Tuesday, October 30, 2012

T1D Day and The Irony

November 1st will be a day in which every diabetic in the world will be focused on their blood sugars.  2 reasons for such focus:

1. It is the day after Halloween.  Diabetic kids trick-or-treat too!  The urge to eat candy is at it's peak.  Parents will be trying to manage the intake of candy and kids will be trying to sneak as much as possible.  It is a horrible combination that happens at least 2 times a year, Halloween and Easter.

2. November 1st is National T1D day.  How ironic.

November is National Diabetes Month and it starts with November 1st being National T1D Day.  This day was declared to bring awareness to Type 1 diabetes.  A day in which we (JDRF and parents) can raise awareness to this disease that causes so much trouble on days like Halloween.

So what can you do?  I simply ask that you share a story with someone about a loved one who lives with T1D.  That alone will help raise awareness.  If you don't know anyone with T1D, then share our story, we don't mind.

Awareness is something that I never considered to be a part of being involved with JDRF.  At the time of our initial involvement, i figured that the staff at JDRF took care of all of the PR involved with JDRF and never really considered it to be part of our fundraising efforts.  As a JDRF staff, I now can see how much we rely on everyone to help raise awareness.  The more people that talk about T1D, the more educated the community becomes which then leads to more participation.

I ask that you all take a few minutes of your day on Thursday to think about those that live with T1D.  Think about the damage control that those diabetics are doing after a night of splurging on candy.  Think about the newly diagnosed, those living with diabetes, those losing their battles with diabetes and those that have lost their battles.  Let everyone know that it's time to end this disease for good.

Sunday, October 28, 2012

She Still Doesn't Quite Understand

This past Saturday evening, Eastern Iowa JDRF hosted the 10th Annual Promise Gala.  An evening packed with silent auction items, live auction items, a dinner, dancing and 500 guests that support our organization.  This is the 3rd year that I have attended this event, but the first year that I have actually "worked" the event as a staff member.  The Gala surpassed our projected expectations and was a very inspirational and successful evening.  With all of the success and the "high" from the event, I find myself thinking about something else on this Sunday evening.

As much as we all wished it would, the Promise Gala doesn't just happen.  It takes 364 days of planning and 1 day of execution.  Our Gala committee and staff work on planning and preparing for this event beyond anyones' imagination.  Without their hard work and dedication...this event doesn't happen.  With that being said, "Gala Week" (as we call it in the office) is pretty much a week in which your personal life takes a back seat and Gala becomes priority.  Being involved with the Gala, this is understood and not questioned by anyone because we all have the same purpose in mind....funding a cure for T1D.

Thursday night before the Gala, I found myself in the hallway with my co-workers, preparing bidding cards, programs and so on.  Before we knew it, the clock said 7pm and I had to make a quick run to Taco Bell to get food for our staff so we could have a very short dinner break.  At 8:30pm, we all hit a wall and decided that 12 hours on this day was enough.  Exhausted mentally and not so much physically, we knew that we needed to pace ourselves for what still was ahead of us.  I arrived home and my kids were in bed.

Friday was another long day.  We, with the help of many volunteers, moved all of the auction items, props and other needed things to the Marriott Hotel.  Once there, it was time to start setting up and getting things in place.  Dinner with my co-workers once again and getting home in time to see my kids off to bed.  I was fortunate on Friday night to have a 20 minute conversation with my wife; the first time I had talked to her in 2 days.

Saturday morning had me up at 6am and headed to the hotel to set up for the evening event.  I had to miss Dylanne's soccer game even though the other team failed to show up.  I didn't watch the Iowa football game with my wife, which is something we always do and I didn't have the weekend to play around with Micheala.  I didn't see my kids on Saturday.

I wouldn't change a single thing mentioned above.  I made a promise to Micheala.

I knew what I was getting into when I spoke those words ("I will do everything I can until the day that I die to help you become undiabetic") to Micheala in July 2010.  I knew that when I accepted the position at Eastern Iowa JDRF that the position would include some weekends and some extended days; the staff was very clear about that from day 1.  I knew that starting this crusade back in 2010 that it would require an amazing woman, such as my wife, to be flexible with her wants and needs so that I could work towards making the future of our daughter a little brighter.  She does this on a day-to-day basis and is very humble about her very busy schedule.  What I didn't prepare for or do, was communicate with my daughters about "What dad is doing and where he is at?"

Once again, a simple question from Micheala made me aware of this void.  Micheala asked me tonight if I had any meetings next week.  I told her that I did not and asked her why she was asking me about my meetings.  She told me that she just thinks that I should be home by supper time.  I initially just laughed it off, but then decided to ask her if she understood why I was gone so much last week.  As I expected, she knew what I was doing.  So I asked her if she knew why I was doing those things and she quickly responded by saying so I could help cure diabetes.  It was the end of that conversation, but was invitational to a conversation that will need to be had in the future.  I just have to figure out how to have this conversation with her without crying like a baby.

I know what your thinking..She gets it.  She knows why you were gone and what you were doing.  She even has a concept of why you are doing what you were doing.  I guess that my expectations for what a 7 year old can comprehend is just a bit too high or I haven't done a good enough job of communicating my purpose to her.

At the end of the day, whether they be short days or long days, this is about her and her future.  This is about eliminating the unpredictable days that she has with her diabetes so that she can extend more focus on achieving her goals and dreams.  This is about finding relief for my wife; who spends a majority of her day doing blood sugar damage control.  This is about allowing her sister to not worry about Micheala when she has to be admitted into the hospital or even gets the flu.  It's personal...very personal.

Passion and disgust is what fuels those that are fighting for a cure for T1D.  We have a personal purpose for what we do and that takes center stage as we charge on in this fight.  The understanding is that even though our involvement is personal, our victories for our loved ones means victories for those that share this disease.

Although she wanted me at home this past week, I hope that she will someday understand that I was away doing things that will make her future better.  I hope she can someday understand that the sacrifices that were made last week will offer much greater rewards for the future.  I hope she realizes that her dad was absent because he loves her too much to watch her hurt everyday.

Right now, the $900,000 that the Eastern Iowa walk program earns or even the $300,000+ that was raised Saturday night doesn't calculate in her mind but I have faith that someday it will.  It's hard for me to listen to her question my whereabouts and frustrating to know that she still doesn't quite understand.  She's 7 years old and knows just about every word to every song that comes on the radio but can't quite put together the significance of my efforts today and her future.  I guess I prefer it that way and will have to be patient and prepared for that day when she does finally put it all together.  Until that day, I need to remember and have faith that I am doing what I am suppose to be doing.

Victory does not come without making sacrifices along the way.

Monday, October 15, 2012

Keeping The Dreams Alive

Today...I count my blessings for the opportunity that I have to be part of history.

3 years ago, when we decided to get involved with JDRF, I had no idea what we (our family) were getting involved in.  We honestly got involved with JDRF to give Micheala the opportunity to be around other children with T1D.  We were no strangers to diabetes, as I had lived with it for 17 years at that point, and we somewhat went into Micheala's T1D with knowledge of how to "manage" the disease.  Our involvement started simply for the social side of what was offered by JDRF.  My oh my, what 3 years, a full heart and an open mind can do for one's perspective.

It's no secret that we are JDRF!  I know that others may get tired of my constant mention of JDRF and what our family is doing to try and create T1D free futures for those with this disease.  I have learned to shut those people out as my daughter's future and the future of those friends that I have made through JDRF are far too important to me to care about what others may say behind my back.  I have been told, through the grapevine, that my efforts are pointless as there will never be a cure.  I ask those people to look at the same little girl that I do every night and tell that to her.  It's no secret that people have gotten tired of watching us succeed in our fundraising efforts.  I don't blame that on people being cold hearted about raising money for the cure, I believe that they just don't like to see others succeed.  i am fine with that as well.  Being humble is something that I struggle with because I am proud of what my family and dedicated committee of Pump Princess team members achieve.  I celebrate because I need to celebrate.  There is a lot of hard work that goes in to what we do, anyone associated with Team Pump Princess knows this....it doesn't come without stress, elbow grease and time commitment.  I need to stop...I am not here tonight to talk about the negative or defend what we do and how we do it.

After 3 years, we have embraced the opportunity that JDRF has offered us.  The opportunity to be part of history.

There is going to be a cure for T1D.  It is just a matter of time.  Being part of the staff at JDRF and having access to all of the research updates, i get excited because I am reading about all of the advancements made in research to cure, prevent and treat T1D.  I believe that when my girls decided to start their own families that diabetes will not be a concern.  I am excited to think about the possibility of someday wearing an artificial pancreas as the technology of making this a reality is advancing everyday.

We are going to be in the history books.  Everyone who makes the commitment to donate, volunteer or assist JDRF in anyway is going to be remembered as being part of the cure.  I am not sure about all of you, but an opportunity to be part of something so special is a unique lifetime opportunity....so why not embrace it?

The issue with T1D is that we appear to be healthy to the naked eye.  That is not a bad thing, but it does make it more difficult for the outsider to understand or embrace the disease.  I could put a diabetic in a classroom full of kids their age and it would be difficult to pick the diabetic out (unless their pump was visible).  It's not just kids that deal with T1D.  These kids eventually grow up and become adults with T1D.  in a conversation the other night I was having with a parent of a T1D, the parent mention to me that her daughter is "graduating from JDRF" because she was turning 15 and getting too old for JDRF.  My challenge as a staff member is to keep this young girl's involvement with JDRF because T1D doesn't go away at a certain age.  She has come so far and done so much through JDRF, I would hate for her to feel or even think that she has reached an age in which JDRF can no longer assist her.

It's not easy to ask someone to donate to a cause that is working to cure a disease that they cannot see.  We, the T1D community, all have our stories that we tell about the day-to-day struggles that we have with T1D and that helps, but I really dream of people embracing the opportunity to be part of history.  Be part of something that we will only read about in the history books.  I believe this..I have no reason not too.

It's easy to turn and look the other way.  Not everyone feels called upon to dedicate their lives to a mission to cure T1D, I understand that.  But...

What if ten minutes of your life could result in an action that would be remembered for a lifetime and beyond?  What if?

What if $10 of your annual earnings was the $10 that assisted in funding a cure for T1D?  What if?

I ask these questions because it only takes 10 minutes to donate $10.  Not that $10 has to be your maximum donation, I just use that amount to prove that every dollar counts.  It really does.

When I was growing up I wanted to be a professional baseball player.  I let a disease called T1D give me an excuse to not work hard and pursue my dreams.  Allowing myself to fall victim to this disease allowed me to live my life with mediocre expectations and a sense of "I will never accomplish anything worth while because diabetes will always stop me".  I spent my childhood playing baseball (which I love and still do), played in high school and a couple years at a division 3 college until I finally gave up.  The point is not being a professional baseball player because the odds of making it to the MLB is difficult even for those that work hard at making it.  The point is that I gave up on that dream because of a disease that I got, (didn't ask for or cause).  How many other T1Ds are there out there that feel the same way?  (My dreams will not come true because I have diabetes).

We are in the process of making history and changing history.  No more giving up on those things we dream about as kids.  No more feeling defeated before we have even stepped foot into the ring.  Help us keep the dreams alive...help us change history.

Tuesday, October 9, 2012

6 for 6...Time To Swat The Fly

This month......we are 6 for 6.  The month being October.  The "we" being Eastern Iowa JDRF.  The first 6 is the number of days our office has been open this month.  The other 6 is the number of new type 1 diabetes diagnosis that have reached my desk.  That's right, one new diagnosis for every day that our office has been open this month.

In most cases, 6 for 6 is a good thing.  It means your operating at 100%, but in this case it is just a sad statistic in the rapidly rising number of T1D cases in the Eastern Iowa area.  It is out of control and there is nothing that we can do to stop it.  Or is there?

JDRF is asking the question, "Who is your reason to walk?"  A few years ago, you may not have been able to answer this question.  Today, with the rising number of new diagnosis, it is almost impossible to find someone without a direct connection to T1D.  So who is your reason to walk?

Followers of this blog know our reason to walk.  She is a cute little girl that smiles at you and makes it impossible to tell her "No".  It is an innocent little girl that had her life altered at the precious age of 4.  It is a little girl who learned about carbs and insulin before she learned to do simple addition and subtraction.  It is a little girl who cries when we tell her that she can't have the same treats as her friends and is disappointed when she has to stop playing because her blood sugar is too low.  This little girl is our Pump Princess....also know as Micheala.

I like to think of T1D as that annoying house fly in your house.  It just hangs around, buzzing by your face and eventually landing on your cheek.  You swat at the fly to get rid of it, but it never seems as if you are quick enough to swat it away for good.  It flies away for a moment, only to land on your face again.  Once again you swat, but can only claim victory for a moment.  The process repeats.  You look for other means to get rid of the fly.  A fly swatter perhaps, but there is not one within your reach.  So there you sit, feeling defeated, as this fly continues pester and interfere with what you are trying to do.  A little fly that is capable of altering your mood and interfering with your life.

A crazy metaphor...I know, but think about it.  T1D doesn't go away and it bothers the hell out of you.  So what is the solution?  How do we eliminate the fly? 

All problems have a solution and with every solution, there is a call for action.  JDRF is funding some of the top researchers in the world to work on three key areas in T1D (cure, treat and prevent).  As we all know, money doesn't grow on trees, but it does fuel the existence of our research.  As a community with neighbors, children and loved one's living with T1D, it is our call to action to make sure that the current research efforts are funded so that they may continue.

JDRF's Walk to Cure diabetes is the most popular of the JDRF events nationwide.  Annually, the Walk to Cure events draw thousand upon thousands of people and raises millions upon millions of dollars for research.  Do you know that nationally, 82.5% of all funds raised for and by JDRF goes directly towards research?  That is just a testament to how dedicated JDRF is to finding a cure for T1D.

As a JDRF staff member, a T1D and most importantly a parent of a T1D, I ask that you please join forces with your local JDRF chapter and support the efforts in funding a cure for T1D.  If you don't have a walk team, I ask that you join one or develop your own walk team.  If you have a walk team, I challenge you to set your goal higher this year.  If you are a local business owner, I ask that you consider sponsoring the walk.  The point being is that everyone has the ability to get involved in some way, shape or form.  It's just a question of whether or not you are willing.

As much as I hate to play "what if", I have allow you the opportunity to think, "What if this happen to my loved one?"  Nobody wants to think of their loved one being diagnosed with a chronic illness, but wouldn't be comforting to know that during your time of stress that you had a local JDRF chapter there to support you every step of the way?

While the mission is clear at JDRF, the support offered by the local JDRF chapters is often overlooked.  In our office, T1D is very personal.  We have 3 of us that are T1D's ourselves and 2 of us that are parents of T1D's.  I must add that we have 5 people that work for Eastern Iowa JDRF.  We know what families are going through and can relate with the stress, anxiety and uncertainty that comes with a new diagnosis.  We have all experienced the ups and downs of diabetes and have all reached that peak point of frustration.  We have all asked the same questions that you want to ask, especially the "why me" or "why my little child".  We've all been angry and we've all cried, but we have all pushed through.  We are all now embracing the opportunity to make a difference in our own lives or the lives of our loved ones.  We are on a mission because most of us had made PROMISES that we don't intend on breaking.

We are recruiting.  Recruiting people to lock arms with the JDRF community and start making a difference.  We are looking for people who have that loved one living with diabetes and just are not alright with them spending the rest of their life that way.  Please join our team.  Statistically, there are new diagnosis happening across the United States right now.  When is this going to end?  Will you help us find that answer?