Tag: diabetes advocate

I Just Can’t Do It Anymore

Posted on | by tomkarlya | 2 Comments on I Just Can’t Do It Anymore

At some point or another, we parents seem to come to a roadblock where we feel horrible but realize that just one more shot, one more low, one more sleepless night; well, we’ll just completely lose it. The thought, “I just can’t do it anymore” comes to the forefront of our mind. We look in the mirror and the guilt for feeling such a way overwhelms us and we cry uncontrollable tears both out of guilt for feeling this way, and also, out of the severe frustration that another day has gone by and our kids still have diabetes.

Twenty eight years out, I can tell you that the feeling never really goes away. I have learned that it is at these times where I need to focus my energies on just how special our kids are with what they deal with day in and day out. Early on in the middle of the pandemic I wrote an article about how our kids, once again, had to step up, even with their diabetes. No matter what life gives them, they have no choice but to deal with what is coming at them in full rage.

And they do.

Chance are they ‘take on’ what they do because of what you taught them. We made them understand that if we could take away their diabetes and take it on our selves, we would. We shared that we would have their backs whenever they needed us to, and we did. We were the ‘bad guy’ when we had to, and we were the shoulder to cry on when that was needed most. Onward.

I have never met a parent that did not tell me how much they would take on if needed. We’re parents, this is what we do. I have never tried to make our kids feel like I have any idea what this disease is about, not having it, how could I? But here is where you need to cut yourself a break because our kids, and may they never, understand our feelings either. By the way—-this includes grandparents also.

Part of our role is to make sure they never have that thought because we are here; we are the fortress, we are the strength, we are the foundation……..for all they need. Think back to when you started this journey. “How will I ever………” and a million scenarios came into play. The thought “I just can’t do it anymore” came into mind and you realized that you had to, for them. Think back on how lost you were that first week, even if it was just last week, and how you moved forward in what seemed like slow motion. But forward nonetheless.

Forward is good.

“I just can’t do it anymore.” Yes you can and you will. You must. And there will be days that they are back out there and score that goal, get that scholarship, get that job, pitch a no-hitter, graduate college, get married, have kids. Know this, as you witness these days as well as all those long nights, you had something to do with those successes.

Onward, indeed.

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

Dear Newly Diagnosed Family……

Posted on | by tomkarlya | 3 Comments on Dear Newly Diagnosed Family……

I read in a recent FB post about a parent who was filled with despair and absolute loss that their child was diagnosed with type 1 diabetes. My column, this month’s column, is dedicated to you.

Dear Parent to the Child Newly Diagnosed with T1D,

Let me begin by saying how sorry I am that you are now part of ‘this club’; ‘a club’ of which none of us ever wanted to belong. There is not one single thing that you are thinking, or have thought, that most of us have also thought. We know your fears.

Outside of those fears, in actuality, our kids are doing GREAT! That’s what we WANT to share but the fear you have, we have too. Always did and always will. But here’s the thing, the first night became the second night which became the next month, and then the next year and we woke up one day and it was 28 years for our baby girl diagnosed at age 2 and 12 years for our youngest, a son diagnosed at age 13.

So although the fear is there, we have learned to take this ‘diabetes thing’ and live with it and allow it in our lives (because we cannot control that) but not to allow it to rule our lives. We do not live in fear, we live in ‘bring it on’, we can handle it.

Our kids make friends, go on to high school, college, and beyond. They are in the homecoming court, robotics club, prom court, track team, badminton team, and so much more. They letter in sports on high school teams, they play college ball, some even turn pro. All with the same disease that has you wondering today, about your child’s tomorrow.

They become executives, nurses, doctors, and play sports on teams like the Miami Marlins, the Pittsburgh Steelers, the Toronto Blue Jays. They win medals at the Olympics, win Grammy Awards, Academy Awards, and they even become Miss America. You see it’s better to live a life by grabbing it for all it has and letting nothing stop you, or your child.

It’s hard to see that right now as you cry while you inject your child with life saving insulin or prick their fingers to check their blood glucose number, or even pricking the heels of their feet because they are just too little for their fingers. It’s hard to think that your daughter calls you when she makes you a grand parent as you think, today, will anyone even marry someone who has this disease? The answer is yes.

Learn two things: The answer to every one of your questions about what you child can do with diabetes is the same answer as if they did not have diabetes. Yes they can, will, do and achieve.
The second thing, and it’s also the answer as to how the first thing can be accomplished; and that is education. Learn all you can about this disease and how it impacts your child, it is the ultimate equalizer. Education.

You do not see that at 3 in the morning as you cry out, “Why them? Give it to me.” But I have been there and so have millions of others. Look in the mirror and tell that person, “You’ve got this.”

One day at a time.

It’s okay to hurt, cry, scream, be frustrated, exhausted but look at your child……..you just can never give up. Look at them. They’re worth every bit of energy you have but don’t waste that energy……you will look back and know that your child is doing so well because anything else is just not an option. You’ve got this.

We’ve all been there. We’re all here now. If you need us, call.
Sincerely yours,
DiabetesDad

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

What Have We Become?

Posted on | by tomkarlya | 2 Comments on What Have We Become?

I ‘m not quite sure why? Perhaps it ‘s the culture or the climate of late, but does anyone else sense there is a different feeling among posts on social media dealing with diabetes, and the management therein for one’s self or for their child?

It’s as if the the number one rule of years ago, has been forgotten. What you read on social media is not fact, as much as it’s one’s opinion, albeit some really good opinions at times, and that diabetes is not a one-size-fits-all proposition. I’ve witnessed some pretty heated exchanges lately that derail even further as someone’s different opinion’s weigh in, and also from those who feel their opinion is enough for people to believe as a gospel-truth-attitude, sort of a “….that’s the way it is!”…… mentality.

This has always been a very complex disease. This has always been full of many different groups and organizations that are as different as night and day. But here’s the thing, it’s your choice who or what to believe in and support…..or not. The one thing I have always felt to be true is that the equalizer in all things diabetes is education. But it cannot be just the more you know, and that’s it. It truly needs to remain that the more you know, the more you want to know. And you seek those answers because the ever-changing world of diabetes is a constant, and will stay a constant.

This is an ever-changing world and the treatment of diabetes changes all the time. If someone feels the insulin available at Walmart works for them, and have figured out how to make it work, who am I to say other-wise? If someone feels that their child needs a diabetes-alert-dog, go for it. If change needs to happen in our country’s health care, so be it. If someone feels that walking, riding, or fund-raising for one of the many organizations in our diabetes community is something they choose to do, we should applaud their efforts. If you feel that because of pharma companies, a cure will never be found, that’s your choice.

The one question I have asked (as I write this) each day for the 10,412 days since Kaitlyn was diagnosed at age 2, and the 4,393 since Robb was diagnosed at age 13 is what can I do, today, on this day to make a difference in their world. I cannot, as I have stated a million times, just do nothing. What positive energy can I bring to this world that helps us all and does not waste a second on something that does not move us forward. I wish I had the energy for much more, but I don’t. I need to stay focused on what I can do.

I’ve learned many things over the years, made many mistakes (some real whoppers, too) in my children’s lives and in this community. But I also believe I’ve fought for change, have reached out to those in need, and supported those who I felt will bring us to that cure I one day hope for. Not tomorrow, no, but supporting those who will stay at it….because truthfully, if we don’t support these things and fight for these things……who will?

Let’s not waste one second of time tearing someone else down who is dealing with diabetes in their lives like we are. Diabetes gets enough…….it should not get that as well.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

2020 Owes Us an Apology….but…..

Posted on | by tomkarlya | 1 Comment on 2020 Owes Us an Apology….but…..


As we head into the final week of 2020, do you find yourself saying, as so many are saying, 2020 owes us an apology? What a year.

We certainly have experienced loss in our circle from COVID, as so many have and it has not been an easy year for anyone. The impact of everything COVID; from health to economy, to one of the most brutal election years ever, has left so many in pain and questioning…….well…….everything.

One of the things that I have known since the day Kaitlyn was diagnosed in 1992, is that we cannot do anything about the things that enter our lives………but WHAT we do with it defines how we will end up on the other side.

I’m not speaking of some pie-in-the-sky-life-with-rose-colored-glasses, but I am speaking of trying to move forward at all costs. Sickness, isolation, pain, loss, death cannot merely be wiped away by just sayng ‘life is good’. But what might help is to try taking a few minutes to understand what we DO HAVE as being as important of what we have lost. Take that time. Daily if needed.

Outside of listening to the news to stay informed, I have avoided being sucked into the who is right and who is wrong trying to focus on how to play a role in doing good. Helping someone or a group who have less than you do, is a great way to nurse your spirit back to health. Trust me, there are others who have less and are doing with much less than what you have. If I have learned anything about life, as unfair as it is at times, it’s much more unfair to others. Find those people, and through your pain or anger, help them. In any way small or large, help someone else.

Call someone you have not talked with in a while. Hearing that voice can be heaven. Just hearing someone REALLY want to know how you are does wonders for your heart. So make that/a call. You will be glad you did.

Find someone who inspires you. An author. A writer. A friend. And read something they wrote. Mine came from a most unlikely choice. I came across, Actually, I Can, by Morgan Panzirer almost by accident. I saw it online and what caught my attention was the title; Actually, I Can. It seemed ike a pretty bold statement from any author much less one in her late teens. Almost from the first sentence you feel Ms. Panzirer pull up a chair and sitting across from you she figuratively challenges; “let’s talk”.

At her young age, she has incredible insight which she doles out to each reader as her self-advice she shares in her autobiographical account of dealing with her type 1 diabetes. She holds nothing back sharing her highs and lows (pun intended) regarding her life. She knows she comes from a family that has allotted her much, but she shares in neither a boastful or apolegetic manner. In speaking of living with diabetes she writes, “It has made me appreciate every hour, every minute, and every second I stand on this Earth.” In these most troubled times, her understanding that anything we have should be appreciated, is an important lesson, and in many ways it is taken for granted.

And Ms. Panzirer is correct. Whatever we have should be appreciated. 2020 has allowed me to meet incrdible colleagues who have joined the DRIF, where I work, as well as those with whom I have diligently worked side-by-side for years. People who I have yet to meet in person due to COVID, who have shared their knowledge and drive to indeed keep us focusing on a cure for diabetes. It WILL NOT be here tomorrow but we will stay at it, because someone must. 2020 has introduced me to our granddaughter, who is just the brightest light ever. 2020 has been cruel as much as it has given. 2020 showed an unyielding spirit of those who care (my kids being some of them) in the dragon’s den of fire, they persevere. These people are all heroes.

In 2021, things will not be ‘righted’ very quickly at all, it will take months. A teen-age author reminded me of how much we should appreciate what IS here……..for THAT, I know I am truly blessed and you my friends are part of what I most certainly do cherish in life. Happy New Year and may 2021 move us forward as in hindsght…………2020, becomes just that.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Our Kids with Diabetes…..How do they Do It?

Posted on | by tomkarlya | 1 Comment on Our Kids with Diabetes…..How do they Do It?

How’s your year going?

Been a long one, has it not? Quite frankly, before this year I do not remember using words like COVID, quarantined, and isolation so much. I also hope to never use them again, in the very near future, but we are not there yet.

I’m not so sure, either, how something could get so much out of hand without control. But here we are. There’s surely enough ‘blame’ to go around but I’m not so sure that will accomplish much anyway.

There’s something occurring which needs your attention. Something that may be under the radar.  Something that is constant.  I have written on more than one occasion that everything our kids do; they do with an asterisk.  The graduations, the sports, the recitals, the dances, the successes, the failures, all of it; they do with an asterisk.

That asterisk represents a bear of a responsibility.  A bear of attention that no child should have to muster.  A bear of courage no child should be able to find.  But they do.

This time, in addition to everything else the idea of COVID tries to stare our kids down, right behind their diabetes.  It dares them to not take COVID seriously.  It dares them as a disease that could surely be impacted by having COVID piled on top.  But, as always, our loved ones with diabetes lift their chin and like that great motion in the Matrix……extend their hands and with their hand outstretched motion to, “bring it on”. 

In fact, dare them, to bring it on.

Because that is what our loved ones do and with COVID is no exception.  Our kids wake up in the morning not caring if it’s Saturday, or Monday; it’s just another day with diabetes. They muster up the strength to get through another day.  It’s almost as if they are not giving their own diabetes another thought as they go to practice or live life to the fullest.  They go on.   But make no mistake, there is not a person living with diabetes who will not tell you that it is never OUT of their mind.  It is always on their mind.

The difference is that our wonderful loved ones living with diabetes also know that they have diabetes, and diabetes does not have them.  They arm themselves every day.  They get ready.  They plan for the unexpected.  They are surely better than I could ever be.  They know who they are and unlike those who do not live life with an asterisk, they extend their hand and motion, “bring it on”.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.


What Are We Waiting For?

Posted on | by tomkarlya | 1 Comment on What Are We Waiting For?

How long have you been at this diabetes thing? I mean, maybe you are not REALLY in this fight, but are on the sidelines, does that sound familiar? Perhaps it’s because your child has this disease and you do not really have to do the battles, could that be it? There are always many others to pick up and continue this fight?

This fight? What does that mean? Everyday is a fight. Everyday is a chance that diabetes will win. Fight for what? To only fight again on the tomorrows that will always come? To have to do battle with everything from a disease, to an insurance company, to doctor’s office, to a list of family memebers who still, after so many years, do not have a clue what is like to share a household with diabetes.

The fight to find a cure? You know the cure that’s only five years away. It’s why people choose not to get involved. Why should we? Pharma companies are only hiding the cure; what good is one voice? Pharma companies rule everything, we stand no chance, why bother? The pain is just so much when one fights a lost cause, why bother?

Why give of one’s time, money, resources, connections, and or another ounce of whatever we have left…….why bother?

Listen for a moment…….hear that……..that sound of nothing you hear is what happens when no one does anything.

Me?

Well I believe differently. I believe one should “never underestimate the power of a small group of committed people to change the world. In fact, it is the only thing that ever has.”

Think about that statement……..Margaret Mead’s words of “…..in fact it is the only thing that ever has.”

And the world changed. And it will again, and again, and again, but only as long as someone stands up and says that the norm will just not do. This is not easy. It’s hard. If it were easy, everyone would do it but everyone can’t. The don’t have a child with diabetes. How could they understand if they do not live it? They can’t! You can. You live it. If you do not make this world a better place for your child living with type 1 diabetes; I have a question for you, who will?

Be part of that small group. If you need inspiration, look at your child’s face while they sleep, many have lost their child to this disease while they slept. Yours will wake up tomorrow. What will you do to nake it a better place? Don’t asks someone what they think, look in the mirror and ask that person what they think? Don’t let that person in the mirror out of your sight until an answer is given. Let’s ride into hell together for that heavenly cause!

Never underestimate the power of a small group of committed people to change the world. In fact, it is the only thing that ever has. Think about it!
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.