Tag: Diabetes Easter

A while back, Rob and Kaitlyn were discussing something about their diabetes.  The conversation was theirs, and I will not reveal it, but I will say that what Kaitlyn said I could never say.  I have often wondered if people who have diabetes have a language all their own.  Or, at least, a ‘pass’ to say certain things to each other that unless you have it also, you could never say; or WOULD never say.

I guess in any ‘community’ there is language that can be shared that if you are not in that community; you either don’t know, or have no right to speak in a certain way.

We, as parents, have the same inferences I’m sure.  Terminology such as shots, injections, site changes, ‘high’, and so on would mean things completely different said in…….say….. a supermarket rather than said within a group of parents.

With parents, I believe, there is also an entire unsaid dialogue.  A set of understanding events that only we know, feel, and worry about.  These are the pitfalls of diabetes.  The things we do not address out loud and know in our hearts.  The things that ‘could happen’.   But don’t fool yourself for one second…….not one……if you have a child that is allowed to ‘go online’……they have already checked it out.

Your child knows those things too.  Don’t think they are not FULLY AWARE of the things that WE don’t say out loud.  Yeah, THOSE things.  Complications.  Death.  Life expectancy.  Future.  Yeah, I’ll say them…….because they know too.  They have known for a long time.

Did I just put a pit in your stomach?

But what should excite you, and make you smile, is that despite all of those things your child, or kids, who have T1 catapult forward in this life.  They are not beaten down with the things that could happen, they live with the things that will happen.  As I have quoted my daughter a million times; “I have diabetes, diabetes is not who I am.”

One of my favorite sayings ever.

Diabetes is not who they are and MAKE SURE you have given them every bit of education possible.  Make sure they are ready.

After one our performances in NYC, we had a high school theatre group at the show who had a Q&A with the cast afterwards.  While everyone was speaking ‘pie-in-the-sky’ about the ‘business’; my friend and wonderful actor Glenn Taranto (Gomez-The New Addams Family etc.) hit them right between the eyes by telling them that they should not come to NY until they are ready.  Until they have done their homework.  Until they have everything they needed to move forward.  And if they have not done it yet, they don’t belong in a place where everyone else HAD done their due diligence.  It was the brutal truth.  I never forgot his words and his delivery…….he was 1000% correct.

WE don’t belong in a place where everyone else HAS done their due diligence.

And the brutal truth is that we MUST keep teaching ourselves so our kids keep teaching themselves.  We MUST do our due diligence in diabetes education. We MUST pass it on to our kids.  They MUST learn to do it for themselves as they get older.  Make sure they are ready.  If you are NOT READY…..do you really expect them to be?  Because if you don’t know, they never will.  SO LEARN.  TEACH.

You cannot BEAT something unless you know it inside and out.  Diabetes cannot win and you must do everything in your power to make that come to pass.  And that is a dialogue we can all understand; should understand.

I am a diabetes dad.

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

To fight for the right, without question or pause …
To be willing to march into Hell, for a Heavenly cause …
—–Man of La Mancha
Sometimes, it feels like Don Quixote trying to fight windmills all day with very little results (you can read the story sometime to understand that reference).  I was in my fourth bariatric center over the weekend.  Each attached to a major hospital.  Never with an appointment.  I introduce myself.  Ask to speak to the Doctor in charge.  I now have a new-found feeling for Pharma Sales Reps.

The front desk people try to dismiss me, that’s their job I guess, and I state that I am a writer, and when I ask, “Should I just write that your Doctor has no comment in my article?”  That, at least, makes the person find the doctor and ask what to do with me?

I tell them I need only two minutes.

So far, the Doctor has come out each time.  So far.

I choose large centers because all of them have advertising budgets.  I have heard all of their commercials.  Their commercial spots are clearly focused on the T2 market, that is their call–it is their advertising dollars, but they do not specify anything in their spots.  My request is simple.  Kindly put the words Type 2 in the diabetes spots they run.  I do not want to get into a long discussion.  I explain why.  I probably should try to accomplish more but why make it so complicated.  I choose the battle I want to have.  On this day, these are my windmills.

Four out of four agree.  One doctor literally gasps; “I NEVER even thought about it that way until you said it.  That kids with T1 would hear the spot.”  I emphasis and drive home the final point.  No surgery will make their diabetes ‘go away’.  Not yet, anyway.  She assures me that their spots will be changed and so will their literature.  While there, I hang a few posters in the hospital cafeteria from Get Diabetes Right, might as well get double the effort in one visit.

Last week I’m in my car with the radio on.  A commercial plays between songs.  It’s a bariatric center commercial.  One of MY windmills.  I know enough time has not gone by yet, but it has.  The diabetes, was replaced with Type 2 diabetes.  No one in the car but me……I smile.

You do not have the resources to raise money so you stay away from events, your call. Point taken.  But if we agree that there are 2 million people with T1 (depending on what number you want o believe) and add 4 million parents and if each just tried one education attempt a month; 72 million education outreach ‘touch points’ would happen every year.  You do not even have to create anything……go to www.GetDiabetesRight.org or the same name on FB and download posters on diabetes education and post them around your neighborhood.

Changing the world is not hard if many do just one thing.  One.  A lot of a little makes a lot.  Period.  I see a world with better diabetes education and THAT we can all do.  That way people will know a little more about diabetes.  Everyone THINKS of these HUGE GRANDIOSO IDEAS…..and yet, we have things right at our fingertips—-and we choose to do nothing.  Just don’t do nothing.

This is my quest, to follow that star …
No matter how hopeless, no matter how far …
Better education can be a reality if we get started; I know I’m not dreaming the impossible dream.  Join in.

I am a diabetes dad.

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

I have never tried to ‘fake it’ about what it is like to have diabetes.  I have always made it clear to my children that I DO NOT understand what they go through; but I have also spared them what we go through as parents.  Unless you are a parent of a child with T1 Diabetes, you have no idea. We are a select group.

There are sounds that occur on this roadway that no one would understand………..no one but those who live it.  You know those sounds don’t you?  As Simon and Garfunkel wrote, and sung, years and years ago…….they are the Sounds of Silence.

Hello Darkness my old friend, I’ve come to talk with you again…….”    You know these sounds.

They happen, usually, between 1 am and 4 am.  You are sitting by yourself.  You have treated your child and going back to sleep is just not an option yet.  Either you have to wait to re-check; or you are just too wired to return to your bedroom.

You are sitting in the kitchen, dining room, or living room.  There is not a sound…….but there are plenty of sounds; that only we as parents know.

The ticking clock.  You find yourself staring at it, as if the ticking sound is talking to you.  Reminding you of things that you need to do.

The humming of a refrigerator or some other appliance.   For some reason no one hears it during the day but you hear it now.  The sound sings to you a soothing peacefulness.  How could an appliance comfort you……..only a parent at 3 am waiting for blood sugar to rise from being so low would know.

Cars to drive by at night.  A million cars go by your house during the day but at night when they pass, you wonder who the heck else could be a wake at this ungodly hour.  Not just be awake, but be out and about and you think to yourself; “well that’s silly”.

As you take a sip of whatever it is you are drinking (we always seem to grab a cup of something…..don’t we?) you hear yourself breathing.   Sometimes heavier than other nights.  The breathing makes us wonder about ourselves.  “I need to lose a few pounds”…”Wow working out is paying off”…”Where did THAT gray hair come from”…”why don’t those wrinkle creams ever work”…….these thoughts are usually shattered by the loud ticking clock again.

You take a look at the time, twenty minutes has passed.  Time to recheck and possible get a few more hours of sleep.  The sounds of the night will be there again tomorrow night.  They have become your friends.  No one understands that but those who are doing the same thing in countless houses around the world.

The houses where diabetes is the new normal.   The houses where parents are awake in the middle of the night.  The houses where the quiet sounds of diabetes are deafening, but friendly, to only those who hear them while alone…………..waiting……..yet, again.  No one else would ever understand.  Knowing what we know, may they never.

I am a diabetes dad.

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

Twenty Six Hundred kids.  I’ll say it again—-twenty six hundred kids.  Do you know what that represents?  That represents the amount of kids who applied for a college scholarship last year from the Diabetes Scholars Foundation, according to Mary Podjasek, President and Executive Director.

That means twenty-six hundred kids graduated high school last year who had diabetes, and those are the ones we only know about because they applied.  There’s many more I’m sure.  They are going on to college and they are saying; “take THAT diabetes”.

But here is the problem.  And it is a REAL PROBLEM.  Less than 50 kids received a scholarship last year and when I asked Ms. Podjasek if the only reason more were not given out was due to lack of money, she answered, “Absolutely”.  She continued, “Easily 200 more could have been given out.  They were that good.”

Hear that again;  OUR KIDS WERE THAT GOOD.

Do you know what a Merit Scholarship Winner is?  Merit scholarships are awarded:
*to identify and honor academically talented U.S. high school students
*to stimulate increased support for their education
*to provide efficient and effective scholarship program management for organizations that wish to sponsor college undergraduate scholarships.
Less than 1/2 of 1 percent of those who apply, receive what is commonly known as the toughest of the toughest to achieve in the USA.  The toughest.

And yet, there were recipients of that award last year, who have diabetes, who did not receive a Diabetes Scholars Foundation……….award.  Imagine a child with diabetes applying for a scholarship, from the only entity of its kind giving such scholarships, having the top scores, but not receiving an award because there is not enough money.

My dear friends, THAT FALLS ON US.

How many times have we heard that our children have been through so much in what they do, day in and day out?  They need to be recognized for what they do and it MUST BE NOTED that they do it despite/with/concurrently while battling diabetes and yet the only national organization that recognizes in the forms of scholarships for college; must say no.

Now hear me out.  I get it.  I really do.   I want everyone to fund the work of the DRI for a cure.  And someone else wants everyone to fund the work of the JDRF, the ADA, Diabetes Camps, Denise Faustman’s work, CWD, other Diabetes Researchers, or The Diabetes Hands Foundation and on and on and on……fair enough—to each their own.  I totally get it.

But I also think that we all can agree that if the ONLY place, on a national scale, where our kids living with type 1 diabetes can get a scholarship to colleges based on the fact that they are living with T1; is the Diabetes Scholars Foundation—-don’t you think we should all find a couple of bucks to send their way…….I mean really?

Don’t get that bottle of wine, that pack of cigarettes, that dinner in a restaurant, your nails done this week, that trip to a sports arena……..give it up—-just once and send a donation.

A couple of bucks!  Think about it, but more than that……here is the link, give something.

All of our kids have gone; or go through school……..if we do not give, no one else will.  Tomorrow you can go back to all of the other organizations you believe in, BUT THIS IS THE ONLY one of its kind that is available to all kids with type 1 diabetes to apply.  Two hundred kids NOT TO RECEIVE a scholarship ONLY for the reason that there is not enough money………..we can fix that…….we must fix that…….or shame on us all.

I am a diabetes dad.

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

I have found it a tad scary to think that there is an entire generation of people who have no idea of the meaning, ‘You sound like a broken record.”  I mean how would they know?  Records are achievements broken in sports, at the box office, and in other places where milestones are measured.  They are not a disc that spins and starts repeating over and over again once there is a ‘scratch’ on the record.

But the saying still exists; “You sound like a broken record.”

And that leads e to ask you, do you sound like a broken record?  For a moment, take a look at yourself through your child’s eyes.  And for this discussion, in particular, through the eyes of your child with diabetes.  How often do you tell them the same thing over and over and over again………know this; they hear you.

If you have more than one child, and as they arrive home from school, do you ask how the day was for each of them but when your child with diabetes comes home you ask, “What was your number?”  DO you do that just about every day? ——Broken record.

Do you ask your child if they are ‘OK’ (in that diabetes tone—you know what that is) as soon as they walk in the door from playing outside—-do you do that often?—–Broken record.

Do you constantly ask, “what is your number, honey?”—–Broken record.

Dads (not all), when you come home do you not ask your partner how the day was, or do you jump to; what was Susie’s numbers today?” Do that often?—–Broken record.

Moms (not all), when your partner arrives home do you hit them immediately with the incredibly bad day you had because of diabetes—-be careful—–Broken record.

What happens with the broken-record-syndrome ( a perfectly medically accepted phrase ………made up for the purposes of today’s article) is that after a while others will tune you out.  All teenagers are masters of this phenomena; as we were also.  But when it comes to diabetes, we have to be a bit more creative.

If you are now saying to yourself, “…..but I MUST make sure of…..”…whatever it is that you must make sure of; know this.  No matter how important the ‘whatever’ may seem to you, a constant barrage if the same thing done very often will result in the person hearing you less and less each time.   I am NOT SAYING you are wrong to care about your child’s glucose numbers.  I AM SAYING that the more you try not to always ‘do it’ the same way, the better results you will have.

When your child comes home from school, you will know the minute they walk in the door if you can wait an extra thirty minutes to ask them about math, recess, the kid your child has a crush on, or just about anything other than diabetes.

With your partner/spouse as well; of diabetes consume your lives……it will consume your lives.  Surprise them some time when you come home; “Do you need to get out for a while, I can hold down the fort if you want to……..whatever”……… it would be worth it just to watch their reaction.

My point is simple.  Diabetes has just too many important aspects in your life for anyone to be practicing the art of tuning you out because you suffer with Broken-Record-Syndrome.

You can rid yourself of this habit and it will take time………but trust me…….when you do, to those who hear you, your voice will be music to their ears.

I am a diabetes dad.

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

“An intelligent hell would be better than a stupid paradise.”
—-Victor Hugo
Well ain’t that the truth?  It is about time we come to realize that no matter how hard we try, if you are not part of this ‘new normal’ called diabetes, you just will never ‘get it’.  We have all heard the stupid statements over the years and unfortunately, the forecast for the future is stupid today, stupid tonight, with a great chance of stupid tomorrow.

The poster I have shared is from getdiabetesright.org—the webpage/FB initiative that Kim May (a mom from Texas) and I created and Kim’s ad agency works diligently to keep current; and it is full of posters that are full of education.  Perhaps not as edgy as this one but surely informative…..check it out.  More than that, hang a few around town.

Now I have stated hundreds of times that we might not be able to do anything about something coming our way, but we certainly have a choice what to do with it when it arrives.  And being face-to-face with a stupid or ignorant comment regarding diabetes surely falls into this category.

We can get really upset about the comment or we can understand that the comment comes from someone who….well…..just does not know.  But here is the question; how much did we know before we knew?  Think about that for a moment.   The fact that fate has sent diabetes to us, and we surely have become experts, how much did we know before it entered our lives?  To be honest, in this category because it DID arrive, I would rather still suffer from being stupid than becoming the expert with all of these years of experience.  That would mean both my kids did not have it.

–SIGH–

I know that ‘not knowing’ does not excuse the family members who should know better and hearing from Aunt Gertrude about how she lost her poor beloved poodle, Bubbles, to diabetes and how she knows EXACTLY what you are going through; for the millionth time, will never be ‘corrected’.  But quite honestly, we need to have a tad thicker skin when these occurrences bless our lives.  We really do.

For the better part of 22+ years that I have been ‘in this world’ (time surely flies when you are having fun, doesn’t it?), I have seen the understanding meter click nary a notch in all that time of people, as a whole, having any idea what we go through.

That’s okay because I do not know what they go through.  This is life and everyone has something so when someone says some really stupid comment to you about growing out of it, asking how much sugar you gave them, and if it is the ‘bad’-type of diabetes; let it go.  Because they will be back next week and I really doubt they will have learned a thing—–even if you tell them.  Case in point, Aunt Gertrude.

Remember this, those who know—need no explanation, those who don’t—-never will.  Really.  Know this.

You have bigger problems that need your attention.  Like watching your kids finishing off their Easter candy……..hmmmmmmm…….wait; your child has diabetes—are they even allowed to eat candy?

I am a diabetes dad.

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