Diabetes Jeopardy Answer #7 for D-Awareness Month: He Flipped a Switch and LITERALLY Changed the World.

Jeff and Brenda…….who is Jeff Hitchcock.

In all of my travels, and out all of the people I have met in my lifetime; in my mind one man stands alone and apart from all of the rest as having impacted the lives of families dealing with diabetes the most.

He is a writer, a lecturer, humanitarian, creator, and has connected more people through his efforts than anyone else on earth; not to mention how many families’ outlook toward diabetes he has changed when he flipped a switch in 1995 turning on the Children With Diabetes.  There is not a doubt in my mind, and I say this as a fact not for dramatic purposes, that my daughter and son are alive today (and I know I am not alone when I say this) because of the people I have met, and what they taught us, at CWD.  Period.

Here is a little more about him from his site.

Jeff Hitchcock
 is the creator, editor, webmaster and president of Children with Diabetes. After earning a degree in computational mathematics in 1981, Jeff worked in high-tech and traveled the world, meeting Brenda, who would become his wife, in Africa. He worked in defense related industries until 1995, when he started a small Internet company and launched Children with Diabetes. He subsequently worked at LEXIS-NEXIS and Pearson plc on Internet initiatives, and now works full-time bringing Children with Diabetes to you.

In all the pain, agony, frustration, joy, happiness, and everything else he has experienced in making CWD what it is; only one person has been there for ALL OF IT and that is Jeff’s lovely wife Brenda, who also should be mentioned here as well.

In all of his accomplishments, awards, and world travels he will tell you that above all; he is merely a dad to a child with diabetes.  A CWD dad.   Indeed.

For Diabetes Awareness Month:

This month, I will be highlighting someone in the diabetes community.  They may be people you know, or might not know, but they give of themselves to make this world, our world, with diabetes a special place.   I will not get to everyone this month, but it is my hope that perhaps you can be introduced to some of those you may not know.

I’m certainly not the definitive on who should be included….you are.  If you think I should include someone, shoot me an email at tkarlya@drif.org and I will do what I can to include that person as well.  Welcome to diabetes awareness month.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

Diabetes Baseball

BaseballIt was 1999.

I had been active on the CWD chatrooms for a while.  It was a great way to obtain information.  During that time, back when, chats were more like a thread of sentences than anything else.  One person would write something and someone else would add to it, and the conversation would grow.

It was sort of cool.  People we did not know, trying to help others.  Even back when, some conversations were animated and passionate.

There was a woman, her name was Laura.  She had a son with diabetes named Sam.  I can almost still remember her post about heading down to Florida and asking if anyone wanted to meet her there.

Well be careful what you ask for because people started to say yes.  Not 15 or 20 people; not 100 or 200 people; but 500 people said they would meet her in Florida.  It was the beginning of a turning point in our lives.

Someone had taken an online group of people, who only knew each other through the internet, and was about to make them Friends for Life.  And many of us are.  We are a family.

Now when I say family, I mean just that….a family.  I do not mean just some sugar-coated (pun intended) sweet la-dee-daa type family……..I mean a real family.  We are there for each other.  We, enjoy each other, laugh together, we party together, we mourn together, we cry together and  you know what, from time to time we even piss each other off.  But we come back to each other.  You see in a family, when you love each other, you really cannot distance yourself because you are just that, a family.

Within that family are thousands of people.  Literally.  It is also the greatest resource we could ever know or have at our disposal.  Knowledge is power; and at our fingertips is a keg of dynamite worth of knowledge.  We are all so fortunate.

Many people have no idea of both the amount of time Laura Billetdeaux and Jeff Hitchcock spend making this work and the amount of personal sacrifice given over the years to keep CWD up and running.  

Things do not ‘just happen’.  Things do not ‘just get done’.

I think of all of this as I get ready to once again head to have my diabetes-supply-batteries charged up and ready to face this ugly monster called diabetes for another year.  Laura started Friends for Life and it was a step no one else took.  She did.  She communicates with every single one of those who register to come to the conference–numbering well north of 3000.  She started it for her son Sam, she continues it for you.

At some point, when CWD first started, Jeff Hitchcock said; “This needs to get done.”  He took the first step and started.  Jeff loves science and research.  He loves when the science backs the lecturer.  He loves when he looks and sees the amount of people thirsty for, and given, knowledge.

He did it all for one young lady.  The one young lady who made him cry when she took her first shot by herself at camp.  The one young lady who he walked down the aisle and gave to Adam.  And that new love will give Jeff and Brenda a new title; Grandparents; this year.

And behind all of this are Neal (Laura’s husband) and Brenda (Jeff’s wife) who are just as much of the reason that CWD FFL has grown as anything or anyone else.

Doing something you love makes it all worth while. 

So I get ready to go to Florida once again.  The place baseball teams go every winter to begin to get ready for the year ahead.  I go to get ready to face the year ahead in the world of diabetes.  With my Friends for LIfe…………I get to play baseball.

I am a diabetes dad

Please visit my Diabetes Dad FB Page and hit ‘like’.

 

I Know What (many of) You Did Last Summer……and Many More Should Do It This Year Too!!!!

CWDLogoIt was about this time 13 years ago; perhaps a tad earlier, perhaps in the final weeks of the year before.  I read in a chat room that a woman was heading to Florida with her family and if anyone wanted to meet there, to let her know. 

This was not any chat room.  It was a chat room of all parents who had kids with diabetes.  I knew in my heart that the one man who started it, and was relaying information about diabetes and allowing us the opportunity to be connected, was doing a herculean job.  He was a man who just wanted his daughter to be able to reach out and connect with others; he changed the diabetes world forever.

So I reached out to this woman (as did hundreds of others), and I stated we would love to go; and although none of us would know it, we became part of history.  The Children with Diabetes Friends for Life Conference (CWD FFL) was born.  That too would change the diabetes world forever.  Click the link above to see EVERYTHING in store for this year.

Jeff Hitchcock and Laura Billetdeaux are probably two of the most brilliant people you will ever meet for a whole bunch of reason but the one that stands out is that they both did something that had never been done before in such a way.  Jeff created Children with Diabetes, and Laura created every conference since that summer in 2000.

Their philosophy of ‘kids with diabetes are still just kids’ is a simplistic phrase with earth shattering complexity that drives them to perfection every year to create a conference that deals with the entire family and how diabetes impacts everyone from sibling, to parents, to grandparents, to children, and also now to adults who live with diabetes every day.  Amazing.

My phrase, albeit a tad politically incorrect, has always been to beg, borrow, or steal but get to a CWD conference and now through the Diabetes Scholars Foundation, there may even be financial help to get your family there as well.

This annual conference (there are also local ones and those in other countries) in Orlando Florida each July has over 3000 people and many state all the time how they feel the personal touch each and every year. 

Education, inspiring stories, inspiring people (in the past there have been American Idol contestants, Professional Race Car Drivers, Olympian Gold Medal Winners, Miss America, and the list goes on and on), and you can also see and touch the latest in technology for the best in management and in the research world.  (not to mention a very famous Mouse and a few of his friends)

Any others who have been there please reply to this article and let others know WHAT YOU thought of past conferences.

See you in Orlando in July (shhhhhh rumor has it that the incredible Moira McCarthy Stanford is giving the welcoming keynote—but don’t tell anyone I told you—PS it’s not really a secret but worthy of the reminder) 🙂 .

So if you have never been, get there this year; whatever it takes.  Your lives will change.  Your lives will be changed forever.  Bring the kids (yup there is childcare), the grandparents, and yourselves.   Newly diagnosed or the new normal has been around too long; CWD FFL.  Be there.
I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’

Others Do Not Go Through What We Do…..FEEL FREE to pass this on.

I saw a post on-line today that I thought I would address.   A mom wrote that she attended a Thanksgiving Day event at school and as much as the event was a lovely event she could not help but feel a bit sad as the others in the room certainly did not have a care in the world as she did having a child with diabetes.

First of all, we all certainly know that feeling.  It is a feeling that makes us wish we could have the life back we had before diabetes.   Where we were able to discuss things without thinking about the every day management in the lives of our kids. It is not fair that we have this burden and others do not, it just is not fair.  I know the mom who wrote the post and she is a great mom and she does a lot.

I learned something, the hard way, but I learned it none-the-less and I would like to share it.  It taught me a great deal about how to handle this feeling.  In a three-year time span we lost my dad, my mother-in-law, my brother-in-law, our daughter was in a head-on collision while the other party was on a cell phone, saw friends lose their children to both diabetes and by other means as well, and our second child was diagnosed with diabetes.  It was much to go through.

As we were going through all of this and we were in contact with many friends and relatives, I started to notice how many of our relatives and friends also go through crap in their lives.  Some stories were absolutely horrendous.

I started to really think about the many people I have come across in my life and here is what I have concluded.  I do not mean to sound rhetoric but the truth of the matter is life is just that…..life.  Our diabetes is someone else’s cancer or someone elses bad marriage or someone else’s dealing with a child with a mental illness, another disease, or car accident that changed their lives forever.  Not better or worse….just life.

What I have actually concluded is that almost everyone in this world has been given something that is extremely unfair.  We see others who ‘seem’ like they are okay because we do not see them grabbing a diabetes bag, or checking their child’s blood sugar or running for an orange juice……..but know this……..almost everyone is dealing with something that impacts their life greatly.

Now I know this thought does not make our thoughts go away but also know this; our children do incredible things and they do it with diabetes……..but so do we as parents.  Many times when I give a lecture people ask me if I am really that positive?  And I answer yes, I truly am.  My daughter and my son grab every bit of gusto out of life.  Could something happen to them that could derail their very lives?  You bet and I know that completely.

But more than that, Kaitlyn knows it and so does Rob.  But we all also know that their lives are as full as they can be and they do it with diabetes.  I saw a lecture recently by my good friend Jeff Hitchcock where he showed a graph that people with diabetes are now living their life span to the same as people without diabetes.  Read that sentence again.  Grasp it.  Understand it. 

Now some parents have lost their children to diabetes and it is that point that throws cold water on the entire thought process.  Life has been particularly cruel to them as life has been  to anyone who has lost a child.  I know so many families that have had this happen but interesting enough not one of them was living a defeatist attitude toward diabetes in their lives before they lost their child.

They lived their lives fully and ‘BAM’ the pain becomes something I have never experienced nor would even think of stating I understand.  One can not just ‘go on’ after that point but life does just that, goes on.  The pain will never go away.  But each of these families will tell you that their lives with diabetes did not define their child when they were alive and they are doing everything in their power to make sure diabetes will not define them in death either.  Their courage astounds me to this day.  No less painful but they go forward shattered heart and all.  They teach us to do the same.

When I was at the UK I gave a quote that I just love and it is from Sir Winston Churchill who stated, “If you’re going through hell, keep going.”  Isn’t that great?  When you start to feel down look at everything your children do WITH diabetes, start teaching yourself to celebrate that aspect of their lives.  They do not live with DIABETES, they LIVE with diabetes. 

I feel I owe it to those I know, who lost a child to this disease, to never allow myself or my kids  to get down.  We cannot do anything about diabetes coming into our lives but we most certainly can do something once it takes up residence.  We choose to ‘kick-its-ass every day.  Diabetes cannot win.

We all have good days and bad days and when the days are bad ones…..look at all that you and your child have done together…..I mean REALLY LOOK AT IT.  Know this, others do not indeed go through what we do, but many if they could, would choose to go through what we go through than what they have BEEN through,.  Diabetes cannot win in our lives…….we owe that to others who cannot say the same.

I am a diabetesdad.

My Child, When Low….Will Wake up…..Right? Um…..Not Necessarily.

I had the opportunity to hear Jeff Hitchcock present this weekend and he addressed night-time testing and the ‘thought’ that our kids wake up when they feel low.

It is thought by many (us…..definitely) that should our kids start to feel low while they sleep they wake up.  I know for me it was a fore-gone conclusion because Kaitlyn has done it most of her life.

Does it turnout that we were merely fortunate?

A study from the University of Luebeck in Germany tested 16 nonT1 patients and 16 with T1 diabetes.  During the control time none of the patients awoke.  In the test of the two groups presented with hypoglycemia; 10 patient in the healthy group awoke when presented with hypoglycemia while only 1 in the group with T1…….

Conclusions: A fall in plasma glucose to 2.2 mmol/l (40 mg/dl) provokes an awakening response in most healthy control participants, but this response is impaired in T1DM patients. … Failure to awaken increases the risk for T1DM patients to suffer prolonged and potentially fatal hypoglycemia. ***

How conclusive is this study?

Well given it is not a huge sample; but it is enough for me to know that either by CGM or testing in the middle of the night is something we probably should all be doing more; and not merely depending on our child, and/or loved one, to merely awake on their own.

This is not written to scare anyone but numbers are numbers and it is a tool/guide/reference for us to consider as we work through the daily management of diabetes.

It has always been just accepted that Kaitlyn and Rob would just wake up when they are low…..this study paints a different picture albeit a small sample group.  That said; until such time that someone tells or shows me differently–we will no longer JUST ASSUME they will wake up when low.

Granted that other factors may play a role if we choose to wake up and test them in the middle of the night or not–but one of those factors, which will be removed in our house, is the 100% belief they will just wake up.  How about you?

I am a Diabetesdad.

Editor’s note: My point here is we probably should not merely 100% accept that every time PWDs go severely low in the middle of the night—they will just wake up. 

 

***Bernd Schultes, Hamila Jaich-Chara; Eva Reiprich; Werner Kern; Alchim Peters; Herst L. Fehm –Department of Internal Medicine University of Luebeck, Luebeck Germany
Steffan Gais; Manfred Hallschmig; Jan Born-Department of Neuroendocrinology; University of Luebeck, Luebeck Germany
Kerstin M. Oltmanns- Department of Psychiatry & Psychotherapy; University of Luebeck, Luebeck Germany
Emails may be directed to: Schultes@kfg.uni-luebeck.de