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20 years of being in love

14 years of marital bliss

5 years of infertility

9 months of a high risk pregnancy

2 perfect boys (at the same time)

1 heart failure

1 type 1 diabetes diagnosis

1 happy life

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I am a stay at home mom who is raising twins. One of my guys has type 1 diabetes and one does not. I am writing this blog to unite type 1 parents or twin parents. Comment on my posts or in the "what's your high?" and "what's your low?" to join the community of parents just trying to do the best we can!

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10/3/12

What can one person do?



I have always shied away from money-raising activities related to diabetes. For similar reasons, I’ve never sold Partylite candles or Tupperware. I just don't want to bug my friends for money. Every time I became aware of an upcoming diabetes walk, I would sigh. I wanted to help, but just couldn't find the drive. Plus, I am just one person, and when I saw all of the photos of the walks, it seemed as if they had a good enough turn out without little old me. They always looked as if they had it covered.

 

 




So for the past several years, I have left it alone. How could my measly $200 that I might raise have an impact on this disease? I am small in this world. It was easier to just not do it and silently cheer on those that do from the comfort of my iPad. So, I did.  


Lately though, my determination to help cure this disease has become more intense. With every poke of Rocco's finger, I become hungrier. Hungry to find a cure. Hungry to end it. Most of all, hungry to hurry up the process so that Rocco can one day take off his insulin pump and put it in the drawer with his lost teeth and kindergarten drawings. The same drawer that holds memories of times gone by. now want to become part of the reason that future generations will say, "They used to do what?? Poke their fingers and wear a huge pumps all day, really? Wasn't that uncomfortable?"

 

But, again. I am just me. 





I live in a small city in the middle of America. I am one small person, but I also have cute little kid to help me. 




It would be easy to teach him how to fund raise, promote, and speak. But, to what extent can I burden this little seven-year-old to cure his own disease?

 

If I do make him an activist for a cure, will he learn things about diabetes from others before he is ready? I am not ready for him to know about the complications of poorly-maintained diabetes. I do not want him to be told by a stranger that he may lose his feet or his eyesight some day. I have protected him until now from the dangers and misconceptions of diabetes. I fear that by having him help raise awareness or money, he would constantly hear these things from others.  Right now he only knows what could happen to him today. He may feel low or high, and that’s it. He does not know he could pass out, seize or go into a coma. He also does not know there are lawmakers, scientists and philanthropists working everyday trying to put his pump in the drawer. When do I teach him these things?

 

Once, I start to have him help me create awareness and earn money for a cure, will he think it is then his job to find a cure? When it doesn't happen in a week (because let's face it every seven- year-old only has a time horizon of a week or less), will his young heart feel responsible? He gets upset if he misses a spelling word. Can you imagine how he would feel if he didn't cure diabetes?

 

Also, I fear I could alienate my friends with my cause. "Here comes crazy fundraising girl!"


Additionally, I think about Zeke. How does diabetes getting a lot of attention in our household affect him? How do incorporate him into it all? If I do involve them, how do I make him feel just as unique and powerful as his brother during our activism? 



Finally, I know myself. I know that if I believe in something, it can consume me. I will think and talk about it a lot. Would this take a toll on my marriage? Diabetes already is a presence in our life every minute of every day. If I started to get more involved, would it be the only thing I had to talk about? Would I become uninteresting to my husband? It happened once before during our infertility years. I guess I like the fight of making the impossible, possible. Every conversation we had eventually became about having a baby. I can tell you now; I am just as passionate about curing my child as I was about having him.  I fear the same thing would happen again once I got more involved.  

 

It is for all of these reasons that I have hesitated.

 

However, I also know these are excuses. Everyone can and has come up with excuses to not help. To not give. I have. Many times. I can help. I should help. If I don't help, there will be more finger pokes. More insulin pumps. More training of the staff at school. Even as I write this, I can feel myself getting fired up.There will be more doctor appointments. There will be low blood sugars in board rooms and highs during ACT college entrance exams. And I am only speaking for Rocco. Gosh, when I think about all of that for the 26 million other people out there, I can feel my heart swell with anger and determination.

 

You can ask anyone I have worked for in the past, once I believe in something, I don't quit. I want to convince others of the joy they will feel from knowing they gave a little to help Rocco or Timmy or Janey.

 

Friends and family watch Rocco and always ask me, "How can I help?” I never knew what to say. But maybe, just maybe, I could rally relatives and friends and readers of this blog to help me gain some momentum toward a cure. Maybe I can teach Rocco the right way to help so he doesn't feel the weight of the world on his shoulders. Maybe I could teach him how to politely and wisely answer those misconceptions.

 

JDRF has already advanced the development of the artificial pancreas through their research funding. They have climbed mountains to do genetic testing on siblings of diabetics, to help determine the root causes of Type 1 diabetes. This knowledge can become the direct gateway to the cure. The American Diabetes Association (ADA) also makes great strides every day helping to educate people on the difference between Type 1 and Type 2. They also help the two groups separately navigate their way through their much different days. I could help them gather even more momentum.


Click here to see amazing advancements of JDRF.


Click here to see ADA's awesome progress.



I am only one person in the middle of America. But when I think about it, I also have a blog that has been read almost 35,000 times. I have a strong heart. I have a passionate voice. I have an obsessive personality. Most importantly, I have a son who needs me to cure this. A son who needs to take his ACT exam without high or low blood sugar. Who needs to get into the car, turn the key and drive, without first checking his blood sugar. His only concern should be which song to tell the iPod to play. 


I can help. I should help and make all of these things possible.

 

The other day, as I was drivingnand thinking about all of this when I saw this billboard. It was like beacon. 



 

 

Then I saw this.



I said out loud to myself, "What if they never did?" What if they also considered themselves too small? What if they just got jobs and raised their families? What if Oprah just worked at a local TV station and raised some kids?  What if Nelson Mandela never left his small village of Qunu?  What if Einstein just did his math homework and kept working as a patent clerk after graduation?

 

What if everyone of the people, in the diabetes walk pictures above, didn't raise their $200+ either? 


So today, I have made a decision.  I decided I would try what works for me. I still am nervous about fund raising. Same reasons as mentioned above. But, I think I am wavering.  I do think I might feel a little stronger about having Rocco (maybe with Zeke) tell our story and help either raise awareness or help lobby legislatures for increased research funding.

 

It's funny; I am realizing that speaking to you guys through writing or to strangers at school about diabetes is easier for me than speaking to friends. Kind of weird. I wonder why? I hope that means it will be easier for me to one day speak to Senators or people at a confrence. A topic for another day.

 

I have already started my application to have Rocco and I join Mary Tyler Moore and many others as delegates to the Children’s Congress on Capitol

Hill, to urge continuation of congressional funding of diabetes research. 



Click here to read about Children's Congress. 



This week, I am going through media training. So, if and when I do get to speak on behalf of the parents helping their children with diabetes, I am polished and ready.


Finally, I am going to volunteer more with JDRF and the ADA. Not sure how yet, but I am open.

 

Thanks in advance for your support as I begin my journey. I'll keep posting about how it goes. Wish me luck! 


For to be free is not merely to cast off one's chains, but to live in a way that respects and enhances the freedom of others." - Nelson Mandela

 




At 41, it feels good finally knowing what I will do when I grow up... Writing and curing sound good to me! 

 






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