Riding On Insulin | Wachusett Mountain with Sean Busby

Sean and Caleb at the ROI banquet – March 2012

We first met Sean and his wife, Mollie, last year at Friends for Life. They were there with Insulet. It’s always exciting to meet a fellow OmniPod user, and Sean and Mollie were so gracious and friendly.

Just by chance earlier this year, I saw an article online about Riding On Insulin and how they would be conducting a ski and snowboard camp in Massachusetts – not too far from where we are in Connecticut.

No one in this house skis or snowboards. I’ve been on skis. In fact in high school I went down the slopes at Lake Placid – rather comical considering I had no training whatsoever – and survived. In college I remember this “new thing” where they took the board part of a skateboard and did something that resembled skiing with it. How old does that make me sound?

Thankfully, prior experience is not necessary for Riding On Insulin Camps. The only thing that is necessary is that you or a sibling have type 1 diabetes.

So without much thinking at all, I signed up Colin and Caleb (Lila unfortunately didn’t make the age cutoff of seven). We had the choice of skiing or snowboarding. We opted for snowboarding because well, that’s what Sean does!

The website has a lot of great information including FAQs that were on my mind. The camp is a day long and the night before there is an orientation that was super helpful. They explained that bgs would be checked often. A medical professional would be on hand. Home-base was set up in an easily accessible place inside. I definitely felt comfortable that things would go well. I can’t say I wasn’t a little nervous, but really not much. We had been to Caleb’s endo just a couple weeks prior and we talked about his dosing plan for the day. Caleb’s doctor was familiar with the camp and told me something like “they do a really good job”. So really, the worries were little.

Caleb and Colin went out and learned the fundamentals of snowboarding from Sean himself. I was able to watch.  I got to see them go up. Come down. Go up again. Come down again. At the beginning there was a lot of falling. I was impressed with how comfortable they all were and how quickly they learned.

Break for lunch

They broke for lunch – carb info labeled everywhere – and went back out to the “big” slope. Boo hiss, Caleb had a low and got an escort down the hill on a snowmobile. He recovered. Colin stumbled and bent his finger back – hard. But he got up and made his way down the hill with little complaint. On his own he sought ice. His hand swelled up, but he insisted on going back up and down and up and down that hill to the very end. (We learned the next day he broke his finger.)

Spirits were high, bgs were checked, adjustments made as necessary and slopes were conquered.

It was a great day and topped off with a wonderful, casual banquet. Sean spoke to the crowd about his life as a snowboarder and about his diagnosis story. We’ve all heard lots of diagnosis stories and not many of them are a simple “I happened to notice my thirst and urine frequency increased and so I sought medical advice and was diagnosed with diabetes.” But good golly, Sean’s story is truly unbelievable. Up against several instances of misdiagnosis, Sean somehow managed to survive, and come out on the other side ready to meet penguins in Antarctica.

He explained that he started Riding On Insulin because he was inspired by the stories of kids who are living with diabetes and he wants to give back.

I’ve said before, the people we meet with type 1 diabetes are among the nicest people on earth. Sean and Mollie fit that bill. It is so obvious their intentions are to empower kids with diabetes. It is so clear that they understand how powerful it is to show these kids that they can do great things like snowboarding. They show kids by doing, by educating, by sincerely caring.

Colin ended up in a cast for four weeks with a broken finger!

Opportunities to meet inspiring people like Sean and see firsthand the amazing things he is capable of are THE reason that we are able to cope and manage diabetes in our lives and keep it in its proper place. These experiences are the epitome of empowerment. We are so fortunate to have been able to take part in them. “Thanks”, will never be enough.

We fully support Sean and Mollie and all that Riding On Insulin does. We intend to go back to Riding On Insulin – East Coast next year and Lila will be old enough to join Colin and Caleb!!

An added bonus for me, I was able to meet a special mom whose D-Kid was a counselor for ROI for the day. He was in charge of a group of skiers, so Colin and Caleb didn’t get to spend time with him – perhaps next year!

Please visit the Riding On Insulin website to learn how you can get involved, either by attending, volunteering or sponsoring the great work they do.

Note: We attended ROI this past March. Due to insane end-of-school-year activities I found myself unable to make this post more timely, but that is no implication of how strongly I feel about the amazing things that Sean and Mollie are doing.

Lilly Diabetes’ Once Upon A Time Contest Winners! #ffl12

20120703-103822.jpgDo you remember Lilly Diabetes’ Once Upon A Time Contest announced at last year’s Friends for Life Conference? I am pleased to announce that the Schuhmacher family won and is headed to this year’s Friends for Life Conference!

Congratulations to Meri, Ryan and boys. I know you’ll have a blast. Be sure to visit Gary Scheiner’s sessions and have a great time at the banquet! I wish we were headed back this year so we could meet in person!

Winners of Lilly Diabetes Once Upon a Time Contest Announced

You Can Do This Anniversary #YouCanDoThis

It all began a year ago. For Caleb it started with this:

But advanced to a serious discussion:

Which resulted in great success:

Thank you again, Kim, for providing the opportunity for Caleb to appreciate all the things he can indeed do!

You can hear more from Caleb about how the You Can Do This Project helped him, here:

Happy Anniversary!!

Lilly Diabetes and Disney | Tween Book Series and More

Do you remember Coco? She and her book series were introduced by Lilly Diabetes and Disney at Friends for Life in Orlando last year. Coco has since been received warmly by many and received wonderful reviews.

Yesterday, at the Lilly Diabetes Summit held at their corporate center in Indianapolis, stories about the impact that Coco has had were shared. A young, newly diagnosed girl was able to comfort her worried parents after reading the book and tell them she was going to be okay. Grandparents living with diabetes have used the book to explain what diabetes is to their grandkids. The overwhelming opinion of those at the meeting was that Coco’s story is a wonderful way for kids to feel better about living with diabetes and to help others understand what it means. This picture book really stands out as THE book to get the message across to kids. Not just newly diagnosed kids, but all kids.

In addition to the Coco book, the Lilly Diabetes/Disney collaboration produced the first two books of their tween series. One is titled Power Forward, featuring newly diagnosed Justin, and the other is Up for the Challenge, featuring newly diagnosed Allie. Both have a sports focus which is clear from the picture and the inclusion of “ESPN” on the cover.

Both books are about middle schoolers who are very skilled athletically and play key roles on their sports teams. The main characters are new to diabetes and their biggest difficulty seems to be telling their friends about it. Other issues come up, but the central theme is whether and when they will share the news of their diagnoses.

These books are great for newly diagnosed kids. I don’t know of anything else out there like this available for kids of this age. I think the characters are relatable, the issues are authentic and the message of what it means to be living with diabetes are, for the most part, properly portrayed.

The struggles featured for these characters were more emotional as opposed to physical. For tweens that may indeed be the priority at first. The books are not intended to be a fully inclusive depiction of every issue a newly diagnosed person is presented, nor are they meant to be medical advice. There were times that both characters’ blood sugars went low due to activity – managing sports with diabetes is a focus for both books and hypoglycemia is a real issue we see often when Caleb is active. I found myself anticipating an out-of-range blood sugar at one of the many times the characters responsibly checked their bg. It might be better to say I was actually rooting for an out-of-range blood sugar to see how the story would address it because so many other things were being portrayed well. Those opportunities were few. I worry that a newly diagnosed person would read this and think he/she was doing something wrong if their numbers weren’t as in range as these characters’.

Caleb read Power Forward and Lila, who is 6 and does not have diabetes, read Up for the Challenge. They both enjoyed the books. The stories kept their interest. Lila has been inspired to become a soccer player. Neither of them are the target audience so the impact would be better measured from someone who reads them just after being diagnosed. Nevertheless, the stories do stand alone as just good stories. Lila sought out Up for the Challenge to read a second time just because she liked the theme of friendship.

There was clearly purpose in the writing of these books. At the end of each there are questions to think about, like – did you feel the same way about having to wear a medical alert bracelet? Or – when you went back to school did you feel differently? I think that is a really great tool for parent and tween to start discussions to get feelings out there. I think that’s very valuable right after diagnosis when it can be hard to focus in on all the emotions you are experiencing.

I was happy to hear that these books are not the end – we were presented another tween book, a family cookbook and the promise of another sports oriented book soon on the way. What I saw and heard from the Lilly Diabetes people both last year and this year was a desire to understand what they could do to make things better for people with diabetes on the emotional side. Creating these books, when there is nothing else out there like them, in the authentic way that they have, I think is a great way to do it. I hope they will continue with books focused on some of the other issues our kids deal with through the varied stages of living with diabetes.

I know what you’re going to ask – “Where do I get these books, Lorraine?” Distribution is through endocrinologists’ office. Lilly Diabetes’ hope is that this will provide a link from real-life issues to real-life medical solutions with the proper medical personnel. Please ask your child’s doctor, and if they don’t have them, please have them ask their sales representative.

Lilly Diabetes invited me to attend an event at their corporate center and paid for my airfare, travel, hotel and meals while I was at the event. I was not asked to write about the event and the opinions expressed herein are my own.

Cha Cha-ing in the Pool | Just for fun #ffl11

There were lots of opportunity to dance at Friends for Life. The kids each had a session with DJ Miles where they learned the latest dance moves and really had a ton of fun. We danced at the banquet. We danced poolside. Colin went to a Tween dance social on his own and won a prize for extra special abilities. We danced and danced and danced.

Inspired by the adult crew, my trio has been incorporating their new dance moves not only on ground but in the water as well. So in response to Sara’s video (which I had no idea she was taping!) here’s a little smooth cha cha-ing…

Our new friend (for life), Mason | #ffl11

The Friends for Life conference was a definite success for us. This household gives it five thumbs up. Of my three children, two think it was equally fun as going to the theme parks. One thinks it was even better (and yes, you can probably guess which one that is).

Dave is behind the camera but there are plenty of versions with him in front of it.

One of the highlights of the week was D-Coaster Day (thank you Martin for coordinating!) It was so awesome to meet so many more tweet-peeps in person. Have I mentioned yet how tall Scott is and that he is indeed as incredibly good-looking as he claims? I have a hunch that with my sunglasses and pig-tails, I was a little unrecognizable at first and they just thought I was some strange lunatic running up and hugging them.

Now backing up a minute to the trip to the park: the bus was PACKED! Dave and I got split up amongst the many people squeezed on board. I chatted with the person next to me oblivious to those that boarded after us, and a little distracted by the Blunt Lancet t-shirts I saw on some of the people who were left at the bus stop because it had filled up (see shirts in above picture).

Dave tweets to me:

We had already noticed each other and were chatting it up – as much as anyone can chat it up when you have so many people packed between you. Michelle told me that Mason and husband, Matt, were on board too, though I couldn’t see them from where I sat.

We disembarked and got separated but were reunited at the Walt Disney statue with the other D-Coaster peeps. This is where Caleb and Mason met.

Caleb and Mason meet

Why I did not have the forethought to capture this moment on film in any way, I’ll never know. It was priceless. They shook hands and then showed each other their Pods and flashed each other their DexCom-filled SpiBelts as if it was part of a well thought out fraternity greeting. It was more like they were seeing each other again after several months than meeting for the first time. I could see how comfortable Caleb was when he is usually more self-conscious. It was heart warming.

Mason is full of life and does not seem the slightest bit self-conscious about anything. I dare anyone to not smile in this young man’s presence. His connection with all three of my kids was instant – the definition of fast friends.

Fast Friends

When the conference officially started and the kids were broken into groups, Mason and Lila landed in the same set of eight. I soon started to joke that they would one day be attending prom together. I couldn’t help think of the real life story of friends that had been made years earlier at FFL who did in fact become prom dates.

The days that followed were so jam-packed and fast-paced, that I found it hard to carve out time just to hang out with folks. Luckily our paths with the Golladays crossed several more times. I’m so glad we had the time that we did. As has been stated countless times before, the DOC people we meet online are as awesome if not more so in person. The Golladays are no exception.

We didn’t get a chance to officially say good-bye due to a very early departure flight. We’re hoping for a Skype session soon with our new IRL friends for life.

Meeting Team Type 1 Co-Founders | #ffl11

My trio with Team Type 1 Co-Founders Joe Eldridge and Phil Southerland

Phil Southerland was THE first type 1 athlete that I encountered after Caleb’s diagnosis. It started with a video, then a  magazine article  and then I scoured the internet looking for any information I could find on him.

I have always been and continue to be in awe of athletes with diabetes. I have the greatest admiration and respect for their commitment, discipline and achievement. What they do is the equivalent of magic to me.

The week before FFL, Colin completed a week of triathlete camp with Cliff Scherb. It was hard to know which one of the five of us was most excited to meet the co-founders of Team Type 1. It was definitely at the top of all our lists.

On the first day of the conference, we attended a Team Type 1 focus group and got to listen to three team members, including Joe Eldridge, talk about their experiences. I’ve read his story so many times – about the wager between him and Phil of whomever had the higher blood sugar at the end of a race would have to buy the other dinner, and how Joe ended up buying a lot of burritos. Hearing how that motivated him to keep tighter control of his blood sugars live and in person was just as inspiring as the first time I read it.

Then we got to speak to them up close and personal. It was like talking with friends. They are such real and genuine young men. So kind, so sincere. I had brought my copy of Not Dead Yet on the trip thinking I might have some spare time to read. Well that didn’t happen, but I’m so glad I brought it because Phil so graciously signed it for Caleb. A definite highlight for us all.

I was happy to have the chance to thank them for the impact they have had on us.  It is because of them – Phil and Joe, the first type 1 athletes that I came across – that I have never wondered about Caleb’s ability to achieve athletically. Their impact is so strong, that I’ve almost taken it for granted. It’s completely natural to me to expect that Caleb can do any sport he wants to. They, and so many after them, have shown all of us that there are no limits to what someone can attain, including someone living with type 1 diabetes. I have always known this for a fact.

Because of them.

More importantly, Caleb knows this. He never, ever considers whether diabetes will impact his ability to play or complete. He knows that he can do whatever he chooses. He knows he needs to care for his diabetes which means he needs to do things his teammates do not, but having it hold him back from doing what he enjoys is never something that enters his mind.

These are the only publications that rest on the cocktail table of my living room.

Team Type 1 has been and will always be a part of our lives. We’ve met so many great role models. They are examples for Caleb, as a type 1 diabetic, and Colin, as an aspiring triathlete. Thank you Phil and Joe and Cliff and Bradford for reaching out and sharing yourselves so openly with us.

Not only are these guys all amazing athletes, they are truly amazing people. I am so very honored and privileged to have had the chance to meet them. We all are.

If you haven’t seen the video, One Shot, the documentary of Phil and Joe and the team and their quest to get the first type 1 diabetic into the Tour de France, I strongly encourage you to.

When they are in the tour, we will definitely be watching and rooting for Team Type 1.

Colin's autographed poster that we managed to get home in tact.

Chance to win a trip to #FFL12

Today Lilly Diabetes, Disney Online and Disney Publishing are announcing all the details of their current collaboration. In addition to their book series and their online initiative, they, along with Denise Jonas, are announcing a chance to win a trip to Friends for Life 2012 through their Once Upon a Time Contest .

Read all the details their news release here.

To enter the Once Upon a Time Contest click here.

Caleb, a part of the CURE | #ffl11

Caleb was very excited to find his face in the CURE at the Diabetes Research Institute booth during the Friends for Life Conference. When someone found their picture in the banner, they were given a sticker claiming those bragging rights. Caleb wore his with great pride. He is in the lower right of the U – immediately to the right of the blue ribbon in the picture above.

Back to real life this week, Caleb chose to wear his Friends for Life shirt and was saddened to realize that the sticker got lost in the wash. Sorry, buddy. I was on a mission to turn the laundry around quickly when we got home.

Lila apparently heard Caleb’s disappointment and went to work without any of us knowing. Shortly thereafter, she presented Caleb with a replacement which he wore just as proudly.

You can see everyone who is a part of the CURE at the DRI site here.

Coco the Monkey – Sticking to a Smart Plan | #ffl11

Coco - take a close look at her left wrist

During the 2011 Friends for Life conference, Lilly Diabetes and Disney announced a new partnership. At the center is a new Disney character: a young monkey named Coco who is living with diabetes and will be featured in a children’s book series.

The first book is about Coco attending Goofy’s birthday party. At first, Goofy thinks that Coco can’t come because of her diabetes. But Coco and her mom explain that she can do everything the other guests can as long as she plans for it. Coco is a happy, active and well-adjusted young monkey who is excited to attend the party and eager to talk about her diabetes.

I’ve said many times that when it comes to food, healthy choices and moderation are good for anyone, not just those living with diabetes. I am thrilled to see this exact message delivered in this story.

Coco shows Goofy that she can go to the party, play games, win contests, and eat cake and ice ream.  This is an important message that we’ve seen delivered in other stories. Lilly Diabetes and Disney take the story a progressive step further.

Coco and other guests partake in but don’t overdo it when it comes to treats. Goofy however, because it’s his birthday, chooses to eat anything and everything he can. As a result of these choices, Coco and others are still going strong and playing and having fun at the end of the party. Goofy, on the other hand, doesn’t feel well and his friends have to take him home in the wagon he brought for Coco because he was worried she would need it because of her diabetes.

I think that is a fantastic message for kids today – all kids, diabetes or not. Make a plan that allows you to have fun while not going overboard, and stick to it.

This and other books planned in the series will be available through doctors’ offices.

Caleb read and enjoyed this book, but Caleb is 8 and has been living with diabetes for more than 4 years. Although I am pleased to have these messages reinforced with Caleb, his current struggles are a little different.

It seemed like Lilly and Disney were 10 steps ahead of me.  As I was flipping through the book thinking it would be so wonderful if they could do something in a novel form for kids a little bit older, they said exactly that – a series of novels for tweens is in the works and the first couple will be focused on sports.  This happens to be an area of great interest for Caleb right now.

Based upon the caliber of the production of Coco and Goofy’s Goofy Day, I am very excited about the novel series. As Tom Karlya, aka Diabetes Dad, put it, the impact of seeing a Disney character living with diabetes next to Mickey and Goofy, some of the most widely recognized cartoon characters in the world, is certain to be powerful.

In speaking with people from both Lilly Diabetes and Disney Publishing Worldwide, it was clear that they really want to get this right. So far, I think they are doing just that.

In addition to the books, Disney Interactive Media Group has also launched a section on family.com specific to diabetes. You can take a closer look at www.family.com/type1.

Lastly, they distributed a nifty Birnbaum pocket guide for Walt Disney World. It’s a great little summary of what you need to know for a visit to any of the WDW parks. At the end there are four tear-out pages, one for each park, with Type 1 Diabetes tips. I’m definitely keeping this handy for our next trip.

Disclosure: During the 2011 Friends for Life Conference, I attended an informative event about and received an educational takeaway from the Lilly/Disney collaboration. I was not compensated in any way nor was I asked to write about this event. The above opinions are expressly my own. 

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