We CANNOT Break

We are a community.  What impacts one, impacts all.  Those of us who have decided that Just Doing Nothing will not do, have taken up our position in this diabetes battle.  There are as many positions as there is work to be done.

Taking no action, takes no effort.
Again:
Taking no action, takes no effort.
It’s easy.

It can cause you no harm. One has enough to worry about than to think, ‘I have to spend all my precious time on me and my family’. Right? There is power in that, but if we all only looked after our own personal lives, where would we be? I have known and been friends with so many people in this battle who believe stronger in doing things that I do not do.  I have known friends that support organizations more so than I support.  There s just so much tine in a day.

That’s okay.

They are on the front lines of battle.  Like the strongest of Palm Trees they bend during the storm but they do not break. It would be so much easier to take a seat in the back of the room. But they stand directly in the front of our diabetes community facing the diabetes storm; advocating, fighting, raising money, walking, running, bike riding, hanging posters, testifying in front of state and national Capitols, teaching, organizing, and in simple terms they are doing something they find to be important.  Something that will help their own, and in doing so, helping you.

It’s easy to point and criticize. It’s harder to say, “Let me help you”.  You may not be the first in the battle you undertake……..and you will not be the last.  But we cannot stand as a divided entity.  We cannot stand opposing each other.  When I started this battle I was a 35-year-old man who had a ton of energy and hope for my daughter (and then my son as well).  Now at 61, my hope for our kids has not wavered one iota, I just move a little slower.

So ask yourself what you are doing to help and make a difference?  Because if we don’t help……..who will?  Look around you, you have 9 million chances and choices but it starts with that first realization……..”I need to get involved”.

Just Don’t Do Nothing
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Moms and Dads……Halloween can be BOOtiful for You Too……Enjoy!

This month is Halloween, in fact in just about a week.  Halloween means so much to kids.  Our kids with diabetes are no exception, after all, they’re just kids; right?.  I remember when Kaitlyn was younger and many neighbors bought stickers and toys for Kaitlyn for Halloween trick or treats; “…I did not know what to get for her”, was a common comment.

People are wonderful.

We were discussing this weekend, over coffee, that each year there was no doubt with all of the walking that she would do that ‘going low thing’ would not only occur but almost always at the exact same block each year.  She would carefully choose something out of the trick or treat bag. (of course juice boxes and ‘stuff needed’ were readily available ‘just-in-case’ as well—but letting her choose something from the Halloween Trick-or-Treat bag…why not?).  We would wait a few minutes and continue on.  Fun and frights continued.  On this day our kids strive and want to be just like all the others kids…….AND THEY SHOULD BE.  Don’t be afraid to let them.

I remember many conversations from people who do not live with diabetes as we do.  Their naive questions regarding how Halloween must be a disaster for us, having a child “who cannot eat candy”.  People thought that we would deprive our child of this incredible right-of-passage.

Those of us ‘in the know’ know better, don’t we?

If you do not know….you should learn how close to normal you can make this day.  Our kids are not driving close to a cliff during this day.

Of course we would control the candy; some gave money in exchange, some put the candy outside for the GREAT PUMPKIN to take and exchange for a toy; but we always controlled what the kids ate and went through it all like all parents do each year.

We all do those things.

There are many things that you can find online about kids, diabetes, and what to do.  Today I want to check in with where YOUR head is at.  You should not be afraid (pun intended) of this day and you should spend the time enjoying your kids, while they enjoy the day.

Diabetes never stopped us on Halloween and it should not stop you either.  Go and enjoy.  This is a holiday for kids to enjoy and with a little knowledge and a little ‘smarts’, the only frightening thing about the day should be at your front door when the doorbell rings.

Be afraid……..be very afraid?   Nah…….enjoy; Halloween is nothing to ‘spook’ you.

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

Your Child with Diabetes has a Sibling, Don’t Forget It

In this day and age, if you think your kids are not, somehow and some time or another, on the internet, you would probably be mistaken.  One statistic states that only 15% of parents are ‘in the know’ of their child’s access and use of the internet (https://www.guardchild.com/statistics/).  So let’s assume that stat is roughly correct, that means whatever you post, write, vent, argue, and generalize; it’s a pretty good chance your child has access.

I have stated in the past that I’m no fan of posting kids in their hospital bed but not because of the impact, I get it and there surely have been hugely powerful photos of such.  But how would we each feel if someone took a picture of us at our absolute worst and posted it with a caption, “Take a look, I surely feel bad for my mom today”.  Think about it.  But my main reason for today’s article is if you have more than one child.

Not more than one child with diabetes, just more than one child. I cannot tell you how many times I’ve seen a picture of a child with diabetes and what a hero they are with flowers, certificates, trophies, and all sorts of fun stuff celebrating their accomplishments.  To be clear, that is wonderful and knowing they accomplished these feats while battling diabetes makes us incredibly proud, and rightfully so.  But I’ve also seen these very same pictures with a smiling sibling looking on and when I scroll back through someone’s FB page, I just do not see any of the sibling and their accomplishments.

Be careful.

In as much as we are all proud of what our kids accomplish in their day-to-day battles, remember to single-out something your child without diabetes has accomplished. Post about that. Brag about that. As my dear friend Dr. Richard Rubin used to say, “make it about balance”.

I can tell you with most certainty that your children know the times; a trip was cut short, a detour had to be made, something different was served or left out, more time was paid, and in general a bigger fuss was made over the child who has diabetes.  And that is fine and at times completely unavoidable, just make sure you stop, every now and then, and spotlight those children who do not have diabetes.

Let them decide where to eat some nights, or what movie to see, or what activity to do.  Our children without diabetes know every corner that was cut on them because of their sibling with diabetes.  What do you do to booster your child who lives without diabetes?  Look for those events and highlight them.

Praise is cool.  Everyone likes it.  Give it away, and often, to ALL of your kids.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

They Were So Young, We’re Parents, it’s what We Do

Our eyes become cloudy after a while.  While the road roars past us at 200 miles per hour, we see only a frozen puzzle piece held in the grips of time as, a memory, at best.  Speak to most parents and they will tell you sentence, chapter and verse what happened the day their child was diagnosed with type 1 diabetes.

They will know what they were wearing, they will tell you how their day started and more than that, they will tell you how their day ended. One parent went home to take care of the house and any and all left inside, and one parent pulled up a cot, a chair, or anything that could hold them as they stayed with their child that first night diabetes entered their lives.

There are a million stories, some as heartbreaking as there are those that were just a quiet roar; your new normal has arrived. Some became huge worldwide advocates and some just tried to get their lives as close to normal as possible, to live like life was at one time.

Our heads became full of stories and facts and what was needed moving further. We listened, we nodded, but we also knew that what we needed to know we would learn by doing not by what others said.  The newest and meanest definition of on-the-job-training. Our wonderful relatives trying to be experts with what this was and how long our children would have it, would be so far removed from what we would learn. It’s not the same diabetes as someone’s grandma, or even someone’s dog.  It is our child’s diabetes and it is here to stay.

Some full of passion argue points that those of us who have been at this a while, don’t feel the need to partake anymore.  Shots vs. automated, cloud vs. electronic, and even bare feet vs. sandals at the beach.  What we know, is what works for us. After a while you learn, it becomes how THIS impacts us because at the end of the day, it’s truly all that matters.

The world of diabetes will not change unless many pick up the fight. As long as I have breath, that fight will continue.  That fight for a cure.  That fight for a better world for those who live with this disease 24-7-365.

This week was year 27 in this battle.  And as tired as I may be and as much as I don’t understand so much; it pales……I mean really pales……..compared to those who live with this disease.  The Kaitlyns, the Robs, The Kellys, The Michaels, the Scotts, the Marissas, the Nors, the Monicas, the Sams, the Nicoles, The Jims,  and the list goes on and on and on.  They are the heroes…..the REAL heroes.  They live life.  And that is a pretty special driving factor for us, the parents.

Those who know, need no explanation. Those that don’t, would never understand anyway. When they get a break, we get a break.
Not before.
We’re parents, it’s what we do,
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

The Focus MUST STAY IN WASHINGTON, Not The Problem with Less Expensive Insulin

There has been much discussion of late regarding insulin which is available at places like Walmart for a very reasonable expense.  Some are saying/reporting that people died by going on that particular insulin which they were forced to do because of the cost of the insulin usually used has skyrocketed out of control.

I’m not here to argue this point; sides are drawn and the battle to be right is occurring in many places all around us in the diabetes community.  What I would like to do is make a few points for all of us to think about, while we wait.

What we are waiting for is my first point——there is absolutely no reason on earth why anyone should stand idle and not keep up the pressure of advocacy at the boneheads responsible for these out of control insulin prices.  That fight needs to continue and needs to continue constantly.  There is absolutely NO REASON for any individual with this disease to not be given the insulin, THE BEST INSULIN, they need to survive.  That point needs to be clear.

Whether some like it or not, believe it or not, many people have survived using what is available at a lower cost. Before many of the diabetes tools in our diabetes tool box now available, there were limited resources.  When the insulin ‘hit’, sometimes it was like a crashing airplane.  Crashing was as much in our discussions as high and low blood sugar.  It was part of what we had to deal with, and what we had to do and with proper medical professional help, we charted the best course available.  Guess what? Some people died back then using this method.

Guess what?  Some people also have died because of something to do with their insulin pump.  Whether it malfunctioned or was not used correctly, is not always known.  People also die when a car malfunctions or is used incorrectly. We cannot stop driving anymore than we (or our kids) can stop taking insulin.  In the latter case, stop taking insulin is a death sentence.

Any fool can go out there and say that this is much ado about nothing because an alternative is available at Walmart.  It’s a stupid statement at best. TOTALLY AGREED. But……..BUT, until such time that this can get fixed, people with diabetes need to take insulin. And to change ANY course of treatment must have, and needs to be done, under medical supervision only.  There is no WAG (wild-ass-guess) here because that can cost you your life.  ANY CHANGE TO YOUR TREATMENT SHOULD BE DONE UNDER MEDICAL SUPERVISION ONLY.  PERIOD.

Remember the discussion how treating this disease is very personal and is different with each person? That there is no ‘one size fits all’.  Even with medical inclusion, we still have to pay particular attention to everything diabetes.  When you change one thing, it changes many things in one’s life.  It’s the truest form of real-life-domino-impact that one will ever see. So if some people are making the lower insulin work for them, are they wrong? If some people want the fire to get turned up in Washington so people can use the insulin they want; are they wrong?  What happened to one person’s treatment does not necessarily have to be the same as another’s?

I’m seeing a ton of energy from people trying to convince the world that it’s better to have nothing, than use the less expensive insulin available.  That’s just not true or my daughter, and many others, would be dead already because we were using that-type- ‘cocktail’ for years.

Is it a solution? No. It’s a stop-gap measure until the folks from Washington can get their heads out of their……let’s just say, the ground. Want to argue that point, argue it with Washington folks because arguing with those who do not have the power to change anything, is wasted energy.  No one should want or have the need to be right about this, what we all need is to see this resolved.  The pressure needs to stay with those who can, and who must; rectify it once and for all.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Brittle Diabetes?…….and Other ‘Fun’ with Names

I have always found some of the terminology used in our diabetes world a bit…….odd.  How many of us have been in the company of strangers when our child, who is a good distance away, checks their blood sugar and shouts to us; “I’m high again!”  Funny to watch the strangers hearing this and shaking their heads in a ‘tsk-tsk’ shame on us and our drug addict kids.

Not a big fan of the Type 1/Type 2 naming club either.  Now I also think that we can waste millions of hours in trying to change it and many have certainly tried.  But I am not so sure I have ever heard of a Type 1/Type 2 Cancer, allergy, MS, cystic fibrosis, flu or anything else for that matter.  Type 1…..type 2…..really?  Nonfunctional Pancreas Diabetes……..or NFP………and Low-functional Pancreas Diabetes LPD….perhaps.  But truthfully Type 1 and Type 2 is surely better than Juvenile and Adult Onset Diabetes……what a mess THAT was…….right?

Another phrase I have always hated, never understood, and also lived with in one of our children is Brittle Diabetes.  Short version/definition is extremely hard to control diabetes.  Brittle sounds like if you drop it, it will break. Also interesting that it is the same name as a hugely high in sugar peanut-candy treat, don’t you think? It certainly does not describe what we went through.  Perhaps, ‘what-the-heck-is-going-on-we-never-sleep-she-has-no-idea-what-she-is-feeling-and-we-all-feel-out-of-control diabetes might be a better name although tad long I admit.

How about in your life? What diabetes phrases or words have had you scratching your head? Perhaps it keeps you up at night.  Or up in the early morning.  In the dawn….a dawn phenomena, oh wait………

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