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.

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DCamp Part 6 | The People

I’ve had difficulty organizing my thoughts for this post, the last in my DCamp series. I don’t think I can properly articulate the power the people of DCamp have. They are nothing short of magical.

All the people who work at the Clara Barton Center and Camp Joslin are special. They LOVE being there and it shows. Many of them attended DCamp as children. Some don’t live with diabetes themselves. But all, adults and teens alike, are of a very high caliber – they know how to have fun, but they also know when to be serious. They are an impressive crew.

I’ve chosen to focus on one counselor, however. I’ll call him Mr. D (only because his name starts with D).

I didn’t notice him at first. He wasn’t a counselor in our cabin and I don’t think we ever came in direct contact with him, but he’s one of the first people that pop into my mind when I think of DCamp.

He is vivacious.

He is passionate.

He is responsible.

He is caring.

In him, I see Caleb. I think that’s why he made such an impression on me. He wore a bandana on his head with a bow tied on the top. He was often the loudest singer. I have memories of him running around the dining hall during meals, inspiring smiles and excitement.

This is the Caleb that I know. He doesn’t show this side of himself to those outside his family. But it’s the boy that lives in my home. The vivacious, life of the party, at times pushing-the-envelope-inappropriate Caleb. You can’t help but laugh at him and with him (even when you know you shouldn’t).

It made me teary, and oddly proud to think that Caleb could some day be doing great things like these counselors do.

But there’s more to it than that.

I won’t forget the days-old tattoo that read “Camp Joslin Forever” on Mr. D’s arm. Remember? I said he was passionate.

And I will definitely not forget the story that Mr. D shared with us. One night, some of the counselors living with diabetes held a session for parents only. I think they knew very well the impact they would have on us. They knew we would soak up their words like sponges. They made themselves available selflessly, for our, and thereby our children’s, benefit.

Mr. D spoke about always being the person primarily responsible for his diabetes. I think he said he was diagnosed in his pre-teens. His parents had left his care almost entirely up to him. He doesn’t fault them for that, nor did he present it in any way other than they thought they were doing what was best for him.

It’s a difficult balance – to allow your child age appropriate responsibility without giving them too much.

Mr. D explained that although he was in charge of his diabetes, he wasn’t taking care of it. He was letting himself hover in the 300s without concern. His parents didn’t know.

Then he told us about a serious seizure he had at a friend’s house during a sleepover. He described it as his wake-up call. After that, with the help and guidance of his friends at Camp Joslin, he started managing his diabetes well. He spoke about how much better he felt. That he didn’t even realize he had been feeling badly before because he didn’t know what it felt like to feel good. He proudly announced the A1C results he has maintained since that pivotal event. We were proud right along with him.

He wished that his parents had been more involved.

On this point the panel was unanimous:

They want to be in charge of their diabetes, but they don’t want to be alone. They want to know their parents care, but they don’t want to be judged or lectured. They want their diabetes to be theirs, but they want input and gentle guidance when they need it.

I think they called it “supervised autonomy”. Let diabetes be theirs, but don’t leave them alone to manage it all by themselves.

It’s hard to explain and possibly harder to execute.

They spoke about having weekly or daily meetings to review things. Parents and teen/young adult collaborating; providing time together to allow for discussion and troubleshooting.

Without judgment or consequences.

I had heard this before. My friend, Melinda, shared a similar story with me. This is how she worked things with her son, Michael. Melinda and Michael are an inspiration and I think of their example often. In fact, Melinda is the reason we went to family camp in the first place. Her high praise made it a “must do” experience.

I am so thankful to the people who make DCamp what it is. The facilities, activities and songs are great, but at the end of the day it’s the people that matter. If a permanent 6” by 8” tattoo on a young man’s upper arm doesn’t portray the impact that DCamp has on people living with diabetes, what does?

You can read the rest of my DCamp series posts here.

DCamp Part 5 | The Highlight – Video

Spider Monkey Colin

The zip line.

Colin and I both did it. Colin went first. In true spider monkey fashion, he climbed that tree lickety split. Then with a huge smile on his face and without hesitation he zipped.

I followed. All I could think as I climbed that tree was that if Colin could do this, then I had to do it. I couldn’t imagine how Colin did it though. The staples in the tree were so far apart that I, with my 33 inch inseam legs, genuinely struggled. It was also a heck of a lot more exhausting than I expected. Colin made it look easy. I found it a challenge. Not a terrible challenge, but compared to what I saw Colin do, I was surprised I wasn’t able to fly up the tree similarly.

We came back later in the day with Caleb, but because of weather (I think that’s the reason) they changed it to walking across a wire from tree to tree. Caleb was a little disappointed and maybe even a little unsettled at the last-minute switcheroo, but he was still willing.

I should mention that this event is typically reserved for kids older than Colin, but they make an exception for family camp.

After doing it myself, I was worried for Caleb. His legs are even shorter than Colin’s and I didn’t know how he was going to handle this. I worried that he would get frustrated and give up. I wouldn’t blame him either. He has never done anything even remotely close to this before.

Even when given the chance to quit early, and even after saying he was done, he kept going. He did the whole thing. This was SO much harder than the zip line. All you needed to do for that was shimmy your bum off the board after you climbed to the platform. Once you’re up there, it’s the simplest way down, so it’s really pretty easy. What Caleb did took much more determination and perseverance.

There are many things that my children do that make me proud. This one will forever hold a special place in my heart. I know how hard it was and it would have been so easy for Caleb to say it was just too much and to back out at any point. But he didn’t. It’s not only to his credit, but also the supportive, patient camp counselors and all the other campers rooting him on.

Hands down, this was the highlight of the trip for me. I think it’s pretty high up there for Caleb too.

Related posts:

DCamp Part 1 | The Trip That Almost Wasn’t

DCamp Part 2 | Opening Day of Family Camp

DCamp Part 3 | Diabetes Camp Family Style

DCamp Part 4 | Photo Montage

Up next, the final DCamp installment – The People that Make DCamp What It Is

DCamp Part 4 | Photo Montage – The Barton Center

 

Post banana-sling in the Banana Olympics (paramedics to heal the banana wounds)
Prepping for special Banana Olympics version of Gah-Gah
Spontaneous after hours dance in the dining hall
Prepping for the parent pageant - Dave in a dress!
Much more manly - crossing over easily on the first try (me - not so much)
Taking a very rare rest
Inside the boys' dining hall - Camp Joslin
More archery
Making fortune tellers - my kids can do this for hours!
Working on fortune tellers at Rainbow Ridge
Arts and crafts
Holding hands with new friend
No hands lunch
Pickle!
So, so tired - dressed up for the dance, but didn't really make it for long
Walking to the dining hall after BGMs and insulins ("99" was Caleb's number choice and is a #bgnow reference)
Braiding hair waiting for the dining hall bell to ring
Gathering for last day ceremonies
Saying good-byes
Teaser for the Highlight video coming next week...

Related posts:

DCamp Part 1 | The Trip That Almost Wasn’t

DCamp Part 2 | Opening Day of Family Camp

DCamp Part 3 | Diabetes Camp Family Style

Up next – The Absolute Highlight of DCamp Video and The People that Make DCamp What It Is

DCamp Part 3 | Diabetes Camp Family Style

This really just sums it all up

I have yet to write fully about our trip to the Clara Barton Center last August because I know I cannot do it justice. Despite my dislike of the concept of camping, I would not hesitate to go again. But for the fact that we are going to the Friends for Life Conference in July, we would be headed back this August. I foresee a trip in 2012.

We have wonderful memories of our time there. As I look back at everything we did, it’s hard to believe it was only four days long.

It started with the initial ice-breaker where we played Duck, Duck Barton and sang “one and twenty, two and twenty, three and four and five and six and twenty…”

We learned lots of fun camp songs like Go Bananas, The Donut Song, Yogi Yogi Bear and I Want to Be Friendly. We continue to sing them even seven months later.

First night campfire (note the backpack of D supplies on the counselor next to Colin)

We played lots of crazy camp games like Tails, Toilet Tag and the ever blood glucose reducing activity of Gah-Gah – as effective as any insulin on the market, with a faster onset. Colin absolutely loved playing Tails because speed was everything in this game and that boy is fast. Colin and Caleb brought the game of Gah-Gah home with them. We now have a volleyball renamed the Gah-Gah ball. If you’re wondering, you play in a spacious, enclosed area (typically blocked by turned over benches) and can only hit the ball with your hands. You try to get the other players out by hitting their legs or feet with the ball. So simple, right? I’m not kidding about its effect on blood sugar. It’s right up there with swimming.

The dining hall experience may have created my fondest memories. It’s not a quiet place. You dine among an almost constant stream of camp chants. Meals were themed – Pig Tail Lunch, Sunglasses/Hat Dinner, Be a Winner – Rhyme at Dinner, Singing Breakfast (although I can’t recall a meal that did not involve singing) and No Hands Lunch. “Bum-Bum-Bah-Dah” is by far my favorite table-slapping, dining hall song.

I simply can no longer compliment my kids with a “Good job”, without completing it with the quick-paced mantra of “good-job, good-job, good, good, good – HUH!”. Not possible.

It was a little unsettling in the beginning. It’s an immersion into a world of silly. But we all acclimated, got our bearings and joined in.

Underlying all the silliness is well-planned structure.

Caleb's Second Favorite Activity at Camp

There are scheduled blood sugar checks otherwise known as “BGMs and insulins” often done back in the cabin while preparing for meals. Chores are shared and everyone pitches in. There is a protocol for dealing with blood sugars outside of the scheduled “BGMs”. Each counselor has a backpack at all times which contains meters, lancets and fast acting carbs. Nightly protocols include multiple bg checks until it is deemed okay to reduce it to the mandatory once a night. Each cabin is connected to home base via a speaker/walkie talkie system and there are nightly check-ins and codes for potential emergencies.

The staff are almost exclusively teens to young adults. I was very impressed by the caliber of each and every one of them. They knew how to have fun and also knew when to be serious.

There is a daily, ceremonial flag raising, one of many camp-style graces before each meal and, of course, a jam-packed schedule of activities. It’s impossible to get bored.

At Camp Joslin (the brother camp to CBC) enjoying the lake

We had a campfire, went canoeing, swam, hiked, visited a horse farm, did archery, partook in a taste-testing of unique foods, played baseball and did arts and crafts. There was a comedic parent pageant where the parents got dressed up with props chosen by the kids and performed their varied talents. On the final night, the kids had a barbecue while the parents were treated to a candlelight dinner in the dining hall. We were reunited afterward at a rockin’ dance party.

There were also informational sessions for the parents like: Nutrition, Taking Time for You, and Living Socially with Diabetes  During one of these breakout sessions, the non-D sibs came together to look at, try on (without insertion) and talk about diabetes tools like meters and pumps. The D kids met separately and wrote “Dear Diabetes” letters. Caleb told diabetes he wanted to take a magic pill and be cured of it.

It was the first camp experience for my children and they all LOVED it. A five star hotel has nothing on Camp Barton. Although I look forward to our next trip to the Clara Barton Center, that hotel room in Boston where we extended our trip was a happy site for this momma after 4 days of cabin life.

Up next – DCamp Photo Montage, The Absolute Highlight of DCamp Video and The People that Make DCamp What It Is.

Related posts:

DCamp Part 1 | The Trip That Almost Wasn’t

DCamp Part 2 | Opening Day of Family Camp

DCamp Part 2 | Opening Day of Family Camp

We made it to North Oxford, Massachusettes, safe and sound.  We pulled into the Clara Barton Center’s (CBC) parking lot and were greeted by two Leaders in Training who merrily instructed us where to park and check in.

Upon checking in, Caleb and I met with several members of their staff including the medical counselors and the food specialists.  David, Colin and Lila went back to the truck to bring our stuff to the cabin.

Caleb has never been to “just kid” camp, but I’m pretty sure there was a calmness and casualty of family camp that regular camp does not have.  There are less people there in general and since most families have only one member who lives with type 1 diabetes, there are far fewer T1Ds for which they need to review care details.

Caleb sitting on his bed in Rainbow Ridge cabin. Note the staircase up to the counselors' loft behind him. 🙂

Check in was pretty painless. Everyone was very friendly. The food specialists were happy to learn that although Caleb’s medical records note him as being allergic to EVERYTHING – yes his blood work shows that he is allergic to wheat, dairy, eggs, soy, shellfish, tree nuts, peanuts and everything else they test for – that he is, in fact, only allergic to peanuts. (I hadn’t realized that part of his medical records had been sent over in advance).

We were assigned to Rainbow Ridge cabin and Caleb and I headed over to reunite with the rest of the family.  We thought Rainbow Ridge was pretty spectacular.

As we unloaded our stuff, we got acquainted with four of the five counselors, all of whom live with type 1 diabetes and are long time campers of CBC, and would be bunking in the loft of our cabin. We shared the cabin not only with them, but with two other families.  A mom and dad with a 9 year old girl and a mom with her two kids, a 9 year old girl and 6 year old son.  Both girls were living with type 1 diabetes and actually met in the hospital at diagnosis.

Colin's, Caleb's and Lila's swim bands.

Next, Colin, Caleb and Lila took their swim tests and got their safety wristbands showing their level of swimming expertise. Caleb still speaks of the one minute of water treading and “tough”.

We then went out to “Lower Rec” where other counselors and family members were gathering and partaking in ice breaking activities. We learned songs and games and I felt like a bit of a fool running around and holding hands with strangers. Like Harry Potter thinking “Not Slytherin”, I was thinking “please, please don’t pick me for ‘Duck, Duck, Barton’, because I really don’t want to have to get up and run around this big circle or fumble all the names of the people that we are trying to learn.”  I know I sound like a child.  The good news is, the actual children of my family were having fun and that made me happy.  And no, I didn’t get “Bartoned”. (Yay me!)

From there, the evening went as follows:

  • BGMs and Insulin (more on that in a later post).
  • Dinner, complete with song chanting and table banging.
Turkey dinner with all the trimmings. They are "taking in" the singing/table banging culture that surrounds them.
  • Banana Olympics.
  • Camp fire, complete with campy songs and more songs.
  • BGMs, insulin and snack back in the cabin.
  • Sleep.

You haven’t heard of Banana Olympics, you say?  Well neither had I.  Each cabin adopted a banana, decorated it, named it and took it through a series of courses culminating in a huge catapult.  Any bananas that survived the events deemed their owners winners!  There was a single banana survivor caught in the shirt of a very agile and committed dad.  Ours met with a different fate after its catapult.  It was a hoot to see the counselors dressed in their scrubs to attend to the injured bananas.

Colin and Lila interacting with one of the counselors while waiting our turn for the banana catapult.

So that is the beginning of our stay at the Clara Barton Center.  I have several more posts planned that will touch upon various aspects and highlights of our DCamp experience, rather than a day by day play by play like this one.  I just wanted to get started with the nitty gritty for those of you who are like I was, curious about every single detail of how this marvelous camp experience works.  Plus, we were all in a little bit of camp culture shock, so for the first day at least, we kindof just went through the motions.

To be truthful, my nitty isn’t so gritty, so if you have any questions as we go along, please feel free to ask and I will happily respond.

Colin, Caleb and Lila at the campfire. Notice the backpack on the counselor next to Colin. Each counselor carries one full of blood glucose meters, lancets, test strips and glucose tabs.

DCamp Part 1 | The Trip That Almost Wasn’t

DCamp Part 1 | The trip that almost wasn’t

During the most hectic summer ever, following an extraordinarily busy week, we were packed and ready to set off for our long awaited trip to the Clara Barton Center for family camp.

Have you heard anyone say they didn’t absolutely love their experience at diabetes camp? I haven’t. The reviews I’ve heard are consistently rave.

We tied up some final details that morning, including fueling up the truck.

Dave called me from the gas station. The truck was not drivable. He turned the wheel to pull out of the station and “POP”, the power steering was done for.

It was a Sunday. Getting the truck fixed pronto was not an option.

We have two vehicles. Mine is “the truck”. Dave’s is a teeny, sporty sedan.

Truck towed, David back home and we’re looking at all the things we need to take and the car. Big pile of stuff including pillows, sleeping bags and necessities for 5 people. Little car. We can barely get the three kids to fit in the back seat. There was no way our big pile of stuff was going to fit in the trunk that fits little other than Dave’s baseball bag. I walked inside the house leaving Dave there contemplating out of sheer desperation.

Do we miss the first night and see if we can get the truck fixed in the morning?

Do we wait and rent a vehicle first thing in the morning?

Do we drive to an airport and rent a vehicle today?

My dad knows automobiles. When this happened I called him to get a sense of whether there was any hope that we could diagnose the problem with the truck and fix it ourselves. He validated the chances were slim to none. Immediately he offered to bring his pickup truck over for us to use. To both David and I, that seemed like too big an offer to accept and we were determined to figure this out ourselves.

Boarding the truck about to depart

When I saw the big pile and the little car, I knew the only way we were going to get to the Clara Barton Center for opening ceremonies, which I felt were too important to miss, was to take my parents up on their offer. I looked at David and said, “If Colin calls you in 15 years in the same situation that we’re in, what would you do?”

Enough said. We accepted the offer and my parents were on their way. Not only offering their truck to us, but driving over in two vehicles which means my mom was driving, and driving on the highway, and lets just say driving is not her favorite thing.

Thanks Mom and Dad. And really big thanks, Mom.

Within no time we were packed and ready to go. To the kids, taking the trip in Grandpa’s truck was a nifty adventure. I was just happy to be back on track. Dave was cursing German car makers.

That is how our trip began.  We arrived safely and happily at the Clara Barton Center within a couple of hours.

Just arrived at the Clara Barton Center for family camp

Not to give away any ending or anything, but we got through all the hard stuff before we even left. The rest of the trip went off without a hitch.

To be continued…

Diabetes Camps | Linky List

Click here to add your DCamp link or see the complete list - Image create by Lorraine -

We’re going to diabetes camp in August!  Yes WE.  The whole family is heading to Massachusetts for 4 days.  I’m excited – I have yet to hear someone not praise the benefits of diabetes camp.

I originally had a little trouble finding the program we’re going to at The Barton Center.  I ultimately got the details from Caleb’s endo, but thought it might be useful to start a list of camps by geographical location.

So if you and/or your child are planning to attend a diabetes camp, or if you know of a great diabetes camp, won’t you add the link of their site to the list?  Just click on the big blue circle. Please include a geographical reference when you post the name for easy reference.  If you’ve blogged about your camp experience and want to include that link, go ahead, just please list the camp name and location where it asks for “Your Name”.

The first one on the list: The Barton Center – NorthEast US.

Happy camping everyone!