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Just Don’t Do Nothing!
Tom Karlya
On September 26, 1992, my daughter Kaitlyn was diagnosed with type 1 diabetes. Since that time, we have immersed ourselves in the world of diabetes with two goals: First, to ensure that Kaitlyn has the very best tools, both medical and emotional, to manage her diabetes, and second, to dedicate our unyielding efforts in pursuit of a cure. For us, it's not either/or: It's both.
In 2009, the second of my three children, Rob, was diagnosed with type 1 diabetes at age 13. The relentless drive that was already deeply in place deepened exponentially. Today, my passion has not abated.
Parents are always looking for inspiration to accomplish the two goals that consume my family. In my opinion, the best way to stay "fired up" is to stay informed and, perhaps more important, to remember that it's your child who is your source of inspiration. Our children achieve the most incredible things. They do what so many others do, if not more. They soar to heights that others cannot reach. And they do it all with diabetes.
The advances that we've seen over the years are helping to keep our kids as healthy as possible until a cure is found. But we have done so much more to fulfill that first goal of ours than merely keep up with the newest tools and technologies. The benefit of our involvement has been immeasurable, and that is why it's important that you "just don't do nothing." Parents must take a step and make a difference.
Here are some tips for navigating through this maze we call diabetes.
Finding Friends Online
The Internet can be a scary place, but it's also an incredible resource, and you should know this: Your child is looking online as well. Do you think you're the only one who is afraid?
As you start your online journey, one of the first places you should visit is www.diabetesadvocates.org. Click "Members" and read about the topics that interest you. Many of the writers are not medical experts, but people just like you who want to share their knowledge and experiences. They'll save you much time as you navigate the information highway. The online community can be a powerful ally. The diabetes community will become your strength.
Savoring Summer Camp
If your child is the appropriate age, there's no experience quite like summer camp. This issue of Diabetes Health is full of information about the many camp offerings across the country. Camp can be an important rite of passage, a step toward maturity, and a way to lay claim to independence. Camp is just as critical for children with diabetes as for those without, and it's important that they take this leap in a safe, empathetic, and compassionate environment.
The Diabetes Education and Camping Association (DECA), at www.diabetescamps.org, can help you understand this even more. My daughter spent years involved with camp, and I strongly suggest that you consider it, even though it may be difficult to let go. Camps, whether full-time or daily, are often held in beautiful mountain communities, and they are staffed with professionals who can provide an incredible learning opportunity.
The more you empower your child to take control, the more you will sleep at night. (Actually, that's probably a lie. We'll never really sleep well until there's a cure, will we?)
The truth is that diabetes belongs to those who have it, not to us as parents. It surely rattles our lives to the very core, but we need to recognize that our job is to help our kids own it. If they don't own diabetes, diabetes will most assuredly own them--and that's not an option.
Fun for the Entire Family
As camp is to the individual, Children With Diabetes (CWD) is to families. CWD's annual Friends for Life conference in Orlando, Florida, is a must for every family. During this five-day, fun-filled, educational, and emotional experience, the entire family (including grandparents, those often forgotten entities) will learn more about diabetes, from technology to education to a whole lot of fun. It's the best bonding experience you'll ever have. I can tell you that our lives changed dramatically during the conference, and some of our closest "Friends for Life" are those whom we met through CWD. Both camp and CWD offer scholarships to those in need, so there's no excuse not to attend. You can find the CWD website at www.childrenwithdiabetes.com.
Just Don't Do Nothing!
What I've found in my many years involved in the diabetes philanthropic world truly surprises me. While I've met many terrific people who are involved, so many more do nothing at all. Or, to my regret, those who have been involved develop what is commonly called "burnout."
No matter what you're dealing with in your family (and believe me, with two kids who have diabetes, I know a lot about that), you can never be too busy to raise money for another building at camp, fund a research project, help give scholarships to kids (http://diabetesscholars.org/), write a letter, or educate. There's always something to do with your name on it. For your kid's sake, find it.
The bottom line: Our kids won't be cured, the camps won't expand, and those senators won't change their minds unless we get up off our butts and get it done ourselves. No one will do it for us.
Burnout? I never understood that phrase or that philosophy. I understand taking a break for a bit; everyone is entitled to that. But remember, those who are living with diabetes never get a break. As my good friend, ironman athlete Jay Hewitt (who has type 1), says, "How badly do you want it?" I'll get burned out when my children have that luxury, and not before. Period.
Turning to our second goal, to dedicate our unyielding efforts in pursuit of a cure, I've found that many people with diabetes (and their parents) have been hearing about a cure for so long that they've become jaded by unfulfilled "promises." I understand. But for me, it's a little different because I've also witnessed the tremendous advances in cure-focused research. That has me equally fired up, and you know what? My belief that a cure can be reached is stronger now, and that's another reason why we "just don't do nothing."
To us, a cure means that our kids are able to naturally produce their own insulin, which normalizes their blood sugar levels without risk or harm and relieves them of the worry and hassles of diabetes. Now, many may tell you that it won't happen. They've told me. I've been at this for 20 years, and I do not live pie-in-the-sky: I live with realistic hope.
That hope is embodied in a place that has the same drive for a cure as we have, a place that has all phases of research under one roof. It shares findings with other researchers and collaborates with the world to hasten progress to actually help those with diabetes. It's a place where I can really feel hope. For us, that place is the Diabetes Research Institute (DRI) at the University of Miami Miller School of Medicine (www.diabetesresearch.org).
I toured the DRI many years ago, and it changed my life. I invite you to touch hope and see the work of the DRI for yourself. Many families have done just that and walked away with renewed hope and excitement about the future of their children.
What Will You Do?
There are many places that seek your involvement to raise funds. Don't merely give to an organization because it's convenient. Make sure that it aligns with your beliefs, and ask lots of questions. If you do not like the answers, then simply leave. Your time, money, and resources are too valuable, regardless of whether you give 20 dollars or millions.
Are you taking the easy road and doing the bare minimum? How badly do you want your child to know all that there is to know? Do all that they can do? Or be cured? How much?
I've worked with many people who were scared and unsure when they started. They thought that theirs was the only family in their area that was dealing with diabetes. They knew no one else. Now they are community leaders, helping hundreds of others become involved. They did it to help their children, and that served as their motivation.
The best part is, we can help you too. If you're unsure about what to do or how to begin, or if you want to know more how you can make a difference, please visit www.diabetesresearch.org/diabetesdad. Contact me, and I'll help you get started. But whatever you do and wherever your journey takes you, remember that the most important thing is "Just don't do nothing." I know. I'm a diabetes dad.
Categories: Burnout, Children with Diabetes, Cure, CWD, DECA, Diabetes, Diabetes, Diabetes Education and Camping Association, Diabetes Research Institute, DRI, Internet, Jay Hewitt, Summer Camp, Type 1 Diabetes, Type 1 Issues
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Comments
Get your whole family to a functional medicine or naturopathic dr and stop eating gluten and dairy (soy too probably), now. eat only organic, non-gmo foods.
I'm so sorry that Anonymous above is so discouraged. I know what a rotten feeling it is to not see progress. But our family agrees that doing SOMETHING to reach a cure, while also improving management, is the best way to feel better - for the person with TD1 as well as the other family members. We get a lot of satisfaction working with our friends at JDRF - raising money for a cure, sitting in on research presentations, meeting researchers and offering encouragement, going to camps, helping young (and older) folks with TD1 reach their dreams (doing half-marathons, marathons, play basketball, swim, play water polo, water ski, snow ski, wakeboard, snowboard - you name it!). FOR US, staying active and engaged helps the most. We put the rest out of our heads. We want to live well, and we do.
If you find solace in doing something that's great. However, the talk is cheap because all the 'progress' is in academia and so I'd rather nothing get reported and let all the research be done in secret. It's more harmful to hear 'breakthrough' after 'breakthrough' in the media and then nothing at the bedside. It's grossly irresponsible. But, there has to be the 'leaks' of 'progress' to keep the money train going. Btw-JDRF's Dr. Insel gets >$650k in salary and $50k per year in a housing allowance so it's a business, nothing more! And, they are a NFP!
Thank you SO much for your article. We are a year and a half on our journey into this new normal. I completely agree with you - do SOMETHING!!! Progress is being made. We recently attended UCSF's annual symposium and there is proof of the progress. We fundraise, we advocate, we ensure that our 4 year old has the best that is on the market today. I too have met the people who do nothing, and sadly it is their children who suffer because of the lackadaisical approach to management. So thank you Tom, like you I will do "nothing" when my son has that same option.
Whether or not one believes that there will be a cure is neither here nor there, regardless of one's belief this is a perfect time to do something about the challenges that many face today. Most children are not being accommodated in a school setting as they should be. It's the perfect time to do something like advocate. People are not well aware of the differences between type 1 and type 2 diabetes and hold prejudices towards both. Perfect time to do something like educate. There are many disparities within our own communities due to lack of funding and resources for families. It's the perfect time to do something like advocating for continued funding and better access to health care and/or supplies. If you are not comfortable with fund raising and/or feel it's not valuable it's the perfect time to do something with your time that you feel is valuable for the families with type 1 diabetes. It costs nothing. I can hear the pain in your posts about the lack of resolve in reference to finding a cure. I too hope that one day there is one. In the meantime you will find me doing what I suggested to you because I can't do nothing. Respectfully, Tami
The problem I have with JDRF, DRI and other's is that everything they advertise is for a CURE but the reality of where the donations are significantly going towards is anywhere but the cure. Over 2/3 of the donations are put into prevention (not a cure), complications, and technology (maintenance). So, what they need to do is advertise their cause correctly and if they are having a "Walk" for a "Cure" then the cure is where the money should go. But, they know if they advertise a "Walk" to "treat, maintain, or prevent" then the donor dollars will slowly dry-up.
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