Monday, November 14, 2011

#14 - World Diabetes Day Post #NHPBM

I'm going to start with posting our WDD Postcard Exchange Postcard ---

Thank you to all that sent me pictures of your little ones so that I could use them and thank you to Lorraine  for the wonderful WDD artwork with the blue circles that is making the rounds on Facebook!  

I had originally planned to do something bold for WDD.  Well, then Sophie got sick and I had a change of heart and then I couldn't decide what to do and well here we are on the big day and I am feeling a little overwhelmed.

So, my bold post for WDD is going to just be me being bold by being completely honest.

If I could write the FDA a letter and be assured that someone would actually read it I think I would write from the heart.  The FDA knows the facts and the figures, they've seen the research and the data.  What they need to know is that this mom is barely hanging on by a thread. 

I would tell them . . .

I have 2 chronically ill children and I need your help.  You see, my son, Nate has Type 1 Diabetes and my daughter, Sophie has Ulcerative Colitis.  Between the 2 of them I am one exhausted mama.  I have another little girl too, my oldest daughter, Emma is disease free but wears the weight of the world on her small little shoulders.  So, I really have 3 children that need your help.  

Today I just want to really talk about Nate and his type 1 diabetes.  You see, I've learned on our 2-year journey with type 1 when you know better - you do better.  I am so very appreciative for the wonderful technology that we have to keep Nate alive, safe and strong but I know we can do better. 

Nate wears a tubeless insulin pump that I know can be smaller.  It's there --- I've seen it.  Why oh why is it taking you so long to approve it?  Obviously safety is a top priority but come on!!  Nate also wears a continuous glucose monitor which for the most part keeps him safe.  It's certainly not perfect but I cannot imagine life without it.  

This brings me to the artificial pancreas project.  I won't lie I've been pretty skeptical about it because of the inability of our current CGM to be more accurate. The thought of our current pump and CGM talking to each other and controlling Nate's diabetes is quite frightening. I would say up until the point that I watched this news clip from Israel (see below) I was a not a big supporter of the AP project.  

But then I watched this video. Thank you to Jessica Apple and A Sweet Life for sharing the video and translating.  It's really powerful.  Please take a moment to take a look.

We need this . . . now.  Is it perfect? - No but it takes trials like these to get where we need to be. These children and adults living with type 1 diabetes need you, the FDA to say YES to the AP project.  I need you to say yes to the AP Project.  

You see it's been 2 years since I slept through the night. I'm tired.  I'm grumpy.  I'm frumpy. I'm so sick of counting carbs I could scream.  This is me being honest.  I am being selfish.  I need a cure for T1 but in the mean time I'll take anything I can get.  Diabetes is wearing me down. I'm feeling like 1/2 the mom I used to be with 3 times more responsibility.  I need this for my son, for our friends living with T1 and I need it for me.  Do you hear me?  I'm begging you!!

The message that JDRF sent you last week with the statistic 1 in 20 people with type 1 will DIE from low blood sugar keeps me from sleeping through the night.  Although I've known the risks and complications from diabetes ---- that number is screaming at me and I am screaming at you . . . 

1 in 20.

He's not a number!  He's my son!  I can't lose him! Please do not let him become a statistic!  The very thought makes me physically ill!  He is my son --- please look at his face and help save his life!

Read these words and take them to heart:

In the next few weeks, the FDA has a chance to show it is leading the world in medical innovation, not standing in its way.  It will lay out the pathway to bring to market the first artificial pancreas, a life saving technology now under development, and the most revolutionary treatment in diabetes since the discovery of insulin.  Three million kids, teens, and adults with type 1 diabetes are counting on the FDA to get it right.  Our lives and health are at stake. 

I'm just a mom so I can't talk to you in medical speak or quote statistics but I can understand the statement above and I am asking you to do the right thing.  For Nate. For me. For the Three millions others living with type 1.  Please!

Thank you,          

(Emma, Sophie and Nate's very tired mommy)

This post was written as part of NHBPM – 30 health posts in 30 days:


WOW!!! That is one powerful image with the numbers and Nate's pic!!! Love the postcard, too! You are creative, my friend!

I feel like half the mother with three times the responsibility too. Excellent description of what it feels like to be a D mama.

I so wish the FDA would get a move on!

Oh Laura I have tears pouring down my face. I feel like this is sooo right for me right now as well. YOU ARE AN AMAIZNG mom. YOU ROCK!! Thank you so much for putting into words how I feel all the time!

Ok Natey Poos face in that sea of numbers has me crying as I wait for my 1 in 20s bg to come up.

Excellent post!

FDA get it together!!!

Wow, I love your mother enthusiasm in this letter. I love that you wrote the real details. And, I love that beautiful postcard.

Just watched that video, too -- it certainly gives you hope. So exciting.

Donna said...

First of all.... LOVE the postcard!!! So awesome to see all of our kiddos faces!

The rest of the post... your thoughts and words matched mine perfectly.

"He's not a number... he's my son!" You thell them, mama!!

NikDuck said...

Wow, that letter and picture of Nate amongst the 20 is quite powerful...I think you should send it! Thanks for putting it into words for all of us Moms out there. I agree completely...T1 is wearing me down. I want my old life back.

Michelle said...

Wonderful, heartfelt letter! I couldn't have said it better myself :) LOVE the postcard..and the 1 in 20 image of Nate...very powerful!

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Just a Mom

I am NOT a doctor, nor do I play one on this blog.

I AM a wife.
I AM the mom of 3 wonderful children.
I AM my son's pancreas.

The information provided on this blog is from our personal experiences with Type 1 diabetes. Because something works for us does not mean it will work for you.

Please consult your doctor if you have any questions or concerns about your health care options.

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