Our Back-ups had Back-ups

When Kaitlyn was first diagnosed, and the credit for this falls squarely on Jill, our back-up plans for Kaitlyn’s diabetes had back-up plans. When it was her glucometer, there was the one she carried, the one in Jill’s pocketbook, as well as the one in the car. There were always three different angles to the end game on anything diabetes. Interesting enough, over the years, the approach changed little.

I would strongly suggest that every parent consider the same strategy.

No matter what we have used, no matter how technology has changed, there was always a back-up plan…….for even the back-up plan. What that plan might be is entirely up to you and your family, but if you have a dollar to bet on anything doing with technology, bet on this one fact……it will fail.

Do not wait until it fails to be prepared.

When the technology stops, the ingenuity must, MUST, kick in. What was once a relayed signal from the cloud might become a manual glucose check and a phone call or text. What was a working glucometer, becomes using a spare one just in case. What was an insulin pump dosage, becomes an injection.

There was much online frustration relayed in our community with the recent Dexcom failure to transmit information. People were saying all sorts of things; how others should feel about technology, and what they should not feel, and what right anyone has to have such feelings, or not have. People became angry at others and felt people should mind their own business and not tell others ‘how they should feel’.

In my opinion it should come down to one thing, and as I stated, credit my wife; when it comes to anything diabetes, your back-up plan needs a back-up plan. Whatever that is or might be, I leave to you and your family. But if you do not have a back-up plan to your back-up plan; you will one day experience the panic of ‘not knowing what to do’.

And that’s not a good place to be. Plan now for the next time because I most assuredly guarantee…….there will be a next time.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

No 2 are Alike

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So as we approach our third ‘winter’ in South Carolina, I am reminded of the one thing I do not miss about living up North……..snow. I was never a fan of snow. It always looks beautiful and then the reality hits that those beautiful flakes will not remove themselves from your car and your property.

The one thing about snow that I always found fascinating was that, as the saying goes, no two are alike. Millions and millions of snowflakes and each as different as the next. This was my assessment of those with diabetes for years. I even called it the snowflake disease as how it impacts one may be completely different with someone else……and in many cases it does impact two people completely differently.

Remember that the next time you want to jump in and help someone with a diabetes inquiry. The way diabetes impacts your child could be 180 degrees different than how it impacts someone else. But withing this discussion is also a celebration of how people move beyond the limitations of this disease in their own lives. Just this week, one young man made the junior Olympic team, one starred in a football game, one danced the Nutcracker, one entered medical school, one is graduating Family Nurse Practitioner school, one went away on their first weekend without mom and dad and ALL OF THEM did it with diabetes.

So as we head into the holiday season, celebrate the uniqueness of your child. Celebrate that what they do, and remember that they do it while managing a truly tedious disease. A disease they did not ask for. A disease that was thrust upon them. Celebrate their uniqueness. And while your at it, give a pat on your own back for all you do to help them.

No two snowflakes are alike. And neither are your children. Their uniqueness is worth celebrating……in fact, it melts your heart, doesn’t it?

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

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This Month, ‘Diabetes’ Gets Nothing!

Dear Diabetes Awareness Month,

Sorry I have not paid you so much attention this year. I mean I certainly continued the advocacy I find so important. People need to be made aware of your signs so they can get proper care before it is too late.

I am also not letting you off the on letting insulin prices go just as high as they want; we’ll keep fighting that too.

But I am spending my time enjoying the things you cannot keep from my kids. I visited Minnesota this month and shared with my son his new digs at the corporate offices of Best Buy. You know, the place he could not get to because he was too young or his diabetes might get in the way. Yeah; that didn’t happen and now as he approaches his second year, we continue to be so proud how he and his fiance are doing out there, so sorry I was not dwelling on just the diabetes that week.

Oh, and also sorry that I could not spend more time with you in the middle of the month as I had to visit Kaitlyn; you remember her don’t you? You know the one diagnosed at age two, the one where one medical professional told me I should be lucky enough to hope for just getting through college. Never knew if they meant that diabetes would be so hard she would be unable to balance it with her studies or that she would be alive at this point……….well she graduated college. Graduated nursing school too. Next month she graduates as an FNP—or Family Nurse Practitioner. Take that!

Always surprised they named a month after you. It should be about those who, time-and-time-again, prove that diabetes will not stop them. It should be about those who have accomplished wonderful things despite having you in their lives.

They excel, they find great jobs, they get married, they have kids, they succeed—they do everything that you thought you would stop them from doing. So perhaps we should call November Hero Awareness Month, because quite frankly, you do not deserve to have a month named after you. But our kids do. And the kids we lost do also. They lived as heroes for as long as they could until they could not do it any longer……and you took them.

That’s what happens in a war. And this is a war. And all of us will do battle every day.
Some day, you will lose and we will win. Because you deserve nothing form us and nothing is what we are ready to give to you……..least of all to even have a month named for you. Better we stress the “Awareness” in Diabetes Awareness Month……and give you credit for nothing.

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

Diabetes Awareness Month……Key Word: AWARENESS

Well here we are again, Diabetes Awareness Month.  Trending are many people asking to post something each day of this month.  How many test strips do you use, how many units of insulin, how long have you lived with t1d????  Something different each day of the month.  I’m not so sure I would want to break down my two kids’ diabetes into a 30 day ‘advent-like’ calendar of what we have been doing for the last 27+ years, but if it works for you, why not?

But WHATever you are doing for this month, ask yourself this question as you contemplate what to do to bring awareness to the outside world; ‘who is seeing this?’  It’s great to show the diabetes community, but here’s the catch, they know already.  Whatever you are doing, and it’s up to you whatever that is, but make sure you are monitoring where your posts end up.  All year round we are certainly here to help one another but November offers a very specific charge; awareness.

SO encourage people who read your posts to send them to those who do not know anything about this disease.  Figure out some things to do, here are a few examples;  Encourage your kids to give a presentation in school about diabetes awareness; go to www.getdiabetesright.org and download one of the many awareness posters, print a bunch, hand out and hang throughout your community; donate to a diabetes charity, a camp, or any diabetes organization you like; ask to speak at one of your community meetings like Rotary Clubs, LIONs Clubs, Chamber of Commerce about diabetes awareness; wear blue like my dear friend Paula does all year round each Friday (my Fridays are just not the same if she doesn’t) but now you have 30 days–wear blue, and just do something to get that word out; just don’t do nothing.

This month is all about Diabetes Awareness…….so make people aware!  Not those who know already but those you don’t.  You might just save a life.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

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’.