In July, Rocco and I will make the exciting trek to Washington, with the other Type 1child delegates, to spend three days lobbying for renewed funding of the Special Diabetes Program. The Special Diabetes Program is an ongoing congressional research initiative aimed at the prevention and cure of Type1 diabetes. Our trip is funded by JDRF; Michael and Zeke will also make the trip, at our expense.
We are honored to be blessed with such an amazing opportunity. I will blog every day (probably a couple of times a day) to share the experience. I am particularly excited to have Rocco see the inside of the Capitol Building. What an amazing experience!
When I was deciding whether we should apply, I did a lot of soul searching. I wanted to make sure that Rocco would be okay with such a big responsibility. Could he speak clearly about what it is like to live with diabetes as a kid? Would he be overwhelmed by this experience at such a young age? Would he say something silly if he met the President? Lol! Ya never know...
Regarding his readiness, Michael and I have raised both Rocco and Zeke to be appropriate in front of adults. We have tried very hard to give them a big picture sense of the world, as best we could. We also have taught Rocco that while Type 1 diabetes can sometimes seem daunting, it doesn't need to be overwhelming. No sense in hating it, because hating it could eventually eat you up. Rocco understands that although we would like it go away as soon as possible, he can still experience life without limitations, as long as he is responsible in monitoring his blood sugar.
Over the past year, I have tried to teach him another life lesson. I want him to understand that if you are handed a disease but you also have a strong voice and a smart mind, you have the responsibility to help end your disease. In whatever way that makes you happy. It doesn't matter if he sends in a few dollars once a year or speaks on Capitol Hill.
I couldn't help crying. These kids were given the chance to feel control over their mostly uncontrollable world. I said to myself, "I want that for him." I felt the overwhelming urge to help fight this terrible disease. Bottom line: i knew my fears should not limit him. We decided to apply. I knew he may be young but if there was anyway to grow up, this would be a great way. What the heck!
To our surprise and delight, he was accepted! I am extremely excited to have him feel empowered to help millions of Type 1 people at such a young age. If nothing else, I want to teach him the word "empowered!"
Last night, I decided to explain it to him. I showed him the video. I explained that after doing this he will look back on the experience and feel good about it even when he becomes an adult. I told him that one day he will go for a big job interview and think to himself, "I lived with Type 1 and I spoke on Capitol Hill when I was seven, I can totally get this job!"
After my explanation, he looked distraught. I worried that I overwhelmed him with too many adult thoughts. But I should have known better because he said, "Yeah, but mom, this is going to stink because when I am big and I am up in space, if I want to eat something, I am going to have to unzip my space suit, take out my pump, and give myself insulin. It's going to be a giant pain."
I laughed and kissed and hugged him hard. All my fears about overwhelming my child disappeared. Rocco the astronaut is ready for zero gravity and for Washington D.C.!
You may be wondering how this has affected Zeke. Well, first let me admit that I bought him an iPhone yesterday (ha!) since Rocco has one to check in with me about blood sugars.We always try to make sure that Rocco’s Type 1 doesn’t make Zeke feel left out. Making the trip to Washington with Michael is also a good move. Apparently he's ok with his brother getting all this attention, based on this recent exchange. "Mom, I don't want to go to Washington," he said. "Why, honey?" I ask breezily while dying inside.With a devilish grin, he said, "Because then I could stay home and eat all the candy!"
He also told his aunt and uncle, "My dad and I will get to see where they make money in Washington while Rocco and mom are at a bunch of borrrriiing meetings!"
So it looks like both my children will be just fine with our adventure!
We are honored that Rocco has been chosen to tell our representatives what it’s like to be a kid with Type 1 diabetes. And I will have the opportunity to relate what it's like to raise a child with Type 1. I will also do my best to represent the many other mothers and fathers out there who are living my same life every day. I’ll keep posting along the way to let you know how it goes.
Here is a copy of the letter we sent:
October 11, 2012
Dear Member of Congress,
Imagine if you were told that you will develop Type 1 diabetes sometime in your lifetime. You wouldn't know the exact moment you will get it, but you know it's coming. Would you want scientists to keep working on a cure? Now imagine the same scenario but the doctor tells you it is your child that will get diabetes. Now, that funding and research seems more urgent, doesn't it?
Our story is similar to this, however, my son already has Type 1 diabetes. Since he is only seven years old, I am speaking on his behalf. Recently, I asked him why he would want diabetes cured and he simply said, "Because then I wouldn't have to get my blood sugar checked during recess. It takes too long and I miss the fun part of school." Right now, missing recess is the main concern he has about his life-altering disease. With your help in funding research toward a cure, you can ensure that other concerns about his condition will never be relevant for him.
Rocco's story begins at 22 months old. His diapers were filling up much more frequently than those of his twin brother. At the waterpark, I noticed his swim suit was falling off from significant weight loss. He was always thirsty. His behavior had changed some. My happy little guy seemed to be irritable and vacant. This was troubling. It just didn't seem to fit. Aren't all one-year-olds usually happy? At a routine doctor visit, I mentioned these symptoms. The doctor decided to test for diabetes, although she assured me he was probably fine. She tested his urine and came back into the room with tears in her eyes. "I'm sorry but your son has Type 1 diabetes," she said.
While in the hospital that same day, my husband and I watched Rocco as he slept so peacefully in the baby-sized hospital bed. As he lay there, he had no idea that his life had changed irrevocably. He had no idea that he would have to endure lancets poking his finger 6-10 times every day for the rest of his life. He had no idea that he would have at least four shots every day for the next six months until he received his insulin pump. He also had no idea that one day he might have an opportunity to speak to elected officials as a delegate to the Children's Congress, to change his and 26 million other people's future. He had no idea as he slept, while his parents and a team of people watched over him, that one day he could be only normal again. Normal without Type 1 diabetes. Not just normal with diabetes.
Rocco is now seven years old. He is a natural leader. He likes fishing and frogs. He is compassionate. He says he will one day be a sea turtle rescuer. Even though I agree rescuing sea turtles is a very important job, it makes me wonder what else he could become if he was empowered with the idea that he was able to speak on Capitol Hill at such a young age. What he could become knowing that he aided in the "rescue" of 26 million Americans and generations more who share his diagnosis.
Then, I asked myself the same question, "Why do I want a cure for diabetes?" I want him to be free of the feelings of the high blood sugars and the low blood sugars. I want him to be able to take his insulin pump off and put in the drawer with the lost teeth and finger paintings. I, also, want him to eat freely in his life; to never again count another carbohydrate. I want him to be able to bring cupcakes into school for his birthday. I want to not hold my breath when he indulges in the sugary treat.
But more importantly, I want him to live without the long-term threat of heart damage, kidney disease and blindness. Rocco is ten times more likely to have a heart attack or a stroke than his twin brother. These are only a few complications of diabetes, devastating to the victim but also prohibitive in terms of U.S. health care costs. With continued funding toward a cure, my son and our family have hope to eliminate all of the above within his lifetime. If the funding stops or slows, that hope is lost. Wars have been fought and won with hope. Diabetes can be cured with hope and with your help.
As parents of children with Type 1 diabetes, we spend our days chasing an in-range blood sugar number. Some parent's only wish is to have their children grow up and be productive members of society. Some parents want their children to grow up and make a difference in the world. If this was your parent's wish, they got lucky. You have the power now to make a difference in the world of millions of Americans. The parents of a child with diabetes want these things for their children too.
My husband and I are trying to teach both our sons that every problem comes with a solution. In efforts to lead by example our family is currently involved in many outreach awareness activities. I volunteer for JDRF as a parent mentor. This allows Rocco to become a "kid mentor" and share his experiences with other children who are newly diagnosed. I also write a blog that chronicles the daily highs and lows of raising one child with diabetes and one without. It has been read over 35,000 times, in more than 40 countries. Our family has chaired meetings with teachers, administrators and classmates, to explain diabetes management. Also, we are currently creating a children's book about diabetes. It will be a book of questions made up by children. Both of my boys will answer the questions. This will ensure it is told from the perspective of not only the child with diabetes but also from the sibling's perspective. Profits from the book will be donated to the Special Diabetes Program.
Soon, you have the opportunity to make a difference. You get to change the lives of 8.3% of the population. You can choose to stop the burden of $174,000,000,000 spent on diabetes in the United States alone. That is a statistic from 2007. That number is expected to triple in the next twenty-five years. These numbers are staggering. However, you can help stop this madness. You can choose to continue the funding of JDRF and the Special Diabetes Program (SDP).
The Special Diabetes Program has sponsored research that has identified the genetic markers of people who are at risk for developing Type 1 diabetes. Intensive, ongoing SDP research seeks to identify environmental factors that trigger the onset of Type 1 diabetes.
When I asked Rocco if he would want to talk to some important people and ask them for money to end diabetes, he said, "Would they end it for everybody?" I nodded. He said, "Then, yes!"
That's the kind of kid he is.
Thank you for your consideration.
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