Hugs!!!!!

Hugs bearWhether ‘virtual’ or being right next to someone and receiving it, there is truly nothing like a hug.

Hugs are the perfect way to soothe an aching heart or allow someone to know just how much you care about them at a given moment.  If you have not seen someone in a long time, meeting them with a hug just says so much doesn’t it?

Some people are very wary of hugs, almost like you are invading their space.  I feel very sorry for people who do not like hugs because I surely like to give them.  I like receiving them too.   There are different types of hugs.

“Hi Hug”. This is the hug when you meet someone who you like and you know you are just very happy to see them. “Happy Hug” is used when you are together and (for example) your team scores a touchdown in a championship game–a shared experience. “Hurt Hug” is used when you visit someone at the loss of a loved one (for example).  That warm feeling that makes you want to help take away the pain of a loved one.  It is also used on hearing bad news and someone wants to know that they will help you ‘through this’ whatever ‘this’ may be. <<>> or “Virtual Hug’ I want to be with you but I am only seeing this on FB and live nowhere near you so please accept that I would be hugging you if I were with you. “Cute Hug” is the ones we give our pets.  Hugging an animal when all else cannot be done, is a great substitute for an immediate hug. “Group Hug” is the collection of many people who hug together—-every family needs to experience a group hug more often than not.

When do you hug?  Let us know.

So there are many ways to be hugged, and many reasons why one should be hugged.  The bigger the hug (commonly called a bear hug) the better someone will feel……so give someone a hug today, even a virtual one—-you will both feel better.

I am a diabetes dad.

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

Your Child’s Diabetes…..Is FEAR Lighting the Way????

FearThe decision-making process, dealing with diabetes, has so many factors leading us to a conclusion.  The question we must continue to ask ourselves is what decisions are being made based upon good sound judgment and what decisions are being made base on absolute fear?

Being cautious is different from being fearful and I think it’s important to recognize the difference.  I read recently that a child wanted to be separated from their parents for a while and the parent told them absolutely not.  As I read this, and there certainly might have been a reason the mom did not share, but the fear shown got me to thinking.

The child was a teenager, it was only a short time, and I just could not figure out the reason.  When someone had asked for ‘the why’, the only answer I could see was that ‘the mom’ didn’t think the teen age child could take care of himself.

Fear.

There are so many things we, as parents, must teach ourselves regarding ‘letting go’ for our kids to go forth and become active participants of this wonderful world we live in.  Make sure that their diabetes is in that mix.  The philosophy that they will have this disease for the rest of their lives, and we will take care of it for them for as long as we can because of that reason, is a philosophy that needs to be cautious.

The faster they ‘take-on’ their own management and the less reliant they are on someone ‘doing to for them’, the more they will understand.  The more they understand, the more they will accept.  The more they accept, the better management they will have in the long run.

Taking care of it because it is necessary and taking care of it out of the fear that you will do a better job is the question we must constantly answer.  One young man decided he no longer wanted any devices attached to him.  No more pump, no more CGM.  Although the parents thought the complete opposite, it took a great deal of control to let the teenager (late teenager) make that call and see what the result would be.

The fear came into play but they did not act on fear.  They discussed and he believed that for him, at that moment, MDI (multiple daily injections) were his best course of action.  They allowed him to make the call.  The result: his A1C dropped 2 points.

Now I’m not going to discuss which management is correct because I have very strong feelings on it and  know you do also.  My point?  Sometimes, it is good to allow fear to heighten your senses to weigh all options, but in the end—-fear cannot be the driving force in the decision process.

DO NOT let fear be the only reason you conclude on an action-step in your child’s diabetes.  Make the decision based on an approach that weighs ALL FACTORS and allows you a clear head to move forward.

Easy?  Of course not but fear, listened to too often, will paralyze your process which will not help anyone.  Fear to the point of caution, being part of the process is not what I am talking about.  Actions based only on fear is what I am talking about.  Don’t give in to it.

You can be afraid of the dark to the point of being cautious.  But sometimes the only way to over come that fear is to walk in the room and turn on the light.  Think about it.

I am a diabetes dad.

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

 

PWDs & Parents!!! Your Input Please….The Role of Girl/Boyfriends?

discussionThere are so many people who interact with people with diabetes.  They have friends, relatives, and at some point a boyfriend and/or girlfriend.  I have always found myself looking to see what the people around my kids do, regarding their diabetes.  Will it be that the role of us, “the diabetes police’” is something that we want and/or need to transfer over to the person our kids are dating.

What are the conversations they have?  Our kids cannot, really, set the parameters on how we deal with their diabetes.  If we were there from the onset, we felt the responsibility to make sure they live as healthy a life as possible and that means….well….sometimes we become a ‘pain the butt’.  And that was just the way it was, but those rules change when we are not around.

In a relationship, do PWD immediately put ‘that’ to an end and ‘kabash it’, or do they allow it.  If the boyfriend or the girlfriend say, “did you check your blood sugar”……do they immediately say, “don’t start that, you are not my parents”. 

How does it work in a relationship?  Is diabetes concern OFF limits?”  Is it the elephant in the room that no one talks about.  Do my kids NOT TALK about it while in a relationship?

Do we, as parents, have the right to enlist a boyfriend or girlfriend that THEY NEED to look after our child?  Today I ask people with diabetes who are older and have been through the dating scene, when you started dating what role did that person have in your diabetes?  What did you want them to do?  What did you allow them to do, if anything?  Parents, what do you think you have the right to say and/or do?

I seek your candor.

A discussion please and so everyone can see it…please answer as a reply to this post and not just on the FB page where you see this.  Thanks.

I am a diabetes dad.

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

Diabetes:The Snowflake Disease…..Something to Remember in Our Frozen World!!

frozen snowflakeI was thrilled to hear John Lasseter discuss how his son’s life with diabetes was an influence on a character (Elsa) in his smash film, Frozen.  I have, for over 20 years, called T1 Diabetes, the Snowflake Disease.  And for some reason, the two now ‘just seem correctly connected’.

My term, Snowflake Disease has always been a real good teaching tool for me when I have lectured and when I have written, and also have remembered when I needed it.  It has many meanings that are important to remember as we go through life with the new normal, called diabetes.

The first meaning is that diabetes is not the same in any two people.  They are as different as….well…..snowflakes (get it?  cute, huh?).  This is such an important thing to remember.  Because something that works for one person does not mean that it will work with someone else.  I have always found it so interesting to ‘watch’ debates happen online over management aspects because the simple rule is, your child’s diabetes is not my child’s diabetes.  With the exception of something so outrageous that it is a unified no-no, discussions of differences should be minimum, at best, because something that impacts my child may impact your child very, and completely, differently.

This is crucial as you seek advice.  You can ask a question and get 5 different answers……all are correct…..BUT IN THAT child’s life.  Remember that point.

The second meaning, and I have said this before; you can live second-by-second on one day wearing even the same clothes as you do on the next day; and the way diabetes reacts can be completely different.  Many times, a parent will write that their child ate ‘such-and-such’ and their child’s number spiked.  Why?  Got an hour for an explanation?

There are so many factors, some of which are not completely understood, on what impacts diabetes on a daily basis.  Again, different from Monday to Tuesday; no matter what you do—–like snowflakes.

So what do we do?  Well for one thing be ready.  I have often thought that the people who do best in dealing with diabetes are the ones that roll with everything.  You cannot do anything when ‘things happen’, but you can surely do something about how it impacts you.

Every time you get behind the wheel of your car, you have no idea what will enter your path and you adjust as you drive.  Diabetes?  Not SO DIFFERENT that we can’t adjust, speed up, slow down, move left and move right as needed.

Some times we feel so alone that it seems like a cold dark corner in our frozen world of diabetes.  Knowing that it will get better in time and that it can be different from one day to the next will help us see THAT WARM sunlight will return again.  Remember; snowflake; different all the time.  Roll with it and “let it go” and you too will say……the cold never bothered me anyway!!!!!

I am a diabetes dad.

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

Diabetes Platform?……..It Should not be Reserved ONLY for Miss America

crownI had this thought (that surprise you?).  For the last few months I have watched as Sierra Sandison, Miss Idaho, Miss America-top-online-vote-getter; as she shouted from the mountain tops about having diabetes while she competed for the Miss America crown.  Took a lot of guts to do that, didn’t it?

Not easy to go out there and say, I wear an insulin pump.  It became a big deal to our community.  Our kids became inspired.  Our kids, in some instances felt….well…less different.  Diabetes in the national spotlight was such a bold move.  We all saw it and thought how wonderful.

Now take it to your living room.   If the media made such a big deal about Sierra having diabetes and wearing the pump, and ‘showing the world’; know that your child does this same thing every single day.

But without the fanfare.

If we thought it was such a big deal that someone would take ‘this diabetes thing’ to a level of showing the world……think, for just a second, what they go through everyday showing the world…..that it is okay.  They make it okay.

Yes it’s brave to go out there like Sierra did, we all said it, we all came together and voted for her to prove the point.  We as a community voted her into being a finalist.  We voted.  But yet, our kids do it every single day, don’t they?  They ‘go out there’.  They get little for their efforts, they are just being a kid.  They put it out there every day.

Don’t let a person in the limelight be the only ‘thunder’ your child with diabetes hears.  In between the million questions of ’what was your number’, ‘write your number down’, and being the diabetes police we are every day……remember they do what Sierra does every day also.  They just do it without the possibility of winning a crown.

What Sierra did was terrific………what all people with diabetes do every day…..is no less than heroic.

Let them know.  Give them your vote……every day.

I am a diabetes dad.

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

Miss America Last Night——If You Think She Lost……..Better Think Again.

Sierra SandisonOk, The Miss America Competition is over and Sierra Sandison did not win…….or did she?  I guess the first question one needs to ask is; “What is your definition of win?”  At the end of the night, did she wear the crown?  If that is your definition: no she did not win.

I have a different definition of win and in my book and if you ask me (and many others), this young lady is about as big a winner as one would ever find.  It’s my understanding that she was very hesitant to speak broadly of her diabetes back when this all started.  It is easy to do nothing, say nothing.  It is hard to take a stand.  After consulting with many, including our community’s very own Miss America, Nicole Johnson, Sierra rethought her platform and decided to come out fully discussing her diabetes.  Even as far as wearing the pump, VERY VISIBLY, during the swim suit competition.

HEY WORLD……..LOOK!!!!!!!!

It is my hope that this new attitude helps her.  I hope it translates to her taking the best care possible; this is my hope.  What I KNOW is that by her actions she has helped countless people out there (probably mostly kids) to say, “Hey, if she is okay, I am okay.”  And THAT is a winner.

Helping others is always a winner.

Now we can stay idle here and not say anything…..but it is my hope that we all take the time—in fact, let’s over-fill Sierra’s email box with congratulatory letters thanking her for her efforts.

Here is her email for Miss Idaho, which she will remain for this year:
missidaho2014@gmail.com

Take the time to drop her a quick note and congratulate her on giving more attention to T1 diabetes than we have seen in some time.  She did not have to do that, but she did.  And on any day of the week, that is a winner in my book.  Let her know.

I am a diabetes dad.

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

 

Don’t Wait……BE THE SOMEONE ELSE!

Be someone elseWe are faced with many choices in this world.  We are faced with many moments in this world.  At any given moment there is a choice presented and the decision comes down to what road do we take?  What time do we give?  What is our choice to ‘just don’t do nothing”?

I find it amazing to work beside people (both professionally and as a volunteer) where ‘the norm’ is just not acceptable.  We can choose to do something about an issue and just ‘pounce’ when someone gets it wrong; and scream and rant and rave what a ridiculous comment or action someone takes……..or we can choose to do something about it.

It’s easy to yell and scream about a football player who punches his fiancé in an elevator; it is another action to take calls at a 24 hour crisis center.  It is easy to yell at someone for ‘getting diabetes wrong’, it is another action to get up and walk, ride, or advocate.  It is easy to point a finger and yell and scream, “can you believe that?”  It is another action to start a group to connect college students with diabetes.

My point?

Lifting voices is a good thing.  Our voices NEED TO BE HEARD.  But voices without action will die down once the screaming stops……and it will stop.  Ask yourself, “What am I doing?  Am I doing enough?”  I cannot judge you, nor will I, each must ask themselves that question.  Only you can answer.

I do know this…….there is much to do.  Being on the sideline pales in comparison to being on the playing field.  Are you on the sidelines? The ‘let someone else do it’ I am too busy (or whatever reason you think is justified) needs to stop.  Everyone deals ‘with life’.  Everyone can find some time, no matter how small, to help.

Get involved……some how……some where.  Don’t wait for someone else…….BE THE SOMEONE ELSE!  Period!

I am a diabetes dad.

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

 

The Story of the Red Bandana….One of the Most Incredible of ALL 911 Stories.

red bandanaI have seen hundreds of stories of September 11th, 2001.  I was a story of that day as well.  Last night, while at Citifield to watch ‘my’ NY Mets (leave me alone I’ve heard all the comments that exist), there were ceremonies in remembrance on the anniversary of 9-1-1.

A man walked to the mound to throw out the first pitch.  The announcer said but a few words; and the man dressed in red, with a red bandana tied to a baseball mitt, threw the first pitch.  He is a dad.  His story may be the most incredible one I have ever heard outside of the first responders and that of Flight 93.

I went home and found out more of the story.  It truly is one of the most incredible stories I have witnessed.  It’s a little long (thirteen minutes)……but I promise you…..it will be worth every second.

Click this link to view the story of……the man with the red bandana.

I am a diabetes dad.

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

 

A ‘Child’s Cry for Change’—an Update–and Stories Now Needed From You!!

Childs cry for change final coverIt has been a whirlwind since we first discussed the “Child’s Cry for Change”.  Efforts to help educate…..well……the world on looking for the warning signs regarding diabetes; and the diagnosis therein.  The goal is for the warning signs to be seen much sooner and that no child is diagnosed with T1 at death.

This is unacceptable.

The first result of the program resulted in a  concentrated effort entitled “Get Diabetes Right” which is a FB page Kim May (a d-mom) and I created.  Kim’s ad agency has done a monumental job on this effort.  At the site, you can download posters or request a PDF of the files to be sent to you; which will be done free of charge, you can forward them on to Doc’s offices, school nurses, and anywhere else where people can see them.  It is our hope to soon have a webpage in addition to the FB page, and also get ‘that map’ of electronic push pins to show where the posters have been distributed…..keep your eyes open.

I have also been in discussions with certain groups to create the huge traction on this that we have sought since the beginning.  That is becoming closer to reality and, hopefully, I will be able to share more on that in the not too distant future.  One has to first make contact, continue the process, allow groups to meet with their boards, and discuss internally. This is, but, an idea and I’m deeply committed to do all we can in every once of my ‘free time’ so no child ever dies at diagnosis again.

Each group I have met with, also has their agendas and to be included with this type of initiative, takes time. I have lost count on how many calls and meetings I have had but I know the traction is gripping the road and there WILL BE some exciting news when the discussions become more concrete ‘action steps’.

Presently, here is where I could use your help.  When we started this together, I needed stories of mis-diagnosed families of T1 diabetes, even if it meant diagnosis at death.  I created a document (or a book) of almost 40 pages.  the stories were heart wrenching and to all who sent them in, I will share with you that you have impacted many in leadership positions.  Your voices are being heard.  The discussions in meetings I’ve had have resulted in reactions of genuine concern; and the willingness to consider how we can approach changing this landscape. YOU DID THAT!  I now need to prove, by your stories and voices once again, that interventions HAVE HELPED.

Any child that had flu-like symptoms and a school nurse informed you that ‘it might be diabetes’ and you should have your child checked further; and it turned out that your child indeed did have T1 diabetes and the school nurse’s hunch/assessment was correct…..I need to collect those stories.

Please share in a few paragraphs what transpired and send it to me at karlya@optonline.net and in the subject line please write “School Nurse”.  I need as many of these stories as I can find; include the state (and town, city etc), grade your child was in; do not use last names or the names of the school.  For your school nurse just use their first letter of their name; “Mrs. A”, “Ms. A”, and/or “Mr. A”.  Please share this article on any site where parents of kids with T1 post.

I need these as soon as you can send them.  It is crucial to know when a diagnosis was also done correctly.  For now, I just need any school nurse stories you have.  Thank you for adding so much.  There will come a time I will share this entire journey; but the present focus remains to create an education and awareness program of large-scale distribution.  We will get there so that the Child’s Cry for Change……is heard….and heard loudly.  Send me your stories as soon as convenient.

Thank you.

I am a diabetes dad.

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

Who Are We…..????

BooksDid you ever see that commercial with the tagline, “What’s in your wallet?”  The idea is that if their credit card is in your wallet, you would be better off…..interesting concept.  I think that if you ever want to know a little about someone, look at their library, or at least at the pile of books near their bed, it will reveal a little bit of what interests them, and maybe even who they are.

My books are three-fold. Diabetes books.  I probably have anything that was written in the last 3 years or so; and I have some that go back 20 years or more.  If someone writes about a diabetes……well…..anything…..I want to read it.  I also have folders and folders of magazine and research articles.  I really cannot get enough of anything about diabetes.

Theatre Books.  Plays, about plays, Shakespeare, acting books, scripts, a book-case full of them.  It was my life for so long and I love when people ask me, “Do you still act at all?”  Fourteen years since I last walked upon a stage and people still ask me.  Cure first (as I promised to my daughter), acting later.  But I read them when I ever I can find the time.

Books about people.  I love to read stories about real people.  Autobiographies, biographies, retrospect—I find people fascinating.  How did they become who they are; leading the pack is Disney Wars, a must read for any fan of anything Disney—a real eye opener.  Relationships between presidents and advisers (JFK, Roosevelt, Reagan, Carter, Nixon) celebrities (James Cagney, Marx Brothers, Alistair Sim), leaders (Martin Luther King, Bobby Kennedy, Newt Gingrich)…….what made them who they are?  What drove them to ‘take on the world’?

Everything I read is always with ‘a grain of salt’ as they say.  But you can find out a good deal if you open a book with an open mind.  Such was the case of my reading True Compass: A Memoir. The insight to who Ted Kennedy was and why he was the “Lion” they said he was when it came to healthcare is explained in this book.  It matters not your political views, the man was a Lion indeed.  If it is a story of someone in real life, it interests me.

I’m not here today to suggest books to you but I am here to inform you that I have found a huge amount of joy, and more importantly knowledge, in reading about what interests me.  There is much written online in columns and on posts, and many in the diabetes online community have also written books too.  Their books not only will inform you, but it might give you a little insight to what makes those, you see all the time but may not really know, ’tick’ as well.

We are an interesting lot, this diabetes family of ours.  Find out a little more about them.  Share with us.  What would we see you reading today?  What’s in your wallet…..er….uhm…..on your nightstand?

I am a diabetes dad.

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