Wednesday, January 5, 2011

Dear GMA: I Want You To Know...

Dear GMA,

There's a few things I Want You to Know...

I've heard about your segment with Ricki Lake all day.  What I like to call... "The Lake Mistake".  About how, once again, the public was informed that Juvenile (Type 1) Diabetes is a preventable disease. 

Being at work, I didn't see it live. However, I just watched it. And even though I KNEW...  I KNEW what was going to be said. It still made me want to cry.  It still made me want to scream.... 

 TYPE 1 DIABETES IS NOT PREVENTABLE. It is NOT caused by diet or lack of exercise. Type 1 is an AUTO IMMUNE DISEASE! 
 Why does this hurt so much? Why can't I just chalk it up to a mistake and let it go at that?



Because my daughter was diagnosed with Type 1 Diabetes just weeks after turning 3 years old. She weighed 25 pounds.  She was skin and bones. She was deathly ill.  She had never tasted soda.  She had never had a sucker until she was 2.  We have no history of diabetes in either of our families. It came out of the blue and changed our lives forever. 



We now deal with this deadly disease every single day. We test her blood sugar around 10 times a day. We get up at least once (although it's often more) a night to check her blood and make sure she is still alive.  We count every carbohydrate that goes into her mouth. We insert needles into her body every day.  



She wears an insulin pump 24 hours a day - 7 days a week. Just to stay ALIVE.

If you have ever had to hold your child down, while she kicks and screams and BEGS you not to hurt her, to give her a shot of the medicine that keeps her alive... and done that five or more times a day...  You know it's hard to just let that hurt go. 



How do we find a cure when celebrities keep going on television and getting it wrong? Who wants to donate money to help us find that cure if the disease was something we could have prevented? NO ONE. 

I want a cure. I want to be able to go to bed at night without worrying that diabetes is going to steal my child's life away while I sleep. I want to go a few hours without seeing her blood. I want to never pierce her skin with a needle again. I want her to have a long, healthy, complication free life. I want a cure. We NEED a cure!



Every mistake sets us back. 

And we don't have time for this.

Right now, there is a disease raging thru my child's body. Causing damage. No matter how good our care is. Because no matter what we do, we will NEVER be as good as a "real" pancreas.

Hearing this is a smack in the face. 

We struggle every day to keep our kids alive. Every single one. 

We worry. We don't sleep at night. We spend THOUSANDS of dollars on medical supplies and equipment. We watch everything they eat. We take them to the endocrinologist every three months.  We hold our children while they cry in pain. We hide our own tears.

 
 One week of supplies...

I commend Ricki Lake for apologizing.  Not only did she release a statement but she also apologized on The Joy Behar Show.  I think she's sincere.  I think it was an honest mistake.
I appreciate your correction. I appreciate you taking this seriously.

But while an apology is nice.....  

It still stings.

That's why I'm looking forward to your show tomorrow when I hear a LIVE ON AIR correction will be made!

There are so many of us living with diabetes who would LOVE the opportunity to share with you and your audience about this disease.  My daughter is one.  Noah, The Diabetes Dude is another.  I'm sure they, along with all the other Diabetes Dude Ambassadors, would happily flock your studios to tell you all about life with Type 1.  And how they might have diabetes, but they don't let diabetes have them. 

Living with diabetes is hard. 

Knowing that people understand... Knowing that people "get it".... Knowing that people care....  

It makes living the D Life a little easier.

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18 comments:

  1. BRAVO!!!!!!!!!!! Beautiful post, my friend! LOVE IT!

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  2. Bravo!! Can we hijack the satellites and broadcast this to the world? Pretty please???

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  3. Beautifully and perfectly stated!! <3

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  4. Thank you for saying what needs to be said for our precious children!

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  5. here, here!
    What a terrible mistake to make at the risk of so much. I truly hope that she and other celebrities can begin to understand that their plights to help need to be very clear otherwise they're causing more damage than it's worth.
    Thanks for taking the time to put together such a heartfelt post with toughing photos, too.

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  6. Every mistake sets us back.


    And we don't have time for this.
    And I quote:

    "Right now, there is a disease raging thru my child's body. Causing damage. No matter how good our care is. Because no matter what we do, we will NEVER be as good as a "real" pancreas"

    We don't have time for this shit. You are right Hallie. Episodes like this send us back in our efforts to educate and raise funding for a cure...not to mention the psychosocial damage that being questioned by the public on the etiology of the disease and being judged on what we are feeding our children.

    Great post.

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  7. Once again..you got it right! Thanks for speaking out on behalf of all of our type 1 kiddos. We have to work harder now to get the word out...WE NEED A CURE!!

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  8. This post brought me to tears, as I'm an almost 40 yr old woman who just found out 6 years ago I had Type 1.
    I can't even imagine what it's like for a child and her parents going through this difficult circumstance every single day.

    My heart goes out to you and your family, and the little princess will grow up to be a strong woman, knowing where she came from.

    You, as parents, are amazing!
    You've inspired me today to live a better life and gain as much awareness as I can about this awful disease.

    xoxo
    Roxie

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  9. I agree. Every mistake sets us back. Well said. It simply can't be taken back despite the best of intentions.

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  10. I'm like you - not seeing the GMA ssegment - but heard about this thru' Twitter with other PWD's. You've written a great blog here that many of us don't have the words to write - but feel it in our souls.
    Many thanks from a T1 of 44 years - still young at heart - still waiting for that cure for diabetes - maybe not for myself now - but for the younger generation like your little one!

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  11. Goodness. I didn't hear anything about this. I have struggled with anger when well-meaning people perpetuate the myths. I'm glad I didn't see it. My son is a teenager and you might be surprised by the ignorance and subtle judgement he has experienced. On the other hand, he has had the opportunity to learn from the experiences (even though I want to protect him from it.)

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  12. Thanks for some quality points there. I am kind of new to online , so I printed this off to put in my file, any better way to go about keeping track of it then printing?

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  13. My cousin recommended this blog and she was totally right keep up the fantastic work!

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