What a Super Hero Looks Like

  I LOVE THIS PHOTO.  Some pictures need no captions and if ever there was a photo of a fearless child…….this is it.  Let me introduce you to Helen, a 5 year-old from Texas who loves to dance and was diagnosed just over a year ago.  The photo was taken by Ivy Reyes, a friend of the family and a professional photographer (Ivyreyesphotography.com).  Helen wanted to show off her Dexcom and her Omnipod between performances of her dance recital.  They help her live her life to the fullest.  This is not a commercial for them and any management tools that help our kids fight this monster successfully…….are the tools needed……….just as all Super Hero would need.

Take THAT diabetes!

There was a sculpture made a few years ago entitled “Fearless Girl” which I wrote about once, talk about life imitating art.  Time and time again I have written that not all super heroes wear capes, Helen fits this description 1000%.  When I spoke to Trena, Helen’s mom, she informed me that the look in this photo of Helen’s “here I am and I am not afraid of you”, is exactly how Helen takes on life each and every day.  Playing t-ball, running, playing outside, playing with her big brother, and playing with her dad at his fire house are just some of the ways  this young lady ‘takes on her diabetes’ and allows it to stop her……..from nothing.

So many times we read about the singer or sports player or professional ‘whatever’ who continues life while dealing with their diabetes.  Little Helen sends a message as well, and as loud, and as clear, as the one who takes the snap of a football on any Sunday in the NFL.  “Diabetes is what I have and not who I am”.

Helen is just as much a hero as anyone else who lives with this disease day in and day out and allows diabetes to stop them……from nothing.  With dad a fireman, and mom a nurse; Helen has had much training in her young life what a hero looks like, and on this day she clearly, and undeniably,…….shows us.
I am a diabetes dad.
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Mother’s Day……..Wishing a Good One is Not Enough; Thank you!

I consider myself someone who is, and has been, fairly active in all of my children’s lives; and have certainly been active pertaining to the youngest two and their diabetes.  And in anything that I have done, I have always and in all ways known that it pales greatly to what their mom has done, and continues to do, in all three of their lives.

From the first day Kaitlyn was diagnosed in 1992 at age 2, her mom did not merely learn about this disease, she absorbed it.  It was as in those super hero films when we see the super hero ‘step’ into another to become that persona.  From day one, Kaitlyn’s mom stepped into the diabetes monster so they would become one and she would control it.  She gave up more than a career, more than countless sleepless nights, and more than pleasantries; she gave up a portion of her own self to make sure she would control this monster.

And as sweetly as she controlled her voice when she spoke to Kaitlyn growing up with this disease since age 2,  make no mistake about it; she was instilling in her daughter, and later her son as well, the strongest backbone that any child could ever hope to grow in doing battle with a monster.

Jill is not a tall woman by any means, she has these big round blue eyes and this high-pitched voice that upon meeting her you would think she is one of the sweetest people you will ever meet, and that would be correct; but so much so that one could easily make the mistake thinking that her sweetness is a weakness.  When in reality, that is absolutely and completely 100% a mistake…………to ever think.

I have watched, now, for over 25 years as she has done battle with this disease.  She arms herself better than I ever could and she has tamed this disease more than I ever hoped to.  Whatever I may have done, or others think I have done in this diabetes battle, I do not come even close compared to what she has meant in the lives of all our children but specifically, our two with diabetes.

She not only taught herself in a time that there was no computer to just turn on and absorb, she also found time when there was just not enough hours in a day.  Plain and simply put, she gave back to our kids the very life that diabetes thought would suck dry.  Diabetes thought she was as weak; as she was sweet.

Big mistake.

Like many moms, when it comes to their children, she is an unstoppable force to be reckoned with when endangering her young ones. She absorbed the pain and cried countless tears so her children’s would be less.  She stayed awake so her kids could sleep.  She has not only perfected the very act of protecting them; she has fiercely empowered them to stand on their own two feet to be the best they could be and she also instilled in them……..diabetes would just not do in their lives.

And it hasn’t, and it won’t.

So this week is Mother’s Day.  Somehow merely wishing Jill a Happy Mother’s Day is nowhere near enough, I feel obligated to also thank her.  Because in addition to being an incredible mom, she taught our kids how to live.  She taught them that diabetes just cannot do.  She taught them, by example, that education is the absolute equalizer.  She taught them that they have to do everything they can to stay on top of this disease every day, and she taught them that they have to do all that, and pray that they are kept safe.  She taught all of our kids much about this world.

When I reflect back on our lives, I realize that all three of our children are more than I could have ever hoped.  I know I played a role in our kid’s lives as most dads do; BUT I also know beyond a shadow of a doubt that our kids have embraced life with the strength, humility, gusto, and backbone of a superhero……..because of their mom.

Thank you for that, Jill, and Happy Mother’s Day.  And Happy Mother’s Day to all of you who taught men like me that clearly all super heroes don’t have, nor even need, capes.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

If One Doesn’t take Bad Advice……Leaves No One to Blame.

Clearly the way I was bought up, is much different from the way we bought up our own children, which I’m sure is even much different from today’s skills needed for parenting.  How much of the way we were bought up plays a role in how we deal with the diabetes in our own house?

I’m shocked when I read how much advice is given on social media to those who merely ask people’s opinion.  There is no filter, or further questioning, to ensure the advice being given is actually sound medical advice.  I find this increasingly alarming.  Growing up, we NEVER took someone’s word as Gospel-truth.  I actually read, recently, ‘you should do what you think is right for your child and not what the doctor says’.

Really?  Wow.

Now wait a second.  No one knows your child more than you and I’m not bringing into question that point.  But for someone to ‘just put out there’ “….and not do what the doctor says….” is as much irresponsible as it is dangerous.

At the end of the day it’s up to each person to make the right decision based upon all of the possible knowledge/input one may attain in making sound medical decisions.  I’m also not saying that there have been times that a decision from medical personnel should not be questioned.  What I’m saying is be wary when someone makes a blanket statement as absolute truth who is no position to make such a declaration.

Growing up and during the summer months, I left my house shortly after sunrise and was not expected to be home until just before dark.  No cell phones.  No contact.  I think it’s a pretty safe bet to say that doesn’t happen so much anymore.   One did not ask their neighbor over the backyard fence about how to treat a sick relative at home either.  Today we are connected at every turn and seeking someone’s opinion and/or help is at our fingertips every day.  And when dad told me something and my inquiry into ‘why”, it was met with, “Because I said so…..”, well such is not the case anymore.

Just make sure that quick availability……doesn’t give way to bad advice.
I am a diabetes dad.
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They have T1D—-They Should NOT be Disciplined on Top……Really?

My child threw a tantrum today.  Threw toys all across the room and when I check the blood sugar it was 120.  My question, what else in diabetes would make my child act this way?

Perhaps, nothing.

Always ask yourself if the behavior your child displays is indeed ‘the fault’ of a glycemic (high OR low) reaction.  Sometimes the way your child is acting-up is……..well……your child acting-up.  Do not be afraid to call it what it is……..behavior.

What do I do when my child with diabetes acts up and misbehaves?  What would you do if your child did not have diabetes.  Our kids with T1D are not fragile crystal.  They will not break if they are treated……like children.  Do not be afraid to discipline your child with TD1.

We cannot say that we want our children to be like other children in every other aspect but when it comes to discipline, we feel that they ‘deal with enough in life’ and give them a pass.  Now I’m not speaking of those who give a pass for certain things and that is yours to decide, but it’s the normal everyday behavioral patterns that must be dealt with when diabetes does not enter into the equation.

Of course the timing of the behavioral correction IS important.   If your child is extremely high or low that may not be the best times to try to discipline your child and make a point, as they may very well not have any idea what is going nor to what you are referring.

It’s such a balance, and it’s never easy, I know.  If you tell your child to put their toys away and they do not—-easy call.  If you tell your child to make sure they remember to not leave their diabetes bag at school, yet they do day after day after day; what’s the call?  DO you punish them for not listening?

Sorry I cannot give you this answer but it’s something you must constantly ask yourself.  Discipline should not be removed from your child’s life just because they now have T1D.  These parameters are so important for your child to grow.  Just another thing in the parent how-to manual that is rarely referred to………..but always needed.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

 

 

Siblings Day…..I Wrongly Associate with More than One T1D Child

It is National Siblings Day.  When I first heard this mentioned many years ago, in the early 2000s, it made me think of my own brothers and sisters.  Counting me, we are six in number with JoAnne as the oldest and myself as the youngest and only 7 1/2 years among us all with no twins made us pretty unique.

Years later this phrase of ‘Sibling Day’ had a different meaning when our second child was diagnosed with T1D.  Talk about unique.  Everyone refers to the new normal when a child is diagnosed, but when 2 out of your 3 children are diagnosed, ‘normal’ takes on a whole new meaning.  Areas once reserved for some diabetes supplies are given entire shelves.  Some supplies that took up shelf space now own half a closet.

I really do not know why I associate a day put aside for sibling love; and made it about having more than one child with diabetes, but I did.  Anyone else do this?  I’m SURE it’s wrong but in my mind I have associated the two for years and I have NEVER been able to shake it.

Having two with T1D makes it exponentially tougher and made me always respected my oldest, the one who was not diagnosed, because no matter how hard we tried; diabetes, at times, took over.  Although it surely helped that he was 20 when his brother was diagnosed and to his credit his only concern was his little brother’s welfare.  It’s a sibling dynamic like few others I have known over my life.

I was told once that if you, your spouse, or one of your children had T1D that the
risk of another child developing type 1 diabetes becomes 10 to 20 times the risk of the general population, but still very rare.

Sure, this is the lottery we win.

What did not change, and what cannot change when things like this occurs, was/is our attitude toward this disease.  Look…..no other way to put it; it just all sucks and for all the reasons we all know and in our case—-times two…….and in some families; times three and one family I know it became times six……Imagine having 6 kids with T1D?

No matter the circumstances it was about staying positive and moving forward.  It was about ‘doing’, together as a family. The dynamic among siblings is an interesting phenomena to observe.  I’m pretty sure many siblings have used the phrase, “we are a dysfunctional family, but we ARE; family”.  And it’s the ‘family’ structure all siblings need to hold on to. It’s the best of times to remember and also the strength needed in a storm.   At some point the parents will be gone and all that will be left to carry on the traditions, the family values, and even the family name will be siblings.

My kids probably talk to each other more than most, and that always makes me happy especially because I know cases where some do not talk at all. I still wish that National Siblings Day meant to me, what it DOES MEAN and is supposed to mean to everyone else. Desmond Tutu once wrote,  “You don’t choose your family. They are God’s gift to you, as you are to them.”
Amen!  They are…..realize it…..Happy National Siblings Day.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

 

Ever Get Annoyed by the Question…….Whose Fault is it that T1D Came to Your House?

I’m so, so sorry that I gave you diabetes.  I thought it was not me but I paid to have that DNA testing service having to do with ancestry run MY DNA and it game back that the lineage of T1D  on my side of the family goes back to the days when a guy name Christopher Columbus sailed a few ships and landed somewhere around here.

The testing took some of my DNA (I will keep from where it came to just me, its pretty private) and I paid $3275 and it came back——732 relatives had T1D…..so it’s all my fault.

Sounds a tad unrealistic, don’t you think?

And yet I constantly hear from people who share the guilt of thinking they are at fault or even MUCH MUCH WORSE, some dim-wit relative ‘from the other side’  finds a morsel of information and all of a sudden they are the new authority on who ‘is to blame’ for the mess you are now in with T1D now in your residence.

Absolute POPPYCOCK.

Even if……EVEN IF……you could be absolutely certain (which you cannot) which was the gene pool that got you to where you are………what difference would it make.  You would have to then go out and find out what triggered it; of equal importance.  Good luck with that also.

Blame.

Pointing figures.

Hidden figures.

Who cares.  But what if……what if…….what if……..what if……what if……
Tell them that DiabetesDad said to “SHUT UP”.
Then look at them and share that you are not so sure where the T1D came from but (stare intently now) you sure know EXACTLY where the stupid gene comes from.

It’s okay because I can promise you that we will have a cure for T1D long before we find a cure for stupid.

Having a little fun today to teach this: It does not matter what you discuss on HOW something happened; it matters what you are going to do with it now that it is here.  And when someone has an opinion, tell them to put that energy to good use and do something THAT DOES MAKE sense like running a fundraiser for education, help, and/or a cure.  That would be better than shooting their mouth off on something they know little, or nothing, about.

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

As Long as They’re Healthy………Are They?

How many times have we heard the phrase, “Well at least they’re healthy”?  Does the answer just roll out of your mouth or does it stick to the roof of your mouth before the words pour out?

To be completely honest with you, I have NEVER been able to answer this statement without it rolling around in my brain for some time after I hear it, and worse when I say it regarding my kids.  I mean, outside the diabetes?  With diabetes?  Are they ‘healthy’?

What is healthy?  How can one say, “….. well outside my kids’ diabetes, yeah they’re healthy” is as awkward as it sounds.  Should we acknowledge the inclusion; or the exclusion of a disease that so many count as horrendous?  So many more move on as if it doesn’t even exist.  Remember the old sick joke, “Outside of that Mrs. Lincoln, did you enjoy the show?”

I’m not trying to be flip, t’s just that I do not know how to separate my children’s attachment to this disease answering a question that for the most part is asked as a rhetoric, ‘How are you?”

How do the people who actually live with diabetes feel about this question.  When people ask you, “How are you?’  Do you just say, “Fine”.  But more than what you say out loud, how do you feel inside when asked that question?  I would love to know.

I’ve had asthma for years.  I cannot go anywhere without my inhaler.  But when someone asks my, I never give it a second thought; “I feel fine”.  There is not a ‘but’ or ‘if’; if I feel fine I say I never giving asthma the time of day—-not even a thought.

Is diabetes thought of in the same way?

It makes the education of diabetes tough when most look so good living with it and I have written about his before.  As I stated, I do not have an answer for this, on this, or about this?  If you have diabetes………………….are/can you be considered; healthy?
Thoughts?
I am a diabetes dad.
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My New Hero……..Is My “Maine Man”!

One of the greatest thing about the journey I am on, is the people I get to meet.  Not too long ago, I was asked to speak in Maine at the P-Pods annual event.  What a wonderful crowd.  After I spoke, I joined my friend Aaron Kowalski (who also spoke) from JDRF on stage for questions and answers.

Almost immediately a young man raised his hand, many call him Marky.  Marky is a young man who loves the New England Patriots and superheroes.  Imagine his delight when he had the opportunity to have dinner with Spider-Man & Captain America at Universal studies.  I called upon the 9 1/2 old and he asked; “I would like to write an article for your blog.  I read it and like it.  May I?”

I looked right at him and he was 100% serious.  I stated, “I have never let anyone in as a guest blogger before………”

Marky stood his ground looking at me and he did not move……..As I saw the determination on his face I thought to myself……”that changes now”.  Okay Marky—-you will be the first guest blogger I have ever allowed space; so without further adieu, I present the article from my new hero……..who needs no cape.

On my first day of fourth grade, I was excited that I was going to learn new things and that my classroom was finally upstairs!

I was a little worried too.

I had lots of new classmates, a new teacher, and a new ed tech. I know lots about Type 1 Diabetes, but was worried THEY might not. What if they didn’t know about high blood sugars, low blood sugars, and why I have extra snacks? What if they thought my pump was a gameboy? My phone was a regular phone, and who knows what they might think my meter was.

When I entered the classroom, after morning recess, I got to pick my seat. I wasn’t thinking about choosing a seat next to my best friend. I was thinking about choosing a seat next to my ‘ed tech’; in case I had an emergency. I hate it when my alarms go off in class and if I sit near my ‘ed tech’, I can make my alarms go bye-bye faster!

I ended up choosing a seat next to a new student. I soon realized she got distracted by my alarms and when I checked my blood sugar. I sometimes forget not everyone understands T1D. My teacher let me give a T1D 101 lesson. Unfortunately, right before my lesson I pulled my pump site out and had to leave early. We rescheduled for the week after. After my lesson we also had a Q & A session. It is important that my friends know about T1D so they can help me in an emergency.

T1D is a lot of work but, I have lots of people who can help me.

—–Marky, from Maine.

Thanks Marky
I am a diabetes dad.
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Diabetes Under Siege…….Only WE Can Change it!

Under SiegeIf you look around the world today, you can easily see that there are many voices rising for many injustices.  Injustices, in some cases, which have been occurring for decades; if not centuries.  Speaking for myself, I’m glad to see the dial of injustices just begin to move.  Women are as equal to any man and coming from the home/upbringing I came from, I never felt differently.  When a black person cannot ride down the street and feel safe merely because they are in a ‘wrong neighborhood’–there is something wrong.

All combinations of these injustices come into play but the important thing that I have seen, is that the voice to equalize wrong doing is loud and clear.  People and media who thought they could say anything and do anything are finding out that is not the case so much these days.  It needs to be honest and not merely to capture readers.

I’m encouraged now more than ever that new voices will move to the front of the pack and be heard.

Now my writing today is not about politics and the world around us.  After all, ours is the diabetes world, right?  For over twenty-five years I have heard so many injustices that those in the diabetes world feel.  Real problems.  I also feel like we move on from one problem to the next pressing problem, without first finishing the battle at hand.

Prices of insulin are still way too high.  People are still becoming gravely ill and dying from the missed diagnosis of T1D.  The world at large still does not understand the difference of diabetes…..and some actually believe one is lesser a problem than the other.  Medicare and Medicaid needs help and guidance.  And by and large people still are under the belief that everyone working in their own silo, and not united, is the best way to work……but is it?

If you follow the world lately, the two words that come to my mind more than any other are the words, “UNDER SIEGE”.  The groups of people demanding action is because they had enough…..’we are under siege and it stops now.”  The message is delivered and it is continued EVERYWHERE.  It becomes one voice.  Loud, clear, and most importantly: Unified.

It’s now time.  As long as all diabetes groups spend their efforts in 32 different arenas, no one will hear us.  All diabetes groups can still do what they need to do; advocacy, college life, fund research, fund projects but why can’t there be an underlying theme each year.  Remember the “Year of the Child”.

We are under siege but there are so many causes that no one cause is really moving the needle……is it?  Why can’t 2018 be the year Insulin costs are examined completely.  Not for a press release how wonderful an organization is looking; but imagine for REAL action.   If every trip up to Washington is about this topic, if every event is attached to that message, the message would be loud and clear.
Imagine:
“XYZ Charity held their walk today to help find a cure but Joe Smith the Walk Chairman stated, ‘this is also to raise our voices about those who cannot afford to take insulin because the prices are too high.  We need better examination of the current health care system.”  2019; different topic,  2020; different topic.

Get it.  I guarantee we will look back in 2023 and see how we have accomplished.  If you looked back now; could we say that?  It’s time for everyone to ‘do their thing’ but with a message on an arch each year.  Loud and clear.

The world will not know we are under siege, unless we tell them.  But with so many different messages, and so many different voices trying to be heard results in……well…….no one hearing anybody.  For over 25 years I have observed us as a community.  Incredible.  Passionate.  Brilliant.  The one thing we have not been, is a single voice.  We need to look at it because as so many other groups active in the world are teaching us…………………….it’s time
I am a diabetes dad.
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Dear 2018……..uhmmmmm…..’gotta minute?

dearsantaletter-outDear 2018,

Nice to meet you and we look forward to your arrival.
You may not know me fully but I’m pretty sure we both know of each other well enough from others, and I was told to contact you for the things that might be important during this upcoming year in my world; which is a world of diabetes.

I get it.  You’ll have people with long lists regarding the state of affairs here and abroad.  You will have people screaming on both sides of what is correct from their standpoint which they will insist is in the best interests of all…….sort of impossible, I know, but they will insist.

You will also have people asking for incredible mountainous requests for sick relatives and dire situations.  All-in-all, I do not envy you your situation.  Not only will you not make everyone happy, it’s my guess you will make only precious few as happy as they may want.  Powerful is the individual who recognizes that they cannot do anything about what enters their world but it’s what they do with what comes along that creates the path they walk.  We are each faced with that task.  Life is life; and no matter where we are in this world…..we are given life to deal with and manage.

With all of this in mind, it’s also my understanding that you take requests. It has been made clear to me, 2018, that you are not Santa Claus but that request can be made and you will sort through and figure out what is best and that asking is completely encouraged.

Okay…….so here we go.  This is my request for our diabetes world.  Others may chime in as needed.

First and always, I want a cure.  I’ve been asking this for some time and although I have not been one of those who point and say they have been promising it within the next five years (who are those people anyway?), I think it’s time.  Or, at least, some REAL significant progress toward that end.  Some clinical (human) trials in kids…..something promising please.

We also need some stability in the insulin world when it comes to pricing.  Either allow some of the cases to come to trial that make/prove definitive and serious allegations to force lower costs, or have someone come up with a generic brand that will shake the foundations of those who think they control all costs—-the prices are too high, 2018, please look into this matter.

Please help us make a REAL dent in our journey to stop the missed diagnosis of T1D.  No one should die or be missed diagnosis that in turn causes major havoc in people’s lives.  IT’S JUST SO AVOIDABLE, 2018, it’s almost ridiculous.  Thank you for the continued efforts of so many—-it’s MAKING a difference but we need to really make this a national initiative.

Health care costs.  Okay here is the deal, us in the diabetes word ARE NOT THE ONLY ones asking about this 2018.  YOU HAVE GOT TO KNOW BY NOW how important this issue is for so many causes, so many people, and so many reasons?  A group of fat cats in our Nation’s Capitol can no longer be allowed to merely make changes without fully understanding of what the impact will be…..it’s a mess 2018, please both tend to, and fix, this situation.

Management tools.  2018, I am not just  referring to a device that reads blood sugar and dispenses insulin; I’m talking about all management tools.  There needs to be a healthy array of available equipment and not controlled by just one or two companies.  This just makes no sense.  Never before have people (patients, loved ones of patients) been so nervous that what is available today will not be available tomorrow.  Medicare and Medicaid need to cover what is needed and we all need to know that what is needed will always be available.  It’s just not fair.

2018, these are all practical and needed request and understood, they are all tall orders.  But I have faith in you and believe in you.  From the fiasco of diabetes issues 2017 left behind, my hope is that you are better, stronger, and more aware of how to navigate the waters-of-need for all those who do not want to just live with diabetes, but thrive with it.

Good luck 2018, we be in touch to see how you are doing.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.