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’.