Staying Positive After Diagnosis……..it’s Learned, it’s NOT Automatic

Staying-PositiveHaving a diagnosis of diabetes in the family is surely a huge kick in the gut-knock-the-wind-out-of-you moment.  I have stated before how much I like the movie Shawshank Redemption.  In the movie, the emotional state of a prisoner, is mentioned, during the moment the cell door closes behind them and they hear it lock for the first time.  It is the realization that they are incarcerated from that moment, moving forward.

Sound familiar?

To be clear, everyone will have times that just take us into really dark moments.  Times that are hurtful to our entire body.  Real pain.  As parents, it would not be normal to be otherwise.  Know this.  Accept this.  Know it is okay.

How is that some seem to be able to handle this ‘life sentence’ with more hope, more positive attitude, and more living so ‘up’ than others; despite everything that is faced on a day-to-day basis?  How?

I can tell you that it isn’t easy.  But I can tell you that the fate of how you live, believe it or not, will lay in your own hands.  I cannot speak for everyone, but I can share with you a few things that drive me forward.

Number one.  I will never lose faith that a cure will be found in our lifetime.  I hear all the voices out there and all the sides of the discussion.  Twenty-two-plus years at this, I have heard much.  Good.  Opposing….and otherwise.  This is not a blind feeling.  I work at the Diabetes Research Institute Foundation (I share that in fair disclosure and in my search for my best efforts, that is MY choice where I want to give my time, even professionally as a career); and all you have to do is look around, and do a little research, and you will see scores of other places that are involved in funding and/or actually being the ones that ‘do the science’.  Find someplace that you like, and follow the world of research closely.  Be part.  You learn so much less as an observer than a participant.  Get involved.

The reason that I stay hopeful is that I have been at this for 22+ year.  And let’s be clear—-in as much as some have said they’ve been hearing about a cure for so long that they are tired of hearing it; I take a different approach.  I see more advances in the last 15 years than the hundred before……..that is encouraging.  Will it happen tomorrow or in the next 2 years?  No it won’t.  But I have educated myself enough to know what is real and what is not; and know that there are enough projects around that are good enough to show promise and different enough to advance the dream of a cure further.  But do your homework yourself and you will see, but as you search, know that a few years ago there was nowhere near what there is today.  Also open your mind to ‘not care’ who gets us there first but maintain a positive-ness on, and toward, any science that moves the dial-up a notch in that search.

Second.  Look at the kids who have diabetes and how they excel.  I have the wonderful opportunity to see kids do wonderful things all the time and they do it with diabetes.  Not everyone goes to the Olympics or play professional sports with diabetes; but they do excel in so many different areas.  Diabetes stops them from nothing.  Attach yourself to these type of people.  Get to know them.  Learn how they became involved in sports, the arts, school activities, and in life.  No one, or nothing, will inspire you more than watching your own children.  Help them and that leads me to………………..

Third.  Education.  I cannot emphasize enough how crucial this aspect is in staying positive.  Fear. Uncertainty. I find that more in people who really know little about what diabetes is all about.   They are reactionary.  They hear people say certain things and since they don’t know, they accept it as truth.  And since they do not do more work themselves, it results in fear.  Do not rely on ANYone’s word on ANYthing.  Find out for yourself.  This is also very important for day-to-day management tools that are in the pipeline as well.  CWD Friends for Life, Camps, support Groups, Fund raising events that have health fairs, and research update meetings; are just some of the places where you can usually go and hear about new and/or existing products.

When we started, the insulin pump was a pipe-dream at best.  It was the size of a space-person’s backpack.  “No way”, “We’ve been hearing about it forever”, “Yeah, sure—some day—what does that mean?” Were all very common statements and here we are where the insulin pump is in everyday use.  The same goes for the CGM>

I cannot be clearer.  Things take time.  More time than you can ever imagine, and never fast enough for us parents.  But as long as you see people working on these things, know that it is all moving forward.  I’m always excited that tomorrow….does come and with it comes new advances.  Believe in it.

Our kids could die.  (There I said it.)  But the more you know, the more you can live a life in control of what will happen.  After that, it’s not in your hands.  It is not exactly like driving a car, but there are parallels.  Do everything you can do to teach them and after that, they truly become on their own.  The car gives them so much more to enhance their lives.  Do you not let them enjoy life because of the amount of people who have died in car accidents?  Do not let them NOT enjoy life, even with diabetes.  Give them the tools.  And say a prayer too.

All of this does not happen the first week after diagnosis.  But the more you help them excel, the more positive life you will have.  THAT only happens when you educate your self first.

Even if you have been at this for some time; remind yourself how far you have come and ‘re-up’ the effort you once had; and if you are new; there are wonderful people and opportunities out there for you to get to know.  As you help yourself, you help your child.
It is all just that simple………it just takes a lot of work.  But in the long run; you will all win.  Get started.

I am a diabetes dad.

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

 

 

 

Encouragement Vs. Correction……Which Do You Choose with your Child?

two roadsI remember a commercial from years ago.  Two little kids are seen bring a breakfast tray full of goodies for their mom to have breakfast in bed.  She just loves the fact that the children thought of her.  The kitchen, of course, looks like a bomb hit it.  But the sincere generosity of her kids trumps the mess she knows she is about to clean.

Everything in this battle is about choices and balance.  Which means at any given time we have decisions to make.  When it comes to our kids, if you get any measure of success, you truly need to encourage it as much as possible if you ‘want’ to see more.

Imagine the delight when we knew that Kaitlyn was carrying around ‘back-ups’ on her own.  Years ago, of course, but I remember seeing items in her school bag that we did not put there.  She was making correct choices.

We, sometimes, forget how very observant our kids can be.  They watch everything and notice everything.  They will, at some point, start to put things together in their minds and may not get it exactly right in the beginning.  I sometimes think that we are faster to correct what they are doing wrong than to encourage what they get right….and we need to be better at the encouragement.

Kids do not think like we do; and we should not expect them to.  If our children decide that they should carry around something in case they go low, they may not actually think to go and get when they need it.  They may be in the car and say, “Mom, I feel low”, before they even realize that they have already prepared for the situation.  They may not put those two pieces of the puzzle together in their young minds just yet.  So do you get on them for not thinking of that, or do you congratulate them for remembering to bring it.

These ‘teachable moments’ happen all the time but we miss them because we are too fast to see what is ‘not’ being done instead of what ‘is’ being done.  Keep an eye out for them and ‘connect those dots’.

“……..you feel low honey, what did you do today before we left to help with that?”  Can work so much better than, “…..why are you asking me, I don’t understand that you just don’t think.  You need to grow up a little bit.  Look in your bag.  YOU put them there.”

Now those two sentences may not seem ALL THAT much different.  But your kids will pick up on your tone and EVERY one of your words; encourage them at each turn you can; it will pay off in the long run.  The kitchen can always be cleaned up, and the lessons can be incredibly valuable if you choose the correct path; which in the long run will pay off so much higher than a temporary means of blowing off steam.

I am a diabetes dad.

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

 

Next Time Your Child ‘Gets it Wrong’……..Remember this!!!!!!

yelling at your kidHave you ever just stood back and watched your child?  I do not mean while managing t heir diabetes or sleeping, but rather, being involved in an activity that takes their full focus.  Have you ever really watched them…….’participate’?

I hear so much about the modern-day tools for management, and the hope for a cure, and the many, many activities for fund-raising and advocacy; diabetes this and diabetes that……..but I invite you to stand back in the very near future and just watch your kids, be kids.

Now that may sound like a silly thing to say and of course we all know this……right?  Do we really?   There is something to be said for taking the time to just realize the resilience we wish we had, the focus one can envy, and the energy we all think we once possessed………and our kids do it all with diabetes.

Know this, and understand this, WE DO NOT HAVE IT.  We truly, have no idea what it is like to live life in their ‘first-person’.  Yes, as parents we observe a lot and react to much but remember that for 24/7 they have this and yet, they do what they do.  Just think about it…….I find it amazing?

Now add to that; they play hockey, baseball, play outside, sing on stage, play the school band, excel in studies, participate in activities, are a part of scouts, participate in their church group, advocate, fund raise, educate, learn, and on and on and on and on.

Remember this the next time they may ‘do something wrong’ in their day-to-day management.  It’s easy to yell, or be stern, at them all the times they ‘get it wrong’, but here’s the thing——this is not, ‘clean up your room’.  I get that we ‘are doing this’ for their benefit.  But never forget that this is a life changing disease for them that, every now and again, they deserve a break from—–well, at least our chastising……..don’t you think?

Think about it.

I am a diabetes dad.

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

 

Low Reaction and One Mom’s ‘Must Have Item’ May Surprise You!!!!!

going lowWhat happens when your child experiences a hypoglycemic reaction?  I have written before the importance of being prepared by having ‘practice runs’ and not waiting for the actual incident to know what to do.  Know where everything is and utilize expired glucagon to actually mix it and be ready.

What you also need to know that is if your child experiences an extreme low and you treat it with or without glucagon, your child will not just ‘pop’ up and be ready to go.  Think of the last time you were drunk…..that is sort-of what your child is feeling.  The recovery time after treatment varies with each individual but know that it takes 15-30-45 minutes until they star to react to what you give them.

The other thing to remember is that, depending on how bad the low reaction is–and depending on how it was treated, the rest of the day and maybe even the next could be shot also.  It is so different in each individual but know that recover time is important to understand and your child’s may differ from someone else’s in quantum leaps.

So when treating a low, give it some time.  Know that your child’ state of mind is altered.  They may (and probably will) say things and do things that they do not mean and in most cases will not remember after the incident has passed.  I call on others to chime in today about what you have noticed about treating our child’s low reaction that might help others?

One mom told me once that she always had a bottle of wine that never got used and was strictly for a hypoglycemic reaction.  I was puzzled as she shared this point and I was extremely interested to know why she had it and what it could possibly be used for in this type of emergency situation?

She answered with a smile, “…..it is for after the incident passes, and it is for me.  If after I get through it, I do not want to find that the only wine I like; we are out or have none.  So tucked away is “my bottle” which is as ready for me afterwards as the glucagon is for my child.”

Who was I to argue……………..honestly, I now have one too.

I am a diabetes dad.

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

 

Parenting? Diabetes? Anyone Receive THE Manual Yet?

ManualI am fairly sure that all of us, as parents, are well aware that we will become pretty stupid at around age 13 of our child’s life; and will stay that way until 20-ish-something.  It’s a rule we all understand and accept……we were no different.

At some point they begin to realize that we are not as stupid as they thought and this world is much tougher than we let on.  They begin to understand that we are human.  We love, we hurt, we want affection, we bleed, and we also will not be here forever.

The longer diabetes is in your household, the longer ‘all-of-that-diabetes-police-stuff’ is also.  I have never been a small guy…..as I look back I know that my daughter with diabetes doesn’t remember me laying across her body to stop her from fraying all about as her mom tried to get insulin in her; they do not remember the sleepless nights; the running down to the kitchen and back again (repeated as needed); the allowing them to be angry at us;…….well you know the drill.  It’s good that they do not remember many of these things……isn’t it?

But we also were a royal pain in the butt as well, weren’t we?  At every turn we were there to remind them, harass them, give them what they need as they went along all the pathways of life.

We were there.  It’s what we are supposed to do.

I just wonder if there will come a time that they will completely understand what made us do what we did to them and for them?  It is the same as what we did to, and for, our kids without diabetes I guess.  We did what we did because we love them.  And when you start with that, and end with that……..I guess it’s a good foundation to have.  In either case, diabetes or not, someone forgot to deliver THAT ‘how-to’ manual to our doorstep.  Did you get one?

We do the best we can with what we have when we have it……………….with a lot of love…………………..with a lot of hope……………………with a lot of prayer.

I am a diabetes dad.

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

 

A Final Hug…….Do You Remember Yours?????

HugI admit it, I am a hugger.  If you’re a friend……you get a handshake and a hug.  I also can tell you exactly when it started.  Well not the date, but the incident.  I was in my twenties.

Growing up in my house was pretty formal.  Addressing adults or those in the medical profession was always by “Yes/No, Sir”; or “Yes/No ma’am”.  Answering with a ‘yeah’ was met with swift punishment.  No big deal…..just always did it.  I was at the hospital today and in speaking to the doc, she surely heard that same respect.

We always would kiss my mom good-night, but dad got a hand shake.

My brother had just graduated from the police academy…..well, actually he may have been on the force for a little bit.  But he came over to visit one day and when he approached my dad, he gave him a handshake, a hug, and a kiss on his cheek. My dad was surely taken aback but my brother just said, “Some day we all may wish we are around to get one of those so that’s the way it’s going to be moving forward.”

And so it was.

My brother was faced, a few times, with incidents in police work where that prediction could have come to pass, but thank God, it never did.

I have always hugged my boys and I give them a kiss when I see them.  TJ is a big kid (well at 27, kid is a relative term) and I asked him once, a long time ago, if he felt like people watched and/or cared about it.  He answered very simply, “You’re my dad, anyone thinks anything about it, the problem is theirs.”  And it was never talked about again.

I like the TV show, Chicago Fire.  Toward the end of the episode this week, one of the leading characters hugged his dad.  And hugged him tightly.  I got a tad emotional because at that moment I was served another reminder that since my dad died on March 16th, 2009 I have truly missed my hug and a kiss from him,

I am so grateful that the night before he died, the last time I saw him, I hugged him, kissed him, and told him I loved him—–and he did the same to me.  We did it because my brother was right years ago, “Some day we all may wish we are around to get one of those ………”.

Amen.

Hug someone today, I can tell you; we just never know……………………..

I am a diabetes dad.

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

 

A Gorgeous Face that Will Change a World……..She Will Never Know!!!!

ReeganIt is my sincerest hope that this gorgeous, and beautiful face, will change the world that she will never see.  This is Reegan.  In 2013, at the age of 16 months, Reegan lost her battle on a diagnosis that was never known.  By time that diagnosis was discovered, the damage was done and eventually Reegan lost her battle and passed away.

Reegan’s blood sugar was up over 1100.

I have written before about the many people who have faced such incredible hardship, such incredible obstacles, and yet, still stood up to say that diabetes WILL NOT DO in this world.  Especially when the rest of the world would fully understand if one just crawled in a hole due to the incredible amount of pain.

But to Reegan’s mother, Darice, DIABETES JUST WILL NOT do.  She is trying to make sense out of why such a beautiful child was taken so young.  Darice is a strong woman, a woman of faith.  She cannot do anything to change what has happened, but she is on a mission to make sure it never happens again.  Her Reegan’s Rule will attempt change in her home state of North Carolina……..and THAT is only the beginning.

Darice and I spoke, at length, and I’m convinced that my Child’s Cry for Change initiative about educating the world about flu/virus symptoms masking the onset of Type 1 Diabetes; and Darice’s Reegan’s Rule have the exact same objectives and we will join together to making a difference in Reegan’s name.

I have followed up on Darice’s contacts and reached out to the Legislatures in North Carolina who are taking Reegan’s Rule to their Capitol.  Reegan’s Rule will get larger in scope as we include various education initiatives in Reegan’s name under the Reegan’s Rule banner, that makes sense to do.

I will continue this mission and will continue with Darice and her family.  If we can get it done in North Carolina, we can get it done elsewhere.  I will continue working with others like the National Association of School Nurses and others.  More will follow, and if you want to get involved, send me an email at tkarlya@drif.org.  If you want to help their family NOW, sign this petition to get a law passed for kids to be tested at check-ups.  It’s a start; and much more will follow.

We need to do anything we can to make sure flu/virus like symptoms are not masking the onset for T1 Diabetes (or even for T2 Diabetes).  A diagnosed cannot be missed while a child is in DKA when it is mistaken for the flu or a virus.

We will do all we can to change that in this country.  It might be a law, it might be an initiative, it might be a movement…………………….but IT SURELY will be: 
Reegan’s Rule!

I am a diabetes dad.

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

 

No one……NO ONE…..Can DO it for YOU!!!!

up to youHow bad do you have it…….really?  The next time you feel like the world is collapsing around you, you have two choices.  Get it…..or it gets you.  There have been millions of families who have dealt with a diagnosis of diabetes and their kids play hockey, climb mountains, excel in school, become class officers, help in their community and do so much more.  How are you handling it?

When my second child was diagnosed, someone said to me, “….. my prayers will be that some how you find a way to cope……what will you do?”  I did not have to think for a second.  We did what we did when the first child was diagnosed.  We did all we could to own this disease and most important; to teach our kids how to own it.

Sure; I was so angry I could have put my fist through a wall [I did, actually :(  ].  I was mad as hell.  I was hurt.  I thought it unfair….completely unfair.  It-just-plain-sucked!

But there is too much to do.  People spend a great deal of time and energy walking around and feeling so very low.  If you need to do that….do that.  But at some point, you need to reevaluate and get this diabetes-thing under your control.  You need to get back in there…….and…….do!!!!!

There are so many people out there who have lost a child to this disease.  Some of them have created foundations, initiatives, and worked on other’s behalf to help them cope.  It will NEVER BE okay for them; but they have tried their damn-est to cope with the horror that has befallen their family.

Cope.

If those individuals and families try so hard to make sure what happened to them does not happen to someone else; who am I to feel sorry for myself for any length of time?  Yeah, we all have our moments.  But doing nothing gets nothing results.

I’m so amazed when I hear people’s list of excuses why they cannot spend the time to learn for their own child, and/or do something to help in the so many diabetes causes out there; and I see so many others who have lost a child doing so much.  I’m humbled by that daily.  We all should be.

Just don’t do nothing!  What will you do today?  Begin or stay feeling sorry for yourself?  Your call!!!

I am a diabetes dad.

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

 

Why Do Some Have Wonderful Doctors…..While Others……..??????

love my doctorDid you ever ask yourself why others seem to have the doctor from diabetes’ heaven and others leaves you scratching your head?  In my years, I have never been able to figure why there are such differences out there, but there are.  But it is not always just about the doctor.

What I do know.

Without a shadow of doubt there is NO QUESTION on the importance of the medical team who treat our children.  I also know that the more we know, the better advocate we can be.  There is surely a difference between challenging your doctor while being informed and merely asking questions about something that may result in better management care for your child.

There is a difference between asking should my child be on insulin pump and stating; “I think this about pump ABC and Pump XYZ; but I also feel ‘this’ about the new insulin pens out there, what do you think?”

Which seems like the better approach to you?

In 1999 when Kaitlyn wanted to go on an insulin pump, we did our homework, and not only were we ready; we informed our doctor that we wanted to wear a pump also (filled with saline) so we knew exactly what it was like for her.  We were that determined.  (and we did, btw)

If there was any resistance in the past, it was now gone.  And away we went and it changed the entire practice as they became one of the leaders in insulin pump therapy in this area.

If you look to your medical team for answers and have done no homework, you will receive nothing but their advice to consider.  Good as that may be, if you do your homework, you can ask questions about what you have found out and the BEST approach moving forward as a joint decision.  You have one patient (unless of course you have more than one child with T1), they have hundreds.  Know what is best for YOUR patient, in your opinion; and discuss.

There is not ‘just one’ of anything anymore and there are certainly more than one approaches to diabetes care.  Educate yourself and you will be much better off in the decision-making process for the proper day-to-day management of your child.  And if you have tried everything you can and your doctor is not on the same page; look around for another.

No one else will do it for you………………………start today.

I am a diabetes dad.

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

 

Diabetes Diagnosed……WHY ME????? (Ever ask THAT!)

why-meHave you ever looked at your situation and asked the so-hard-to-answer question; why me?  Or even more specific, “…..why my child?”

In what life did we do something so bad that diabetes would enter our household.  In short, what did we ever do to deserve this?  Have you ever asked yourself that question?

I have.

But I think I have because it’s a normal progression of the process to getting back on your feet and moving forward.  If you look around you, however, there are VERY FEW people in our lives who could not ask the very same question about their own lives.  If you step outside the feelings of your own pain, and look objectively, almost everyone…..has….well…..something.

I think what differentiates those who are given hardship is how they each deal with whatever is thrown to derail their lives.  I find it ‘flip’ to say when given lemons make lemonade but I do believe in Theodore Roosevelt’s; “Do what you can, with what you have, where you are.”

No expectations.  No goals beyond your reach.  Just to take what you have in the time of your life you are in and deal with it.  Pretty simple advice.  It is up to you how anything impacts you but be sure of the following:
–Someone has it worse
–You can choose how much you are brought ‘down’.
–Make yourself active in making it better
–Just ‘Don’t do Nothing’ about your situation.

Staying home and feeling sorry for yourself will accomplish nothing.  We have all been there.  I’m sure Lee Ducat and Carol Lurie’s lives were turned upside down when their children were diagnosed, just like you.  Diabetes was not going to win and they went out and started a small organization called the JDRF.

The Singers and the Kleimans could have only looked inward and no one would have blamed them upon their child’s diagnosis; but instead they created the leading Diabetes Research Institute in the world when the Diabetes Research Institute opened its doors in an 87,000 square foot building which continues today.

Same with the Hitchcock Family followed shortly after with the Billetdeaux Family creating the Children with Diabetes and the CWD Friends for Life Conference.  Again, parents stating diabetes will just not do……and doing something about it.

And there are millions of other examples of others who did ‘something’ to change the lives of their children, or themselves.  Energy is created by something in motion.  Whether positive, or negative; whether a larger something or a smaller something in motion is all up to you.

Know this and hear me clearly.

However you deal with diabetes in your household, your kids are watching.  Just like they watch everything you do in life.  If you live life with a ‘whoa is me’ attitude…….do you really expect your kids to live differently?  If you live life that diabetes is just ‘no big deal’ and whatever happens will happen; do you really expect your kids to live it differently?  If you accept the challenge and live life up to its fullest potential in a positive manner; don’t you think your children will approach it in some sort of the same manner?

And after that; pray.

Because after you do everything you can, it’s still just a chance that your child will absorb the good.  But I do know this, you have a much better chance at it when you reflect a positive approach than thinking your world is just in shambles.

We have all been there.  And I had it multiplied by two when my second child was diagnosed.  But you know what?  Some have three……and some have more.  I ask you this one question; “If we, who live in this diabetes community, do not venture out to make any and all of the changes needed………………………….who the heck do we think will?”

Think about it.

I am a diabetes dad.

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