September 29, 2007

From the Way Back Machine

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DisneyWithDiabetes started life as a blog. When we had the chance to move it to Deb's AllEarsNet.com we were happy to do it. We figured more T1 parents would see it there and the more people who see it the more it can help.

When it moved it left some of it more edgy lobby Disney for some change posts behind, so as to comply with the friendly world of AllEarsNet. Like I said we were happy to move.

Well these little gems are some of what was left behind:

I don't know if Mark is still the guy but what the heck feel free to write anyway:




Update I
I went to a Disney Vacation Club annual meeting and stood up and asked why they couldn't provide carb counts. Two very nice senior suits swore they would get back to me. Still waiting to hear back years and a few letters later. I stopped holding my breath.

Update II
July 2007

We attended the Children With Diabetes Friends For Life Conference at Disney's Coronado Springs Resort In July '07. Every food, beverage, meal, snack and even condiment served at the convention by Disney catering had a little placard by it listing the nutrition information and serving size.

The US Surgeon General took the time in his talk on health literacy to comment on how useful and valuable this information is not only to diabetics but as part of the very health literacy every American should seek out.

Kudos to Disney Catering. They impressed the US Top Doc on the nutrition info they provided. Yeah Catering! (Maybe you can help out the CMs in the regular food service departments!)

By the way I wonder how Mr. Surgeon General did in the parks. I saw him walking around Magic Kingdom. He is type 1 too, so he carb counts like the rest of us.

Update III
Also July 2007, Just after the conference.

Nutrition Information Books at Counter Service
We heard a lot about these and with high expectations based on typical Disney execution were anxious to see how they help address the dietary need for type 1 diabetics to count carbohydrates.



They don't.



You typical McDonald's does a better job of making dietary information available than Disney does with any of the nutrition notebooks we saw. In fact McD's put it on the back of the place mat on your tray.

I asked for these books at a lot of different counter service places. About half the people I asked had no idea what I was talking about. The other half? - There was typically one book per counter service eatery. Finding it was a battle.

When found they were poorly organized (if organized at all) bad photo copies of vendor wrappers and packaging that have no constant layout, data content or presentation bundled into a black looseleaf notebook. Some have section tabs and a few of those actually have the contents collected into the sections the tabs identify.

Your 5th grader would get a F for this in health class.

Clearly the goal was to collect information on ingredients for allergy not nutrition information and then shove it in a book that they hope to god nobody will look at because the books are embarrassing. There are the odd food nutrition labels here or there where they could find something to copy but nowhere near all food items on the menu have full nutrition information.
I would have been impressed if a hot dog cart on a city street had this kind of information but this is the Walt Disney Corporation. In the words of the Pixar villain Syndrome, Lame! Lame! Lame! Lame!



September 27, 2007

data, information, juggling, knowledge, and Wisdom

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ADA gives out Wisdom Kids to diabetes newbies. The kits are cool, particularly good for kids. They are colorful, informally written, informative, uses juggling as a metaphor for diabetes care and even come with juggling balls and instructions. They are also good for parents who are so stressed from a diagnosis that they need to be talked to in small words.

It is a very good piece of work. If you don’t have one search Wisdom Kits at diabetes.org.

Now this is a good thing because I could use a touch of wisdom. Families with type 1 juggle a lot. Much of what we juggle comes from measurements. As a family with two type 1 kids we take an awful lot of measurements. Each measurement creates a point of data, a blood glucose number, units of insulin, etcetera. So I get a ton of numbers - Data.

Our boy, Merriam Webster defines data as factual information used as a basis for reasoning. So a piece of data in and of itself isn’t much to write home about. Now if it gets used as a basis for reasoning that’s another matter.

I think we want more than data. We want information. So we compare insulin to carbs and calculate correction factors. Our pal Webster calls information knowledge obtained from investigation.

That’s more like it! Knowledge, Knowledge we want knowledge! The condition of knowing something with familiarity gained through experience.

I like that: knowing something with familiarity gained through experience. ‘Cause we D families gain a lot experience real fast.

I think there is even more. I think we want Wisdom. Again with the Webster’s, accumulated philosophical or scientific learning – the ability to discern inner qualities and relationships.

Isn’t it interesting that there is a relationship between the philosophical and scientific there in the definition? To me that says there is really more to it and maybe a little of both is needed. Science and philosophy are not mutually exclusive. Wisdom becomes the ability to apply what is true philosophically and/or scientifically to have a good life.

Wisdom: That what I want!

For starters it comes in kits.

Here is a little free knowledge obtained from investigation; put the good crystal in the cabinet before you start with the juggling. A few of the data balls you’re tossing around may go astray. The juggling is hard at first but it is learnable.

Like juggling I think the applying the accumulated learning to life is going to take some practice. Just like juggling, it takes practice to check blood before discipline for behavior. Come to think of it that may an early step in the path to wisdom.

September 24, 2007

Here Comes the Big Number 1

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My letter to the Big Bud


August A. Busch IV, CEO
Anheuser-Bush
One Busch Place
St. Louis, MO 63118

September 11, 2007

Dear Mr. Busch,

I am the parent of two Type 1 insulin dependent children. I have recently read first hand reports from other type 1 parents of remarkably poor treatment of a juvenile diabetic at Sea World.

In reading the online account of this situation I noticed that a leading national organization for Type 1 families, Children With Diabetes, has canceled events at future national conference that were scheduled for Sea World in Orlando for 2008 and due to poor service in 2006. (http://forums.childrenwithdiabetes.com/showthread.php?t=7019)

These two cases bring into question Sea World and Anheuser-Bush’s commitment to the safety of those who face serious medical challenges but may look fairly normal.

I believe in fair play so if Sea World is getting a bad wrap, I would like to know Shamu’s side of the story. Unfortunately your PR staffer who replied online seems to have done little but fan the flames and stampeded many families to Disney.

Type 1 diabetes is a autoimmune disease. Unlike type 2 it is not a function of lifestyle. These kids are type 1 24/7/365 through no fault of their own. They can not take a day off their diabetes care to enjoy your parks. I know from experience that the excitement, exercise and adrenalin associated with theme parks often make blood glucose management difficult for families in theme parks.

The FDA estimates there are about 1.6 million American families with a type 1 family member. Will Sea World, will you, make your parks accessible to these families who must do dozens of finger stick blood test and shots every day and may need to immediately provide glucose, often as juice, to avoid insulin shock? Or have you simply written us off as an undesirable demographic?

In addition to being the father of Type 1 kids, I am a big fans of theme parks. I write DisneyWithDiabetes.com. I would be happy to highlight your commitment to making Anheuser-Bush parks type 1 friendly there.

I look forward to your response.

Very Truly Yours

Bennet Dunlap


Bud's reply:

Daniel J. Decker
Executive Vice President & General Manager

SeaWorld
10500 SeaWorld Drive
San Antonio Texas 78251

Mr. Bennett Dunlap
(address)

September 20, 2007

Dear Mr. Dunlap:

Thank you for contacting us regarding the {name not printed for privacy reasons} family’s experience at SeaWorld San Antonio. As you know we have apologized to the family directly and are working to address related issues on the needs of children with diabetes.

At the Anheuser-Bush Adventure Parks, we take the comments of our guest seriously and always strive to provide world class service. In this case, we are addressing your concerns and those of the Children with Diabetes Forum related to employee education and service guidelines.

I have every confidence that the passionate, dedicated leadership team here at SeaWorld San Antonio will thoroughly review and reform these policies in a timely, equitable manner.

Thanks again for your letter and your concern.

Sincerely

Daniel J. Decker


cc: August A. Bush IV
Keith M. Kasen


So here is my two cents:

The parks like the flagship beer clearly have a strict quality control program. This assures that, like the beer, the reply is carefully crafted and like the brew without any distinct flavor. (I have long felt the defining flavor of a Budweiser is celery and y'all know how tasty a stick of celery is.)

Seriously I think they may be getting the idea and that is a very positive thing. I am sure they are doing what they see as quality service. They know they dropped the ball here and are trying to pick it back up.

For that I raise a glass and toast their efforts. It is a Guinness.


ps Daniel - there is one T in my name, just like it was spelled in the letter to your boss - I am getting used to people who assume it has two.

September 20, 2007

Super Parents?

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Diabetes messes with your head.

It screws up your life and messes with your priorities.

It is clever.

It is subtle.

Parents that are new to Type 1 inevitably are overwhelming processes and ask will it ever be normal again. The experienced parents (who are probably still a little overwhelmed) respond with comforting words about a new normal. We talk about a settled down life, which encompasses diabetes care. We say, “Yes you will get into a rhythm of the new normal.”

In that settled down life we take comfort in regular many times a day measurements that for the most part reassure us we are doing OK. Or not if we are not doing OK, we act and OK comes back in minutes, maybe hours.

We get lulled into an odd sense of parental security. Odd in that we are constantly worried about what our diabetes varying will bring next, but secure in that we test and measure as parents.

Thos e test are regular feed back and trigger regular parental medical actions, corrections are swift and for the most part effective. We have back up systems to help and reassure us when our parental actions aren’t swift and effective.

And there it is one of diabetes’ most brilliant little mind games. We have taken the bait. The numbers game becomes a measure of our parenting.

We see all the testing and action as parental skills. We are good parents because we do all this diabetes stuff and teach all these medical practices to our kids. We get the luxury of daily hourly feed back on our success. We like that because we get feed back form a simple finger stick and reading a screen.

We are not just parents, we are super parents! We do all this diabetes crap on top of everything else.

But wait.

With the testing there is minimal, if any conversation.
No actual parenting skills needed only D care giving. Not that the D care is easy but the subtle temptation of diabetes is to substitute medical practices for parenting. We don’t really have to care for the kid to give diabetes care. It can become mechanical.

It is even worse for the non D siblings. They see changes in the household. They hear you say the D kid didn’t do anything wrong to get Type 1. They see the effort lavished upon their brother or sister, who you said, didn’t do anything to deserve all the parental attention. Attention they are not getting.

The morning after our second diagnosed of T1 we forgot to give the first T1 kid his insulin. At the time I said, “Gotta deal with both diabetics, not just worry about the new one.” I didn’t say we have 4 kids we gotta pay attention too. I don’t want to know how many mornings before and after we haven’t checked in with the other two kids.

Diabetes care isn’t parenting even if we do it because we are parents. There isn’t a finger stick for measuring how your doing as a parent.

So how are the kids, all the kids?

September 16, 2007

How Do You Get Where You're Going if all You Doing is Controlling the Altitude?

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"Hello My name is Bennet and I am a Private Pilot."

There needs to be a 12 step program.

Aviation is an addiction. It has been 11 months since I last landed an airplane. I still get cravings when a small plane goes over head. You would think it would go away with time.

When I was becoming addicted, a student pilot, I learned navigation by dead reckoning. Wikipedia defines it as:

Dead reckoning (DR) is the process of estimating one's current position based upon a previously determined position, or fix, and advancing that position based upon known speed, elapsed time, and course.

Winds aloft, altitude and other stuff factor in too but the point is you navigate by deducing where you should be based on speed time and course. The way you know you got it right is there is a big lake, railroad crossing, interstate junction or what ever out the window when you expected it to be there. If you like doing sudoku you'll love dead reckoning.

Dead Reckoning factors into how I help my kids manage diabetes. Now I figured I was weired thinking like this, and OK I probably am, but there is a brilliant blog article by Scott Hanselman on BG that really works to help explain diabetes and guess what? Right! It is a aviation analogy. It's right here go read it. I'll wait for you to come back.

Waiting

Waiting

Waiting

Great stuff huh?

OK now Scott's on the right track but he is only talking about altitude and as you may have deduced there is more to dead reckoning than the altitude. When he takes off from New York he's got 360 dregrees to choose a heading from 359 of them are not going to LA.

Altitude control keeps him from a sudden, unpleasant and potentially fatal interaction with the ground. It also keeps him from the equally unpleasant and potentially fatal, if a little longer in the making, altitude sickness.

Altitude control doesn't have anything to do with where you're going.

As brilliant as Scott's piece is, and it is brilliant, there is a big part missing. How do you get where you're going if all you doing is controlling the altitude?

This is the 'have a life' part. The love movies, play games, invent your own barbecue sauce, write blogs, go to theme parks, eat sushi, have a passion part of life. Other than not hitting the ground or passing out from lack of oxygen altitude isn't as important as course.

Get a little feedback to see if the navigational fix you were expecting is out there. See if theses instruments are on gauge: Faith, humor, friends, being a part of something bigger, sanding up for someone who can't stand alone, sitting back an letting someone else have a go.

How do you fix a course?

September 13, 2007

Fear and Loathing in Sea World

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... and the Search for Professor Moody.

Shamu's corporate master, Anheuser Busch, took a big beating from a group of fired up type 1 parents online this week at CWD. One family posted their story of particularly poor treatment by Sea World and it rapidly became one of the most viewed threads on the Parent's of Kids with diabetes forum.

A dose of corporate speak by the park's PR person only added fuel to the flames. Regardless of her intent, she was received as the equivalent of a stranger walking into the family living room and saying her pets lives are more important than those of the family's kids and all their friends ' kids too. To no great surprise there were flames enough to roast marshmallows across the nation.


Talk about hitting a nerve.

Not that it is hard, its a big nerve, that is just under the surface. The nerve of no matter how good things are there is the possibility of what we carry all that juice and glocagon for.

With diabetes the good is that it isn't bad. Right now the big good, a cure is a long way off. Before it get here we'll all have sets fall off, miss boluses and the combination of activity, excitement or some other variables will cause lows.

All experienced diabetic parents know this. We know our diabetes will vary. The reality that something can go wrong is always right there. It sucks. To use Hunter S. Thompson's term we have "The Fear."

The Fear is the realization that we couldn't protect our kids from getting type 1.

Worse The Fear is that someone, who has no clue, won't let us control what we can control. (At times it feels like there is precious little we can control.)

Sea World tapped right into The Fear. Everyone, who knows The Fear, reacted with all the parental protection possible. Shamu you swam into a storm but what did you know? Certainly not The Fear, your not a T1 Parent.

If you read any diabetes parent's forums it there. The Fear is the monsters under the bed. It is behind the the family fights and marital stress. We know T1 kids are more likely to be diagnosed with depression. we deal with idiot in-laws, the school and The Fear is there. We all know it. It's made worse by people who think cinnamon is a cure, food Nazi's and those think if we would just follow the doctors simple rules everything would be OK. As if diabetes didn't vary.

So how do we beat The Fear?


I am not sure I know. I know I don't always succeed.

I know I try to laugh at it. Sign me up for another literary reference, Professor Moody's class on boggarts at Hogwarts. I try to laugh at what I fear most - complications I am unprepared to deal with.

  • I try to see lizard whisperers, congressional road kill and good natured abuse of GAP.
  • I want to celebrate the first forgotten shot because that is the first step towards making diabetes care second to having a life.
  • I will drive to the midnight show of the next big movie because the kids think that is fun.
  • I'll go to he California Grill and have sushi with one son and buffalo with the other.
  • I can laugh at The Fear, point and say Riddikulus.
And speaking of that, Sea World is ridiculous - I'll laugh as I check into Disney's Wilderness Lodge.

September 11, 2007

Seven-One Six-Nine Six-One Hike!

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It is the first Tuesday, after the first Sunday, after Labor Day. That means the Eagles lost an embarrassing season opener playing below expectations and it is check up day for the diabetics or it is election day. TV has been blessedly free of electioneering ads. I'll take the ED ads or old Wilfred's diabet'us ads over politician ads any time.
So it must be check up day.

When you have two kids with type 1 it makes life a lot more manageable if you double book the endo. team. We took Connor in for Delaney’s first visit for moral support and they have been going in together ever since.

Delaney was never admitted. She was diagnosed on a vacation in Disney World and with the telephone help of our CDE and Dr., together we got her stabilized without a hospital stay. We went in that first day back home to check in maximizing vacation time.

We have priorities. Disney comes first.

Connor had announced the he was going to be responsible for his diabetes in July. This was something he picked up at FFL. He was gonna own it. Last night he was sure his A1C was going up.

Part of the ritual is measuring height. Connor measured out at Six one. We had them double check yeah 6’1”. Oh and he’s 124 lbs. Bean pole. Well the height sure was up.

Delaney has had lower A1C for a long time. At first it was honeymoon but later well she was just lower. Not a lot but constantly lower. Today she was a very respectable 7.1. She has issues feeling lows and any lower could be a problem. We need to work on getting her numbers a little less variable, better set rotation, more consistent bolus before eating and maybe a tiny bit less forgetting to bolus all together.

She was cool with that plan.

Connor’s A1C was an outstanding 6.9. I think I had joked he could take a day off school if he was under seven when we thought he was going up. I could read him remembering it in his eyes.

He is cool with that plan.

I called Jim at Animas who gave the teen talks that inspired Connor at the conference and thanked him. That conference thing paid off.

Hey Jim, you got any ideas for the Eagles?

September 10, 2007

Twice the trouble.

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Why is it harder for two?

We are one of the lucky families to have multiple type 1 kids. So why is it that so few of the stuff manufacturers consider that possibility? All meter cases are black and all downloadable meters look the same, OK the one touch mini comes in colors but guess what?

Right - They only come in black cases. A little too much Henry Ford guys lighten up or hue-en up or what ever the word for more color up is.

(Psst! Hello guys? Any of you have a pre-teen girl at home? Do the words Pink and Purple mean anything to you?)

Lancing devices come in any color you want as long as it the only color they come in. Try keeping track of whose pokey is whose.

I get emails telling reminding me it is time to reorder, except they don’t say which kid it is for, as if a reminder our diabetes supplies are due is enough to make it clear who’s supplies are due. The supplier’s online store can’t grasp the idea that I get supplies for TWO customers in one account. Nope I gotta have two accounts each with a different email to use the online store. Guess what?

I don’t use the online store.

Most business have affinity processes where by clients who bring more business to a relationship are rewarded for it. Not the diabetes industry. They make it harder, annoyingly harder, to bring more business to the relationship.

All this on top of twice as many strips floating around the house, under the couch, in the dryer, floating in the dog’s water…

c'est la vie

I wonder how those families with more than two get by.

September 8, 2007

Chick Magnet

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Connor wasn’t all that into the diabetes conference at the start.

He didn’t say much but his body language spoke volumes. He was on the other side of the lake, as far from the conference center as he could get.

I couldn’t much blame him. He was elected camper of the year at diabetes camp the year before having a crappy time. His cabin was full of kids mostly interested in talking about drug other than insulin so he spent his time hanging out with the counselors. He’s a likable kid but I not sure that was his ideal experience.

So diabetes vacations were not at the top of his list. He was also missing a bunch of swim meets and he like winning swim races.

Kim and I volunteered to help with registration. So he bolted to the other side of the resort. OK that’s fair. He came back and was heading for some ice cream with Kim somewhat sullen.

This was about the last we saw of him.

A couple of girls walked up introduced themselves and asked if he wanted to hang out with some other kids from the conference at the food court.

See ya Connor.

Turns out we didn’t see much of him. We did hear from a dad who daughter spoke well of him.

I guess that is a good thing.


I figured we would see more of him the next week.

We were staying for a week of vacation at Disney’s Beach Club Villas. Ahoy Palloy. The two older kids were flying down from their camp experiences (very good ones) and a friend of Connor’s was coming along too.

We saw Connor briefly at the last breakfast. He was doing the “I’m an actor playing the part of their insurance fraud kid bit.” We left for Beach club. He knows his way around Disney transportation so we left him to say goodbye to his new friends.

We took a bus to Disney Studios and a boat from there to Beach Club. We boated past Boardwalk - where we diagnosed Delaney’s diabetes, that not withstanding I love this place.

On the boat, Delaney said it was good to finally be in Disney World. I knew what she meant. This is our part of Disney World, the Epcot resorts. If home is where the heart is we’re home. The conference was OK but this, this is Disney. Suites, air conditioned halls and boats to gracefully slide you around from resort to amusement parks and back again.

Connor’s friend, Ben, is also a swimmer. So we pushed them out to the pool. Exactly once. They found their own motivation to head to the pool after that.


A pair of cute young British ladies with lovely accents to be specific.

Ben and Connor showed up for meals. One night they didn’t come in on time and mad a ton of noise when they did come in. The next night they had to explain to the Britts they had to come home early. They weren’t late after that, they weren’t early either, bang on the spot of curfew.

After a few nights at the pool the group headed off to the parks.


I think Connor’s GAP went too.

September 6, 2007

Forgive Me Disney for I Have Sinned.

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... I let my teenager loose with his GAP.

Let me explain;
The last day of the Children With Diabetes’ Friends For Life conference is go play in the park day.
Prior to that Disney lined up families and handed out Guest Assistance Passes (GAP). We have two T1 kids and they don’t always do the same park stuff, so we got a pass for each. Disney puts the full party size on the GAP when they write it. We were staying another week and flying down the rest of the family and a friend of the boys.
That’s 7 if your counting.

FFL worked well for Connor, as far as we could tell. Not that we saw much of him. He did a drive by “Hi dad. We had a good session this morning” once. Other than that he was with his peers.
So that last day Connor went to the Magic Kingdom with some of his new friends. We went with some of ours. We may have seen him for a few seconds, he may have needed cash.

In point of fact some of the other T1 parents were getting a bit suspicious. They didn’t think Connor actually existed.

In short they were close to calling the cops on the imaginary T1 kid we invented for insurance fraud. Hell of a good idea but I don’t want three diabetics, even if one is imaginary.

Connor caught wind of this imaginary thing and made a point of acting like some kid we hired to play the part of our imaginary diabetic kid on the rare occasions he was around these other diabetic parents.
If you find this at all confusing, welcome to my life.

So anyway we find out later that Connor and Co. instantly became the masters of the GAP ability to shorten Disney lines. He also very quickly noticed it said a party of 7. There were 3 of them that day.
In his mind that was extra capacity that was going unused.

So what does he do? Just use it for him and his buddies? Nope. He pulls people out of line and takes them into Space Mountain with him.

When we found out we put a stop to it. I was ready to be ticked off, thinking he was probably flirting on the girls or something.

Nope. He picked a family of 4 with smaller kids. Figured he would make their day.

It is like he’s is his own little Year of a Million Dreams making lines shorter for random families.
I swear the kid is a regular Robin Hood.

September 5, 2007

The Lizard Whisperer

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On FFL’s Magic Kingdom day, I took Delaney and some other tweens who are big enough to deal with diabetes but are still a little too scared to ride Splash Mountain to explore Tom Sawyer’s Island. They can cope with needles, sets and lancets but a meticulously engineered, time proven ride was scary, dark, wet, hot tunnels were cool.

It is important to let them figure out for themselves what is OK.

There was a very small baby rabbit hopping about the island eating some leaves. We all stopped to check it out. It was small, fluffy, cute and in a departure of Disney World - real, not made in Taiwan and not for sale exiting a ride.

As we were looking at it one of Delaney’s friends turned away, dropped to all fours and froze. You know how a predator becomes rock still stalking its prey? That is what Madi had become.

I was becoming a wee bit concerned, though briefly about glucagons, when a hand shot out. She rolled into a sitting position and became the smiley happy kid again, one who was gently holding a gecko in her hands.

My boys have been trying to get near one of theses things for 10 years. No luck.

It took Madi less than ten seconds to have one in her hands. (OK there may be some genetics at work here, her dad gets paid for driving F16s so there may be a fighter jock predator gene kicking in.)

It sat calmly in her grasp. She patted it with a finger and showed it around to all the former bunny watchers then let it go none the worse for the wear.

Ya can never tell what talents a kid may have. If you are lucky and you sit back, still, long enough they may show you.

If one is quick enough with a gentle enough touch to catch a gecko and let it go unharmed they may be a lizard whisperer. That is a far more interesting definition of a child than diabetic.

It is important to let them figure out for themselves who they are, we need to see the lizard whisperers where once we saw a diabetic.

September 4, 2007

Congressional Road Kill

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My buddy Jake had a “Promise to Remember” meeting with his local congressman, one Honorable Representative Bartlett.

Poor guy no idea what he was in for.

Jake is an 8. Not years old, he is that too, 8 is what he registers on the Richter scale.

I met Jake at FFL. His mom thought that ‘cause we were at Disney world she should be Bashful about trying to get free a down load cable for her meter. I helped her out - I ain't Bashful.

Jake calls me Mr. BadShoe like it is our secret joke. Mr. BadShoe Jake is too well brought up not to call a male grown up Mr. but no reason not have a good time with it.

Jake’s a real sweet kid and way too smart for his own good.

So anyway Mom was told that the Congressman had a background in physiology and might go off on his own tangent, the meeting was scheduled for 15 minutes but would probably be shorter. (Translated into outside the beltway speak - the Congressman is very important and he should be allowed to pontificate on his agenda, you are the prop for the photo op.)

So anyway Mom prepared Jake for 15 minutes. Every who know Jake is thinking Andy Warhol at this point.

Mom prepares Jake a lot. I don’t know why.

I knew Jake for about 5 minutes and I knew he was force of nature. He is going where he is going. I am Mr. BadShoe and that is that. Mom’s know him from the start - come to think of it I bet he kicked up a storm in the womb. You think she would know him better by now…..

Mom picks up the story after the prep talk, “So there are 4 of us including Jake and the Congressman is going to do most of the talking but it would be short.

“We get in there and his chief of staff introduces himself first and Jake does the same and says "I am Jake and I have type 1 diabetes" the staff member made the mistake of then asking Jake if he ‘took shots or pills.’"


Duck and Cover.


“Jake was incredulous, and went on to give the 2 men a primer in the differences between the 2 types of diabetes. Jake also asked them to support funding whenever it came up because he wanted a cure but would settle for a better artificial pancreas than the one he has now (pump and cgms and himself) the congressman then said he didn't know why they called it a artificial pancreas.”

Dude! What the..? Don’t they give you lessons in Congressman School about not giving the floor to someone who is gonna school you?

Jake told him it called that because it is his pancreas that doesn't work.

Mom said “The congressman went on to tell Jake that the pancreas secretes enzymes and those are still working and that the islets of langerhorns is where insulin comes from.

"Jake then told him yes but those are in the pancreas, that is where the beta cells are and that is where insulin and that other hormone "what is that other hormone called mom?" ‘amylin’

“It was a lively discussion that lasted 30 minutes and the JDRF people were all excited because the Congressman walks Jake out. (Right like calling security on a kid was an option? I can just hear the staff guy thinking get this kid out of here before they get a TV camera rolling!) JDRF said it was the best meeting with a politician that they have ever had and want Jake to speak with the state Senator.”

Call FEMA now Senator.

Jake - Love Ya/Mean It