Stories of Caleb and living with type 1 diabetes.
Chris Stocker is having guest bloggers on The Life of a Diabetic this week. He asked me if I would be interested in writing about parenting a child with diabetes. Sure! Why not? Thanks for considering me, Chris!
I enjoy Chris’ blog because it is honest and straightforward. He gets to the heart of the issue quickly and directly. If you don’t already follow Chris, check him out. I think you’ll like his candor.
There is a specific complexity to raising a child with diabetes for a parent that does not have diabetes him or herself. Even though much of Caleb’s life is different than mine when I grew up, with the exception of diabetes, I have my own experiences to draw upon to help me care for and guide him. Because I don’t have any former knowledge of diabetes, there is a large element of Caleb’s future that is foreign to me. Parenting is chockful of worries. The uncertainty of what D holds for your child adds to that worry heavily.
So with that introduction, I ask that you visit me over at The Life of a Diabetic to read my thoughts about connecting with adults who live with diabetes. I’m happy to have the opportunity to express my thanks to all those who help me, on the blog of one of those very people.
Day 7 of Diabetes Blog Week.
Dream a little dream – life after a cure.
What do you think life would be like if a cure was discovered and you no longer had diabetes?
I would feel like I wouldn’t have to do anything like check my sugar. I would feel like I was free from diabetes. I would be happy.
I think I would be bored sometimes because of all the things I wouldn’t have to do. Like I would feel like I was forgetting something if I didn’t do anything before I ate.
I think I might feel like I was vibrating where DexCom usually is because I would remember that. My fingers and toes wouldn’t look like they had holes in them.
I would have a celebration with a bunch of meters around a table for decoration and then make a cake with a meter on it that says “100” and under that “Cure for D”. We could also make a piñata in the shape of a pricker and make a big over-sized hand to beat it with. Since the pricker is normally poking the hand, the hand will have a chance to win.
Day 1 – A day in the life of…diabetes.
Day 3 – Your biggest supporter.
Day 4 of Diabetes Blog Week.
To carb or not to carb. Today let’s blog about what we eat. And perhaps what we don’t eat.
In Caleb’s words (sorry, but this is a bit of a ramble):
I don’t eat peanut butter because I’m allergic to it. I don’t eat frogs, rocks, grass, slime or anything like that.
I like apples, cheese and crackers, pretzels, Nutrigrain bars for snacks and sandwiches, yogurt parfaits, peppers and fruit for lunch. I like cereal, muffins, toast, waffles and oatmeal for breakfast. I like pasta, chicken parm (but I don’t like eggplant parm) tacos, lentil soup and chili for dinner and cake, cookies or fruit for dessert. One time Dad made a wrap with sausage, egg and cheese and I liked that. I also like pizza, Chinese food and salad. I like cucumbers, carrots, Swiss cheese, pears, bananas, grapes, strawberries, mangoes, peaches. I like every kind of fruit there is. Ice pops, ice cream and jolly ranchers are good.
I think he would have gone on forever, but at this point, I just said, “Thank you, that’s enough.”
I worry, of course, about the impact that diabetes has on Caleb, both physically and emotionally. I worry about whether he feels restricted when it comes to food. There is nothing that I say “no” to because of diabetes, but there are things that I avoid because of the impact that they have on Caleb’s blood sugar. I am pleased that his response showed no indication of that. The fact that Caleb does not eat frogs or rocks or slime has absolutely nothing to do with their carb count, fat content or impact to his blood sugars – I promise.
Day 1 – A day in the life of…diabetes.
Day 3 – Your biggest supporter.
Tomorrow’s topic – Let’s get moving.
Thanks to my fellow North-Easterner, Karen, for coming up with the idea of Diabetes Blog Week. I’m excited to be undertaking this week of blog posts with so many who have become my friends over the past year or so. I’m guessing my RSS reader will explode. Assuming yours will too, I’m keeping my posts short and sweet.
There’s something extra special about this week’s posts – they will be Caleb’s. This is Caleb… will actually be coming straight from the horse’s mouth.
So here we go.
Day 1 – A day in the life…with diabetes.
How would you describe your days in terms of diabetes?
It’s kindof whacko when you think about it, but I feel normal about it. When I wake up, I just feel like it’s any other day. It doesn’t bother me to check my sugar or do the other things I have to do.
It can sometimes make me busy. I check my blood sugar all the time and I sometimes have to take a break from what I’m doing. Sometimes I feel low and I feel crummy.
How much of your day do you spend thinking about diabetes?
Not much.
What about school?
It’s really busy at school because I have to do a lot of school work and I have keep a routine about my diabetes, like checking with the nurse at 9:30, at lunch-time and before I go home, plus anytime I feel low.
Pod changes?
Changing my Pod can be stressful because it hurts sometimes, but I’m pretty used to it so lots of times it doesn’t hurt too much at all.
Eating?
Why do I have to talk about eating? Everyone eats. I have to bolus myself for whatever carbs I eat and Mom writes them down in a journal for school, but I can still eat whatever I want.
I chose the above picture for this post because of the story it tells. I took it to commemorate Caleb’s first day of baseball. Upon closer examination, I noticed several reminders of diabetes. The tiger striped medical ID bracelet, the SPIbelt that holds his DexCom receiver, the open cabinet with his diabetes supplies peeking out, and even the stack of newspapers with the recent article of Caleb and his diabetes. Just another day.
Day 2’s topic will be: “Making the low go”. See you tomorrow!
First things first: this approach works for Caleb. It may or may not work for you. I am by no means suggesting that anyone should apply the following theories to their diabetes care. I am only explaining what I do for Caleb.
For weeks, Caleb’s most predictable BG of the day was pre-lunch. Without exception it had been in range. It was sensor change day and we were operating in the blind start-up period. No worries though because this time of day hadn’t posed an issue in quite a while.
It’s approaching lunch time so let’s do a finger stick. 289.
289?
Okay. Oh well. It happens. There was more fiber in his breakfast than usual and he was a little low at the postprandial check. Ah yes, hindsight is 20/20. Moving on. Now back to this 298 and we are getting hungry for lunch.
Super bolus.
John Walsh explains it as follows: “A Super Bolus is created when some of the basal insulin delivery is stopped or partially reduced, and delivered instead as additional bolus insulin on top of a normal carb or correction bolus.”
The intent is to get glucose levels back in range quickly without inducing hypoglycemia. Here is how Caleb’s super bolus went that day:
Correction: 1.50 units, plus
Meal bolus for 50 carbs: 2.00 units, plus
Basal for the next two hours: 0.70 units, equals
Total units delivered: 4.20 units.
Lastly (this is critical) turn basal to “off” for two hours.
The change in the timing of the basal insulin makes all the difference. Front-loading it and delivering it with the meal and correction bolus makes it act faster and all at once, thus bringing glucose levels back in range sooner. If left as basal, the end result will be the same, but it will take more time and hyperglycemia will last longer. The same amount of insulin is delivered when using a super bolus, it is only the timing that is different.
Back to life, start preparing lunch.
1/2 hour after superbolus: 169
Perfect. Coming down fast and lunch is ready, let’s eat. 50 carbs consumed.
1 hour after superbolus (1/2 hour after eating 50 carbs): 109
Excellent. The first time I tried this, I panicked a little at this point. A 109 an hour after a bolus that large is cause for worry. But his basal had been zero for an hour and he still has food in his system. Plus his basal will be zero for another hour.
DexCom had been calibrated with that lovely 289, which we confirmed after washing hands with a 288. DexCom showed him cruising between 85 and 100 over the next hour.
2 hours after super bolus: 89. Wonderful.
I know a bolus of that size is still hanging around in Caleb’s system beyond the 2 hour insulin duration that we use. However Caleb’s basal insulin has just now resumed. He hasn’t received any basal or other delivery of insulin for the last two hours. Any tail of insulin duration from that super bolus is required for his basal needs.
And it worked. He continued to hover with a nice flat arrow through the afternoon until dinnertime when a finger stick confirmed a BG of 98.
I invite you to read more of what John Walsh has to say about using a super bolus. He suggests its use for high glycemic foods or large intakes of food in order to avoid blood glucose spikes. I haven’t tried in those situations yet, but I plan to. He also speaks of pumps giving us the option to deliver a super bolus automatically. The thought of it gives me chills.
In what ways have you used the super bolus?
I’m sitting at the kitchen table after dinner with Caleb beside me finishing his homework. While he’s working, I scan the computer and come across a video about a young boy living with diabetes. He is younger than Caleb and there are pictures of lancets and needles and of this boy as a baby and a toddler, smiling and enjoying life and being cute, and clearly living with diabetes.
I realize that Caleb is crying.
I look at him and he says, “I’m not crying about my homework.” I didn’t realize he was looking over my shoulder. “I’m sad because that boy has diabetes and he’s just a kid.”
“He’s just a kid”?
But Caleb himself is just a kid.
I am not exaggerating when I say that Caleb does not complain about anything he has to do because he lives with diabetes. There may be the occasional hem when we need to change a Pod, or a haw, when I ask him to check his sugar. But these hems and haws are no different than his reactions to having to make his bed or put away his laundry.
Even when asked what he thinks about living with diabetes, he is relatively indifferent. It’s typically a “good”, “whatever”, “it doesn’t matter” response. He’s got bigger things to worry about.
To see and hear him get upset at seeing a young child going through everything he goes through, things that never seem to phase him when he does them, left me speechless.
I took him on my lap and hugged him. I had many thoughts and emotions running through me, but no words. We both had tears. That seemed to say it all.
As we began our CGM adventure with much trepidation, we were embraced, truly embraced, by our friends Bill and Suzanne.
I think the first time I “met” Bill was when he commented on Caleb’s low video and dubbed him a “Diabetic Ninja“. Shortly thereafter he named Caleb “Diabetic of the Day” in one of his own videos. Bill was one of the first people who found us through Caleb’s face on YouTube. I remember how Caleb smiled when he saw that he was in Bill’s video. As I’m sure was intended, it made him happy.
We have kept in touch with Bill and he and Caleb even have a friendly rivalry over their favorite baseball teams – Bill’s Red Sox v. Caleb’s Yankees.
Through Bill, we met Suzanne. Suzanne and I tweeted a great deal about DexCom. She answered my unending questions and understood my apprehensions about putting Caleb through another skin piercing process. She knew of Caleb and Bill’s relationship and asked if a video from Bill might help us prepare for our training. Of course the answer was, “yes”.
So Bill and Caleb made a deal to make videos for each other. Here’s Bill’s:
Suzanne also joined in the video encouragement:
To which Caleb responded:
Bill and Suzanne helped us so much through our CGM transition. They went out of their way to make these videos for Caleb and sent us many heartfelt emails and tweets. Thank you my happy diabetic friends!
“It’s all about your attitude!” Yours are fantastic, influential and even contagious!!
We first learned of Nick at our OmniPod training in April 2007. Caleb was diagnosed only months earlier and one of the things that provided me great comfort was learning about people living full, enriching lives with diabetes. I heard of everyday people – someone’s friend’s daughter or other patients of Caleb’s endo. There weren’t too many public figures living with diabetes that I found relatable. So when I heard of a young man who was diagnosed shortly before Caleb, using the same pump as Caleb, and was continuing with his career in the public eye, I was intrigued.
Since then, Caleb has become a true Nick fan. He owns his music, has been to his concerts, and has various books, magazines and paraphernalia featuring Nick and his brothers. Caleb enjoys singing, plays the piano, is learning the guitar and recently acquired a set of drums which he practices daily – sound familiar?
When I saw the tweet from Amy about Bayer’s Express Your Simple Win contest last spring, Caleb and I got to work. In October he found out he was one of three grand prize winners and would be meeting Nick in Orlando.
Caleb, his brother Colin and I had the privilege of meeting Kevin, Joe and Nick at their concert in Bethel Woods in August 2008. It was a fantastic experience. We waited two hours to meet them for about 2 minutes. As soon as Nick heard that Caleb also has diabetes, his focus was 100% on Caleb. There were high fives, fist bumps, some words exchanged, a picture taken and huge smiles. Caleb’s reaction was priceless. He skipped out of there declaring, “that was totally worth the wait!!” I saw firsthand the real, tangible influence that Nick has. Two minutes was a thrill; I couldn’t imagine what an intimate meeting would be like.
Here’s how it went:
Upon checking in at the hotel, we heard, “Are you here for the Simple Wins contest? Is that Caleb?” It was Bradley, one of the other winners, and his mom. Caleb was so excited to meet them. That night, Caleb and I stepped out on the balcony of our room and heard, “Oh my goodness – is that Caleb? We’ve been looking for you all day!” It was Lauren, the other winner, with her mom and sister on the balcony next to us. Another great thrill. Meeting Bradley and Lauren was a prize in and of itself to Caleb. They were able to talk amongst themselves, whether about baseball, singing, helping the community, or about diabetes, and feel connected. There was an instant bond.
On the day of the meet, the winners were brought to a grand conference room. Inside they chatted, took pictures and waited. First came Big Rob. He greeted everyone (or perhaps scoped out the room for Nick’s safety) and took pictures. Caleb was on top on the world. Rob left and while everyone talked about what fun that was, Nick nonchalantly entered.
The first thing I remember him saying was to Caleb: “I know that YOU are a Yankees fan. You’re a good man.” I didn’t think it could get better than that moment. The four of them spoke of their interests, their stay in Orlando, the music they liked and they talked about diabetes too. He asked Caleb if he ever went low while he was playing baseball. It was nice. It was comfortable. It was exciting.
They took some pictures, Nick autographed Caleb’s Burning Up book on the page where Nick talks about his diabetes (Caleb proudly declaring, “I read the whole thing”). Then they sat down and chatted some more. Caleb talked about the concerts he attended. Nick recalled being under the weather at one of them. They talked more about the Yankees and the World Series. Nick described how he watched the series on a laptop in Italy at six in the morning. Then “Bounce” became a topic of conversation and Caleb was invited to perform his version of Bog Rob’s “chicken wing” and “ham and cheese”. Big Rob came back in to watch. It was a reserved performance on Caleb’s part, but still great to see it bring smiles to everyone’s faces.
I spoke with Nick’s father, another kind and gracious man. Upon thanking him, he responded, “we understand”. It’s true. They know. He explained that Nick does this because when he was diagnosed, he wanted to know of the athletes and musicians and other public figures who were living with diabetes. The list was short. Nick understands the comfort it brings, and his ability to provide it. So he does.
I spoke to Nick. I took the chance to explain why what he does is important to us. Caleb doesn’t wonder if diabetes will limit him. He has virtually always had Nick as a point of reference to know that it won’t. I don’t think Caleb has yet to even consider if diabetes could be an obstacle to anything he wants to do. I credit Nick a great deal for giving that to him and I told him so.
As things were wrapping up, Caleb mentioned to Nick that they used the same insulin pump. They took turns pulling up their shirts showing each other their Pods.
I have never seen Caleb smile so big or for so long. Ever.
Thank you Nick. Thank you Bayer. You have created meaningful, lifelong memories. The day itself was a thrill, but what I hope is that at least one day in Caleb’s future, when diabetes is proving difficult, he will think back to this meeting in Orlando. He will remember a young man that was not all that different from himself: a young gentleman, with a curl to his hair, a love of music, a charming smile and the same daily challenges to manage his blood sugar.
I hope he will think of Nick and remember that diabetes didn’t slow him down and it doesn’t have to slow Caleb down either.
There was some news this week in the diabetes community and there have been mixed reactions. Some are excited, hopeful and encouraged. Others are frustrated, disheartened and even resentful.
I am a little of both. I am cautiously optimistic. That’s how I am in general, and I am the same as it relates developments in diabetes research and potential advances.
A friend blogged about her sadness regarding the outlook for a cure for diabetes after hearing the reactions from others to this week’s news. The fact that a time frame of five to ten years for a cure has been given to people diagnosed with diabetes for tens of years was a little more than discouraging. I understand and relate to this.
This is my reply to Rachel:
I don’t think people are made much more skeptical than I am. I have this book which dedicates a page to every day of the year and describes what people are like based upon the day of the year they were born. My day is called “The day of the hard look”. It defines me perfectly – anyone who knows me is fascinated at the eeriness of the accuracy of this book as it relates to me.
That being said, I have hope.
I don’t really understand why people (doctors) need to define a time frame to this. I suppose it’s because it’s something we all want to hear. Giving it definition when it is IMPOSSIBLE to define is what makes this situation that we are in. Once the measurement is defined, we have something to look at and say, “well that didn’t work – they were wrong – they lied – it WON’T happen.”
But I haven’t given up. The time frame may be wrong, but the theory, I believe, is right.
There ARE resources – many resources – tasked to tackle this. I don’t have the slightest clue when their efforts will be realized, but I truly believe they will be. It may be 100 years from now, it may be 10. But I believe this puzzle will be solved.
None of us are sitting around waiting for a cure. We are all doing everything we can to keep ourselves or our kids healthy now.
I think of the people who lived with diabetes in the early 1900s who starved themselves to live another day, every day, in hope of a cure. The cure came for many of them. It was insulin. It saved their lives.
Now I am NOT saying that insulin is a cure, because I know darn well that it is not. But for these people it might as well have been. From their perspective it was.
I hate what diabetes does and makes us all do as much as anyone. But, I am so very, very thankful (ok, I’m choking up now) that Caleb has the benefit of the advancements that exist today. Even on the worst of days, when I don’t think I can take another second of the crap that diabetes presents us, I remind myself it could be so much worse.
I don’t know when there will be a cure, but I am still hopeful.
More than that, I am hopeful that along the way there will be many more advancements that will make living with diabetes easier and safer. If there are as many in the next 10 years as there were in the last 10 years, living with diabetes in 2020, when Caleb is just 17, will be a very different thing than it is today.
I have read a lot of the responses to Wednesday’s news and appreciate the varying perspectives that have been shared. Although different, and at times at opposite ends of the spectrum, I am able to relate to most of them.
I am “the day of the hard look”. No one who knows me would argue this. But I am still optimistic. Cautiously optimistic, but optimistic nevertheless.
This is Caleb... 