a childs cry for change

Halloween and Diabetes….Be Afraid…..Be VERY Afraid……REALLY? Nope. Boo.

Posted on October 24, 2017 | by tomkarlya | 3 Comments

From three years ago and updated but still a treat (get it?)…..enjoy. Happy Halloween.

Within the next week will be Halloween. Halloween means so much to kids. Our kids with diabetes are no exception. I remember when Kaitlyn was younger and many neighbors bought stickers and toys for Kaitlyn; “…I did not know what to get for her”, Was a common response. Not really necessary, but we just said thank you for their thoughtfulness…..and they were very; thoughtful. People can surely be wonderful.

We were discussing this weekend, over coffee, that each year there was no doubt with all of the walking that Kaitlyn would do that ‘going low thing’ and it would not only occur; but almost always at the exact same block each year. (Spooky, huh?) She would carefully choose something out of her bag full of treats (of course juice boxes and ‘stuff needed’ were readily available ‘just in case’—but letting her choose something from her Trick or Treat bag…why not?). We would wait a few minutes and continue on. Fun and frights continued.

By time she was out on her own in junior high school (in an era of no CGM like DEXCOM may I add) she was pretty well versed on how the drill worked on Halloween. In a recent conversation neither Jill nor I could remember any major adjustment on this date (and remember prior articles of mine stating Kaitlyn was considered as ‘brittle’, which translated meant she was extremely tough to control….it was a phrase we hated). On this day our kids strive and want to be just like all the others kids…….AND THEY SHOULD BE.

Let them.

I remember many conversations from people over the years who do not live with diabetes; how much 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. Don’t treat it as such. Yes, be smart but every time you feel the word ‘no’ coming on……change it to making it about choices.

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, what ALL THE KIDS ate; and we went through it all like every other parent did each year (you would be surprised how much leeway THIS gave us on removing ‘stuff’, think about it).

We all do/did ‘Halloween’ 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’s at. Parents? 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, never missed a day in all those years; 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.
…….and as a side note; Kaitlyn sits as an RN to take her CDE test in January. Yes my dear colleagues/parents-in-arms…….They. Can. Do. Anything.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Fighting for What You Believe……Even to Die; Teaches us All.

Posted on November 3, 2014 | by tomkarlya | 1 Comment

The choice to die. If you have never been by someone’s bedside as their life was ending, you may not fully understand ‘that’ choice.

I have.

For more times than I care to remember. Each time I walked away saying the same thing, ‘why do we have that humane treatment for animals but we, ourselves, do not really have that choice?’

In life, we don’t know what we do not know. I tell you that because until Brittany Maynard placed a public face to make available this option of dying with dignity, I was truly unaware that it existed. I’m not here to argue whether Ms. Maynard’s decision was right or wrong to end her life and in many cases, I think many more should not argue it either. It is such a deep personal choice but I tell you what I now believe; that there is a difference between suicide and dying with dignity. I, me, myself feel that way and I am not here to say you have to feel that way at all. But Ms. Maynard has put a light on a discussion that needs to be had.

And for that, I cannot stop but respect that effort. In her last days she stated that (this she hopes this process) “…. becomes available to all Americans.” She could have done it alone, she could have done it without any notice whatsoever. She moved to Oregon to take advantage of Oregon’s Death with Dignity Act. In her youthful age of 29 she would be dying due to Stage 4 Glioblastoma—the options she was given were weighed and weighed heavily. She discussed it with her family. She thought long and hard. For her, it made sense to be in Oregon.

And this weekend, she took the cocktail of meds to end her life with her family around her. Her legacy is yet to be written; whether the rest of our country agrees with her on, at least, giving the choice to those people who want it in the other 45 states.

Again, I’m not here to debate this issue. My article today IS NOT about choosing to die or not, it is about fighting for something you believe in when you could just choose to do nothing. This story paints an absolutely crystal clear picture that when something is very important to someone, they will do what they must to make the world aware. They will ask the question that, in turn, each of us must ask of ourselves. In this case, in many cases, we will all be faced with the inevitable…..we will die. So the question is somewhat universal to all of us and hence, we all feel it is a question we should ask ourselves should/when the time ever occurs even if it is hypothetical……for now.

When it comes to diabetes, it does not impact everyone. It impacts many and even the many who have it make the decision to choose living with it and keep going. They do not want fanfare, they do not want to make it an issue…..they just want to live with what they have with as little interruption as possible. It’s the minority that get involved to do something. With 29 million, and including family members, it is indeed the minority who choose to get involved to make a difference to change this world.

Even during this, diabetes awareness month, I know many people who don’t want a month of awareness and not even a day of awareness……they want to just move on. It is in their lives and they deal with it and do not want any sort of ‘spotlight’ on what they deal with every day. As one person stated, “Seriously, do you think I want to be reminded. Wear blue for what? Blue circle for what? I need nothing to remind me what I deal with and what makes you think anyone with diabetes wants a reminder?”

The choice is theirs to make…….but that will change nothing when nothing needs changing.

We, as family members, want so many things for people with diabetes; from better management tools, to education, to a cure. We fight for advocacy and for voices to be heard. Some people with diabetes fight just as hard also. It’s an ongoing struggle to be heard, isn’t it?

But when someone feels there is a battle that needs notice, truly believes, they will do whatever it takes to be heard. In the hallowed halls of Congress, to the schools of education, to the public awareness, to even a dying young woman in Oregon.

When you believe in something so strongly, you fight for it; and in some cases even until your last dying breath. What right does anyone have to just do nothing when so many others fight so hard?

If anyone can answer THAT question, I would love to hear it. It’s Diabetes Awareness month……….what are you doing?

“It is people who pause to appreciate life and give thanks who are happiest. If we change our thoughts, we change our world! Love and peace to you all.” – Brittany Maynard

Rest in Peace Brittany.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

Diabetes Awareness Month…..Yada Yada Yada….Big Yawn…..Right?

Posted on November 1, 2014 | by tomkarlya | 1 Comment

Well it’s here again. Diabetes Awareness month. Why bother, right? TV shows will still get it wrong, organizations will still fight to own the spotlight, friends and relatives will still get it wrong, pharma companies are still the big bad guys, and our kids will still battle this disease for another year…….what difference does it really make?

If you feel, in any shape or form—even one iota, that this statement is a true statement; than you need to do more. It’s so easy to stand back from the outside and see all that is wrong with whatever YOU THINK is wrong. But hear me loudly and hear me clearly; if you think for one second that you have had enough and complaining is the best you can do than you have NO CHANCE of changing anything.

Nothing can be changed by anyone standing on the sidelines moaning about what is wrong, and who is wrong, and how it will never change. NOTHING!!!!

I’m so tired of reading gripes and complaints and the very same people do not lift a finger to make a difference. No money and no time is NOT AN EXCUSE! You do not have to give 1 penny but you surely could collect donations somewhere; and as for time—the next time you feel that way during an entire year that you do not have 10 minutes to even hang a poster of awareness……..well shame on you!

Everybody has ‘life’ thrown at the them and for the beginning of Diabetes Awareness Month, make a decision to get off the sidelines and just “Don’t do Nothing”. I’m a tad angry today as you can see……why? Because there is a huge group of people who are battling incredible winds and cold today for the JDRF ride. They have lives. They have life throwing them curveballs. They are single parents trying to make a go of it. They have type 1, and what could have been a beautiful ride has become an all out war against the weather. They could have just thrown up their hands and said, “Not Me”.

But they didn’t.

They forged on to get as much done as their weary bodies could take. They are doing it for their own and for those of us not riding. Whether you believe in JDRF or not; their advocacy on the Hill, and their funding will help your child. If you believe in the ADA or not; their constant fighting for rights in schools and elsewhere will still help your child. Whether you believe in the cure focus research of the DRI or elsewhere, when the time comes you will be glad that work continued. Whether you believe in helping people abroad or not, The Diabetes Hands Foundation will still help families abroad sleep tonight because they stepped in, and the list is much, much longer…………and yet, I’m told by someone who is doing nothing this month because “why should we when Pharma companies control everything?”

You are not doing it for PHARMA.

Nothing makes me more furious than listening to ANYone who does nothing to make this world right/better and goes and complains about the NOTHING they are doing and just why THEY ARE doing nothing.

I ask “How is that nothing going by the way? Feeling good how you are helping your child doing just that………………………Nothing?!?!?!?!”

If you want to be that way….go ahead….but shut your mouth because if you’re not in to help it….you are distracting those who care enough to fix things that need fixing, find a cure, educate the schools, climb the hill in Washington DC, lecture to a group of people, research, build better management tools, help children across the globe who cannot afford insulin, donate money, ride, walk, raise money, join boards/committees, advocate everywhere, support others, and quite honestly many of us are tired hearing that voice of ‘nothingness’.

Either get up and get involved, or be still. Because many of the rest of us have a lot of work that needs to get done and that voice of ‘nothingness’ is getting, quite honestly, very tiring.

It’s November. Diabetes Awareness Month. Get up and do something or it will be my constant prayer that in December you get a visit from the Ghost of Christmas Past. It changed that guy, you’re next!

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

Your Child has Diabetes……What is Your BIGGEST Fear??? Admit It!!!!!

Posted on October 31, 2014 | by tomkarlya | 3 Comments

Well Happy Halloween.

In this day of frights and scares, I wanted to share a story with you that changed my life living with diabetes at the time (and now times two). I was once asked, what do you fear the most about your daughter having diabetes?

After saying all of the obvious; going low, not being around when needed, having too much insulin etc. etc. the person asking me after each statement said; “That is not what you are really afraid of….what are you really afraid of?”

This went on for a while until I finally blurted out, “My fear is that she will die…..okay?” The person looked at me and we stared for a little bit, because I was shaking, and he smiled at me.

“Now, you can start to deal with it.”

The more we suppress something, the harder it is to deal with it until it consumes us. Saying that phrase will not jinx anything or ‘make it happen’. What happens next, after realizing that it could happen, is to learn to balance our fear to take the course of action to calm those fears. In our case it was education.

I have, after a long time with diabetes, have that fear placed in a compartment in my mind with a lot of other fears I have regarding our kids. Driving, fighting fires, responding in the dark of night, driving with diabetes, are just some on that list as well. If we lived with JUST THE FEAR of the things that scare us, there would never be time to do anything else.

Hear it again; IF WE LIVED WITH JUST THE FEAR OF THINGS THAT SCARE US, THERE WOULD NEVER BE TOME TO DO ANYTHING ELSE.

For me, I went a step further in facing this fear. I have shared this before—-should anything happen to my children, I need to be able to look in the mirror and know that I did everything I could to prevent that from happening.

I look in the mirror a lot.

Whatever it is that I feel is lacking, I push myself to the limit of making sure whatever is needed gets done. Education, instruction, correction, discipline, hugging, and whatever else I feel I have to do to relay a peace to my kids, I do.

This is not an easy thing to discuss. As I write this, know I am AGAIN asking myself if I actually believe it? It would be safe to just write about fluff and stuff but this is a serious disease. I have never taken the easy road when it comes to the possibility of teaching others even if it is revealing a part of me that I do not readily do. It’s not easy to discuss what ‘could’ happen to my kids.

But there is a very important side to this discussion and it is this: If we have a fear and we do not have diabetes—imagine what our kids WITH diabetes feel. What? You do not think they think about it? THAT would be an error.

So in as important as it is for you to understand the feeling and ‘grasp it’, it’s more important to instill in your children the same thing. My kids to not walk around with doom and gloom in their lives. They have been given the tools necessary to understand and live life to the fullest degree……and they do every day.

Anything in life CAN happen but I dwell on what will happen. Fate can step in at any time and completely turn our lives upside down. When my kids were diagnosed, it did just that. When my kids were in car wrecks, so did that. When they were hospitalized, so did that.

My point. We moved on. If you cannot deal with it or accept it, find a means to cope with it. Whatever it takes.

My kids are living in lives of incredible opportunity and the world is at their feet to conquer as they see fit. THAT is the attitude I have always wanted them to have and it began with me looking in the mirror and accepting that every single second of my life was going to be full of the positive-ness of what is around us. To understand that, I needed to face the fear I have and let it know it has no place in our household.

I’m not always successful at that and on the days I do not….I move on as quickly as I can. LOOK AROUND YOU. I enjoy the so many families I have come to know and love in this diabetes community who empower me with they strength and power to not only move forward but to do so helping so many others.

Energy begets energy…..which energy that is, negative or positive, well that is your choice……isn’t it?

Get ‘scary’ out of your life and leave it for Halloween…….life is much more fun that way.

Boo!

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

(Editor’s note added 10/31….it seems that the word “FEAR” I chose is the logo for a rock band; it was not done intentionally and nothing I wrote reflects any opinions or feelings of the musical group FEAR—I apologize if there is any confusion.)

This November: Don’t Just Educate THOSE WHO ALREADY KNOW!!!!!!

Posted on October 30, 2014 | by tomkarlya | 1 Comment

Education.

We see it all the time. The outcry for better education in so many areas. Campaigns, ideas, thoughts, outreach, anything that can be tried is tried. As many creative ideas that take the turn where some get little attention and some get a lot of attention. Some are liked, some are controversial.

Everyone looks to be the next ‘bucket of water’ campaign. Everyone looks to be the new fad.

To me, I look for ideas that are not necessarily internal. I think it’s great to have thousands of people ‘like’ or to participate in something but I REALLY like when I see projects that are not just within the Diabetes Community. It’s a simple reason, really. We already get it. We already understand. I like to see projects that go to the masses who have nothing to do with diabetes. Because they DO NOT get it. They are the ones that we need to continually try to educate.

But can we do more? Well I guess one could say more can always be done but what I am suggesting, with Diabetes Awareness month being just two days away, is that with the many plans, fund-raising events, blue circles, online initiatives and everything else creative we can think of; try to find at least one thing over the next 30 days that educates people who are not within our diabetes world.

Write a letter to an elected official, post the warning signs of diabetes at a library-or in a public place, give a lecture in a school from kindergarten to college, read a Coco book to little kids, write an op-ed letter ‘about something diabetes’ to your local newspaper, but find something that helps spread the word……but not just to our own.

You will have plenty of choices over the next 30 days to ‘do something diabetes’ and choose to just ‘don’t do nothing’ and you will have plenty of ways to do that I promise; but more than that…..choose something else that educates those who don’t know about diabetes.

At the end of the day………teaching those that ‘don’t know’ defines the very word ‘awareness’ in Diabetes Awareness Month……don’t you think?

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

Has FB Become our Refrigerator for Showing Our Kids’ Achievements?

Posted on October 29, 2014 | by tomkarlya | 1 Comment

This weekend as Saturday moves into Sunday, we change our clocks back one hour. One Hour? What would you do if you could change back the hours of your clock?

I have asked many people with diabetes this question and many times I’m told, most often, that they could not imagine who they would be if they did not have diabetes. They would rather not have it but certainly being as much of who they are with diabetes, it is a hard component to imagine life without. They go through life, it does not ‘define’ who they. As I have stated before, the best answer I have received about diabetes was from Kaitlyn when she was nine when she told a news reporter, “I have diabetes, diabetes IS NOT who I am.”

That statement has been engraved in my brain ever since. “Diabetes is not who I am.”

If she believes that diabetes should not define her, and when Rob was diagnosed he ABSOLUTELY believed the same, I am sure-as-heck not going to allow it to define them either. My many, many years as an actor has taught me the importance of being ‘center stage’. To be in a place where the entire production revolves around the action taking place in the most obvious part to the audience; ‘down-stage-center’.

Diabetes will grab the spotlight every chance you give it. Don’t give it. Because of the many times that we must tend to diabetes, it would be easy to allow diabetes to have it all. Our every waking moment. Don’t. Fight it with all you’ve got.

I have stated this many, many times…..I just have no idea why people post on FB when their child is in hospital from a glycemic reaction. I will always say a prayer for someone when they ask it; we all have children with diabetes and we certainly know what it look likes and I do not need a hospital picture to remind me. Ask me? You’ll get my prayers, believe me. But what concerns me is what a child (especially a teen-ager) thinks when their picture is online for the world to see.

Well I asked….and I asked many teens and guess what? They hate it. They also will say they are not too fond of any picture of them online that ‘mom or dad’ post but when it is about an accomplishment; well FB has become the ‘new refrigerator’. You know when younger and that test, or letter of praise from a teacher or school, or art work was put on the refrigerator with magnets……well now ‘the refrigerator’ is for the world to see and it is called Facebook.

I can honestly say that I have never once been in someone’s house and there was a picture of their child in a hospital bed ‘tacked on’ to the refrigerator so the parents could share what a brave child they are…..and don’t get me wrong, when that happens and they go to the hospital…..they are indeed brave. But I have been told by so many kids through my travels that they do not want to be out there showing that diabetes has won even the smallest of battles. I have also stated that I surely do not know everything so if there is a valid reason to post kids in hospitals recovering……PLEASE share so we can understand….I just never knew what that gains for our children.

I love seeing kids doing great things. I love hearing about them advancing in sports, performing on stage, going to a competition in robotics, and doing something that is fabulous and do you know my favorite thing to do?

I love when families post so many pictures of all of their kids, I have to stop and ask myself, “Is this the one with diabetes?” Because diabetes should not define any family either. If it doesn’t go on the refrigerator with a magnet….it should probably not go online either.

Think about it.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.