Diabetes; Our Kids Normal????…..What is Normal???

SpidermanIt may seem, when new in this community, that it I shard to understand what normal is……do you ever feel that way?  We want our kids to be normal, act normal, do normal things……but they have to carry diabetes supplies, stop and test their blood sugar, watch what they eat….etc etc.

Do you know who Pete Parker is?   Well Peter, actually…..do you know his name?  Ask your kids because they will know that the world knows Peter better as The Amazing Spiderman.

Now you may not think your child has a lot in common with Mr. Parker/Spiderman but when you consider that he had something bad happen to him (bit by a spider), needed medical attention (for his radioactive bite), and also how to learn to live in his ‘new normal’ world…….well they do not seem so different after all; do they?

The ‘new normal’ comes with a new way to live.  Once you learn what the new normal means, accept it, and conquer the unknown, you can go about your business of……well….living.

When we tout our children’s successes of living with diabetes, things are said knowing what they have to deal with and it is THAT exact thing that makes them incredible.  They allow themselves to be thrown around like a rag-doll to end up with their arms outstretched at a cheerleading competition; they check the front line and tear down the ice to slap a hockey puck; they are asked by their high school drama coach to design the entire sound for the school show; they are asked to play a sport, write a poem, and/or be involved in the world of medicine and the list goes on and on.

So if you wonder, “……how the heck can I consider it normal that my child is asked to do everything that everyone else does and be asked to do it with diabetes?”

The answer; what our kids do to ‘be normal’ is not normal……but yet millions of kids and adults do it all the time.  Not normal. More than normal.  More like a super hero if you ask me………like Spiderman.

I am a diabetes dad.

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

 

PART II: Your Baby Has Diabetes…….Looking Back is Good to Do……But…..

Grab lifeAs a follow-up to my last article……it’s time to look back.  Whether you have been at this ‘diabetes thing’ for one week, one month, two years, or two decades; it is important to realize how far y you have come since you first heard the words; “….we are done testing, your child has type 1 diabetes.”

…..and the world fell apart.   But did it?

Yes, it sucks.  Yes, we would not wish in on our worst enemy.  But eventually the moon came out at night and the sun rose again and like I said, even if it was just a week ago—-you have got to be telling yourself, “I’ve got this.”

The simple reason is, that you have to tell yourself that, your child’s welfare depends on it.  Your child’s welfare also is dictated how you keep them away from drugs, teaching them to drive, and knowing what to do about strangers.  This, although with much more detail will be done…….because it has to.

Remember when you started.  You feel like you are not getting it right because you now know so much more and it is the goals you set that you strive to achieve.  It was not always that way.  When you started, it was just survival.  Now, it is, “……aaaaaarrrrgggghhh I should have known better.”

And THAT IS A BIG DEAL.  Cherish that, now you know.  When you started…..it was only a crap shoot.  Now…..you know…..sort of!

If you have gone through a year of school, a summer, a year, a pump, a cgm, a sleepless night; congratulations you are well on your way.

Stop.  Look in the mirror.  You did that.  Yes you surely did.  Look back and realize that you have walked much further down the road than you could ever have imagined.

Cry?  Shoot, we all cry at some time or another; even 22 years later.  Here is the thing, and know this, you are not done yet.  Push yourself to learn more, to know more.  What you now know is a great beginning.  Learn, talk to people, make sure your child is deeply entrenched in this life.

There is so much to do, so much to see, so much to be.  Be like me friends Sunshine and Justin Abel.  My goodness I have never met two people who try everything, experience everything, take their kids to everything, like the Abels.  Ever hear the phrase life is for the taking……..it is; it does not read life is to be served up on a platter and pray to heaven that somehow you are included…………………..no—–life is for the taking.  Grab it.  All of it.  The Abels do…..and THEY DO IT WELL.

We got one shot and that is it.  Look how far you have come but more exciting is to look how many great things are in front of you.  Go for it all.   You deserve it………………and so does your child.

I am a diabetes dad.

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

Your Baby has T1 Diabetes……..I have Stood Where You Have Stood.

Man standing at oceanI have stood where you stood.

It’s late at night, or early morning depending how you look at it, the clock chimes 3:00 am, the blood sugar just will not rise.  An hour after what you think is an endless supply of juice boxes and other ‘stuff’, the glucometer says 52; you cry.

I have stood where you stood.

You’re new at this; maybe a few months or less, maybe a year or two, or maybe even more—-you keep waiting for the water to stop crashing all around you.  You go on-line, you feel even there so many know so much, and still you cannot grasp this—-you feel even inadequate and just read….who cares what you have to say.

I have stood where you stood.

No matter how hard you try, you feel your child’s A1C is a report card and a direct reflection on how much you suck at this thing called diabetes.  It’s not a reflection of anything but diabetes….use it to your advantage not your behavior.  It is a gauge nothing more; like a speedometer in a car tells you what to do; the A1C is the same.  I know.

I have stood where you have stood.

No one REALLY understands you.  Everything is in shambles.  Relationships, from your spouse on down have suffered.  You do not know what it is like to feel good about your self.  You feel tired, ugly, useless and that you are all alone.

I have stood where you have stood.

And because I have, I can tell you that YOU can change the landscape of how you live.  Read everything you can, thirst for knowledge, desire knowledge, and find knowledge. You can find the time……if you want to.   This knowledge is the key for you to survive and dare I say thrive.  Whatever you want to find out, you can, you should, and you will.  Go to support groups.  Camps with family weekends.  CWD Friends for Life.  Find a way.  People in more dire straights have found a way also.  Your situation is not as unique as you think.

You will watch as they become active in school….and…..well…..life; and achieve great things like become a Girl Scout Gold, dance at every recital, go to the store by herself, find friends, become a class officer, become a member of the homecoming court and the prom court, have a boyfriend, earn a high school letter, graduate high school, graduate college, and continue on in life………thrive in life.

It may not look like that from where you stand right now, but after almost 22 years I can tell you that YOU can control diabetes in your life, even when it is out of control–you can control what it does to you; you can decide to own it the best way you can, you can decide that anything that comes your way–you will own–in our case it was a second child diagnosed—-it killed us again……but AGAIN we owned it–as a family.

I know it seems hopeless today…….but it can get better—-it will get better—-it’s your call.  I know……because I have stood where you stood.

I am a diabetes dad.

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

Facebook

facebookFOR THE RECORD:
I do not want to play sugar_______ anything on FB, so don’t ask.
I do not want to play candy crush either, thank you.
I do not want to meet you in any fictitious games.
I don’t care who I was in 200 A.D.
I don’t care what movie I am (what up with that?).
I don’t care which Beatle I am.
I don’t care which Rolling Stone, which character from Gone with the Wind, Wizard of Oz, the Brady Bunch or The Partridge Family I am.
I know what color I am already, what number I am, what time I am, what state I am, what city I am, what backyard furniture I am, and what clothing I am too.
I know what zodiac I REALLY am as well.
I don’t care which Chakra guides me.
I don’t care which Disney villain, character, song, princess, ride, hero, mouse or duck I am.
I don’t need to know what dictionary word best describes me (seriously?).
I don’t care what Shakespeare king, villain, and/or city I am.
If you love all of these things and I don’t, that’s fine too.
I don’t think Obama was the worst President, nor Reagan, nor Clinton, nor even Bush–because to say that would mean I knew everything about all of the presidents…..I don’t!
I do not know enough to say anything about all of the world in crisis.
I don’t care what TV Detective I am.
I don’t care which female (or male) TV star I am in the 60′s, 70′s, 80′s, 90′s or beyond.
I would rather stay lost at sea than be asked one more time who I am from Gilligan’s Island.
I am not interested in anything about who I was, lived with, or sinned with in the Bible.
I care about you, your family, your friends, and your kids and love everything you want to share.
I love reconnecting….has that much time really gone by???????
I love to be happy over what is happy in your life…….happy is good.
I am willing to hurt with you during whatever you go through as well.
If you choose to post your child’s picture in the hospital, that is your call, but I would rather see them doing what they love.
I cannot support every cause but truly love to see what you are up to and what causes are important to you.
I have a few myself, diabetes being at the top because I have 2 kids with type one.
I might seek advice but know that I TOO must do my homework on what I am asking.
I am a member of Facebook and I love being a part of your life…..and you do not have to hit ‘like’ after reading this, only if you want to.  :)

I am a diabetes dad.

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

 

AP/Bionic Pancreas or a Cure????? Whoever said it was an ‘OR’???

andI have always found it very interesting listening or reading the discussions regarding research and regarding management tools.  Somewhere, somehow, the word got out there that some things are an ‘either’/'or’ decision.

Are they?

If it is all the same to anyone else, I am waiting and holding my breath for the AP and/or bionic pancreas to be in practical, every day, use…..who wouldn’t?  I go back a long way and if there is one thing I learned, nothing is a cure until it is a cure.  Management tools are just that….management tools.  I’m hard pressed to think any mechanical device is going to allow any of us to just be on ‘auto pilot’ and not have some sort of interaction.  But they could surely help, wouldn’t they?

This may be hard to believe but the insulin pumps were touted the same way.  Not a cure but the closest thing to it to help manage diabetes.  DO NOT MISUNDERSTAND ME…..these are crucial tools and I do not give a dang who gets there first, but that we GET THERE.  Our kids could surely use all of the help we can get.

Research.  And as always I remind you, I work at the DRI and I clearly have my beliefs; but if a pouch, a band-aid, a biohub, a company, a researcher, a project, a team, a person or whomever gets my children to our definition of a biological cure……I don’t give a dang who gets there first but that we GET THERE.

All of the research in everything diabetes out there is very exciting TO ME.  I do not think we should force our opinions on others.  I always try to stay the course, “Looks like it might be something, we have to wait and see.”   I, for one, am ecstatic that I see so many projects going on; and you should too.   How sad would it be if we only saw all of these other disease-states making advances and nothing was happening in our world of type 1 diabetes.  I’ll SAY THAT again; how sad would it be if we were not hearing about ANYthing going on in our diabetes world.

Look around you…….there’s much happening.

I love to see so many trying to get the ‘step ahead’.  I, like you, have my opinions on what I read, what I see, and how I show support.  You should too.   If you believe in something strongly enough, support it.  And if someone else supports something else, embrace that too with the respect it deserves.

Until my child has an AP/Bionic Pancreas or whatever is the next/best management tool; I pray for the wisdom to come to those working on it to GET IT across the finish line.  Until my children do not have to worry about…….well everything to do with diabetes……I pray for the wisdom to come to those working on THAT to get it across the finish line as well.

Dame Carol Lurie and I were surely opposites in the organizations we supported and have supported over the years.  I paid special tribute to her on her passing.  She was a powerhouse.  She sent me a note once and I will long remember how she signed it; simply, “….see you at the finish line.  –CL”

We are all strong enough to make up our minds who we support and how; let’s continue to grasp that ANY MANAGEMENT TOOL is welcomed as we strive for a cure for this disease once and for all.  Welcome that……..accept that…….embrace that.  There is no replacement for our wish/drive for a cure…….but there is also no replacement for the best management tools until such time exists.  They are not one over the other…….they are one AND the other. They are not exclusive of each other……they are directly related, together, to our kids and to those who live with diabetes every day. And whoever, whatever you support…..well……I’ll see you at the finish line.  And what a day that will be.

I am a diabetes dad.

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

When a Little Girl has Something to say to Her Daddy

Kaitlyn FlowerShe does not look like that anymore.  she is much older.  At twenty-four, actually, a woman now.  But in a father’s eyes, when his daughter (especially if it is his only daughter) asks him something, says something, does something; the glasses that no one sees are the glasses he sees through and it is the ‘picture’d-little-girl’ that immediately plays in his mind.

We do what we do; as parents.  No map, no guidebook, no manual……we do….because that is what parents do.  We try to make the world better.  Do they know?  Do they really know.  My daughter wrote the following last father’s day; it drove me to my knees.  I thought I would share it…….it is a VERY strong reminder just how special our kids are.  I gave her a promise once; a promise that we would not stop until we found a cure for diabetes.  It was my promise, my belief; and I will pursue that until the day I die.

They do understand, you know……..they really do.

FATHER’S DAY 2014
A true father is always there. He is there to spill tears of happiness when his eyes fall upon his infant daughter. He is there with arms to catch her when she takes her first steps or stumbles. He is there to teach her at the youngest age, even though she might not understand half of it. He is there to help her color inside the lines, make her grilled cheese sandwiches and tomato soup, and tie her shoes. He is there to hug her and kiss her on her first days of school, and to walk her in if need be. He is there to teach her and tease her and laugh with her. He is there to lecture her, prepare her for life. He is there to put up with her teenage moods and her co-ed relationships. He is there to approve, disapprove, accept and forgive. He is there to give her a big bundle of flowers when she graduates, to smile when her name is called and feel proud. He is there to embrace her and kiss her before she goes to live and learn outside home. He is there to see her become a workingwoman and someday to walk her down the aisle. He is there to watch her grow as the lines on his face grow. He is there to welcome her home, always, and let her hug him and smell the smell she remembers from childhood, the warm, protecting, comforting smell of dad. He is there to share battles, tears and struggles that come with having a disease and spin it into a battle that we one day will win. But most of all, he is always there to love her. And she is always there to love him back. Dad, I love you, happy Father’s Day.”

This gift from God is enough for any man……………………………….and surely more than this man deserves.

I am a diabetes dad.

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

Tara; that is Spelled H-E-R-O. A Young Lady Who Put it All Out There for the World to See!!!!!

TaraThere is a difference between T1 & T2 diabetes.  I have stated a zillion times, that if you have something you strongly believe in, “Don’t Do Nothing”.  Seems a 7th grader decided that she wanted to do something about it.  Behind that absolutely gorgeous smile is a young lady who went on a mission with fierce undertaking…..and the result could very well impact the world around her.

Now it would be easy to say, what can a class project do?  Well for one thing, if one person sees it, one person could be helped, one person could change their attitude.  When a person is fearless and puts her entire self out there for the world to see, it can be a huge risk.  What will people think, do, say?   It can also result in change…..even one person at a time.  If we all did that just once a year, we would change the world.  Doesn’t sound so small anymore, does it?

Tara is 13 years old and was diagnosed with diabetes at age 5.  She was not afraid to show her school and her community; that her diabetes is something THEY NEED to know about.  Pretty special for an early-teen to be so bold.  She is on a pump and a cgm and she takes ‘this diabetes thing’ pretty seriously.  She created a survey of over 20 questions which were distributed and discussed.  It was for people to understand the differences in diabetes and it was chock full of questions; my favorite:
6.Type one diabetes can be outgrown.
a)True
b)False
…….how any times have we been asked THAT question.

Tara's Project 1Tara created a 5 page research paper, a survey, and the board you see here.  Kids can choose not to acknowledge their diabetes or they can decide to ‘hit it head on’ and clearly Tara has chosen to hit it straight on.

There is much that I love about this project.  It would be easy to say, ”so what”, wouldn’t it?  It’s ‘just’ a school project.  You can see that the amount of work shown is not ‘just’ anything.  This is a young lady who is making a difference in our world.  Let’s let Tara know that we, as a community, understand and appreciate a lot of work to benefit those with diabetes.

Please comment on this post about Tara’s project which took a long time to research, write, and create.  She is a hero.  She could have done a project showing a volcano, she didn’t……she went out there talking about something so personal to help the world change.  Tara is deserving of our congratulations, Tara decided to make a difference in her world with diabetes, our world with diabetes……………………………..let her know it!!!!!!

I am a diabetes dad.

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

PS—-I love to share these stories and always will choose to do so.  Email me at tkarlya@drif.org if someone you know ‘goes that extra mile’….I would love to share their story sometime.

 

 

If You DO NOT have T1; Do you Really Know what SICK Even Means?

Ice ppackWow……what a crappy couple of days.  This summer-fever-cold-flu-knock-you-on-you-butt gripped me but good.

As I laid in bed looking at the ceiling, I had one thought that I could not shake.  I did not want to bother with anything.  Leave me alone.  Don’t whisper.  Don’t say my name.  Don’t touch me. Don’t bring me soup.  Just leave me alone.

First of all, those thoughts were with myself and not said, it was what made me post on FB what a baby we, men, can be. I knew better to keep them to myself.  Seems a few agreed with me.  :)

But my thought was, in the middle of all of this; what if I had T1 diabetes as well?  I have always stated that we always have to be ready to learn something at any given moment.  This was one of those moments.

My goodness.  To feel so crappy and have to check a blood sugar, much less change a site, oy……..how unfair is that?  To deal with all of ‘this’ and still have diabetes management on top of that, balancing numbers, eating (yeeeech), not eating……my oh my; what a whirlwind.

Yes, we discuss all the time what it is like to have diabetes and yet, I’m constantly given reminders that as much as we can say, or try, if we don’t have it, we will never understand it.  We won’t even have a clue.

So to my friends who live with this disease, again, I am so sorry that you have to put up with so much, even when you don’t want to–that lesson was made crystal clear to me………AGAIN!!!!!  Another reason to get back to work and try to rid it forever.

Onward.

I am a diabetes dad.

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

Could Lightning Strike Twice??…..We Can Only Hope!!

SierraStrange, isn’t it? Each man’s life touches so many other lives. When he isn’t around he leaves an awful hole, doesn’t he? This quote is from the movie classic, It’s a Wonderful Life.  For today’s purposes, we need to change the word man……to woman.  And in this case, a specific woman.  Her name is Nicole Johnson.  And if she was not around, and thankfully she is, the hole would have been enormous.

There were many, many, many stories running around this week about Miss Idaho, Sierra Sandison (pictured above), and her wearing of her insulin pump during last week’s competition where she was crowned.  In her own words she will tell you that she did not even want to mention her diabetes much less wear a bathing suit with her pump attached, and someone changed her mind.

“The media often tells us this lie: if your appearance deviates in any way from cover girls, movie stars, super models, etc., it is a flaw and something is wrong with you. Well, guess what? Miss America 1999 has an insulin pump, and it doesn’t make her any less beautiful. In fact, in my mind, it enhances her beauty!”

Amen sister!

Nicole johnsonI have known Nicole for a long time and she is as consistent as the sun rises and falls when it comes to diabetes.  I have stated on many occasions that I am not quite sure if other Miss America’s have held fast and true to their platform for change that they talked about when they were crowned, but Nicole’s drive has only become stronger, more dedicated, and more wide-spread.

Her platform about diabetes was truly only the beginning.  What she has accomplished with college students, legislation, testifying on the hill, lecturing, and so much more has changed the face of diabetes in this country.

She has always been who she is and many have benefitted from her efforts; and now Sierra Sandison has made it quite clear why she is coming out in full voice about diabetes; it was because of another Miss America who was not afraid to stand up and say after she was told that she should never try to compete again, “If anybody, if anybody should compete; I have a reason to compete.  I had a message.  I have something that people need to know about.  They need to know about this disease.”

That woman was Nicole Johnson.  (see the video of her incredible story, here.) 

In the fall, a Miss America will be crowned.  When no one else would do it, one did. Imagine another young lady with T1 diabetes becoming Miss America?

We can only hope.

I am a diabetes dad.

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

A Young Man Who LIVES: Diabetes Just Won’t Do in HIS Life

Ryan Reed JoslinHave you ever come across something that just says, “WOW!!!!! They got this right?”  As is so clearly known, I’m staff at the Diabetes Research Institute Foundation and I have to admit that I would be lying if I said I was not a tad envious of my friends over at the American Diabetes Association and their relationship with Lilly Diabetes on bringing NASCAR Driver Ryan Reed around the country…..and to that I must say, Bravo, Bravo, Bravo.

The absolute truth on the success of this program; American Diabetes Association, Drive to Stop Diabetes is not merely the concept of a NASCAR Driver with diabetes visiting kids around the country, but it is actually Mr. Reed himself.

This young man must have had an incredible upbringing because to balance confidence with humility is no easy feat and it is the first thing that strikes you about him when you meet him.  The feeling he has in his heart for kids with diabetes is evident as soon as he opens his mouth to speak.  Maybe because he understands what they feel when being diagnosed with T1 diabetes and told your dream is gone.
Ryan ReedHe told me that he has always loved the ‘need for speed’, as so many in his field.  It is important to make note of that fact because it is what he loves, and always has.  Speed.  More.    As Gary Hall was to swimming, Ryan Reed was to racing; both could not breathe unless they were doing what they loved.

And in 2011 Mr. Reed was told, as Mr. Hall was told many years before; that being diagnosed with T1 diabetes meant an end to their careers.  And both of these athletes made it clear, diabetes would just not do in their lives.  “No” was not an option.

Mr. Reed, at the ripe old age of 20, is one of the youngest members on the NASCAR Circuit—and he is doing it with type 1 diabetes.  His pursuit of fulfilling his dream has served as an inspiration to anyone who hears him; and I have quite a few times already.

And yet, it is not just what happens on the track that is impressive, look at the faces of the kids he is with in the picture above. His recent visit to the Joslin Diabetes Center was filled with kids who marveled at his diabetes on the racetrack and listened attentively to his day-to-day dealings with the same thing they must; T1 diabetes.

His message was clear, diabetes stopped him from nothing; and it should not stop their dreams either.

They say that the first rule in racing is that what’s behind you does not count.  And surely Mr. Reed is focused on his goals in front of him.  Gary Hall once told me that he won more medals in the Olympics after being diagnosed with diabetes than before.  I look forward to the day that Ryan Reed tells of all the things he has done when told that it never would be possible after his diagnosis…….and that list has already begun to lengthen.

Drive open in the corner my friend, until you see God,……….and then pass Him!!!!!  The checkered flag, to Ryan Reed, is not merely on the track……..it is the goals he puts in the hearts of every child who hears his voice.   To reach those goals, one begins by starting the engine.  And when it comes to diabetes, ‘Drivers, start your engines’.

I am a diabetes dad.

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