It’s the Most Wonderful Time of the Year………..School Opens; of Course.

School Open T1DYears ago there was a fabulous television commercial for Staples.  The Christmas song is playing (sing along with me), It’s the most wonnnnn-derrrrr-fullll tome of year…..” and of course the camera pulls back to revel parents gleefully shopping for back to school supplies while showing the kids’ dour faces.
Click here for the commercial. 

That time of year…….School’s open…..kids go back…..great, right?  Well not really for us parents of kids with type 1 diabetes (T1D).  But it does not have to be so stressful for you and/or your child.

After playing Drone-parent (what used to be helicopter-parent–hovering; what used to be diabetes-police parent) all summer, your child heads off, a little taller, a little more mature, toward the red carpet for kids (stole that from a commercial); the first day of school.

Where most parents, who do not have a child with diabetes, look forward to the new school year, parents to kids with T1D add two new words to their lives……HIGH ANXIETY.

From a guy who watched two kids go through school (with one child through every singe grade since age 2) may I offer a few tips on the school year.

1. 504 plan.  If your child does not have one, get one.  This plan is not just for the everyday things, they are for the unexpected things as well.
Here is a copy of the one we used, amend as needed.
and MAKE SURE NO ONE TELLS YOU THAT THEY UNDERSTAND and it is not needed…..it is your child’s right.

2. Feel free to send a quick note to all of your child’s teachers (yes, even in high school).  Above all else make it an open line of communication to you.

3. First day/week is a mind blower for kids as well….when they come home, do not jump on them ‘asking about their numbers’.  Ask them about their day, how was it, what did they like etc etc….trust me when I say the ‘diabetes stuff’ can wait a while.

4. By now you should have made time for the nurse and given her all of your child’s supplies.  If not, call and ask her if you can drop off your child’s supplies to be kept in the health office.  LABEL EVERYTHING with your child’s name, and have back-ups.

5.  Relax.  Now if you just dropped your child off at college I will change relax to have a drink.  If you think you have anxiety in school and high school, just  wait until you drop them off at college…..but we will save that for another day.

School’s Open……..Drive Carefully……and I do not mean only on  the roads.  Enjoy.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

 

12,327,840 Minutes that Only a Parent of a T1D Child Will Understand.

refrig emptyThis picture is something only a parent will understand.  This is a picture only a parent could possibly grasp.  For the last 12,327,840 minutes of our lives, this door was our life-saver for our children since Kaitlyn was diagnosed on September 26, 1992 and then Rob on March 20th, 2009.  For 12,327,840 of the preceding minutes, this space in our refrigerator had to be ready to serve us at any given moment within that time span.  This space held the welfare of our children’s very lives.  This was the space where our ‘immediate’ diabetes supplies were both held and ready for Rob and Kaitlyn.

If you look real close, you can see faded letters from their names written on the clear plastic, but in a short amount of time, we knew which one belonged to whom without looking at the names on each.

As I opened it today, I just stopped and stared at the refrigerator door.  When Rob moved out yesterday, being the final one of our three kids to move out; his empty room had an impact for sure, but this space was both his and Kaitlyn’s; and THIS spot for immediate diabetes supplies has not been completely void of diabetes supplies in 12,327,840 minutes.

You can figure the amount of shots, and finger pricks if you want.  Opening this door was an eye opener for me.  All of our kids are now on their own.  As I think back, we can only set a foundation for all three of them; it’s up to them what they do with it.   For their lives.  For who they are.  For who they hope to become.  For how diabetes impacted the younger two directly; but all of us in some way.

But for 12,327,840 minutes there has been a lot of diabetes in that time frame.  I’m glad to have our refrigerator back; but dealing with diabetes, learning everything we could about progress toward a cure, and pharma’s bid to make better management devices, and stronger education for them to be ‘in the know’; I’m happier still that my kids’ got their lives back.  Diabetes is what they have, not who they are……we’ve all been working at that objective for the last 12,327,840 minutes…..and we will all continue…..until a cure is found.

In our refrigerator now; we have a glucagon kit and some juice boxes………..for when they visit.

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

If ‘IF’ was a Skiff, We Would All Be on a Boat Ride.

what ifMy mother used to say that saying all the time….still does in fact.  A ‘skiff’ is a small boat, and it actually has a few meanings;  the word ‘IF’ is not a skiff, and we are not on a boat ride……IF is a futile look at something that is already gone.  Gone, so stop wasting your time saying, if this….if that…..if only……if, nothing.

When something happens in our lives, and surely diabetes is one of them, it makes no logical sense to be wondering about all of the ‘ifs’ surrounding the diagnosis.  “IF” makes NOTHING go away and if anything, thinking in those terms only makes you frustrated because with ‘if’, comes ‘so close’.

I’m not close to anything; I have it, or I don’t.  If I don’t have it, or it’s not here; more work needs to be done to get the very thing that seems to be just outside one’s grasp; is how I feel.  Close is a relative term.   In some parts, close can be 5 miles, in NYC it could be inches!!!  Close is certainly not a bad phrase, but I would rather have something than something always being so close.

It’s like people who say someday…….Someday I’ll get there….Someday I’ll be rich….Someday, I think, is on the same skiff…..with “IF”.

It’s great to have dreams.  It’s great to shoot for the stars.  But one needs to keep their feet planted.  Change does not happen automatically and the best way to get to ‘someday’ is to stop saying ‘IF’.

Got an idea, go get it.  It will never come to you.

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

 

I am SO Scared.

scaredScared.
I am amazed how that reaction the first time we took Kaitlyn home from the hospital is still with us today.  But that word scared, has a new meaning than it did on September 26, 1992; when at the age of two, our lives were force-fed a new definition of normal.

People look at the word ‘scared’ as something horrendous.  Nervous.  Anxiety.  Fear.  The unknown.  We took that word fear and we turned it into something else.  We took that word fear and used it as a reminder of what we did not know.  It was the jolt we need everyday to get out of bed and learn something new.  Being scared gave us a new word……respect.  I respect the fact that a car is a hugely powerful machine.  I fear what it can do but my respect makes me learn what I can about it.

Diabetes is no different.  Here we are over 23 years later and I am still scared.  I still have that respect that I need to know, and do, more.  I have been active in so many diabetes areas and being scared has allowed me the opportunity to look, re-look, and re-look again, at not only what I do in my life; but it also makes me do the same at the places and initiatives I choose to be part.  I have to grow in my knowledge and so do they.

Whatever you do in this journey of diabetes; never be afraid to challenge yourself.  I remember when the insulin pump first came into ‘everyday’ use.  Everyone talked about how it was the be all and end all.  The closest thing to a cure.  The excitement and anticipation were incredible.  I thought my promise would be fulfilled to my daughter about finding a cure.  I was ready.  I cannot tell you how big the excitement was back when.  Don’t get me wrong, the pump is a great device.  It’s a GREAT tool for those who choose to use it.  But I quickly learned, that it was what it was……a great tool.

For me, I need that search for a cure to continue.  We are not there yet. And until such time that we are, I want that search to continue.  I have heard the same stories of a cure being around the corner from people for a long time but you know what……it’s not their words as my reason for being in this fight.  I started out for one reason, and now have two.  My two children.

I have seen devices come and go.  I really have.  I have never heard anything about anything that I took at face value.  I investigated with an open mind.  I was, and am to this day,  ready to change in a moment’s notice to any place that gets me to the promise land the quickest.  Because I’m scared of this disease.  I’m so scared that the status quo is, and will never be, good enough.

I challenge those around me.  I challenge those I know and love.  I challenge my colleagues.  I challenge the researchers I know.  I challenge those who are within the sound of my voice.  I challenge my kids who have diabetes.  And if you take all of those challenges and multiply them by a hundred, it won’t match the challenge I give to myself……..every day.

And the reason?  Because diabetes does not care.  It does not care who supports what, it does not care about discussions in the diabetes community both professionally and socially, it does not care whether there are good medical teams or bad medical teams, it does not care if you are part of the biggest organization or you solely go and tell people one-on-one, diabetes……just does not care.

No management tools, devices, ideas, events, friends, colleagues, promises, advances will ever replace the end goal.  I appreciate them all….but they are but mechanisms to keep our kids healthy, and albeit crucially important; it’s not why I am in this battle.   They are not what I promised my daughter, and then my son.  I promised I would not stop until there was a cure.  A cure can mean different things to different people but I KNOW what it means to me, and we are not there yet.

And for me, diabetes scares me.  Honestly, it scares the living hell out of me. And as long as I’m scared; I will be driven to make a difference.  Because as much as diabetes scares me, my desire to see it ended forever trumps everything else.  My desire to get there gets even stronger even 23 and a half years later.  My kids deserve nothing less.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’. – See more at:

Do You Let Guilt Close Your Road???

Road closedLet’s be very clear on something, that spreads like wildfire in our lives, when it comes to diabetes.

Guilt.

Guilt is a very dangerous phenomena in our world and we all need to be very careful at its existence.  We will do some things wrong.  Our kids will do some things wrong.  But if diabetes was not part of your new normal, it would not have this incredible opportunity, according to our own selves, in screwing up.  The result is that mistakes made; leads to guilt.

Now I don’t have the power to absolve you and I wish I did, but I do not.  I cannot make your guilt go away with a wand that says, ‘poof’, and your feeling is gone; but I can tell you that you are blaming the wrong entity.  The blame falls squarely, and fully, upon the shoulders of this disease.

I don’t care how small or how horrible the results were; the simple truth is, it’s not your fault.  I have seen incredible parents just fall apart into a pit of despair, never to return, because something happened in their diabetes world for which they cannot forgive themselves.  I have said a thousand times that no matter what happens in my children’s lives, I have to be able to look in the mirror and ask myself if I did everything possible to beat-up this beast called diabetes.  After that, it is in God’s hands……plain and simple  (according to my beliefs, yours may surely be different).

That is not a cop-out or a shift of responsibility; I have seen too many really great people crumble under the belief that THEY did something wrong when in truth, it’s the nature of this disease.  The blame is on diabetes.

Good moms and good dads, falling apart because their child’s life with diabetes took a bad turn.  And some turns are even irreversible.  In as much as I cannot take away your guilt, I’m sharing that if you are dealing with something that you know nothing about, and are doing everything you can with what you know, how can you be guilty of anything that transpires.

Ever talk to a parent after their child is in a car accident?  In many cases the same guilt appears.  Would have, could have, should have; become very popular self-means of placing blame on our own shoulders.  But it’s just not correct, albeit understandable.

If you feel you need to learn more, than do so.  Education IS THE equalizer in diabetes.  Learn all you can.  But also know that this disease is a beast.  And if this incredible guilty, helpless, feeling is monumental with you, just imagine what your child feels.  How many mistakes do you think they beat themselves up for every singe day?

Again, I cannot take away how you feel, but cut yourself a break because you need to wake up tomorrow and get through the day. Diabetes does not take a day off but also does not deserve to lay guilt on anyone.  It has done enough damage already, do not absolve diabetes from any of the blame it so richly deserves.  Every single day starts out the exact same……with just one step.  It’s up to you to take the steps afterwards…..if you don’t, diabetes wins every time.  Don’t let it.

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

Diabetes and Mental Health……Yeah, that’s Right.

Diabetes aheadThere is complication of diabetes (well, diagnosis of any disease, really) that is as real as low blood sugar…….and that complication is depression.  As Dr. William Polonsky once said, “I would be concerned if someone does not show some signs of depression after diagnosis”.

I have written about this before but it’s always worth repeating and today I want to add something to what I have discussed in the past. It is crucial to realize that just as your body needs a treatment to be physically healthy so, too, does your mind.  Just as the body needs tending to when disease hits so, too, does the mind.  Do not make the mistake that it I something it’s not.  It’s there.  It’s real.  It needs to be tended to.

And it’s okay to say it.

I know many people do not talk about it and surely they have the choice to keep it to themselves but do not make the mistake of suffering without help.  If you want to seek help without anyone knowing, do so; but do not leave it alone.  My friend Gary Scheiner, and AADE Educator of the year for 2014, informs me that Integrated Diabetes Services has someone on staff who does teleconferencing in this field, so no matter where you are, you can get help.

Gary is the founder of this medical outreach and as in all cases, do your own homework, but I can tell you that Gary is incredibly respected in the world of diabetes and a powerhouse of knowledge and resources.  My point is not just how great Gary is (which he is), my point is that if they have some sort of tele-means to help someone with the psyche side of diabetes, you should know that there is another means/tool out there to help you.

And here is the addition I want to make today. Jeep an eye on your self.  Once your child is diagnosed, do not just think it is s/he tat may need to talk to someone.  Keep any eye out for you.  A diagnosis hits the entire family.  It hits it hard.  If you need tou speak to someone, find someone.

With the help that is available out there, no one should be alone in the middle of an ocean.  If you find yourself not being able to be part of the mainstream as you were before diagnosis, please find some one to speak to about it.  If you are truly struggling, it does no help to your child if you are not yourself.

You would not be the first person to seek help due to a diagnosis, and you will not be the last.  But do not be the one who will think ‘it will just go away’.  It might not.  Be sure.  My dear late Richard Rubin made very clear to me how important the psyche side of diabetes is and how much it is a complication.  You would never think twice about the complications of a low blood sugar.  Don’t think twice about the mental health complication of diabetes either.

Diabetes treatment is important……for all complications.  Depression is, but, another one that needs to be dealt with full energy.  Do it today.

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

 

 

 

 

NEWSBREAK: Missed Dx of T1D Claims Another Young Life….We Must Care Harder!!

Angela newSigh.  Yes my dear friends, it has happened again.  And it will keep happening until it sinks in that the missed diagnosis of type one diabetes is so real….and it kills.  It injures. It is unnecessary.  Even in the story below, the Doctor interviewed does not even mention the flu-like symptoms as a warning sign that just took this young lady’s life.  I placed in bold the fact that Angela’s mom had taken her in to see what was wrong and yet, again, a child was sent home.

I hope you are as tired reading about these stories as I am about writing about them but I share this, I swear with everything inside me that I will not stop until we change this paradigm.  I now add Angela to my pledge of not stopping until the world hears A Child’s Cry for Change.  R.I.P. sweet angel, your silenced voice will be heard again; of that you can be sure.

This story is copied from the WKRN Nashville ABC affiliate on News 2, the link follows the story.
MURFREESBORO, Tenn. (WKRN) – A Murfreesboro mother took vacation to spend spring break with her five children, but now she’s planning a funeral for one of them after a common but treatable childhood illness.

Angela Elizabeth Robinson, 11, was diagnosed with Type 1 diabetes too late, and she died suddenly over the weekend.

Mother Darla Robinson flipped through a tiny book of memories of her daughter Angela Elizabeth, reflecting on her life. “She was a sweet girl, enjoyed being playful and listening to music,” Robinson said.  She said there is comfort knowing Angela lived her 11 years of life to the fullest.  “That’s the type of person who was, very kind, enjoyed life,” Robinson said.

For the most part, Angela hadn’t had any major illnesses until now.  She was a normal healthy 11-year-old up until Monday of this past week,” Robinson said.

That’s when Angela became sick and began having muscle spasms.  Her mom took her to the doctor Tuesday of last week where she was prescribed some medicine and told her to drink plenty of fluids.

She had gotten worse by Wednesday.

“I went to go check on her and she didn’t respond to me so we had to get her to the hospital as quick as possible,” she said. “She was diagnosed with on-set juvenile diabetes and she went into diabetic ketoacidosis and was unable to recover.”  Her blood sugar was 1,600 and doctors couldn’t get it down. “She died at Vanderbilt hospital at 2:57 Saturday morning,” Robinson said as she teared up.

Type 1, or juvenile diabetes, is more common than you may think, and can develop quickly, according to doctors.  More than 200,000 cases were diagnosed each year in the United States.

Dr. Adam Childs with TriStar Family Medicine, located on Medical Center Parkway Murfreesboro, said parents know their children better than anyone so pay attention to the warning signs.

“What we watch out for is excess thirst, frequency urination, having a child that’s very hungry often, but despite all that, that child may be losing a lot of weight,” Childs said.

Childs said other things to watch out for if a child is fatigue, or moody.

There is no cure for diabetes, but it’s easily treatable.

“It’s important to get it treated because if you don’t treat it, it can have some very severe and devastating consequences,” the doctor said.

The Oakland Middle School student had hoped to one day to become a doctor to help other.

“Even though she won’t fulfill her dream of being a doctor, she did fulfill at least that part of the dream, to help some other child out there who may have been in need,” Robinson said. “One of her organs, her pancreas was donated to a doctor who is doing research in the area to hopefully find a way to fix the problem.”  Robinson said she wasn’t prepared to bury one of her children and she doesn’t have life insurance. The Oakland community has come together and started a GoFundMe account to help the family with funeral expenses.  Click here to donate.
(—-END OF STORY AS IT WAS PRINTED)

So what gets you to take a step, a baby step, in helping to stop this from happening.  If we do not cry out as a unified community……I assure you no one else will in the same way we would, could, should.  I assure you of that point!  Don’t do nothing….care harder.

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

This is the link for the entire story as it appeared on the WKRN website; http://wkrn.com/2016/03/30/mom-plans-funeral-for-daughter-days-after-being-diagnosed-with-diabetes/

NEWSBREAK: Something Great for Kids Who Have T1D!!!!!

Coco ImageMake no mistake about it, I am probably the biggest fan of Coco as she deals with her diabetes.  I just cannot applaud LOUDLY ENOUGH for this Lilly Diabetes/Disney Collection on T1Everyday Magic.

WOW!!!!!!

Today I’m informed that Go, Team Coco! has been made into the newest digital version of Coco’s adventures and is available RIGHT NOW….just click the picture.  Coco a monkey in the Disney World of characters—–and she has diabetes, but do not misunderstand; not only can Coco do what she always could do but she does it with all of her Disney Character Friends who help her along the way, including the one and only Mickey Mouse.

Make sure you make this point very clear when you read to your child, MICKEY MOUSE’S Good Friend, Coco, has diabetes……………….just like your child.  A great book to read together with siblings, relatives, and friends too.

In this world of diabetes, some companies GET IT RIGHT!  BRAVO and BRAVO to all on the creative team at Lilly Diabetes/Disney and please SHARE THIS NEWS EVERYWHERE of the newest Coco/Disney story ready to be read TODAY!!!!!

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

Do You Dream About Diabetes…….NOT Existing????

Sheep DreamsDo you dream?  I do.  All sorts of wonderful places and events.  Some a bit scary but all adventurous. Last night was a different dream for me and I’m not so sure I ever had this dream before.  My three kids and I were walking in a field of yellow flowers….I’m not sure what they were, but they were about waist-high and very yellow.

As we walked in this field, Rob and Kaitlyn kept asking me to check their bold sugar and I kept asking them, “why?”  After they both told me so many times that they were worried that their blood sugars were plummeting, I kept telling them; “…but you don’t have diabetes anymore…..”.  They would run off only to return a few minutes later asking the same thing.

Okay you dream-genies out there, analyze that and let me know what you come up with that is deep in my subconscious.  When we turned to return home. I woke up.  Not so sure I had that dream before.  I dream about a lot of people I have known in all sorts of experiences like us flying together.  As in flying with no plane……just flying around in the warm sun.

I like dreams.  Share a reoccurring dream of yours….what is your favorite dream?  I have many more dreams than nightmares…….I guess THAT is a good thing.  Dreams take us away to lands that only become a reality when we close our eyes.  Sure wish that dream of ‘them no longer having diabetes’ becomes a reality some day.  It would be nice not having to experience that only when my eyes are closed.

That would be nice.

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

How Many Children’s Death Need to Happen??????

Tombstone Care HarderI’m not exactly sure why this is such a problem; I mean I really am unsure.  Do we need a celebrity’s child to be stricken to bring awareness?  Is not the amount of death and illness that has happened not enough?  I’m dumbfounded that the death of even one child, which was absolutely preventable, is not considered ‘enough’ to try to fix this situation.

Recalls, choking pieces,  negligence leading to harm…….the world becomes up in arms over so many things when they know the situation can be changed.  Why is not missing the diagnosis of type one diabetes (T1D) included.

In my Town Hall Survey, (taken last August) let’s just say the information is not exact science but is it not surely enough to take notice?  Over half of the 500+ respondents who were in diabetic ketoacidosis when diagnosed had been to a medical professional prior to being hospitalized and the diagnosis was missed.  Four children had brain damage and five children died.

Why is that not enough?

In a subset of any kind of population under examination; almost 2% ending up brain-damaged or dead is not enough to delve further?  Okay, I admit it, I am not statistician expert; it’s possible the stats are not completely scientific….prove me wrong?  Prove me wrong that this is not a problem and I will shut up and go away.

But I have hugged parents who have lost their child to a T1D diagnosis being missed, explain to them that it’s not important enough to figure out what to do. Imagine if it were your child….what would you do to change it?  Illness, Brain damaged or death just because someone did NOT THINK to do a finger prick or a urine test.  Seriously?

What will it take…….what will you do?  I’m just so hard pressed to think that if a legislator; or a president of a major diabetes company/organization/entity; or a celebrity lost their child due to undiagnosed type 1 diabetes……the response would be so cool in nature on trying to make a difference as it seems to be;  “Not my problem, why care?”

We all need to “care, harder”.

Well I’m sorry that many of the kids who died, or were injured, or ended up hospitalized due to someone not ruling out type one diabetes were all just regular kids and not the kids of people who HAVE THE ACTUAL POWER TO STOP SOMETHING SO AVOIDABLE.

But they were kids who were somebody’s entire world, and now they are gone.  Please tell me, why are their silenced voices not enough.  Why does no one hear those children’s cry for change?

Why?

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