The Question I Hate…….Diabetes is NOT a Member of My Family!!!!!

How you doi'nOne of my favorite movies of all time, and not merely during the holidays, is a Christmas Carol starring the one and only Alastair Sim.  It is the production to which all others are compared.  That said, there is a line in the movie that makes me cringe every time I see it.  Fred, Scrooge’s nephew, is leaving after he invites his uncle to Christmas dinner, which he of course declines.  It is the first time we hear the phrase, “Bah Humbug”.

As Fred puts on his winter-wear, he is talking to Bob Cratchit when he says, “…and the little one, the little lame boy…….”  He is asking with all sincerity but it goes right through me every time I hear it.  Not a name, not the youngest, not the cute one, no: but as if he is only known for  being, “…the little lame boy’.  Yeeech.

It’s right up there when I hear, “……..how’s her diabetes?”  Like she was practicing for a school recital or like it’s her friend……which it’s not.  Is it me or does that phrase just grate on your nerves?  How do I answer that question?  I have no idea.  I usually say, “I don’t understand your question.”  I say that because I really DO NOT understand their question.

The proof is that when I have asked that question back to the person, I have received many different answers.
“I mean is she getting closer to outgrowing it?”
“I mean is it in control yet?”
“I mean is she ever sick?”
“I mean is there anything new that will get rid of it?”

Huh?

Look, I get it, people are trying to be nice, they are trying to show they care….I understand all of that; but it does not change the fact that it irks me.  Sometimes it is asked with such insincerity too, like Joey in the TV show Friends, “How you do’n?”  I would rather, actually, be asked how she is doing than ‘her diabetes is doing’, like it was an additional member of the family.

I say that…………..knowing that sometimes it resides here like it is.

I am a diabetes dad.

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

A Really Bad Management Tool; “I Dunno”!!!!!!!

I dunnoI actually read recently that a mom was upset because her d-child was told that if an A1C was not at a certain level, the doctor would take away the child’s insulin pump.

WHAT!!!!!?????

There is so much wrong with this statement but the point here today is not to grill the doc but, rather, open a discussion on an entirely different matter.  Although if it were me there would be a strong discussion with that doc; as I explored other possibilities.  I am not sure what this mom did but it triggered a switch in me to revisit what we all need to do when it comes to diabetes management.

There was a commercial on locally in New York years ago.  Sy Syms had a store which consisted of designer clothes at greatly reduced prices and his tag line was; “an educated consumer is our best customer.”

When it comes to diabetes management and your child, if this statement does not describe you; WORK to make it describe you.  I’m not asking you to be confrontational with your medical team, nor know everything there is to know, but you have every right to ask questions and at the end of the day; YOU MAKE THE DECISIONS what road to take and what will impact your child’s care.  there will be times that you need to dig further to gain knowledge and perspective but if you live by, “I dunno”, you need to do everything you can to change that philosophy.  And no one can do it for you!

I have written about this subject before but it is so worthy to write about again…..when it comes to treatment, you hear the options, you do the homework, and you make the call. If you do not have the time to learn, FIND THE TIME to learn.  You are no different from anyone else who has been in the same position.  Very little in this world is so unique; others have accomplished learning and so can you.

Why?

Because when a doctor told my child that their present A1C was like a report card and they were at a C minus; I stepped right in to correct that statement.  “No, it is not a report card, it is a gauge.  Why not share why (my child) would feel better with less swings in the numbers and stress why THAT is important.”

The stare given to me was given right back.

In 1999 when we were told that the Kaitlyn was not ready for the pump (it was a whole different world just 15 years ago) at age 9, we made it clear that not only was she ready but that one way or another; she was getting one.

But when we spoke, we did not just speak our opinions.  We spoke what we knew.  We spoke of other kids who had pumps, we spoke of why A1C SHOULD NOT be viewed as merely a report card on how “well we are doing” (I just hate THAT).  We spoke with authority, we spoke with knowledge, and we spoke with the confidence to share what we knew.   And we DID know.

The biggest thing you can do for your child with diabetes is KNOW.  Plain and simple–know what’s out there, know what your options are, know what others are doing, know what you know.  Knowledge allows you to discuss options.  At the end of the day, it’s your call.

NO ONE KNOWS YOUR CHILD MORE THAN YOU.  Knowledge of products, management tools, and treatment options allows you the best opportunity to get this ‘diabetes thing’ correctly——–that; and a whole lot of prayers.

Learn—-because knowledge is a powerful equalizer.

I am a diabetes dad.

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

 

Ever Noticed: Those Bruised the Most; Inspire the Most?

Broken heartSo many times I have heard and stated how incredible our kids with diabetes are in dealing with life, as well as deal with managing their diabetes.  Today I want to recognize another group of people who, deal with diabetes; and all that life throws as well.

That’s you.

One of the greatest aspects of what I do, is I met people in all walks of life.  I’m inspired, encouraged, and many times amazed at what parents accomplish while dealing with diabetes and also with a broken/bruised heart at what life calls, ‘fair’.  I have noticed a few trends that just constantly make me stand up and say……WOW.

I have found that the people who have faced adversity, I mean REAL adversity, are usually the ones who inspire me the most.  I do not know why it is, but they also seem to be the most positive people I know as well; and they look for no sympathy…….they just ‘do’.

They do more and more and when asked; they take on more.  They seem to live full lives and for the most part, most have not the slightest idea how or why to stop due to their own heartache or pain because they are too busy living.

Parents do amazing things while tending to their child (children) with diabetes.  They tend to so much with their children without diabetes.  They are single parents; parents with problems at home; parents who take care of THEIR parents; they are parents who both need to work; they are parents who lost their partner and/or their child; they are parents that ‘go-it’ alone and sometimes even with a spouse; they are parents who are unemployed; they are parents that volunteer, advocate, give, donate, mentor, and are active in their communities.

They do it with a smile, a touch, and always in a manner that just makes you WANT them to be around.  They do not complain, ask for help, and rarely let you see any of their pain deep inside.  When someone rants and raves about some little thing that sends them over the edge, this parent is the first to comfort others; putting their own pain behind them.

They are out there.  You know them and I know them.  You will never hear them say anything about anyone else.  The person who laughs the hardest knows real sadness;  the person who lives life to the fullest has seen it taken away; the person who comforts the most knows inner turmoil; they have a spirit unlike others.

So when we realize how much our children do, also realize how much you do also.  Life is more than boo-boos needing to be kissed; sometimes it is showing our children that no matter what life throws at us; we are stronger than ANY adversity.

We have to be; for them.

I am a diabetes dad.

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

“YOU ARE WRONG!!!!!!!”………….really?

yellingThere was an engaged discussion recently when I read something that someone wrote and I thought; “well that just does not seem correct?”  My first thought was to engage the discussion but I knew we would be off to the races on a discussion who was right and who was wrong.

That discussion would have been nothing but a waste of time.

And to be truthful, when I considered the source; I doubted my own convictions.  My column today is not about being right or wrong in an online discussion, or at a support group, or even in a phone call; it is what to do when you are looking for answers.

Many, and dare I say most, agreed with what this person wrote and I wanted to find out for myself.  I started asking some people who I know and respect who, for the most part, agreed that the discussion should have been more open-ended and not so definitive that IT IS THE WAY IT SHOULD BE.

Being in the wonderful position I am in life, I contacted quite a few doctors who stated there are too many mitigating aspects to the situation that should be left to the individual to decide which way it should be.  It is surely not a definitive.

The moral of this story is that no one person should be taken at what they say to be an absolute truth.  Heck, it took four guys to get the gospel right and they didn’t even agree on details.  Truth is, at the end of the day, I did not want to get into a discussion about it but I needed to know for me.  As I stated, being right or wrong is only important to me as it relates to the management ideas I try to instill in my two kids with T1.

My point is that no matter what you read, and even if 47 other people say it is the truth, if it does not seem right to you; do your homework and find out.  Be careful NOT TO LOOK just for an answer that you want to hear, but rather, obtain enough information, lay it down in front of you, and make the decision that you know is best for your child and the day-to-day management of diabetes, or supporting an entity that you feel is correct.

Never stop asking questions; ever!  The first step in formulating an answer is to ask the question………..how many questions?  As many as it takes for you to believe that the sources are reliable and educated enough to render an opinion worthy of your consideration.

Horns can be very loud to get individuals out-of-the-way, but it is a quiet map of a chartered and planned-out course that gets you to the destination.   Think about it.

And act accordingly……….but only if you agree that is the way to go.

I am a diabetes dad.

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

“My Child was Diagnosed Over a Year Ago……I Still Cry….Is that Okay”?

Teardrop1I saw this question recently and I thought enough of it that I wanted to share with you all and ask your input as well.  The short answer is that no it is not okay…….it is downright expected.

This diabetes world has my full attention.  I have shared a million times that our kids do amazing things with diabetes.  They inspire, they are active, and in all things they take life straight on.  But sometimes “it all” just hits us and it can be the smallest thing that sets us off.

Don’t we wish we were as strong as our kids?

I’m all for tears and have shed quite a few.  I think keeping it locked inside is no good at all.  The questions that EACH INDIVIDUAL needs to answer is when is crying stopping you from moving on.  I’m not the one to tell you, but at some point you have to find the balancing of coping and moving forward.  Crying every night is no good in any circumstances; at some point tears need to be a release and not part of your every day activities.

At what point should that be after diagnosis………you have to answer that question.

I remember deciding very early on that I would substitute tears for actions.  You can decide what that action is and how much or how little energy you want to spend.  But I promise you this, the more you find time for doing something, the more empowered you will be; and ultimately the less tears you will have each day.

But you will cry.

Many of us still do.  And some have arrived at the point that they will not allow diabetes to let them cry at all; more power to you, that’s great.

The interesting and wonderful thing about diabetes is that we are not in competition with anyone else regarding pumps, shots, meters, A1C, or even how much we cry.  We are in competition with diabetes; and I strive every day to make it lose as much as possible.

You should too.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Are Those with Diabetes………Healthy?????? The Two-Edged Sword!

two edged swordThis ‘diabetes’ can be so complicated.  The two-edged-sword is a slippery slope indeed.

The World Health Organization defines ‘Health’ as the following:
Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.

So to have a disease, according to this definition, would mean that those who have Type 1 diabetes would not be classified as healthy.  And make no mistake about it, diabetes is a disease.  No matter what we tell our kids or think to ourselves; it is not a merely a condition; IT IS a disease.

I have certainly seen that our kids (and adults) can do anything with diabetes. But the truth is that it can change almost instantaneously via a glycemic reaction, or worse yet in the future as we all know too well.  We continue to strive toward better management and better caring for diabetes but we show the world two very distinct versions of our lives.

We say that the world does not understand what our children go through, what adults go through managing their diabetes, what we go through managing our children’s diabetes; but we also say do not call my child sick, my child can do anything, my child can conquer the world.

We encourage our kids to reach for the stars, but we go before many entities asking for funding to be increased and to continue to cure diabetes because of everything our children ‘go through’.

Now saying to a group of people who live as we do something along the lines of what I wrote above, well, we all get it.  But what we show the rest of the world; well THAT message must surely be confusing TO THEM, don’t you think?

I write today not as someone who says there is an answer to whether our kids should be classified as ‘healthy’ or not.  I write about this today so it becomes clear that if we as an entity, the diabetes community, are not in sync and cannot agree how to relay diabetes to the world, why are we so surprised that the world ‘doesn’t get it’?

Like I said, I have no answers to this; but I surely welcome your input.  Thoughts?

I am a diabetes dad.

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

A Reminder for School, Now that Summer is Coming……Share with Others.

Don't forgetSchool’s out, well almost.

With the start of June upon us, the excitement of school ending is also here.  Kids will be home for the summer ……..and the fun begins.

I have a suggestion for today; do not wait until the final day to inform the school nurse that you will be in to collect all of your child’s diabetes supplies that have been there all year-long.  The last weeks of school become pretty crazy for everyone.  Send a note to the nurse with about one to two weeks of school left.  In the note, inform her (or him, anyone have a male school nurse?) that you will be in on the last day to pick up everything; or if your child is old enough, let the nurse know that your child will bring everything home with him/her on the last day of school.

Your focus is your child.  The school nurse; probably has a focus for over 700 kids with a percentage of them dealing ‘with something’ that the nurse must be familiar.  A note to reminder the nurse will probably be welcomed.  This also goes for anything that might be in home room classes, etc.  The note might not completely guarantee that everything will be all ready, but a nice reminder at least will pave the roadway for you to arrive and pick up what you need to (depending on what is given back to you, it might also give a glimpse of your child’s year in the school nurse’s office.  One year, when picking up at the end of the year, we were given the meter still in the original box, unopened.  Want to imagine THAT discussion?).

So much happens in the final days of school each year; last-minute requests should be avoided and will allow a smoother transition at the end of the year.  It’s a little thing, I know, but it will make one less thing to frustrate you.

Bring on Summer!!!!!!

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’

 

Where is a %$@#+*&% Meter, THAT WORKS, in this House.

Diabetes supplies pileSo how any meters do you have.  The other day, I wanted to check my blood sugar (SIDENOTE: I was fine).  So I knew this would be no problem because we have meters, right?  I mean LOTS OF meters all over the house.

Ten? Twelve?  Probably more.   You have them all over, right?

I could not believe how many were missing parts.  There is a ‘something’ that those who have had diabetes in their household may be suffering from…..it is the incomplete meter sets.  You know, you need lancets and you figure you will fill it up later, there is always another diabetes bag within reach, “I’ll grab that one”.

Guess what?  You grab another one and do not go back to the other and refill it, you just move on to the next one.  Well after a certain amount of time, you have 12 meters alright; and 10 are incomplete.

Grrrrrrrrrrrrrrrrr.

So a word to the wise, every now and again go through the house, the car, the school and locate all meters and check to make sure they are stocked with supplies and that the supplies are not passed the expiration dates (Yeah, I found that too).  We check batteries in fire alarms in our homes, when we move the clocks ahead and back twice a year, it might also be a good time to check diabetes supplies as well.

It may be that you need these supplies at a time that you may not have the luxury to ‘look around’ for what you need.  I learned my lesson and I hope it may help you as well.

I am a diabetes dad.

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

 

A DiabetesDad Bad Day PART II :) A Thank YOU!!!!!

Smile faces happyWOW.

That is my reaction.  Just WOW.

I share many things on this page.  Yesterday, in the morning, I was not having a good day.  As I went through what I was feeling, I realized that it’s on a rare occasion that I share the bad times.  They DO NOT happen often but I would be lying if I said they did not…….they do.  I’m human.  I have them, you have them.  Two kids with T1 sucks; heck one kid with T1 sucks, and I would be hard pressed to think anything other than that those with 3 or more, it sucks even more.

So I decided to share what I was feeling.  It’s always my goal to try to help just one person realize that what we go through day-in and day-out is………okay.  We are in this together until a cure is found.  And as many know, I believe with all my heart and soul that IT WILL be found.

When one writes, it’s like being in any communications media; we really have no idea who we reach or if what we say resonates to many; or even to one.  I speak what I feel, I have pissed people off, I have had companies ‘un-invite me’ to conferences because I did not kiss-up to them, my passions have annoyed some, but it is the positive feedback I receive on a day-to-day basis that keeps me coming to this keyboard.  Those messages ‘trump’ everything else I do.

When a mom writes that she read an article and it gave her the strength to get through another day, that blows my mind.  When a dad writes that he feels he is not alone after reading something I wrote, well that literally drives me to my knees.  What happened yesterday…..all day long…….humbled me beyond measure.

I did not receive hundreds of messages yesterday, I received thousands.  Messages, emails, FB messages——I was absolutely dumbfounded.  Shutting my mouth?; well that’s not so easy.  Yesterday was a ‘mouth-shutter’ for me.  When I shared the moment I had that overwhelmed me, it was just to show that in as positive a light in which I try to live, it does get tough from time to time.  We all have those moments and it’s okay.   Well, you responded.

All day long people shared their thoughts.  I received messages, I received many ‘virtual hugs’ from the UK, France, Scotland, Ireland, Peru, many more countries and from across the United States.  I’m truly humbled.  I am.

So today is just to say thank you for caring so much to take the time to write yesterday.  You all have so much on your plates, to take the time to write a message and/or call, well that means much to me.  I thank you from the bottom of my heart.

I am okay, will be okay, and am back to doing what I try to do everyday.  Kicking diabetes’ ass.   Thanks for helping me on the one day I needed it.

In it to end it.

Much love always.

I am a diabetes dad.

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

A DiabetesDad Bad Day. :(

smile faces one sadI’m not feeling very positive today.

I’m the one who always touts how we can live and should live a positive life.  And I do; well mostly.   But at this time, at this moment, I do not.  I share much with you and at this time when I feel just how much I cannot stand this disease and I worry…….well I wanted to share this moment with you as well.  It’s not always easy, is it?

It’s the enormity of it.  Everything I fear in my two kids who battle this disease everyday.  Did we ‘do it right’….inventory check.  They seem to be doing well; working, living, and going to school.  But are they checking their blood sugar each and every time before they get behind the wheel of the most powerful machine they will ever sit in and control?

Do they understand that a mistake can be a big mistake?  Do they know how to make sure they will be okay?  Are they dating someone who really takes this disease serious enough to do what they NEED and not necessarily what they want?  What does life hold for them?

It all started over something small. Something, I am positive, others would say is silly.  It was not a huge episode.  Just something that made me see, again, for the millionth time. I opened the refrigerator to get some cream for my coffee and the two shelves labeled Bobby (with a note bearing his more mature request of Rob taped over it) and Kaitlyn written in marker.  Permanent marker.  Labeled over 5 years ago so we knew who owned what.  Why were we given two kids with diabetes?  Why?  Why? Why? Why?

Why even given one?

I started to realize that my little girl, my little butterfly-kisses princess of two years old now twenty-four, could probably fill 50 refrigerators full of diabetes supplies that have passed through her body.  I just stared at the two shelves.

I cried.

I walked outside, took a deep breath.  Twenty minutes sitting and looking at a majestic sky by our waterfall.   Thinking.  Dwelling.   Done.   And now it’s time to get back to work.  Nothing gets done while crying about it.  Working toward a cure, advocating, and/or whatever else being worked on does not get done by dwelling on things that cannot be different.  By working on these things, though, can bring about change.  Change is what we need.

So today, was not an easy day for me.  I’m entitled.

I am a diabetes dad.

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