when Arden's last bolus happened and what her BG was at the time. We were managing Arden's BG completely blind now and without the ability to test, bolus, or suspend basal. Our conversation indicated that Arden's BG was in a good place so instead of ripping her from the picnic to make the trip back to our house, I left to bring new supplies to her. An hour and perhaps twenty or so broken traffic laws later I was back. I switched Arden to a new pod that I'd have to link to an old OmniPod PDM (b&w screen), tested and began monitoring her diabetes 'old school' without the assistance of her DexCom CGM. It was back to timers and worrying between insulin and food. Not good but we'll be fine, the reason I tell you this story isn't because of the drama or shocking nature of loosing so much important and expensive equipment. I tell it because of the book that was on my back seat as I made the desperate drive to and from my house.
During the mad dash to retrieve all of our backup supplies I couldn't help but to think about the book on my back seat. I had a copy of David Foster Wallace's 2005 commencement speech with me because I was going to give it as a gift to a recent graduate later in the day. 'This is Water' is a book that I give to every graduate in my life. It's not really a book actually, but the text of the speech in gift book form. I try to reread the text at least once a year because it's message about choosing how to think about reality is so close to how I try to think about my own life. Wallace makes a compelling argument that every situation can be reacted to in the direction of your choosing. He uses the example of a speeding car and asks you to imagine that the driver may be speeding because their child's life is in the balance. He admits that in most cases the offending driver is probably not in a dire situation but then asks, what if "the Hummer that just cut me off is maybe being driven by a father whose little child is hurt or sick...".
As I sped to my house I had two thoughts. One, the idea that Arden's bolus might drag her BG too low while I was gone and two that I was living a part of Wallace's commencement speech and playing both roles. I was the father driving like a nut and I was the man who choose not to judge him...
Watching two thousand dollars worth of electronics being pulled from a pool was nauseating and it was truly going to cause my family a financial hardship but I never thought about the money. I did my best to keep Arden's health and safety as my only thought or concern. As I took the steps necessary to make that happen I found myself doing what Wallace suggests is possible. I looked at the world, at this situation, in the way that let's me be happy. I remained aware "of what is so real and essential, so hidden in plain sight all around us, that we have to keep reminding ourselves over and over: this is water... this is water". I hope that you take the time to find Wallace's words, they are available in book form, online and the audio of his speech is on YouTube, I've included it below.
Diabetes gives us all plenty of opportunities to see the bad in life and in all fairness and devoid of any new age bullshit, a lot of it really does suck. I just hope that you can trust me when I say that you can choose to not think of it that way, it's difficult but really worth the effort. I've witnessed people like myself who from time to time struggle greatly with the difficult moments that diabetes can present. These moments offer us the very real and easy opportunity to not just see the bad but to lay down in it and make ourselves at home. It's easy for me to say that you should resist that urge but because I know from my own life that choosing to be happy is not the simple task that just saying the phrase suggests... Consider checking out 'This is Water', it helped me to find the right path and I hope it helps you as well.
July fourth 2012 started out in fine form and then quickly deteriorated into a day we'd rather forget. I originally thought that this story was going to end with the image of our gadgets in a bag of rice but diabetes had more in store for us then I imagined. Too much for one blog post, so I'm going to have to wait until my next writing to tell the story of July 5th.
part1
part2
Arden's Day Gives: Application for Incorporation
Yesterday was a momentous day around here. Way back on November 3, 2011, I announced my intentions to launch a charity that would strive to lesson the financial burden for young people associated with purchasing insulin pumps and continuous glucose monitors - I called it the 'Untitled Giving Project'. In the days after my announcement I received cash gifts from my readers totaling almost three-thousand dollars, everyone said the same thing when they sent their gift, "use this money and do your best to make this happen".
There was a lot more to do then I could have imagined and I've encountered a speed bump or two along the way but yesterday we submitted the paperwork necessary to be incorporated by the state of New Jersey! I should hear back in a few days and then it'll be time to submit the 501(c)3 paperwork to the federal government. 501(c)3 grants a charitable status, making the charity a non-profit, tax exempt entity.
The timetable is fluid but my goal is to be granted an incorporation certificate by the end of next week, which will allow me to finally stop saying "Untitled Giving Project" and begin using the charity's intended name, Arden's Day Gives.
A lot of behind the scenes stuff will happen in the months between now and when the 501(c)3 is obtained. I'll be building... building a website, an online following and relationships within the community.
I want you all to know that the gifts you made back in November are being treated as if they were my own money. I shook with responsibility when I wrote the first check to cover legal expenses and have been exceedingly careful to only spend exactly what I've had to. I'm happy to tell you that I've only used about a third of the money that you all gave so generously and the balance should be more then enough to establish a web presence, set up the office and get to the good part... collecting donations that will purchase devices for kids in need.
For now if you could show your support by following Arden's Day Gives on twitter that would be a great beginning for this next step. More details will be coming soon and I'd love for you to be able to follow along as we build this idea, born on my diabetes blog, into a force for good. In the coming days and months we'll be making many announcements... I wish I could tell you who "we" are, I'll be able to soon but let me say this for now. The Board of Trustees is comprised of three people, myself, a wonderful pediatrician and a leader in the Pharma industry. Most importantly my lovely wife Kelly who has almost twenty years of Pharma experience will be the Vice President, Treasurer and Secretary. Arden's Day Gives may have initially been my idea but it would exist without all of you and Kelly's tireless efforts.
I'll be introducing everyone very soon, introducing our logo and so much more... I can't wait to tell you all about it! Imagining, launching and hoping for our charity has been one of the true pleasures of my life.
In the beginning the best way to hear all the details will be by following Arden's Day Gives on twitter. Please follow us and tell your D-Tweeps - @ArdensDayGives
https://twitter.com/ardensdaygives
'Arden's Day Gives' received corporation status from New Jersey today! Now it's time to file the 501(c)3 paperwork with the federal government. I'm still amazed to see what good can come from a well supported idea, this is an amazing community of wonderful people! I can't wait to take the next step...
The Untitled Giving Project needs a name
We are on track to file the incorporation paperwork this week for our Untitled Giving Project!
I keep circling back to the name for this charity. I'm 99.9% sure that it should be called 'Arden's Day Gives' but as I find myself committing the name to an application... I get less sure. So I was hoping that I could get some feedback from all of you?
My reasons for the name Arden's Day Gives are as follows:
The phrase 'Arden's Day' has significant penetration with search engines and I think that giving that away and starting new would be a disadvantage.
The name is a simple representation of the charity's goal.
I don't want to pick a super specific name and then one day in the future decide that the charity is capable of doing more, branching out and have the name be restrictive.
I couldn't find a good acronym for "Helping children afford insulin pumps and continuous glucose monitors". Unless you'd like to be a supporter of the H.C.A.I.P&C.G.M? :)
If you like the name 'Arden's Day Gives' please let me know in the comment section but if you have another thought... please don't hold back. I want you all to love your t-shirt ;)
Thank you for your input and continued support!
Best,
Scott
Arden's Day is the Wego Health 2011 Health Activist Award winner!
So excited... I'll post more later when my heart stops beating so fast.
What a wonderful surprise it was to be chosen from among so many deserving and wonderfully written health blogs. A day after learning that I won WEGO Health's 2011 Health Activist Award in the 'Advocating for Another' category, well, I'm still a bit in shock.
WEGO Health houses an amazing collection of communities and blogs about a sweeping range of medical issues. It's members offer advice and support to countless people that need it. If you or someone that you know is living with a medical condition and looking for community, I strongly suggest that you click on this link and see if there is a group tailored to your specific need - I bet that there is.
I want to thank WEGO, the independent judges and the type I diabetes community for embracing what I'm trying to do with this website. It was a genuine honor to be named as the winner in such a broad and powerful community of people. I'm proud of this site and the words that you'll find on it. Moreover, I'm happy beyond words that it helps people. Thank you all very much!
Your opinion is needed: Insulin Pumps and Glucose Monitors
I am in the throws of launching a charitable foundation whose focus will be assisting diabetic children that want but can't afford insulin pumps and continuous glucose monitors.
The necessary paperwork to form the charitable entity is getting very close to being submitted. In the meantime, I am diligently working on ways to make the charity as successful and far reaching as it possibly can be. I will be involved in a number of meetings and presentations over the coming weeks and months and I was hoping that you could help me to better understand how the costs associated with managing diabetes effects your financial life. I am very interested in hearing from the parents of children with type I but if you are an adult with diabetes I am still very interested in your answers - you never what the future will bring.
If you would be kind enough to anonymously answer a few questions, I will be able to use the data you submit as I search for the funding necessary to make this fledgling dream a robust reality. You won't be asked anything that would identify you and none of your personal information is collected by this site.
The answers that you provide will help me to make a better presentation when speaking with potential donors, supporters and sponsors. None of the answers are 'required' by the form and you can skip any you like by choosing "left blank".
Your support is greatly appreciated!
The data collection form is located here. /anonymous
My new book, "Life Is Short, Laundry Is Eternal' is available now - Amazon/Kindle - Barnes&Noble/Nook
My new book, "Life Is Short, Laundry Is Eternal' is available now - Amazon/Kindle - Barnes&Noble/Nook
My new book, "Life Is Short, Laundry Is Eternal' is available now - Amazon/Kindle - Barnes&Noble/Nook