Brenda Novak, mother of five and best-selling author, noticed her youngest son Thad was showing symptoms of diabetes when he was only five-years-old. Soon thereafter he was diagnosed with type 1 diabetes. Learning how to give her son the best possible care wasn’t enough for Brenda, and so she decided to fight diabetes by starting her own online auction to raise funds for diabetes research. The auction runs on her website every year and to date Brenda has raised over one million dollars, all of which is donated to the The Diabetes Research Institute at the University of Miami.
It’s November, Diabetes Awareness Month, and below you’ll find an interview with Brenda Novak, a true champion of diabetes awareness.
Can you tell us a little bit about your family and household before diabetes?
Our household has always been a busy (maybe even hectic) one, but that’s probably never been truer than in the period before Thad’s diagnosis—probably because all my kids were so young. I had five in a ten-year period, I was just launching my fiction career, and my husband was putting in long, long hours, so he wasn’t around until late in the evening. I’d say we were your typical middle-class family—active in work, church, community, and kids’ sports.
What were the symptoms that led to Thad’s diagnosis? How long were they present before you realized something was really wrong?
Thad’s symptoms came on really fast. He had a virulent flu that lasted two days. As soon as he recovered from that, the symptoms showed up. He was intensely thirsty, couldn’t even wait the five minutes it took to drive from school to home without pleading for water. He also had to urinate far too frequently. He had never been a bed-wetter. When he started getting up at night, trying to reach the toilet and making it only as far as my bedroom, I knew something had changed.Then we took the kids target-shooting one day, and all I had to drink was Kool-Aid (which is odd for us because we’ve always been pretty strict about not giving our kids sugary drinks–including soda). It was then I realized that he had diabetes. The more Kool-Aid he drank, the thirstier he became. I noticed it because I was trying to limit the kids as to how much they could have, but he kept pleading and pleading for more, no matter how much I gave him. I went home and looked up the symptoms on the Internet—and it confirmed what I had already guessed.
Thad was only five-years-old at the time of his diagnosis. How did you explain diabetes to him? How did he react? Was he willing to have his blood sugar checked and receive injections, or was it a fight?
My son is a real trooper, and I’m sure every mom can say that. These kids have to go through so much. I’ve been especially grateful that Thad has had a positive attitude from the start. I was more heartbroken than he was (probably because he was so young and didn’t quite realize).
I honestly don’t remember how I explained things to him. I think the doctors did that in the hospital. I was reeling, and simply tried to learn with him what we needed to do. But from the beginning, when he complained about the needles, I would tell him how grateful I was for them, and for the insulin inside them, because through this treatment he could remain healthy. The hope of that was a great blessing to both of us, and he seemed to accept it.
Our biggest hurdle has been Thad’s diet. He will do the finger pokes, the pump insertions, the exercise, but he will only adjust his diet to a certain point. He’s determined to eat like every other little boy, and only when we try to restrict him does he get upset (really upset). And it’s been that way from the beginning.
Thad is the youngest of your five children. As a woman who often feels overwhelmed with her three children, I can hardly imagine how you stayed on top of everything with five. And then add diabetes into the picture, which comes with at least as much responsibility as an infant… how did you cope at first?
When Thad was first diagnosed, it was completely overwhelming. I was already juggling like crazy. Diabetes added another huge weight because I was constantly stewing about what was happening inside his body. For eight years I’ve gotten up in the middle of the night to test him—so when you say it’s like having an infant again, I really relate to that. There was a grieving period and then a recovery period, just like with any loss. Then I decided to take it one day at a time and threw myself into doing the best I possibly could to fulfill all my separate roles. Now that the majority of the work is behind me (only the two boys are left at home), I pray my best was good enough.
What changed in your family dynamic after Thad was diagnosed?
His diagnosis should probably have changed our family dynamic more than it has. We’ve always been super close and very active, so we had that in our favor. But I made the mistake of shouldering Thad’s care myself. I wish I would’ve made it more of a shared responsibility. Then maybe it would’ve been easier to maintain a better diet. Maybe the other kids would’ve thought twice about asking for ice cream, or bringing it to the house, or making brownies, etc.
How did his siblings respond? Were they able to help?
His siblings (age 24 – 16 now) have certainly been willing to step up and check on him or test him if asked. They’ve been good babysitters and have even been willing to get up in the night to test him if I’m not here to do so. But they haven’t been willing to adjust their diets on his behalf, and that’s been disappointing.
Did your family meals change?
Our meals certainly changed. We became very aware of carbs and what foods to avoid. We also became more sensitive to portion size (but, as I mentioned, we could certainly be doing better in this regard—I definitely don’t want to paint us as the perfect diabetic family—having diabetes is a constant fight for everyone who has it).
Were there other lifestyle changes?
Other lifestyle changes included schedule. The school would not help with Thad’s care at all. As a matter of fact, they were so nasty about it, I was often in tears. They demanded that I come to the school every day at lunch to test him myself—wouldn’t provide an adult who was already there to help, wouldn’t let him test himself and call me (I had it rigged such that he had three needles with varying amounts of insulin in his pack—what he almost always needed at lunch—and planned to drive over if his needs fell outside that scope), but they would have none of it. It was very upsetting and difficult because I had deadlines for my book and those school hours were the only time I had to work.
Finally, they turned a blind eye to letting his older sister, who was in sixth grade, oversee this process. And then we had the same fight the next year when she went to junior high and there was, once again, no one to help him. They also wouldn’t allow Thad to keep his tester kit with him in the classroom. It had to remain in the office, where he couldn’t even get to it when he needed it. When I look back, I get angry all over again (as you can probably tell). I was shocked that they could be so unfeeling and unresponsive to a little boy who only needed to test his blood. (If he’d had a behavioral problem, they would’ve lined him up instantly to get some Ritalin down him. It just made no sense to me.)
Do you have any advice for parents with newly diagnosed type 1 children?
I’d probably suggest that they give themselves time to grieve and adjust, and then learn all they can about managing the disease. It’s one of those that is really hard to manage—but not impossible (at least most of the time). Then I’d tell them to join with me in fighting back by getting involved in my annual online auction for diabetes research, which is held on my website (www.brendanovak.com) every May. So far, we’ve raised over $1 million—and hope to make that $2 million.
When did the idea of fundraising for diabetes research come to you?
I had wanted to do something from the very beginning, as soon as Thad was diagnosed, but I had such limited resources. I kept telling myself that the time would come—there’s a time and a season for everything, etc. But I was constantly brainstorming, trying to come up with the right opportunity.
Then I went to a silent auction at my son’s elementary school. There were some fantastic items that had been donated, but the turn-out was poor and the school didn’t make much money. I started thinking about the difficulty of trying to get a large number of people inside one building all at the same time, and the advantages of doing something on the web became very apparent. I figured I could use the support and traffic I already receive from my fan base to help my son and others like him, and the idea to do an on-line auction was born.
Was it difficult to get the project going?
I think any fundraiser is difficult—it requires so much work. But my auction has also been very fulfilling. It’s a labor of love, a coming together of such an amazing community of writers, readers, philanthropists, publishing officials and others.
My first year was more of a test market to see if it would work. When it raised $34,982, I realized the idea definitely had potential. The second year, the amount I raised doubled, and it doubled again the next year. The first three years I ran it all by myself. Then I got an assistant, and we have continued to grow in the last three years. In May, we broke $1 million as a cumulative total and had a new yearly best at $303,000. I’m hoping the auction will continue to grow at such a rate!
Where do you donate the money you raise?
The money goes to the Diabetes Research Institute (DRI) at the University of Miami—the place I feel has the best chance of finding the cure. Their scientists are involved in some amazing research. I flew to Miami last year to present the check and toured the facility and met the scientists. It was an amazing experience, and left me so encouraged. If you’d like to read more about them, visit: www.diabetesresearch.org. (For an interview with Scientific Director and Chief Medical Officer of the DRI, Dr. Camillo Ricordi, see here.)
How do you manage your family, career, Thad’s care, and still have time to run the auction? It sounds almost impossible to do it all!
Fortunately, I have a great helper, Anna. She has been a tremendous support. And I have the support of my family. My husband does all he can; the kids are really good kids, so I get off easy there, and that enables me to devote energy to fighting for a cure—which I hope to see in my lifetime.
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Brenda’s auction takes place in the spring, and Jessica Apple, Michael Aviad, Rebecca Friedman, and the rest team at ASweetLife will be helping out this year. Meanwhile, this month the DRI is doing a fundraiser of their own, Be Part of the CURE. Please visit their site.
Thank you for the great interview, and thank you Brenda for all that you do!
We’re Jeff and Natalie Kolok. We live in northwestern Vermont with our three kids: Naomi, our teenager; Johanna and Nick each nine years old. Both Johanna and Nick have type 1 diabetes. Since April 15, 2005 when Johanna was diagnosed with type 1 at age four, we’ve been doing what you’ve been doing: learning as much as we can about this disease and battling it on the go, 24/7.
Our website we started two years ago to help spread awareness:
http://www.parentingdiabetickids.com
And our campaign:
http://www.parentingdiabetickids.com/slamdiabetes