Jeff and Natalie Kolok live in northwestern Vermont with their three children: Naomi, 16, and Johanna and Nicholas, each ten years old. Both Johanna and Nicholas have type 1 diabetes, Johanna since age four and Nick since age six.
Jeff vividly recalls the day that Johanna was diagnosed. “It was a sunny Friday, and we were going to be celebrating our older daughter’s birthday the next day, so we had friends and family visiting from both sides. For about a week, Johanna had been showing classic symptoms of onset, but of course, we didn’t realize it. I think Natalie sensed that there was something more going on, but I just figured she had a cold that wouldn’t go away, or a growth spurt. On the way to Johanna’s doctor appointment, I wasn’t too concerned. We were pretty lighthearted, talking about the checklist of things still to do for Naomi’s birthday party, thinking that afterward we’d go to the pharmacy, get some syrupy medicine for Johanna, and then run a few more errands. Of course, the news changed everything. With the news of her diagnosis, the sun set early that day.”
Jeff goes on, “We were there in the hospital that Saturday, and Johanna had already been punctured and poked and prodded about as much as she cared to be. I remember when it was time for her to take her next injection of insulin. She was lying in her bed with her New York Yankees cap on, her pony tail poking through the eyelet in the back, surrounded by an audience of doctors, nurses, and medical students When they told her that she needed to go down to the room to have another shot, she told me, ‘Dad, I don’t want these shots.’ And I said to her, ‘You know, honey, this is what we’re going to have to do, this is what’s going to keep you alive.’ I did my best to comfort her, and I asked her, ‘Would you like to say a little prayer?’ We did, and her head was down, and then she looked up with a little tear streaking down her face, and she said, ‘All right Dad, let’s do it.’ From that day on, while she’s had her moments, and she clearly hates diabetes, she hasn’t let it get in her way, and that’s what we want.”
After the diagnosis, Natalie says, “I started, as a mom, to deal with it emotionally. I wasn’t thinking about anything except for that very moment where we were. I wasn’t thinking ahead about anything else. I was thinking about how I was going to learn about this, how I was going to teach her, and how I was going to be her biggest fan, how I was going to continue just as I always wanted my family to be. I wasn’t going to let anything stop that, including something like type 1 diabetes. I just dealt with the emotional part behind closed doors, silently. When I was with Johanna or with Naomi, I really kept it together. I said, ‘Okay, this is what it is. Let’s go.'”
Jeff recalls his reaction differently, “I was looking at what I did, questioning how this happened on my watch, questioning my faith, questioning my ability to father and be a responsible and adequately protective dad. At the same time, I was also jumping into action mode, wanting to know everything I could possibly find out about type 1 diabetes. I thought that somehow I was going to figure it out, get control of the situation. And that, of course, just doesn’t happen. We certainly adapted, but there just wasn’t any way around type 1 diabetes. I struggled with it longer than Natalie….I mean, that’s my little girl.”
“From a dad’s perspective, we’re the protector, we’re on watch. Post-diagnosis, your world, your watch, changes. It becomes microscopic. That stress, that sense of wariness, is attached to every carb counted, every glucose test done, every infusion set changed, every insulin order made. And then, of course, it comes into play every time you leave your child somewhere, at basketball practice or gymnastics practice, or at a friend’s house for a few hours. Natalie’s done a wonderful job of being at ease with where we are and how we’ve trained the kids, but I think dads are just wired to always be eyeballing the landscape for danger. And danger, with type 1 diabetes is always, always lurking around the corner.”
Natalie recalls how their world changed after Johanna’s diagnosis. “I had no idea of the loss of freedom that there would be. There is so much time put into diabetes, it’s unbelievable. Beforehand, there is a whole lot of freedom–I think that’s the best way to describe life. There are ups and downs, but there’s just a freedom to it. Once you have diabetes, you want to live life as you did before, but diabetes is ever present, all the time, and you don’t even realize it because it because you’re in the throes of it.”
Still, a couple of years after Johanna’s diagnosis, Jeff and Natalie decided that perhaps they could open their home up to children with diabetes whose families might need a respite for a weekend. Jeff called the state Division of Children and Families to make the offer. As he says, “Lo and behold, after the person I spoke to picked herself up off the floor, she told us about Nicholas.” Nicholas had been taken into state foster care in the winter of 2006 and had been diagnosed with type 1 diabetes in February of 2007. From that point on, the state had been searching for a special family for Nick. Jeff recalls, “Nick came into our home in 2007. In September of 2008, just a little over a year later, his adoption was finalized.”
The two children are only 32 days apart in age, but very different in personality. Johanna, the family’s social butterfly, is “an effervescent little redhead with a contagious personality.” Jeff says that Nick, perhaps because of his early background, is “a very responsible kid, and so willing to try anything. He’s just a sweet, sweet kid. Regarding his diabetes, he’s very focused. The mechanics of it all, the math, the calculating, the weighing food, that all comes very naturally to him and he does it well. Johanna, on the other hand, could care less about weighing–she’s a free spirit. As a dad, it worries me for the future, but she’ll do fine. Nick on the other hand, you almost get a sense that he’s, I hate to say this, but he’s wired for this.”
Natalie says that taking care of two children with diabetes is very challenging, but “for them, it’s pretty cool that they have each other. They have the same thing that they deal with, and they understand. The other day, Johanna’s blood glucose was over 400, and she sat on my lap and just started crying. Nicholas came over, and he said, ‘Do you want some water, Johanna?’ He knew how she felt, and he knew that what she needed with insulin was water. I don’t understand how she feels, but the two of them do. They are like twins, and they understand what’s going on.”
Both Nick and Johanna have an Animus Ping pump. Their parents are teaching them, to the best of their ability, to be independent. As Natalie says, “I think we’ve done a great job of letting the kids go. We all go through it, biting our nails and telling ourselves ‘This is going to be all right,’ but you don’t want them to see that side of you. So when you drop them off, you just say, ‘Okay, you know what to do. I have confidence in you, and I’m a phone call away.’ You just have to do it, for them. I don’t want them to be dependent on us as they get older. I want them to own their diabetes and to thrive.”
It’s tough, though, she goes on. “Every night when you put your children to sleep, you tuck them in, and you just want to go ahead and rest yourself, but you might be up all night on and off. Last night, Johanna’s blood glucose was over 400, and so I was up with her every two hours. It’s like having an newborn in a lot of ways, very exhausting. I think we’ve gotten used to it, and I think we’re a great team: One of us sets the alarm and is getting up, and the other says, ‘Okay, I’ll take the next shift.’ You just do it, and then you get through the next day. I remember doing it before and thinking, ‘Oh my gosh, I’ve got to take a nap, I just can’t function,’ but we’ve both learned to function on that lifestyle, all day long.”
Jeff adds, “Like Nat was saying, pre-diagnosis, you tuck your children into bed, kiss them goodnight, and know that they’re safe in the next room. Post-diagnosis, the enemy is sleeping in the room with them, and there’s nothing you can do about it.”
Natalie and Jeff often speak to groups of parents of children with diabetes, and they have found that all parents find it very hard to leave their children for a break. Natalie says, “It took us two or three years to go away for a night, but every year now we find the opportunity to go away for at least one night. I remember the first two years, we were exhausted, we were just exhausted, and we just needed to recoup. But now, since we’ve started the website Parenting Diabetic Kids, there’s always something going on, so we talk about that a lot.”
“We started Parenting Diabetic Kids for support. It’s not like I have people around me who understand what I’m going through and will say, ‘You know what, don’t worry about it tonight–I’ll take over.’ I get support from Facebook and from our website all the time, and I need that, and I appreciate it very much. I’m grateful for all the interactions and the openness that we have with each other, because it’s so real and it’s so there.”
Jeff says, “We’ve talked to so many people who have little or no support. Type 1 diabetes is a very frightening disease, and it’s hard for someone else to learn enough about it to take care of their grandchild or their friend’s son or daughter for an overnight. You can’t just drop your child off for a week at the relative’s house. We hear from so many people that they feel like they’re on an island, and I think that’s why we get the emails we do, that’s why we see the conversations that we do on the Facebook sites and forums that we have.” The Koloks’ Facebook sites have a total of 6200 members. Natalie says, “Late at night, when I’m taking care of Nicholas or Johanna, I’ll look at the status updates, and I’ll see, ‘I’m up, is anybody else up? I’ll be up for a long time–Anybody want to talk?’ It happens all the time.”
Jeff and Natalie’s latest venture started when they took their yearly night off at the Trapp Family Lodge in Stowe, Vermont, a five-star resort owned by the von Trapp family of Sound of Music fame. Jeff says, “We thought, boy, wouldn’t it be neat to do some kind of a weekend getaway for parents and kids. So we talked to the von Trapps, and the next thing you know, things started to come together. This coming fall, September 9 through 11, we’re doing a Parenting Diabetic Kids family getaway weekend. Barton Center counselors will be on site, teamed up with Trapp Family Lodge staff, and all kinds of things will be going on for the kids, so parents can just go up there and relax. We’ll have six recognized experts in the diabetes community there, but the idea is not to have a series of organized breakout sessions and an itinerary that you have to stick to. It’s more that these folks would be available for one another in a very relaxed atmosphere at a beautiful place.”
For the whole weekend, everything included, the cost is $849 for a family of four. The Koloks have announced the weekend in their newsletter, and interested families can sign up at www.trappfamily.com/parentingdiabetickids. In addition to their website, ParentingDiabeticKids.com, which has created a nurturing network of parents who come together for support, the Koloks have started another website, SlamDiabetes.com, for people who want to take action against diabetes and find a cure.
Some say that type 1 diabetes is harder on the parents than it is on the children. Jeff says, “I don’t buy that for a second. As a parent, I’d rather be the one battling the disease with it inside my body and have my children stressing about me. I think stressing about it has got to be a great deal easier than having it course through your body 24/7.”
Still, parenting kids with diabetes calls upon reserves that most of us don’t even know we have. It’s an unremitting labor of love, and it’s exemplified by Natalie and Jeff Kolok.