Nora's Post #2: What a Cure Would Mean to Me:

Here is part 2 of Nora's application to JDRF's Children's Congress. If you've missed any you can find the original post HERE and  read her post #1.

When I read her the question she had to answer she immediately said she didn't want a cure. Well...that won't work for Children's Congress! I mean, after all, it's about getting the Special Diabetes Fund renewed...which funds research, cure, preventing and improving the lives of T1D. So, I started talking to her about the complications that can come with having T1D. Kidney, liver, eye, feet problems, etc. She thinks about it and says, "but, Mom, I wouldn't be me without my diabetes!" And then I talked to her about when she gets her cure, she could go around talking about how life was with diabetes. How hard it was to take care of herself. That diabetes has made her strong and independent. So with my words of wisdom off she went to write her response.

And here it is:

Why a cure is important to me:

A cure is important to me because I wouldn’t have to worry about dying. I wouldn’t have to worry 

that much about my organs and body.  I would feel “normal”. A cure would be great! I could eat non 

stop without bolusing for my food. I would feel free and I could do more stuff with a cure. I wouldn’t 

be asked so many questions a day. I would love a cure BUT I wouldn’t be me. I wouldn’t be as strong 

or independent as I am now!  

Nora's Post #1: My Life

I wrote about Nora applying for JDRF's Children's Congress and some of the questions she has to answer you can read about it HERE. With her busy school/sport schedule we decided to break the questions down one at a time and then compile her answers into one long essay. However, that means multiple posts for you to view. With her permission here is HER answer to "Tell us your personal story living with T1D":

My Life

            It all started June 13, 2005. Why am I in a hospital? What is diabetes? Why are the doctors and nurses poking me with a needle? Why are people giving me all this attention? I didn’t get it. At four-years-old I had a LOTof questions and even some of the questions haven’t even been answered. I didn’t really know that there weren’t many four year olds without diabetes. I thought that everyone went through what I was going through like taking shots every time you eat and every time you blood sugar is high or drinking an apple juice when you blood sugar is low. I wish I still had the confidence I had when I was little. When I was seven I got the Medtronic Mini Med pump. I was so happy that I didn’t have to take shots anymore but to be honest, I had no clue what a pump was. Why was this purple thing attached to my stomach? This is when I started to feel “different”. Now at the age of almost twelve I know there are a ton of people my age that judge others. They shouldn’t, they shouldn’t at all. It’s just another way of pointing out the obvious that you wish you could change. I have to wake up in the morning check my blood glucose, eat breakfast, and plug my carbohydrates into my insulin pump (I have to do this every time I eat). At nine-o-clock I have to take my blood glucose and treat for it if it’s high or low. I have to check it AGAIN before lunch but I don’t treat for my blood sugar. Than after I eat lunch I correct for my food. At three-o-clock I have to test my blood glucose and treat for it and I do the same EVERY three hours. I also test when I don’t feel good which is plenty times a day. Did I tell you that during all this I am either in school or playing sports? Well it’s true. I am very active; I play basketball, softball, volleyball, and track. It’s so hard for me to stop playing whatever sport I’m doing at the time and test my blood glucose if I don’t feel very good. The number one question or being told from the referees or umpires is “What’s that thing around your waist” or “What is that,” pointing to my emergency alert bracelet or “You have to take that off” pointing to my pump or bracelet. It gets annoying, really annoying actually but, does that stop me from playing sports, NO! Now believe it or not I’m not the only person in my family that has T1D! My eighteen-year-old sister just got diagnosed this last summer. I busted out into tears once my dad told me. It was kind of weird because I got a flash back to when I was in the hospital. I felt like my life was just going to come to an end. I’m just happy it didn’t! So now my sister and I have diabetes and my little four-year-old brother has a bleeding disorder called hemophilia. Hemophilia is a disease in which if you start to bleed or get a bruise you cannot stop bleeding until you get a special type of medicine. I just pray and pray over and over again that he doesn’t get a bleed. I wish both diseases didn’t exist! I may be different but I can do everything you can do.

Blue Heel Society "Fan Of The Week' is Trish Prather

Thanks to the generosity of the Developers of our BHS Fan Of The Week (FOTW) Application, we have a full working version of their Top Fan Application that allows us to showcase our Bluetiful peeps, based on computer magic (Randomness) & multiple interaction factors on our Facebook Page.

This weeks Fan of the Week (FOTW) is Trish Prather, and we asked Ms. Prather to answer a few questions as to learn a little more about her.

BHS: Connection w/ diabetes?
TP: My son was diagnosed with type 1 diabetes when he was 12 months old, exactly 2 weeks after his birthday.

BHS: General geographic location?
TP: We are from the Atlanta, GA area but we live in Central FL since diagnosis in 2007

BHS: What blue shoe (Heel, sneaker, riding shoe, etc.) suits you & Why?
TP: Honestly, I'm a flip-flops girl all the way.

BHS: What does advocacy mean to you?
TP: The lack of advocacy and awareness almost cost me my son's life. I was so ignorant to the disease that I wasn't even sure how many types there are and had never heard of a child with it. My son was in severe DKA by the time I realized it wasn't "just a stomach virus", because I never knew all the symptoms that I noticed actually meant something like diabetes.

BHS: Blog/site/twitter/organization
TP: I shamefully haven't blogged in about a year. My Facebook DOC family is what keeps me sane. Without them I would be alone in this D battle.

BHS: Words of wisdom/encouraging statement/general statement about diabetes?
TP: I do not have a diabetic child, I have a child with diabetes. I treat the child first, the diabetes second.

Congrats again to Ms. Prather, and the BHS Team thanks each & every one of YOU for being a part of our Family.

Winning the Lottery?

After talking with Nora, we have decided to apply for JDRF's Children's Congress 2013. It is held every other year and gives 100 T1D's, aged 4-17, the opportunity to have Congress put a face to T1D. You can read more about it here. There is a very lengthy application process that once you sit down to fill it out on line there is no saving it or coming back later to finish it up. You sit down and fill it out now. So I took a look at the application and wrote down the things that would take us the longest to answer. Namely, the essay that Nora will need to write!! Not to exceed three typed pages or 1,200 words. I'm a little hesitant about this. What will she say? Will she say it eloquently? Will she get her point across? Will her words get her accepted into Children's Congress?? I promise that I will sit back and let her write her essay...as much as I will want to write it for her...I'm NOT going to do it. There...I said it out loud, y'all are my witness! Her essay needs to answer the following questions.

1. Your personal story living with T1D.

2. Why a cure is important to you?

3. What does the Special Diabetes Act mean to you?

4. Why the US Congress should support diabetes research to help find a cure for T1D?

5. What have you done to promote awareness of T1D in your community?

Quite frankly, I know the answers. Or at least I think I do. However, she may surprise me. And I'm looking forward to hearing her answers. We are so busy dealing with the day to day that I want to hear HER take on it. I know mine. All of you, know mine. She's almost 12, she's been living with it for 7 years. It's time to hear her story. And as soon as she writes it and we send it off I'll blog it here.

I printed off the Special Diabetes Act so that she could read about it and write about it. I also printed off some facts for her to use. I've read how much diabetes costs the US economy annually, how many American's have diabetes, the estimated growth of new diagnosis, you have read them too. But there is one statistic that stopped me dead in my tracks.

1 in 3: the number of American children born in 2000 that are likely to develop diabetes during their lifetime. (source http://advocacy.jdrf.org)

My Nora was born in 2000.

She is the 1 in 3.

That. Is. Sobering.

I guess knowing it and seeing it are different. When you hear it, it goes in one ear and out the other. You hear it but maybe don't process it like you should. Then you see it. Black and white. Right there just STARING at you. The year your baby was born and she IS the statistic. SUCKS.

In my odd way of thinking, she's always been "lucky". At the church festivals with the peel off Bingo tabs, she wins. Nothing big maybe $25 max. But she wins. Then there are those door prizes at events. She wins. Without a doubt. She wins. Wait till she's legal to gamble...I'm taking that girl to Vegas, baby!!

Anyway...if your reading this, chances are you also know a "lucky" 1 in 3. As I'm sitting here, I'm wondering what the odds are that you have more than the 1 in 3, (since I have 2 now). Then I'm thinking all three of my kids have chronic illnesses so that should count for something, right? A lottery win would be nice. Too bad we don't play. Damn.

Maybe my "lucky" 1 in 3 will be selected to go to Children's Congress. Who knows. But I will count myself as lucky to know all of you and that we are in this together.

Now, to go buy me a lottery ticket!

A Non D Day Post!

photo copied from Ninjabetic. check them out  here.

The title says it all...yep, No D Day. So...I'll share a story with you instead...that is appropriate for the Halloween season...

As I mentioned last week in a blog post, we live in a home that's 130 years old. And with that, weird things have been known to happen. We've heard some normal noises...ya know, unexplained men's footsteps walking in the upstairs bedroom. Lights have turned on that were left off. Just normal things...right?!?! Well, it's been kinda quite here. Although, with our crazy life and all the noise around here with two dogs and three kids I wouldn't necessarily hear anything or notice anything unless it was blatant.

And this time it was.

Nora only has about 4 more baby teeth that have to come out. She has been directed by her dentist to wiggle and move those suckers or they will be pulled. The other night she eats a Sugar Daddy. And with that gooey caramel out comes her tooth!! Yay!! She's excited! Not so much for the money...it's just one less she has to worry about getting pulled. She decides that she needs to pretty her lost tooth up...(I have no idea why! Insert eye roll here and a "you better hurry up and get it done because it is time for bed"!) And she decides it needs to be brushed. I gave her a warning that she may drop it down the sink but to no avail. She was set on doing it and she did withOUT losing her tooth! But then she has to go one step further. She needs to pick all the dried blood out of it. (Eww....shaking my head!!) She goes into the kitchen to get a toothpick. We have about a 1/2 inch gap between our counter and the stove. And yes, you know where I'm headed with this, right?!

It falls in the crack.

Well now we can't find a flashlight to save our lives as my son, Jackson, likes to hide them and leave the light on so not only do our batteries die the actual light bulb dies too. I told Nora that now it's lost as I am not fishing under the stove to find her tooth or any other hairy, creepy, yucky stuff that I am positive is under my stove. She goes on to bed.

Let me just state, for the record, that the ONLY people who knew of this tooth dropping were Nora, myself and Evy. Jackson and Joe had already gone to bed. Knowing this makes the next part of the story that much weirder!

The next day after everyone had left for school or work I cleaned up the kitchen. Putting the dried dishes away in the cabinets, etc. I had a paper towel on top of the counter, from the night before, but what was placed ever so nicely on that paper towel but Nora's tooth!! How in the world did it make it on top of the opposing counter???

Not sure.

Girls come home from school and I ask them about the tooth. They are freaking out. I'm dumbfounded. Can't explain it at all! Evy was thinking that this tooth must be pretty special if it was lost and then found. So she wrote the powers that be a little note.

Thank goodness the note was never answered! That would've been too crazy!

Fast forward to a few days after the initial incident and Nora finds a flashlight. She can't believe that was her tooth on the counter and wants to just make sure her tooth under the oven is really gone. But...it's NOT!! It's still under the oven!! So, who the He#@'s tooth is on my counter?!?!

It's a mystery that will probably never be solved.

And as a side note...this No D Day is really not a challenge for me as my family has enough weirdness to blog about as much as I blog about D!! That is really either very exciting or very sad!! No "normalcy" here!! Hope you enjoyed!! :)