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Action Required

Opportunity to Vote For a Special
“Members Project” 
on an American Express Website...

The American Express Members Project winners will share $2.5 Million in funding. 

By going to this direct link:

http://www.membersproject.com/project/view/OGEULA

you will be guided to nominate this project for funding. It was submitted by a mom from Georgia whose son was diagnosed on Mother’s Day 2007. This is her project description:

Fund continuing research for an artificial pancreas and eventually a cure for Type 1 Diabetes. Organizations like JDRF and NIHH are working to make this dream a reality.

Let’s support her efforts and potentially support JDRF. The project closes on September 1st. It takes less than a couple of minutes to nominate this project. This is an opportunity for viral marketing. Pass this message on to at least 5 members of your family and friends. Let’s see if we can make an impact!!!!

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Two Year Anniversary

Two years ago Arden was diagnosed with type I diabetes while we were on a family vacation in Virginia Beach, VA.  Approximately ten thousand shots ago our lives were changed in a way that I still haven’t found the words to properly convey.  

Through happenstance our family invited us to another Virginia Beach vacation this year.  So I am writing to you tonight from there.  When we drove into town today I got filled up and had to stop myself from reliving those moments from 2006 that now define our lives.  As we drove down the same street that I raced down franticly searching for a twenty-four hour pharmacy that night, I was overwhelmed by how far we’ve come, how far we still have to go but mostly by how sad I still am that Arden has this disease.  I guess that is never going to go away. 

A few hours ago, just as we did the last time we were here, we went food shopping to supply the house.  I remembered going into that store two years ago so excited about the week to come.  Today I had to fight off a piercing feeling of dread and impending doom.  I couldn’t help feeling like something horrible was going to happen tomorrow.  I don’t think that it’s a very good idea to be here today.

Tomorrow I think I’ll go with Arden to the last place in the world that I remember her not being diabetic.  Kelly and I took her for a walk at a nature reserve a few hours before we figured out that she was sick.  We watched the sun set together...  It’s the image I picture in my head every time I say, “Arden’s Day”.

 

Tomorrow I’ll take her back and take a new photo of her to replace the one in my mind.  She was so sick that day, so skinny and lifeless.  Wearing a little green knit sweater that I’ve never been able to bring myself to put back on her.  I think it’s time to replace that memory with a new one.  I’ll post those new pictures as soon as I can.  

Thank you to all of you that read this, you’ve made the last two years a bit easier. 

**

The following are archived comments from this post. You can post new comments below.

Anonymous
You bring tears to my eyes when I read your entries.  Keep on fighting!!!
Saturday, August 23, 2008 - 11:40 PM
Elissa Harris
You are a true inspiration to me. Keep on going!  You have supporters behind you.
Saturday, August 23, 2008 - 11:42 PM
adam
That is one of the mot touching things I've ever read.  You are amazing.
Sunday, August 24, 2008 - 08:31 AM
I can't read your entries without crying.  Keep going strong.  You may not realize it, but you give me strength to fight this disease with half a smile on my face.
Monday, August 25, 2008 - 11:49 AM
Scott
follow up... I was never able to bring myself to go back to the place where this picture was taken.  I'm leaving that place just as it is in my memory, I don't want to ever go there again.
Friday, March 26, 2010 - 11:15 AM

 

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From Kathleen

I asked Kathleen if she would be kind enough to pen a blog post for the site.  Below she describes how she found us and what she learned.  Please welcome Kathleen, our first ever guest writer...

In case you missed Kathleen’s story... here it is.  If you already are acquainted with her story read on...

Hello Arden’s Day Readers,

 

I am currently a graduate student in clinical psychology and am working on my doctoral dissertation. My interests lie in the field of pediatric psychology, which means that I am interested in working with children who have physical illnesses. Psychologists can be very helpful to those in medical situations whether it be through helping them cope, helping them adjust to a new life, working on medication adherence, and serving as liaison between the family and the doctors. Despite the services that psychology could be offering to the medical field, many medical professionals do not choose to include psychologists in their treatment teams. This is due to a variety of reasons but the reason that I am focusing on is that physicians simply do not understand what psychologists could do to assist them. This is a problem that could be remedied during medical school and I have begun working on a project to see if giving a presentation on psychology to medical students could change their attitudes and intent to work with psychologists in their practices. 

 

My presentation presents several different pediatric illnesses and describes basic psychological services that could be helpful with that disorder. I wanted to put a human face to the disorders that I was talking about so I began an internet search for videos showing the psychological and social impact that having chronic illness has on children and families. This is when I stumbled across Arden's website and her videos. They were exactly what I was looking for as they show how much work goes into caring for a child with diabetes, how scary it can be for parents, siblings and the child, the trauma that it can cause to children who may not fully understand what is going on, and the unfairness of such a young child and her parents dealing daily with needles and "carb counting." Medical professionals often are so focused on the biological aspects of disorders that they forget that the disorders have effects that are more far reaching than just a physical problem. 

 

I want to support what Scott has said about the butterfly effect and the importance of speaking out. I am hoping that my presentation will at least get medical students to pay attention to all sides of having a disorder, and the presentation may also inspire a student to work further on one of the disorders. I myself did not completely understand the rigor of having a child with diabetes but Arden's videos have stuck with me ever since I have seen them and that is what leads to change. You never know who you will reach with your efforts!

 

I want to thank Scott and Arden for allowing me to share her videos in my presentation. I feel that these videos are by far the most effective part of my presentation and I hope other people will begin sharing their experiences as well.

 

Kathleen

I am very gratified by what Kathleen has done and encourage all of you to follow her lead and be an advocate for Arden.  You can start today by joining Arden’s 2008 team to find a cure or making a donation to her walk.

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Along came Paul

Arden has a ballet class on Friday afternoons that she loves.  Before an activity like this I plan Arden’s fast acting insulin so that it peaks and is gone from her system prior to the start of the class.  Today was no exception...

When the class started Arden’s BG was 189 and it had been four hours since I injected her Novolog (1 hour longer then it normally lasts).  So she was at 189 with no fast-acting insulin in her system... Golden!

Arden painted a paper butterfly during the craft portion of the class but when it came time to dance she didn’t want to join in.  She sat on my lap, then on the floor in front of me and told me that she didn’t like dance anymore and never wanted to come back.  So given that her BG test was 189 just twenty minutes prior I didn’t test her based on her mood change, I did what most of you would have done, I started to parent her.  I explained that we signed up and the she was going to finish the class, that it was okay if she didn’t want to dance anymore but that we were going to finish out our commitment.  You know some good parenting...  

Until she said, “Daddy I feel weird”.  So I tested her even though I was 2000% sure that she was just tired or in a bad mood.  I took out the lancets, the test strips and the meter and proceeded to jab a hole into her forefinger while she cried and begged me not to.... a moment later the meter beeped and her BG was 61.  I rushed out to the car and began feeding her icing and juice.  At one point while she was trying to eat, her hair got caught in her mouth, she grabbed at it and said, “I hate my hair, I’m going to pull it off” (low blood glucose make people very agitated and difficult to reason with).  Ten minutes later I tested her again, and she was 51.  She consumed more food and juice. Soon 30 minutes had passed and her BG was going up, we missed the class so I strapped Arden and her brother Cole into the car.  Then I walked behind the truck, sat on the bumper and cried like a baby in the parking lot of the YMCA.  I cried because we narrowly averted a seizure, because dance day was ruined and because it was so sad to see Arden get so angry about her hair.  Mostly I cried because I can’t stop this from happening, because I feel helpless, because I am.

Arden waits all week to go to that class. She asks me everyday if today is dance day and when dance day finally arrived it was ruined by juvenile diabetes.  What happened today was completely unavoidable and stunningly unpredictable.  I did everything correct, everything the way I always do it but some days everything isn’t quite enough. 

By now you must be ready for that happy ending, right?  Good thing you kept reading as this story has a bona fide movie ending thanks to our friend Paul.  Paul, without knowing helped me today.  He helped me pull myself together and to re-focus on the hope that today won’t always be a typical day for Arden.  You see, while I was feeding Arden in the backseat of my car I felt my phone vibrate as it received an email.  Later when I remembered the email I checked it and do you know what I saw?  Paul had signed up to walk for Arden in the JDRF’s Walk to Cure Diabetes at the exact same time that Arden was heading for a seizure.  Happenstance for sure but there is no more genuine example of The Butterfly Effect then Paul’s email coming when it did.

Paul, you saved me today.  Thank you!

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Kathleen

Six Degrees of Kevin Bacon is based on the concept of the small world phenomenon and rests on the assumption that any actor can be linked through his or her film roles to actor Kevin Bacon.  Like so...

1. Bela Lugosi was in Abbott and Costello Meet Frankenstein (1948) with Vincent Price

2. Vincent Price was in The Raven (1963) with Jack Nicholson

3. Jack Nicholson was in A Few Good Men (1992) with Kevin Bacon

I frequently refer to the Butterfly Effect when I talk about the best way to find a cure for Arden.  Just last week I received proof that my assertion regarding transparency and how it will lead to a cure was justified when a stranger sent me this note.

Hello-

My name is Kathleen and I am a clinical psychology graduate student. I am going to be giving a presentation to medical students regarding how psychologists can be helpful to them in the medical field. I am covering a variety of topics and am trying to find some videos to show. One of the topics is diabetes and I was so taken by your video of Arden that I was hoping you would send me the file of the video so I can incorporate it into my powerpoint presentation.

Thank you very much for your time!

Kathleen

So just like good ole’ Kevin Bacon...

1. Arden was diagnosed with type I diabetes.

2. I tried to find a way to help locate a cure.

3. Kathleen saw Arden on YouTube and used her video in a presentation to medical school students.

4. One of those students goes on to...  who knows.

Now I’ve said said this next part before but it bears repeating.  This is all happening because of you.  When you tell someone about the site, it grows.  When you donate to Arden’s walk you give me strength to continue telling Arden’s story.  When you care you give Arden hope.  When all of these things happen together, I met Kathleen. 

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