Does Anyone NOT RECOGNIZE this Picture? Ohhhhhh Diabetes.

MessI find it extremely interesting that no matter how much we store in our kids’ rooms for night-time lows; no matter how many juice boxes, gels, cookies, glucose tablets, and whatever else we store; the counter in the morning reveals that a blood-sugar-low led them to waking up and making their way to the kitchen.

It is a clear reminder to all of us when our kids go low they will do what is natural and not what we think is convenient.  Because they don’t think of it when they need to; they go to what they need and know. 

As I wipe the counter off, again, I wonder what it would be like to be a parent without any children with diabetes again.  I would love to get pissed off at them for leaving the counter a mess, yet again, as many parents would do if their kids were just eating to eat–but mine do it to stay alive.   I’m being a bit melodramatic about that point I admit, but it’s how I feel today.

But on a particular morning, as I wipe a counter, it is a labor of love to clean the counter because I know that they did what they had to do; cleaning up after them is not on the ‘must-do’ list after a low.  And I am okay with that.

The more I am at this, I find myself knowing that the little stuff just doesn’t annoy me that much anymore.  I also know that there was a time that the little stuff did get to me, but diabetes changes that in a person.  Just too much THAT DOES matter to sweat every little thing any more.

How I wish to have back the times when diabetes was not around.

SIGH

I am a diabetes dad.

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Not a Clue…..as Much As I Would Like for it to be Different

Do you ever get overwhelmed?  Diabetes.

Sometimes it just kicks us straight in the butt….doesn’t it?

No IdeaJust when we think we have everything under control ( a term in itself that never rings true), something undoubtedly happens that pulls us back to reality.

This happen to me recently and when the episode was over I came to a realization that was like throwing water in my face.  As one of my kids was dealing with a low, I watched and observed and I had this thought:  I absolutely do not have diabetes.

Now that may sound like a ridiculously obvious statement but as parents we sometimes take on the ‘we’ as if we totally get what this diabetes is like.  I have stated on many occasions,  we had a long night due to a low, or we were watching ketones. 

Well the ‘we’ pales significantly to what those who live with diabetes will go through as we observe.  We, surely as the day is born, worry our hearts sick at times…..but imagine worrying your heart-sick and ALSO having to deal with the ailment itself.

That thought in itself is very bothersome to me.  I can never get to the point, even while watching them go through a low or high or whatever they are going through, to ever allow myself the thought  that I understand.  I don’t.  And I won’t.

Here is why this is so important to remember; knowing that I fully do not understand what they go through will always remind me that something will not just go away, merely by my words.

These comforting words, “It’s okay” does not always work; sometimes we have to just be there and hold them and care for them until they get through whatever it is they are dealing with; without words. 

I do not know how it feels.

But given the choice I would take it on double just so they would not.

I am a diabetes dad.

CGMs…a Few Points….Parents: We have NO Clue what Our Kids Feel About Nightime Lows!

 

CGMs.  Continuous Glucose Monitors (CGMs) are fabulous devices.  They not only remotely give you an idea on your blood glucose number they also indicate where one is trending (blood sugar rising and/or dropping).

The new Dexcom G4 Platinum looks to be a modern, thinner, easier to read, and more accurate CGM.  The Dexcom website states it is the lightest one out there at 2.4 ounces and also the signal can go three times further.

Kaitlyn had not heard that it was approved and from what I am looking at, it sure could be another great asset in Rob and Kaitlyn’s diabetes toolbox. 

I do believe that all CGMs should also have what Medtronic has created in their mySentry device.  This device can sit on your bed stand and alert you should your child’s blood glucose runs low.  It comes with bells and whistles to alert you in the middle of the night.  This device is an incredible asset and not just for the parents.  When Medtronic flew a bunch of us out to their HQ to see this device, it was a highlight for me to witness.  We were informed that people living with T1 as adults could plop this puppy right on their night stand to warn them as well.  What a godsend this device is to everyone.  I felt very naive when I learned from Kaitlyn just how much a low blood sugar during sleep plays on the minds of those with diabetes.  I asked  a million questions…..PARENTS: WE HAVE NO CLUE.  What we feel is NOTHING compared to what people with diabetes feel.  What a lesson she gave me–our fears pale in comparison to their fears. We just have no clue. 

All CGM companies need this type of device……get to work folks.  🙂

When dealing with CGMs–I still believe the best-selling point to our kids is that even though one should not dispense insulin based on the CGM readings (it is a technicality that is required for all companies to say as their accuracy is not as exact as the blood glucose meters that are not as exact as perfect as they should be if accuracy is to be exact….did you get all that?–in other words it is a disclaimer—Based on a comment from Tia–you can read her comment below–I need to add the following:  It is not ‘merely’ a disclaimer–it is a disclaimer for an absolute reason.  One should not dispense insulin based upon a CGM reading and I am not inferring anyone should…ever; until such time that they are as accurate as they need to be to dispense insulin–thank you Tia)–they will feel better in their day-to-day dealings. Mainly because of the incredible trending mechanism in CGMs that allow the individual to actually know they are running low or high BEFORE they actually feel it.

So when speaking to your kids—-let them know the CGM is an asset to make them feel better without the wide swings, THAT is the point to make.  Of course there are always exceptions to the rule.

CGMs are now a ‘must carry’ item for insurance coverage in NY State (thank you NY State Assmblyman Bob Sweeney—a POWERHOUSE in diabetes legislation) and check what this means in every state because there are restrictions how insurance coverage works for this device.

When Kaitlyn was diagnosed in 1992, these items were a pipe-dream.  Use them…..a dream becoming a reality is a good thing…..until we find that cure.

I’m a diabetesdad

 

 

 

 

 

Thank you Peanuts…..Happy Halloween! A GREAT idea…..still.

To this day, the BEST idea about how to handle Halloween still rests with our friends in Charles Schulz’s character-land of Peanuts.

Agreed.  Your kids can still eat some of the candy even with their diabetes.

Agreed.  There probably is not a time that Halloween did not come and go that our kids did not go low while trick or treating.  That ‘low’ resulted in reaching into the bag of goodies to find the right candy to bring her blood sugar back up.

Agreed. Some of the neighbors good not be sweeter (pun intended) and gave stickers or pencils or crayons or something other than candy.

Agreed. Some of the relatives could use a bop in the nose when they quiz us about Halloween.  “I thought of you today and am so sorry that Little XYZ (put your child’s name here, you know the drill) could not enjoy Halloween—my heavens what will you do?!”   Ah……um……no.

But my favorite idea is still: After you save some of the candy from the trick or treat bag; you take the remainder of the bag and place it outside and while your child sleeps, good ‘ol Linus’ Great Pumpkin will stop by your house and pick up the candy and leave a toy as a thank you.  The Great Pumpkin delivers the candy to everyone in heaven who could not trick or treat.

I have always loved that idea…….and I always will (feel free to tweak the story).

Have a happy and safe Halloween.

I’m a diabetesdad

 

 

Will it Ever Get Better?????

I read a lot.  I read many comments from parents.  I read many comments from people with diabetes.  Many times my heart breaks because they fret over a high or a low and it becomes a hurdle 50 feet high.

You know in baseball, every player makes an out more than they get a hit.  Did you know that?  In the history of the game of baseball not one player who had a full career got a hit more than half the times they were given the chance.  Not one.  Many not even a third.

Many times I want to say to parents that it will get better.  You will find a pattern that you’ll life will fit into.  In most cases; unfortunately, not in all.

But for the majority of those who have a child with diabetes I can tell you that after 20 years the new normal does become that; the new normal.  And a bad day of nothing working out will turn into a day where you can try it over again.  And there will be better days.

Remember this; that no matter whatever anyone elses child did today, yours did it with diabetes.  Celebrate that, because many do not. 

You can LIVE with diabetes or you can live with DIABETES.  Your call.  Now get up to the plate and swing for today.

I’m a diabetesdad.