Painting Your Child’s Diabetes…..Careful, it’s Not your Canvas

I saw a picture this week, a child in a hospital and the person who posted it wrote that this was their life with diabetes, that no one knew what they went through, and this is their world every day, all of the time.

As I read this story, I felt bad for two reasons……the first, and obvious, is that no one wants to go thorough their life with a child in a hospital for any length of time. The second is that this person truly believed that this IS their ‘world, every day’, how sad.  Our life was not this, ‘every day’.  From my kids’ point of view, yes they have a disease. Yes it sucks.  But they hit it head on and move through, on, and/or around but they do not stop due to this disease………….ever.  They accomplished what any other child WITHOUT diabetes accomplished.

Bad days?  You bet.   Time they want help to take a break from a CGM and/or a pump?  Of course.  But for the most part they realized the only way they can move forward is to……well, move forward.

If I was a child of fourteen-or-so in a hospital stay from  a low blood sugar, I’m not so sure how thrilled I would be if my dad posted a picture of me on social medial for the world to see.  If you think that it does not matter to your child, you better think again.  And if you think that they do not see things like that on social media……..you better think about that again as well.

It’s a tough balance because; for whatever diabetes charity one is involved, it’s important to move people to give and help those causes, and that is great, but also do not be afraid to ask your child what they think on the picture you are about to post or the story you are about to tell.  Ask them.  And listen to their answers.

When I write or I post, I have guidelines from my kids.  Twenty-six+ years into this I still remind myself daily that I do not have this disease.  I do not know what it’s like…..not for one second.  I respect their space, their feelings, and how they want the world to see their diabetes.  It’s not my disease.

I can speak from/as a parent but that is all I’m allowed to speak about without asking them.  Richard Rubin, one of the leading psyche-social-aspect-gurus of all time taught the meaning of the balance of respecting our kids and helping them understand that their life is not ‘just an open book’ because we think it should be.

Remember this the next time you are trying to make a point about this world of diabetes.  Know that this word is your child’s world 24/7/365……if you think you own it, your children will never learn to.  And the faster they take it on as their own, the better you will all be.  Help them through ALL OF IT but don’t assume you have rights without asking them.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Tennis Balls and Syringes; How the Diabetes Ball Bounces

Here we are for our 27th Diabetes Awareness Month.   Ahhhh November.  The thing I always share with parents is the fact that no matter how much time we spend on this journey, whether diagnosed last week, or 26 years ago, it makes sense to look back to the beginning and realize just how much we learned.

Because whether it is a short time, or a long time, one thing I know to be true is that no matter how much time passes, we gain knowledge every day.  Don’t we?  We start with the realization that we have no idea what this disease is about, and how to handle it, to meeting with newly diagnosed parents sharing with them that they too can do what we all have done.

One-day-at-a-time—–and breathe.

The other day I saw a tennis instructor working with a young pupil.  A basket full of tennis balls accompanied the teacher.   I’m not a tennis player and know little about it other than what I learned the times I tried it in my youth.   This was a new visual for me.  Tennis ball after tennis ball after tennis ball went from instructor’s racket over the net to the student’s racket.  It clearly was a practice they had done hundreds of times because the student knew, without a spoken word, when to move to different parts of the tennis court, or to use a backhand or overhead swing.  It was fascinating to watch.  Hours and hours and tens of thousands of tennis balls……tennis ball after tennis ball after tennis ball, again and again and again.

Every now and again the student would get frustrated because a shot was missed.
“Grrrrrrrr” came the noise.
All for one goal—-perfection.

We, too, do the same thing when it comes to our children and their diabetes management.  Again, and again, and again we try, striving for that perfection.  Perhaps we need to give ourselves a break sometimes because we are going to be right back at it tomorrow, and the next day, until such time that the ‘break’ we wait for arrives and this disease is cured once and for all.  But until such time it’s injection after blood check after treating a low after injection after blood check after treating a low after injection after……..

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

Our Child’s Scariest First Dive

This may not be big news to anyone, but my little guy gave himself his own shot today.
Point: This IS BIG NEWS to anyone who understands that our children, once diagnosed, not unlike us; face incredibly ‘firsts’.  To me whether you are jumping off a cliff into water 80 feet below or taking an injection of insulin for the firs time——the unknown….is just that…..unknown.

Having the courage to say, “Mommy, I want to give myself my own shot today.”  Well to me, that is a huge step in the life of a child living with diabetes.  To begin to say, “This is my disease, I want to take control of it.” That’s huge and is a big step in any child’s life.

We, as parents, as much as we may try, have no idea what this might be like.   Think about it.  One is diagnosed.  Months go by and hundreds of blood-checking and insulin shots have occurred in your little one’s body.  They watch, but they really do not understand everything, they might nor even understand much at all.  But something clicks in their little minds; Why is mommy doing this to/for me each and every time, numerous times a day?

They ask themselves that question.  And each time, for days and weeks, they watch as insulin is given.  And at some point it hits them; why does mommy have to do this, I can do this.

Then, for a number of times, they ask the question inside their own heads at first.  Not sure what it means nor what you will say when they ask.  Again, again, again, and again they watch and the words are on the tip of their tongue.  Then, as if a voice from way down deep inside pushes their tiny thought our of their little mouth;  Can I give myself my shot today?

The world stops dead-in-its-tracks as parent and child stare at each other.  Almost as if the disbelief from the one hearing it,  is matched by the disbelief of the little one saying it.   They stare at each other.

Mom will speak first.

Ah……um…….sure honey.  If you want to try it.  Sure.

Mommy smiles as she hands the insulin to the waiting child.
The child has seen it hundreds of times, they know what to do.
Still, there is that moment.  That moment of the unknown.  The child does it, takes the injection, lifts the needle out and looks square into the eyes of mommy.  The child smiles.
See mommy I knew I could do it.
Mommy smiles and hugs her child tightly.
Yes baby, I knew you could.

The child runs and goes to continue playing outside with the incredible feeling of accomplishment.  The first step in taking on their diabetes.

Mommy smiles until her child leaves the room and is outside playing again.
She drops on the bed and cries her eyes out.

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

 

A Small and Gorgeous Country…….We Could Learn Much

I just arrived back home from vacation.  Once a year I try to ‘get away’ as they say; because a battery drained is no use unless it is charged, this charges the batteries.
While visiting the country of Jamaica, two things truly stick out in my mind.  One was  speaking to/with the hierarchy of where I was staying as their ‘brand’ is located throughout the Caribbean and might be able to play a valuable role in our (the Diabetes Disaster Relief Coalition) efforts in helping people with diabetes during hurricane season (okay, so I don’t ‘turn off’ completely) in the many islands that seem to get hit the most…..we will see if these conversations become fruitful, time will tell.

The second thing that truly stuck with me were the people of Jamaica.  What they lack in size, they make up with pride.  As one travels the country, it is quite clear that money is not plentiful, possessions are not plentiful, and many parts of the country have much less than others.   Workers, every-day people, supervisors, drivers, elected officials; what is clear is that, despite the lack of what many of US would call ‘our rights of possession’, these people do not need and hold dearly their right to LOVE their country.  It’s no wonder their Country’s motto is so well accepted, Out of Many, One People.

I had the wonderful opportunity to hear from so many who call Jamaica their home.  One woman shared that she was not in favor of the political power now in control of the government of Jamaica.  “There are three, really two, political parties in my country.  I did not vote for this one.”  When I shared the political divide in our country she continued, “…yes, of this we are aware.  But in my country, so rich and full of so many things, no one person could ever take away how I feel for my country.”

No one person could ever take away how I feel for my country…..let that sink in a bit.

It struck me that, even in our diabetes community, we sometimes forget how much we do, actually, have.  We surely do complain at the drop of a hat on something being unfair, and that is within our rights.  But when we look upon landscape of all things diabetes, and for that matter in our country, have we forgotten how blessed we are? Does one person, or one entity, control us that much that we forget what we DO HAVE? Does one person or one entity stand that strongly that they hold us to stay focused on only what is bad and what divides us; whether it be the cost of our medicine or the system of politics in which we disagree.

One transportation driver shared with me that he was not so sure why we allowed the bitterness to even exist.  “In my country, mon, we do not understand why Americans are so angry when they have so much blessing.  Why does one thing, one event, or even one person, get all the attention. With this, we do not do here. Life is a celebration, mon.”

I could write on and on.  But my question is a simple one; which one of these control us; our anger or our love for all that we DO have?  Do we remember our own country’s motto which we have all heard for years and years……E Pluribus Unum? Do you know the translation of Out of Many, One.

Seems our friends of the sun drenched tourist destination of Jamaica, small and poor as they are, understand it a bit better than we do.   Perhaps we should follow their lead on knowing out of many, we truly are one……..or should try harder, at least, to be so.

I am a diabetes dad.

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

Halloween…..R U Afraid of Diabetes and Candy?

Many have asked me to rerun this article—here it is with just minor changes.

This month is 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 comment.

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 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 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.

I remember many conversations from people who do not live with diabetes in their household 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.

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 every other 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’.

 

When they Die……….the Reflection is in the Mirror

Someone died.
I know you are thinking of a young lady who was taken too soon.  It’s sad, isn’t?
The diabetes community turned their lights to blue candles, as they do, and the outpouring was just everywhere.

It made me think.

Today is also the 5th anniversary since Little Reegan was taken from us.  That’s sad too.  The list is long, Reegan and Kycie who passed before (or due to) their diagnosis and Sophia who passed after her diagnosis; results in the same sadness…..doesn’t it?

I ask, as I always do……but are you angry enough to try to change it?  Are you sad enough to try to make it not happen again?  Are you moved enough to not sit back and wait for others to do the lifting?

Now hear me…….if you have, or are, doing to the best of your ability, I’m not speaking about you.  I do not care how small or how insignificant you think what you do might be, the fact is you are doing something, and something……is not nothing.

I know that each time this happens, each time, each time ANY child dies, and I would do it the same way if was my own; I look into the bathroom mirror and look at my reflection and I say the words, “Are you doing everything you can?”  I do not answer right away. I think of those I know who have been lost and I think of those who I love, and then I think of my two kids who continue onward with this disease.  When I’m done with that thought process, I look at the image looking back at me and I literally ask, “Tom, do you think you are doing enough?”

What happens between me and my reflection will stay that way and yours should too.  The answer should remain yours also along with the actions you take.  No one’s business but yours.   But for the sake of those we need to stop from dying, for those we need to educate so they do not die while not knowing, and for all the those that live every day…….it’s my hope that each and every one of us, alone in the bathroom, ask that reflection, “Am I doing all I can?”

Because if not us…………who will?

Rest in Peace little ones…..your memory will make a difference.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Death from Diabetes……A Small Glimmering Light has Arrived

By far, this is the hardest thing that I have been involved both in and with; on our diabetes journey and within our diabetes community.  It is hard.  It is sad.  It is reality.  And quite truthfully it just sucks.

The number one thing that occurs when someone dies in our diabetes community, is the loss of what to do when it happens.  What can we do to help?, is asked over and over again.  What to do, what is right, how to help.  Now there is something with true substance that we can all do when someone passes away.  And unfortunately, it will happen again.  My picture today is the blue candle, but I have added a glimmering light, small as it is, because it is a light that many families will need at their most difficult time, that may now be there to help.  Somewhere to turn when so all alone.

Today is National Bereavement Day and Beyond Type 1 has ONCE AGAIN stepped up, to help our community. I believe that Beyond Type 1 (BT1) is truly one of the most remarkable organizations in existence.  What no one touches…..they hit head on.  Listening to Sarah Lucas, Thom Scher, and/or anyone at BT1 when they discuss diabetes topics, you feel their passion–it becomes tangible; their actions are a force, their actions are quick, their actions have substance.

Today, this wonderful organization has partnered with one of the people I respect most in this battle, Michelle Page Alswager.  Michelle lost her precious Jesse at age 13.  Others may just give in and give up, and truthfully, no one in the world would ever blame them.  Michelle has taken her grief and reached out to help as only someone who has experienced this pain can…….she has made it a rallying cry to help others.  She has been an advocate for years to those who lost someone and, as is their custom (missed diagnosis, Tu Diabetes etc), Beyond Type 1 has stepped in to fill a void, and if you know BT1, you also know they do nothing halfway…….this is no exception.

Jesse Was Here
From their new website page:
Launching August 30, 2018, Jesse Was Here was inspired by Michelle Page-Alswager’s experience after the sudden death of her 13-year-old son, Jesse, from Type 1 diabetes. Grieving the loss of her child, and the potential loss of the diabetes community, she created an online community to support parents who had also lost their children to Type 1 diabetes. By connecting with others who shared her experience, she realized many of those seeking support and opportunities to honor their loved ones, also struggle with unexpected funeral expenses, ongoing medical bills and sometimes even the funds for a headstone. Through her efforts, she discovered many others — not just parents of young children — were looking for peer support, practical information, coping tools and financial assistance. Working together, Michelle and the team at Beyond Type 1 are creating a very special program to serve this unique and deserving community.

Keep this as a resource because, the painful reality, it will be needed.  While you’re at it, give a few bucks to them as well because in reality, they can only help with what they have.  If you have ever asked, How can I help that family?—-now is your chance.

Truthfully, I hated writing this article today because it just reminded me of just so much pain I have seen others go through over the years.  But it is comforting to know that people like Michelle are not afraid to walk-the-walk, and organizations like
Beyond Type 1 are not afraid to listen, and step up.

It is what makes being part of the club none of us wanted to join; a little more bearable.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Diabetes Disaster Response Coalition is Activated—Hurricane Lane

The Diabetes Disaster Response Coalition was created after years and years of people wanting to do something, AND DOING SOMETHING, but without a cohesive effort so the entire diabetes community knows what to do in the time of disaster.  This is the only time I will speak in general terms about this group…..moving forward, when you see the logo, it will be an indication that there is an update as this column will be turned over for information about a particular disaster.

During times when you want to help, go to the Diabetes Disaster Response Coalition FB page for up to the minute information on how to help.  There is a great body of people involved on this Coalition co-chaired by Carol Atkinson (Insulin for Life/USA) and Kelly Mueller (American Diabetes Association) because that makes sense.  There is a lot of things making sense with this group.  At some point I will fill you in on who is involved but let’s get right to the nitty-gritty with information on what to pass along to your family and friends in Hawaii who might have diabetes concerns.

The most important information is what YOU NEED to do to be prepared to handle your (or a loved one’s) diabetes care during the upcoming storm:
CLICK THIS LINK FOR PATIENT PREPAREDNESS

1. Documentation. Write down type of diabetes you have, other medical conditions, allergies, and previous surgeries. Include current medications, doses, and time you take them along with your pharmacy name, address and phone number.

* Prescriptions. Ask for an extra supply of all medications, including insulin and Glucagon, if prescribed. During an emergency, you are eligible for an emergency override. Call your pharmacy, if they say no, contact your healthcare provider for an altered prescription. Warning: Insurance may not pay for the increased amounts.

2. Insulin. If you lose power and you have unused insulin, don’t throw it out! In an emergency, it is okay to use expired or non-refrigerated insulin. 3. Shelters. A live map of open shelters from the American Red Cross can be found here. You can also contact the American Red Cross directly at 1-800-RED-CROSS. If you find yourself in a shelter without proper diabetes care and supplies, call 1-800-DIABETES.

4. Statewide Updates. Emergency updates and other resources can be found here. Hawaii Emergency Management Agency. http://dod.hawaii.gov/hiema/

The Diabetes Disaster Response Coalition FB will be updated as needed.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

CGMs Upon Diagnosis Moving Forward? Thoughts?

I’m sure there was a time when people were dealing with their diabetes; and were used to peeing in a cup, boiling water, dropping in tablets to match a color chart, and check the color of urine to see how much insulin was needed, they were content with the procedure because it was really the only choice. You did it this way because that is the way it was.  And along came a study that showed close control of blood sugars could help enhance the life style of those with diabetes and even prolong lives.

What happened?

Well the pharmaceutical business EXPLODED with devices and treatments never seen before in our diabetes world.  What was a 30 minute process, minimum, was now being done in 30 seconds…….but there was a catch.  The individual needed to harpoon themselves 4-8 times daily to produce a drop of blood used to measure the glucose when applied to a strip attached to a meter.  That was the tradeoff.  It was better and faster but to the individual, was it ‘better’ to stab oneself in the exchange of faster and more accuracy?  That is the way it was.

You see if you have been around in this diabetes world twenty years or less, you really do not know anything else but glucometers as THE DEVICE to use.  You became used to ‘harpooning’ yourself because that was the way of the world and you were taught nothing different.

What happened?

An all-out war broke out in the pharmaceutical world to be the fastest meter, the most compact meter, and the most accurate meter.  And work began to improve upon ‘the norm’; to make it so no blood drop was even needed.   A way or a means to check one’s glucose constantly and on a device where the information was sent electronically, constantly……..like predecessor management tools, it seemed like a dream come true.   But it happened and the continuous glucose monitor (CGM) is now a part of our every day life……..for some.

“I do not want to wear something all of the time?”
“I’d rather do it the old-fashioned way with a meter.”
“Being attached does not seem right to me.”
And if you did not always use a CGM……that is your call.

But we bought up a generation of kids who knew nothing else when it came to harpooning themselves to obtain that drop of blood…..it almost seems archaic, doesn’t it?  But they surely accepted it as ‘the norm’.  It’s time to bring up a new generation of kids.  Kids who know nothing else but wearing a CGM………because it makes sense.   The glucometers are becoming less and less and more people are on a CGM than ever before.  Sure we need glucometers, but now they are mostly a back up.

It makes sense that there is something that can alarm when you are low and warn you.  It makes sense to have a management tool almost the time you are diagnosed that can help prevent those swings from low to high and back low again that leaves the person with diabetes feeling like that they are in a spiral in all sorts of directions.  It makes sense to wear something that checks one’s blood sugar constantly.   I’m sure when the choice was to pee in a cup instead of harpooning yourself, it seemed likely to stay with the old way, it was easier………but we now know it was NOT better.  Was it?

It’s time to once again challenge ourselves with something better and not necessarily easier. A CGM should be given as soon as a diagnosis occurs.  We need to ask those questions once again?  From the moment one is diagnosed.

What do you think?

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