Dreams……..Hmmmmmm……Have Any to Share?????

Dream BubbleIn case you did not know, one of my past-life involvement was with the Macy’s Thanksgiving Day Parades.  My title: Pilot.  My Job: To make sure those large balloons get from point A to point B with a crew of about 50-70 people (depending on the year and the size of the balloon of which I was in charge.

This volunteer position started as a life-long dream and it turned out to be a multi-year commitment.  I always wanted to be in the Macy’s Thanksgiving Day Parade and to have ended up in such a pivotal role just made the dream that much more enjoyable.  My friend, Nancy, who was a Macy’s Employee, was instrumental in mentoring through this process and we ended up doing much good for many people with Macy’s donations of everything from stuffed animals to money.

It was a GREAT TIME and I loved EVERY minute of it but it was time to let the younger kids control the balloons and I stopped.  Once you are a part of Macy’s Thanksgiving Day Parade it is part of your life forever.  It never leaves you and you watch every parade with a different eye once you have been an integral part of the planning; even after you are gone.   Macy’s really knows how to treat their volunteers and I miss the entire group greatly.  Much work goes into the parade with but one goal, for the crowd both on television and across the parade route; to see a GREAT parade.  Many parades in the world but none like Macy’s with those HUGE Balloons.

I dreamt about the parade last night.   It was so real, sorta weird too….but that’s dreams.  In my dream, Macy’s wanted me involved but the only thing I felt qualified for was to hold the banner stating that the parade was over.  There is no such banner but there was in my dream.  But that was at the end of the dream, during the dream I saw all of my friends again and felt that excitement in planning the big day.  When I awoke, I could sense all I did from my days when I was involved.  I’m not sad that I am not involved anymore (well maybe a little), I was just grateful I had such a wonderful opportunity for the many years I did.

It has been a while since I had a dream so vivid.  The last dream I had which so vivid was when I was on stage and someone walked to the front of the theatre and told me I need to get off the stage and get back to finding a cure for diabetes and helping those who need it.

I liked my Macy’s dream better.

I guess I could have all  sorts of psychological analysis done to figure what the dreams mean or I can just take them at face value.  I think I’ll just take them at face value.  I wonder if people who have diabetes dream what it is like NOT to have diabetes.  I don’t think I have had an actual dream about times when my kids did not have diabetes…..and quite honestly that is a bit surprising to me; one would think we all had dreams like that….right?

Have you had dreams regarding diabetes?  What were they?  Any ‘good ones’ you have would be more appreciated than the bad ones.  Not sure what a ‘good dream’ about diabetes even means………..but living the nightmare, who wants to hear about them when we sleep as well.  Diabetes and dreams……..feel free to share!

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

Hurricane Coming????……Oh and the Weather Will Be Bad Also.

HurricaneI have been in Florida for part of this week doing many business endeavors and the talk around the town is Hurricane Erika who could be heading directly this way…….or not…..or…well….maybe.  Truth is, keeping an eye on it is probably the best way to describe the feeling of people around town.

A friend of mine is a manager of a retail store and he was sharing that, corporate-wise, they have all sorts of procedures in place with the most important issues being safety and family welfare at the top of the list.  That is a nice thought, isn’t it?  But he also stated how fiercely they were in their due diligence to be ever-ready for so many aspects if/when/should a hurricane hits.

Are you ready for when a hurricane hits?  Here is the thing, when I presented our 504 plan to the school (back in the day); I reminded them that a 504 plan was not only for the obvious, but for the unpredictable, like a ‘hurricane’—-in the metaphorical sense.

You see, the hurricane brings the notion of unpredictable to the forefront of our mind….does it not?   The ‘don’t know what to expect’ but cover all of our bases thought process.  In our world of diabetes, that same urgency of, at least, the fact that we are dealing with so many unpredictable factors are the very same factors we need to be prepared to address.

Hurricane.  Long drives that turn into nightmares because a car breaks down and all of the supplies are…..where?

Hurricane.  Going to the beach and the heat plays havoc on the insulin you have with you and the back-up is at home.

Hurricane.  You go away and left you child with someone not thinking that all sorts of things can go wrong—-what are your back-up provisions; including they cannot deal with your child anymore ‘because it is just too much” and they just did not know how hard it would be…….hmmmmmmmmmm.

Hurricane.  An actual national disaster…do you have supplies to get you through this actual storm/hurricane/bushfire/snowstorm??????

There are many places out there that can tell you what you should do when it comes to diabetes supplies and today’s warning is, simply, this…….be ready, always for the unexpected.  It will never matter about the 3426 times you did something and you did not need it….it will just be the one time you were not ready and needed to be that can make a difference.

Be prepared.  Take the guess-work out.  Be ready.  Define it.  Know it.  Do it.

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

Stolen Parenthood

Tear drop stolen parenthoodAs a follow-up to my article of Stolen Childhood, I turn my attention to us, being parents.  Today I aptly entitle my article; Stolen Parenthood. 

There is an anticipated joy that becomes apparent when we know we will be parents.  The responsibility, as we are all fully aware, is tremendous.  Every decision we make is to better our child.  What happens when diabetes takes up residence?

There is no doubt in anyone’s mind what we do for our children when diabetes hits.  We will do all we can to get their lives as close to normal as possible…….even as I write those words, a lumps sets in my stomach.  Truly that challenge is daunting at best, but we take it on full force.

But what about us?  Do we give ourselves the same shot we attempt to give our children?  Do we strive to do all we can to get our lives back to normal as we do our children?  If not, why not?  Do we buckle our seatbelts for their wild ride yet leave ourselves ‘unharnessed’ in the driver’s seat of our own lives?  Do we just take it as it comes?

All important questions to ask, don’t you think?  I would like to say that our kids are watching and we should do all we can to make it look like we are keeping it all together for their benefit but the truth of the matter is that we need to do more.  Remember that saying, looking out for number one and number one being ourselves?  Listen to me carefully here.  You can find a hundred million excuses why we let ‘us’ go by the wayside, but there is really only one good reason….and that answer is YOU.

No you cannot do anything about your circumstances and you will deal with your kids as you have been doing since day one.  But when was the last time you had your hair done, your nails done, took a walk along the shore or a walk in a park, went to a concert (and almost every community has free ones you can attend), or did anything for just you.  You MUST.

If you do not relax your mind, find a way to relax your mind, everything will be impacted from your own self-worth to every relationship you have.  You must find a way to take care of……..you.

Parenthood is not a job, a business, a vocation…….it is an absolute gift.  Whoever receives a gift and allows that same gift to become the biggest obstacle in their own life?  Who would ever allow that to happen?

Now, there are always circumstances way beyond our control that can really throw our lives ‘into a tizzy’ (as my mom would say).  My question to you is how hard have you tried to hold on to the joys of parenthood.  The joys of life.  One shot on this earth.  That’s it.  What choice have you made?

Look around you, why are some enjoying life at every turn and you just cannot?  There is no magic trick.  There is psychological help if you need it, there are medical professionals who can help, and there are choices you can make.  No one should live life in misery.  If you cannot ‘shake this on your own’ speak to your medical doctor.  But take today and evaluate how you get from point A to point B; and do it.

Look at your life and decide (realize) today that parenthood should be much more joyful than it has been; and take the steps to get you there.  Every day does not have to be ‘twinkle toes’ but every day does not have to be walking on hot coals either.  You deserve better than that…….the challenge remains that the only person who can give that to you……is you.  Now go find YOU!

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

Stolen Childhood

Stolen childhoodIt almost sounds like it could be a name of a movie, doesn’t it?  In as much as I fully understand the fact that so many work so hard, oh so very hard, to make sure kids ‘get back out there’ into the world while managing their diabetes; and am also fully appreciative of the fact that we all do our absolute ‘damn-est’ to equal the playing field, the truth of the matter is we all live with our ‘stolen childhood’.

Well we really do not live with it, we sort of are observers to a freight train running at full speed and we do all we can to keep up with it.  I pride myself that in our house, our kids did everything everyone else did who did not live with diabetes.   We made sure they could achieve anything and everything growing-up.  From the outside world, our kids excelled in just about everything.  One would think that there was nothing different.  I am sure it is not much different in your house as well.

AND THAT, my dear friends is the difference in our world.   IT IS DIFFERENT.

Their lives were beyond different and in fact, we left different back at the gate a long time ago.  No one understands like a parent the hardship, the heartache, and the pain to MAKE SURE that our kids live a full life.  But nothing changes the fact that we DO NOT just go-to-bed at night.  We DO NOT ‘just’…..well….do anything since they were diagnosed.

In fact if you wrote down everything we had to do to make sure our kids ‘just got back out there’, one would take a step back from that list and state; no one could possibly do all that and stay sane.

Sane?

What does that even mean?  Because the simple truth is, on paper, no one could actually do what we do…..what our kids do.  The enormity of it is piled on so high that the stress would break any every day, run-of-the-mill, normal(?)  person.  Most would crack from the medical strain.  Most would crack from the pressure.  Most would crack knowing that at every turn, at any turn, it can all ‘go south’ to being a disaster.  Most……well…..could not do it.

But we do…….don’t we?

Because we are NOT most people.  We are parents to children who live with diabetes.  Some even have more than one child with this stupid disease and no matter what comes our way, no matter how many times we cannot continue, no matter how many times we JUST CANNOT wake up again in the middle of the night, no matter how many times we cannot shed one more tear, no matter how many times we can not give one more shot or change one more infusion set, no matter how many times we do everything we do……..we DO THAT one more time because we have to.

Because whoever decided that we would be given this lot-in-life; we have all decided that diabetes will just not do at winning in our household.  We will do everything and anything to fight, support, advocate, raise funds, and take care of our children.  We make that choice every day, every hour, and every second.

Because it’s so hard when fate/life becomes so cruel and we do all we can to fight having our kids’ stolen childhood……..and we will continue doing our damn-est with every ounce of fight we have.  Because we are parents, parents of kids who live with diabetes.

And I think we’re pretty special…….don’t you?

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

A Short Video to Make You Smile……Sometimes it’s GREAT to be a KID Again.

Jump on meHere is a two-minute+ video that should just make you smile today…….the take away for today: Sometimes we need to do something from our childhood……..just to keep us young, no matter what age we are.  Click the picture and enjoy…….and share it with someone who needs to smile today.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

 

 

 

Do………What You Think Cannot Be Done.

Mt EverestIn my many years as an actor, I have learned to observe.  To take a step back and notice a nuance, a glance, a touch.  People are such fascinating observations in their physical-being, and the human spirit is even more incredible to watch.

I was reading about a friend of mine who hiked over 100 miles recently.  Chip is 57, obviously in good shape, but to take off on that type of journey is inspiring.  He stated that he did not get as far as he wanted, and I am thinking, if 100 miles was not enough, how far did you really want to go?  You could feel in Chip’s words the pride he had in accomplishing something that he did not know he could do.  It was an amazing feat.

We hear of the incredible stories of Sebastien Sasseville who talks about running the equivalent of 180 marathons in 90 days straight across Canada by initializing his speech about arriving on the Summit of Mt. Everest, all hard enough but doing it while managing type 1 diabetes….incredible….right? (FYI the picture included today is Sebastien on Mt. Everest)

And how about all of those people who ride bikes over hundreds of miles for a cause; or attempt incredible human endurance events like my friend Sandy.  Or my friend Sean who rides a snowboard in incredible feats of strength while managing T1 diabetes, and now doing it with lupus as well.

Many of these people are no different from you and I.   Well, wait—Sebastien or Sean? No they are a different story but the others, the same as you and me.  But they all just decided to do something to test their strength, and it was more the strength of their mind than their bodies.  You can ‘get’ your body into shape; it’s your mind that makes the call to begin.

Whatever your ‘Mt. Everest is in your life’, you scale that mountain by beginning.  I have come to know amazing people, people who have gone back to school in their 50s/60s, people who have re-started their life, people who began SOMETHING by saying the simple phrase, “I want to do this, I can do this.”

And make no mistake about it, letting your child with T1D go to their first sleep over can be just as big a hurdle as climbing Mt. Everest.  Fear is fear is fear.  But whatever it is, YOU are bigger than that fear.  Take fear, change it to respect, and give your fear the respect it needs and you can move forward.  We can deal with respect more than we can deal with fear.   One step.  One step.  One step.

So let your child with T1D join the cross-country track team this year…….it feels good when you conquer something and look down from the summit……….try it.

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

DKA and Undiagnosed T1D……Is Still Here…….Just Don’t DO Nothing….Plug Yourself In!!!!!!

DKA Has it gone awayHow do you know if you made a difference; if the point was driven home?  How do you know if the listener ‘gets’ what you are sharing?  What happens when the dust all settles and we move on with life?

A few weeks ago we lost two children in one weekend to DKA and undiagnosed type 1 diabetes (T1D).  The diabetes community was screaming from the mountaintops.  A few months before, another life was cut short;  what have we done about it?  I was speaking to little Reegan’s mom and said, unfortunately, this amount of information and flurry of activity will subside, but hopefully a few people will engage in doing something.  She stated quite matter-of-factly when she answered, “It will never subside for me.”

“It will never subside for me.”

For her or Kycie’s Family, or David’s Family or for anyone else who has undergone this horror, it will not subside. And IT WILL happen again.

Are you still pissed about it?  What have you done?  Don’t answer me, I’m not the gate-keeper here but I ask you to ask yourself.  Have you done anything to help this situation?

Debbie, a d-Mom has. She created Ease T1D.  She writes to me;  EASE T1D has a petition similar to Reegan’s Rule in California with the exception that ours includes the screening of children who present flu-like symptoms.  We have already met with representatives from both our Assemblyman Eric Linder and State Senator, Richard Roth’s offices. We are also helping to assist others with this legislation who want to follow suit in their state. As of now, we do not have an author for this proposed bill, but are hoping for Senator Roth. We will find out in the Fall. Our website is www.easet1d.org.

One person with an idea.

Karen in Pennsylvania created something as well.  It’s called PA-UP Rising Against DKA which is part of a bigger movement called UP Rising Against DKA, more d-moms making a difference.  The PA group is administered by Debbie (who is working on legislation in PA as well) and also Cindy (who also administers the UP Rising Against DKA as well).  There is another site entitled Test One Drop which exists to bring awareness to the need for better screening for Type 1 Diabetes.  You can download a poster from there and place it in your community.  Cindy is the brains and powerhouse driving force behind this as well.  These d-Parents have very full plates as well, but they are finding time to make a difference.

Not to mention all of the amount of work Reegan’s mom has done to make the state of North Carolina stand up and notice.  She is doing all of what she has done with a shattered heart that never can be mended.  She has worked tirelessly to make this world a better place.  She has dropped everything on many occasions to run to her State Capitol to tell, relive even, her horror story so people know.  So people will make change a reality.

People ARE doing things.  More needs to be done……we need you.  Download a poster from Cindy’s site or you can go to www.GetDiabetesRight.org as well.  Even here people are helping as our friends Jimmy and Mila of the incredibly huge site for those who speak Spanish www.FamiliasconDiabetes.com will be translating some of our posters into Universal Spanish.

With school getting underway, contact the schools activity coordinator, contact groups like the Boy Scouts, Girl Scouts, 4-H, Royal Rangers, Daisy Groups, and any other group that values community service and ask them to distribute posters in your neighborhood.  Just a little effort can go a long way.

Legislation will take time…….there are steps that can be done NOW.  Let’s not wait until ‘it happens again’……and I have been at this a long, long, time; you can bet your last dollar it most assuredly will happen again……………..it’s just up to all of us to do all we can to make sure it doesn’t.  I am sure there are people doing things in their own way and THAT’S GREAT, I am seeking those who still have yet to try.  If you are ‘maxed out’ in what you do for the diabetes world….fine; but if you are looking to get involved somehow…….this is the initiative that can truly make a difference.

As Reegan’s mom shared; “It will never subside with me.”   Can any of us, really, just sit by and just do nothing?????  Don’t just do nothing.  Start now……the wheel is invented….just plug yourself in.

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

 

School’s Open…….If One Roars ALL THE TIME…..It Won’t be Heard.

LionWe took every precaution there was.  We read-up on what every parent suggested.  We had back-ups of back-ups.  We met with the nurse.  The kids were all getting a letter home in her K class so everyone was on the same page.  Our 504 plan was in place.  Jill had quit work so she was ready for anything………and still the poop hit the fan on day one.

For reasons way beyond our control the bus took a different route and dropped Kaitlyn off almost an hour past when she was supposed to be dropped off.  This was way before cell phones and this was actually back-in-the-day when you could not be in contact with the bus driver.

This was Day One.

I tell you that so you know, I totally ‘get’ the frustration with what can happen on the first day of school.  Imagine the panic of not knowing where you child was/is in general; and now add to that the anxiety of your child not only having T1D, but on the VERY FIRST DAY of school in her life.  Not 10 minutes late, not 20, not even 30—-but an hour.

Got that feeling in your stomach?

Why I was not arrested for murder that day was probably sheer luck that I could not get to the school.  But it was a lesson learned, a crucial lesson learned.  No matter what you do, SOMETHING is going to happen.  I also learned that in a school system, this may surprise you, they do not revolve around our kids with T1D.  Do they care?  Sure they do and that is why they became involved with the school district to begin with; in most cases they LOVE kids.

But they also have to deal with hundreds of kids every single day at any given moment.  Now hear me correctly, when something goes wrong they need to also be responsible.  And more importantly, they (and we) need to be responsible in advance of something going wrong.  But even after every step being taken, something will derail.  It’s at this point that WE NEED TO BE AT OUR BEST.

Remember when a mistake is made, your most important objective: to ensure that it never happens again.  How you get there is up to you.  But your actions will dictate how successful your future will be.  Being upset is absolutely understandable but always remind yourself that the next step is to correct it.  Respectfully, firmly, and respectfully—-yes ‘respectfully’ is listed twice for a reason.

There are too many scenarios to list one-by-one but just remember your actions set the ground work.  When Kaitlyn’s stop was missed, as angry as we were, she was fine.  We did not contact the principal every time something happened.  If we had to work it out with the teacher, gym teacher, and/or school nurse, we did.  We went to the principal only when needed, and they responded over the years.

School officials may know because they know; they may know because you told them; but they DO NOT KNOW your child as well as you.  Your child(ren) are your world.  I know the force of ‘mama-bear’ and all that goes ‘with it’, but just remember that NO ONE knows ‘your child’s every move’, like you do.

Again, I am in no means making excuses for anyone but I’m reminding you that your child has to be in school every day; pick and choose how to correct a situation and when to roar.  Roaring all the time only makes people immune to hearing it when it is happening all of the time.

Take a breath and always remember your objective—–to CORRECT the situation.  Food for thought.

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

NEWSBREAK: ATTENTION ALL NORTH CAROLINA RESIDENTS……SUPPORT NEEDED…….NOW.

ReeganWe are looking for Reegan’s Rule to come out of the North Carolina Senate Committee and be bought to a vote in the North Carolina Senate.  The bill (which is House Bill-20 and is now Senate Bill 27–REEGAN’s RULE) will encourage diabetes education by medical professionals to parents through the first five years of a child’s life.

We have worked with Representative Graham in the house and the bill passed in the House 111-6; and now Senator Smith has picked up the support and working with Reegan’s mom we have created a letter and we now need D-parents and friends who live in North Carolina to help the North Carolina Senate show the same leadership on Reegan’s rules by letting the Senators know Reegan mattered to all of us. This is a picture of the North Carolina Senate, empty. Let’s fill it with supporters of (click here) REEGAN’S RULE.

My friend and fellow D-Dad Bennet Dunlap at the Diabetes Patient Advocacy Coalition has created an EASY WAY for people from North Carolina to send their State Senator an email asking to support Reegan’s Rule. Submit your address and zip into Diabetes Patient Advocacy Coalition’s software on a form. It looks up your North Carolina Senator and prepares an email. Easy.

You can send it as is or even better personalize the email with you diabetes story. We recommend adding a few sentences about your connection to type 1 diabetes right at the beginning.

Here are the 5 easy steps:

  • Go to the page from here.  Enter you name, address, Zip and email.
    (We would appreciate you clicking remember me and opt in at the bottom of the form so we can keep you in the loop on this and other diabetes issues–but it isn’t required)
  • Click SUBMIT to create a draft email.
  • Personalize your email.
  • When you are happy with it click SUBMIT to send.
  • Share the opportunity to act with your Social Media contacts so other can follow you example and act to support Reegan’s Rule

Right Now – Our focus is on the North Carolina Senate. This advocacy form is for people living in North Carolina to contact their State Senators. Our hope is to be successful in North Carolina and build from that experience to wider efforts – Stay Tuned. For now – the form will not work for people living in other states, people in other state will get an error message – sorry. (But the Diabetes Patient Advocacy Coalition has other actions you can take, click actions in the menu at the top of the page.)

Any questions, just ask but please pass this to anyone living in North Carolina.

TOGETHER, we can do this.  Act Today!!!!!!!

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

 

 

You COULD Miss Out if it’s Done only the Way YOU THINK is Right.

my wayI’m always amazed at the stories I hear out there.  the lack of knowledge is truly astounding.  From us, as parents, to the medical profession……the comments I read so often boggles my mind.  Actually, it used to infuriate me but it happens so often now, I am down to ‘eye-rolling’.

There is also a very dangerous thought process out there that is in-line with “you can’t tell me what to do with my child.”  I agree, no one can.  That said, there are some very basic thought processes about the science of diabetes that we parents need to face head on.  Because you don’t think it applies to you, does not mean it does not.  Be careful.

I get it.  I really do.

Because ‘we say it’, does NOT make it necessarily true.  And the more you do something incorrectly, the more you are ‘off’ from the original. Constantly ask yourself if the things you do are ‘sound’.  Not in a discussions, but you, yourself; when all alone—–this IS NOT about BEING right, it’s about DOING what’s right.  When I first heard of the artificial/bionic pancreas; my initial thought was just, ‘no way’.   What was everyone getting so excited about?  But the truth is, no matter what I felt back when, if I did not do more homework to understand what was happening, I would not have come to appreciate all that is happening in that world as I do now.  If I can change, anyone can change.

The original insulin pumps were the size of a spaceman’s back-pack; look where we are today.  My point is that no matter what I THOUGHT, it was merely that, my thoughts.  It was not until a good friend ‘forced me to REALLY look’ at what was happening in this field to fully appreciate it, and to realize my thoughts…….were wrong thoughts.

Don’t be afraid of something you do not know and surely DO NOT RUN from it.

I’m constantly going over my internal checklist on management tools, insulins, how-we-do-things, medical practices; I then go over what is new out there.  What is new?  Am I using it?  Will it make a difference?  If words like Night Scout, the Cloud, Bionic Pancreas, BioHub, CGM, I-let Pump, Fast Insulin, and Nasal Glucagon—-are all words that are foreign to you…..do not be afraid of them…..look into them.  Some show real promise in many areas of our lives.  Some may mean nothing to you……but find out.

We cannot be afraid to learn……ever.  We cannot be afraid to ‘re-look’ at everything every chance we get.  It’s truly an exciting time when it comes to ‘diabetes technology’ and just because we do not ‘do something’ does not mean that we are doing it correctly; you could be missing out.

What you don’t know can’t hurt you…………is a saying that we need to throw out the window but we also need to be ready to realize that truth is truth….whether we want to face it or not.  And THAT is not always easy……..is it?

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