A Mom Needs Our Help!!!!!!

epilepsyI have always stated that the number one service I could ever provide to this community is connection…..today is such a day.

A mom has a child with diabetes.  Recently epilepsy has been diagnosed as well.  As you could imagine there is much to know on mixing various meds; plus the fear of the unknown; plus, possibly, just speaking to someone else who is not ‘guessing’ at all of this can be a huge help.

If you have a child with epilepsy and T1 Diabetes and will allow me to share your email with her; kindly send to my email at tkarlya@drif.org.  In the subject line, write Epilepsy and Diabetes.  Include your name, and how old your child is and I will pass it along to the mom with whom I discussed.

We have all been through ‘stuff’ where having a kindred spirit surely helps.  Thank you in advance for your cooperation.  In this together, as I say.

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

I’m Sorry……….I just had NOTHING Else Inside Me Today.

IN MEMORYI have to tell you all; as those who share this journey with me.  I just could not write anything else today.  These three little faces have kept me up all night.  I understand how ALL OF THIS works.  I have been at this a long, long time with two kids living with diabetes.  But it just made no sense for me to write anything else today.  WE WILL DO something about this….we will continue what we started.

Forgive me for just not writing about something else today……it just was not in me.

IN MEMORY….WITH LOVE; REEGAN, KYCIE, DAVID
ALL THREE, FROM TYPE 1 DIABETES THAT WENT UNDIAGNOSED.
NO ONE’S FAULT……..IS NOW EVERYONE’S RESPONSIBILITY…….TO MAKE SURE IT NEVER HAPPENS AGAIN.  HOW MANY MORE DO WE NOT KNOW ABOUT?
Reegan's RuleKycie

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

Little Kycie Changed the World. Period.

KycieAs most of you know by now, Little Kycie has lost her battle.  In a statement released by her family:
Her mission on this earth was complete.  We have found inspiration and strength from her courage.  We are thankful for the last 5 months that she was able to be home with her family and at the same time change the world.—The Terry Family.

I was in my hotel room when I heard.  I cried.  You may have cried also.  I know in all my heart and soul that Kycie, Little Reegan, and others will change this world—-our world.  They have changed it already.  They have saved lives already.  They will continue to do so.

I have just a few thoughts today, but mostly I would ask that you hold the Terry family up in prayers; they need our prayers right now.

First and foremost, our deepest condolences to a family that has acted with the most amount of grace, respect, and in manner that has captured all of our hearts.  Their grief now must be insurmountable.

There is much more I want to say and will say……..but I will not do it today.  This week is for prayers, thoughts, and holding up a family that has meant so much to all of us and who have inspired all of us beyond measure.

As I read the posts over the last two days, I wanted to share something that Kycie’s Dad shared with me while they were going through everything that they were going through.  He wanted Kycie’s story told but it was very clear that they wanted her story to be uplifting and educational without pointing blame.  We need to give their family the respect of acting as they have wished.

Action?  There will be plenty of time for action but I wanted to share what Josh shared with me a little while back.   They have opened their story for us to watch unfold.  They have shared their hearts.  Let’s remember what thy have asked of us as well as we all move forward to try to change in honor and memory of the Reegans and Kycies of this world

Within the last few weeks, I was asked and accepted, being the Keynote speaker at the National Association of School Nurses in Philadelphia.  I was discussing A Child’s Cry for Change (addressing the very issue of making sure a T1 diagnosis is not missed).  I stated to the audience, telling Reegan’s and Kycie’s stories and so many like them with Josh’s request in my mind, that this is not anyone’s fault but it has become everyone’s responsibility to change it to make sure that it doesn’t happen again.  The school nurses agreed.

The second thing I want to share with you today is about Deborah.  Deborah lives in Pennsylvania and she is meeting with her Elected Representative today.  She is meeting to tell her story today, and she will also tell Kycie’s story and Reegan’s story as well……..to, hopefully, make much needed changes.

We will talk much more about this up-coming but I felt compelled to share a few thoughts today.  May Kycie’s family find some sort of peace as they learn to cope with the journey ahead of them.  May we learn and accept what we each must do individually to move this process forward.  May we each hug our own children just a little tighter today.

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

Four-Wheel Drive will Do Little on Ice—Like Diabetes Technology—It’s How You Drive!!!!

car on iceI have often seen four-wheel drive vehicles in accidents during times of cold weather and ice in the New York area where I live.  The reason is simple.  In sand and snow a four-wheel drive vehicle is ions ahead of the crowd but when it comes to ice, it will matter little when you start to slide.

There is a false sense of security to the driver who is unaware that ice is ice and it is dang slippery with whatever you are driving.  Not too unlike much of the technology we have today to manage diabetes.

No matter how good the technology is, or becomes, it will always only be as good as the person who is using these tools.    In as much as the AP, Bionic Pancreas, closed loop system all are in capturing our imagination of managing diabetes; it’s a false sense of security to ever thing that managing diabetes will be done ‘completely on its own’ with no help from ‘the driver’.

The same with the insulin pump and CGMs.  Nothing will manage diabetes for you better than YOU!  Do NOT MISUNDERSTAND me as I love technology and these tools all surely help us with exponential understanding to have better outcomes on the day-to-day management for our kids and all PWDs.  But it’s not uncommon to find those who start using these tools to also have their A1C rise because the user takes their eye off of their own responsibility when it comes to actually managing their diabetes.

The message is a simple one today.  Technology is great but at the end of the day it will always come down to how these great tools get used.  Never think it will be done for you……it won’t.  Food for thought.

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

If You Liked Frozen’s ‘DO You Want to Build a Snowman”……..You Will LOVE THIS!!!!!!!!!!

 

Olaf 1Do You Want to be My FFL? (pronounced Fif El).  It represents the acronym Friends for Life.  The video attached is something that anyone with diabetes can relate.  It was written by Sarah Loebner, a very special young lady.

The introduction read at Friends for Life Conference was as follows:
She—-was diagnosed with T1 diabetes at age 9 1/2 in 2002. Presently pursuing a career as a Physician’s Assistant and she is the pure genius behind what you are about to hear.
He—was diagnosed with T1 diabetes at age 11.  He was a finalist on American Idol’s 5th season but most kids in the room will recognize him from his reoccurring role on Disney’s Good Luck Charlie.
With special apologies to Disney, I present Sarah Loebner and Kevin Covais singing a special song with special words.  Listen closely to the words.

I share it with you (click the picture above) because the diabetes community needs to hear this, your kids need to hear this, I needed to hear this.  A FFL does not always have to happen at a conference, this conference; but in our so incredibly complex lives, we all need a FFL.

Nice job CWD allowing this song to be presented at the highlight of your conference.  Nice job Kevin and super nice job Sarah Loebner at creating something so special.
So share this with someone you know and love because when it comes to diabetes, some people are worth melting for.

Take THAT diabetes.

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

“Why Did YOU NOT Follow Instructions?!?!?” Sound Familiar?

Screaming womanFrom the onset, I want to let you know that I do not have any incredible answers for what I am about to write; but I am ‘putting it out there’ so others may comment on how they have handled this situation which I am hearing more and more.

Parents of the parents.  This includes both sides of the families and you can add aunts and uncles and anyone who should be in the mix as well.  “Why didn’t she do as I asked?”

The frustration is real.  You finally muster up the courage to go out and leave your child with your mom, dad, or whomever and upon your return; you find out that your directions were not adhered to and something was done against your instructions.
Number one.  Take a breath.  We, as parents, have all been there.  Sometimes it is a mistake and at other times it is someone ‘thinking’ they know best.  You are given a choice immediately; do you discuss it now or do you wait?  I know it is hard but remember this; how many mistakes did we make when our child was first diagnosed?  I made some doozies and there was no one there to correct it, we found out through many, many trials.  Remember that point.

When we took our child (and it became children when Rob was also diagnosed) home, we had our instructions from the Doctor.  We had the opportunity (for lack of a better phrase) of 24/7/365 correcting after time after time of ‘getting it’ wrong.  No one is there to tell us our mistakes, we have/had to learn them.

Dropping our child off, and no matter how many times we go over it, mistakes will be made.

I have had the wonderful opportunity to be involved with the CWD (Children with Diabetes) group for some time.  As biased as I am, I have found the grand parents track at their Friends for Life Conference in Florida each year to be incredibly useful, and one of the best that I have ever heard.  If you have the opportunity, get there; and bring a parent or two.  There are scholarships available as well; it is a week you, and your entire family, will never forget.  Game changing for sure.

I share that information because as I have been there over the years I have heard story upon story from grandparents.  Their roles in their grandchildren’s life are as different as snowflakes.  Some heart breaking in fact.

But there are two constants in EVERY single story I have heard.  One is fear. Two is they wanted to know more.  Not unlike us as parents, but we have no choice but to ‘be at it’ always until we get it correct.  Over twenty-one years out, I know I’m still ‘working out the kinks’.  How about you?

I am not saying that our parents should not work harder when they watch our kids.  I am not saying just forgive them when they ‘insist’ on doing things their way.  I am saying, that the more kids with diabetes are watched; cared for; tended to; the better the chance the caretaker will ‘get it right’.  Just as we did/do every day.

I am sure there are people who are involved in situations that are not ideal and the frustration level is very high.  It is my hope that a dialogue can be had with people who have been there and were able to adjust positive; and what those did who were just involved in a cause that was beyond fixing.

I am also a believer that somewhere out there, someone is going through or has gone through what seems like a completely unusual circumstance and can help by sharing.  Nothing is stringer than the voice of experience.

Please share your heartache and your success.  Through dialogue a map can be charted.

I am a diabetes dad.

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

Diabetes Jeopardy Answer #7 for D-Awareness Month: He Flipped a Switch and LITERALLY Changed the World.

Jeff and Brenda…….who is Jeff Hitchcock.

In all of my travels, and out all of the people I have met in my lifetime; in my mind one man stands alone and apart from all of the rest as having impacted the lives of families dealing with diabetes the most.

He is a writer, a lecturer, humanitarian, creator, and has connected more people through his efforts than anyone else on earth; not to mention how many families’ outlook toward diabetes he has changed when he flipped a switch in 1995 turning on the Children With Diabetes.  There is not a doubt in my mind, and I say this as a fact not for dramatic purposes, that my daughter and son are alive today (and I know I am not alone when I say this) because of the people I have met, and what they taught us, at CWD.  Period.

Here is a little more about him from his site.

Jeff Hitchcock
 is the creator, editor, webmaster and president of Children with Diabetes. After earning a degree in computational mathematics in 1981, Jeff worked in high-tech and traveled the world, meeting Brenda, who would become his wife, in Africa. He worked in defense related industries until 1995, when he started a small Internet company and launched Children with Diabetes. He subsequently worked at LEXIS-NEXIS and Pearson plc on Internet initiatives, and now works full-time bringing Children with Diabetes to you.

In all the pain, agony, frustration, joy, happiness, and everything else he has experienced in making CWD what it is; only one person has been there for ALL OF IT and that is Jeff’s lovely wife Brenda, who also should be mentioned here as well.

In all of his accomplishments, awards, and world travels he will tell you that above all; he is merely a dad to a child with diabetes.  A CWD dad.   Indeed.

For Diabetes Awareness Month:

This month, I will be highlighting someone in the diabetes community.  They may be people you know, or might not know, but they give of themselves to make this world, our world, with diabetes a special place.   I will not get to everyone this month, but it is my hope that perhaps you can be introduced to some of those you may not know.

I’m certainly not the definitive on who should be included….you are.  If you think I should include someone, shoot me an email at tkarlya@drif.org and I will do what I can to include that person as well.  Welcome to diabetes awareness month.

I am a diabetes dad.

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

A Picture. A Thousand Dreams Realized….Inspiration Defined!!!…Read and Find Out Why!!!!!

CWD Picture BallTwo are having their first child.

One was just married.

Four have diabetes, two do not;  Can you tell, of course you can’t.  Diabetes is a huge part of the lives of all six of them none-the-less.

A few are in love.

One is my daughter; the rest I have known for some time.

When I saw this picture I wept.  They were absolute tears of joy.  I’m sure there were others out there that did the same.  They know too.  They KNOW what this picture is all about.

Now those of you who are fairly ‘new’ with this new normal, and those of you who may have a little time under your belt but still have fears every day; hear me with the loudest voice you can. This picture represents every fear, every doubt, every tear that has been shed worrying about the future for our children with diabetes; and throws them right out the window.

This picture is THE LIVING PROOF how important IT ALL is about.

These kids are in the work place, in college, starting a life together, creating a life together, continuing a life of dreams…..they are with everything you can think of……..LIVING their lives to the absolute max..

These kids go back a long way together, a very long way, and that means so do their parents. I’m one.   

Some were diagnosed while still in diapers and here they are as a group of fabulous adults.  My wish is that you have this picture for your child at this age.  Many of us were told a different scenario years ago; none of us believed those scenarios, we believed a life of living.  So did our kids. 

Perfect?  I can hear each parent laughing at that statement; I can also hear each parent sigh and smile at this picture.  There is so much love in this picture, there are so many dreams fulfilled in this picture, there are so many friendships connected to this picture, there are so many stories in this picture and the best part, they have only just begun.

They are our kids, they are our dreams, they are our passion, they are our future,  they are one thousand percent……..Friends for Life. 

I am a diabetes dad.

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

 

 

A Young Lady, a School….and Exactly What it is Really Like to Win.

DancerI received this comment from a d-mom as a reply to today’s article.

While some of the other diabetes community was at FFL, we were in Orlando at the same time for a national dance competition.  I wasn’t sure we could make everything work out, with dance lessons, and competitions throughout the year, but they made it to nationals.  They didn’t win, but they did their best and had a great time.  We are lucky to have such a supportive dance studio, that has been a big help in helping out with managing her diabetes.  By the way, my T1 daughter is 9, and we about a month from her 5 year diaversary.

Heroes are everywhere and seen every day.  What an inspiration.  We agreed so much that we wanted to share your story with the world, but we needed to make a correction in a clarification.  You wrote:
They didn’t win, but they did their best and had…….

We know that you meant the competition but please let this school know; and let your daughter know—-they are not only winners……they define the word (and add you and all those in your family that helped make this happen mom).

Thanks Emily, for making our day and sharing the story of your daughter and her very incredible school.

I am a diabetes dad.

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

Limited Only By Imagination……..Our Kids!!!!!!

CWD1334I love sunrises and sunsets.   While I was attending Hofstra University, I would sit atop the tall dorms and watch the eastern and western skies.  It was so relaxing for me.

The sunrises.  Oh my oh my I have stated on so many occasions that no one makes more mistakes than I do in this thing called diabetes.  It is not a phrase of rhetoric, it is a fact.  I try not having to learn things more than once, but not always successfully.  The cool thing about sunrises; it’s a new day. 

I have always lived by the point that a new day means new opportunities.  Both my job (working at the Diabetes Research Institute Foundation), and where I volunteer (CWD, writings, advocacy, etc), allows me the absolute incredible opportunity of something new happening every day.  A new initiative, meeting new people, discussing ideas with people who want to help, and people with ‘skin in the game’ just like us. 

The Monday mistakes turn into Tuesday’s new beginnings.

I hear from teenagers with diabetes so often how different they feel.  How they are told that things cannot be accomplished because of their diabetes. I’m told the same by many parents who also fear that heir kids cannot do as others.  I tell them that it is a lie.  The world is for them to grab and they must make the decision to go out there and get it. 

CWD1346I received two pictures recently.  The hockey player is Sarah who is 15 and diagnosed at age 11; the other is Kelly who is also 15 and diagnosed at age 3. The two photos are absolutely incredible. I LOVE Sarah’s determination ‘along the boards’ and I LOVE Kelly’s face of determination.  Karate and playing hockey for goodness sakes.  Do either of them look like they are not ‘able’ to do anything?

And they can.  All of our kids can.  And many do.

Their parents sent me their pictures which I used in my slide presentation at my CWD Keynote address along with over 50 other kids who have diabetes and are not afraid, and they shouldn’t be.  They inspire us all each and every day that as sure as the sun rises, they are ready to take on the world.  Numerous parents thanked me for the inspiration they needed to see in other kids to remind them that limits are in our minds only.  But of course the thank you goes to the parents who shared the incredible photos of their wonderful kids.

The sunsets.  A glass of wine, perhaps, and just looking at the sun setting in the west is always relaxing to me.  Long Island has beautiful sunsets and as the day ends it serves as a reminder of what the day held.  What went well, what didn’t; and what to change tomorrow to move on.

Moving on is another crucial aspect to dealing with diabetes.  When we think, “….duh!, why did I do that?…..what was I thinking?…….”  Of course those who do not have diabetes in their household can also have these revelations but when there is so much on our plates, and so much more to balance when it comes to diabetes, I’m always grateful for daily beginnings and endings to continue onward.

Like sunrises and sunsets.

Sunrise

I am a diabetes dad.

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