JDRF Meeting Request has been made...

A dropped off the petition and a written request for a meeting at the Congressman's Hamilton, NJ office today.  I spoke with a lovely woman named Mrs. Carol (I hope I’m spelling her named correctly) who told me that she would forward my request to their Washington office.

Please continue to sign the petition and forward it to your friends.  http://www.petitiononline.com/4Arden/petition.html

UPDATE: The Congressman’s D.C. office called me Friday and said that a date for the meeting may be set as early as this week.  More info as I have it...

Here is the letter that I included with the signatures.

NEED LETTER

I also included this photo of Arden.

JDRF Promise to Remember Me: UPDATE

After speaking with a number of people I’ve come to the conclusion that it may take more then just a cordial phone call to get my Promise meeting book with Congressman Smith’s office.

I’ve started an online petition to respectfully urge Rep. Smith to meet us.  Please take a moment to sign it today.

http://www.petitiononline.com/4Arden/petition.html

UPDATED: April 24 - The lines of communication between the JDRF and Congressman Smith’s staff have reopened today!  This is very positive news, more info when I have it.

JDRF Promise to Remember Me

Today I received a phone call from the JDRF’s “Promise to Remember Me” campaign.  I recently responded to an email that was seeking a volunteer to coordinate and take the lead in one of their meetings.   

Their program helps people effected by Type I Diabetes meet with their representatives in government.  It affords then the opportunity to thank their representatives for their support, explain how Type I effects us and to encourage their continued support of children's healthcare legislation.

I’ll be starting the process first thing Monday morning when I contact Rep. Chris Smith (R-NJ).  I’ll be blogging here about the process as the meeting approaches.  I believe that I’ve done a good job of explaining Type I Diabetes to all of you.  So now I’ll be taking the lessons I’ve learned here and trying to explain the rigors of Type I to my Congressman.  Wish us luck and please check back often for updates!

The Butterfly Effect

I’ve always been fascinated by the concept of ‘The Butterfly Effect’.  When you’re sitting in an emergency room being told your daughter has type I diabetes you have no idea that two years later your son will be scared that he will wake up one day and be diabetic.

I also in that moment didn’t imagined how tired I’d be, how much weight I’d gain or how much stress diabetes would add to my life. 

Today the ripple of Arden’s disease is felt in many if not all aspects of our life.  We always thought we would have three children. Now we have a difficult time talking about the idea because it begs the question, “What if that baby is diabetic too?”.  A question we just don’t have the fortitude to discuss. 

Cole asked me the other day if diabetes was something he would get...  Another moment I could have happily lived my life never having.

Yesterday I had a dentist appointment.  You can’t imagine the hoops that we had to jump through just to free me up for two hours so I could have my tooth fixed.  While I was there I had a fantastic conversation about the upcoming election with the doctor and a few other people in the office.  We talked for a few minutes and I was amazed at how clear my thoughts were and how well I was able to articulate them.  You see slowly I’m becoming accustom to being tired and feeling foggy.  Lately, I find myself not engaging in conversations because I feel like I can’t participate in them the way I want to.  I was relieved to see that I can “come back” when I’m removed from the moment-to-moment demands of Arden’s diabetes.  Hopefully, as she gets older I’ll be able to reclaim more and more of that part of me. 

I’m left to wonder, how much of herself will Arden never get to experience?  What will she lose to the demands of keeping herself alive as the responsibility of managing her type I transfers from me to her?

I not sure what diabetes will sully tomorrow but I do know what it has laid waste to so far.  If this is a fight, I think I might be losing. 

Check out Arden’s new video ‘Arden Speaks’ to hear her describe what it’s like to have a seizure caused by low blood glucose.  Please take a moment to “rate” the video, as it will show up in searched on YouTube more frequently if it is highly rated.

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

Anonymous

YOU ARE NOT LOSING THE FIGHT!!!  As a parent, you can never give up!!!!
Arden will be more resilient (I think I spelled it wrong), than you give her credit for.  Wait until you and Kelly see how totally independent she becomes and how she knows what to do with her disease.  She is a very, very, smart little girl.  She may even someday find a clue to something about her disease which inturn will create a cure.  SHE CAN DO IT!!!.
Love Mom

Wednesday, April 9, 2008 - 04:41 PM

Anonymous

Dear Scott, I'm so sad to read that you are feeling low. You are a great father. It shows in how sweet, funny, and smart your children are. You and Kelly have created a wonderful life together for all four of you and the work you do with Arden's Day is so impressive it leaves me speachless. I know I can't imagine how hard you have to work to keep Arden well but as you know I live with an adult with diabetes and I can guarantee you a reprieve is comming with every day she grows older and gains more weight. Mike isn't always at a perfect BG  but he has a giant range now where he feels close to normal and isn't so much a slave to his BG.  He is sharp and funny and whole despite his disease.  Diabetes will define all of you less and less as time goes by. Hang in there-you are loved!   Jill and Mike

Thursday, April 10, 2008 - 12:14 AM

Maria

Scott, 
I often say to Steve that you are so inspirational. I know everyone may not agree with this, but God does not give us anything we can not handle. God knows how strong you are.
Maria

Friday, April 11, 2008 - 12:16 AM

Maria

Follow-up:
Arden is amazingly strong and is a gift.

Friday, April 11, 2008 - 12:18 AM

Anonymous

Hi Scott,
I am new to your blogs and I sent a message a few weeks back but I don't think I did it right. In any case, Thank you so much for sharing your experiences with us. Not only are you educating people about type 1 diabetes but you are also a mirror for other parents who have a child with type 1. Sometimes it can feel like a very lonely existence and your stories help me to not feel quite so lonely.
As frustrating,draining,time-consuming as this disease is, it is a manageable disease (some days better than others) and I remind myself to be grateful for that. I can understand your feeling low, but you are not defeated, you still have a beautiful little girl with a great big smile!
Wishing you and yours good health and happiness always!!!
Erin

Sunday, April 13, 2008 - 01:25 AM