OMG….Your Number is What…..What Did You Do??????!!!!!

High Blood sugarIs that the phrase you might have used when your child walks in the door and informs you of their meter reading?

In as much as they may or may not comply during the last few hours which made them spike or drop; someone taught me something a long time ago that we try to adhere to as much as possible; just say thank you and ask them the next steps that should be taken to get back on track.

If we understand that the numbers we see are the gauge they are supposed to be to help manage diabetes; why do we as parents show our face of disappointment.  Our kids will read that same face as their failure.

Remember that the next time you want to scream out the window.  It is not your child’s fault they have diabetes and i know you know that but make sure your face and voice do not say something else.

Just a reminder because I surely needed one today.  🙂

I am a diabetes dad.

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

Sometimes a Princess (or Prince) is Right Next to Us.

Ball MaryI know some very special people.

I hate diabetes and everything about it. The journey, though, has allowed us the honor to have crossed paths with some of the most incredible people in the world.  People who care.  People who give.  And quite frankly, people who love.

These people understand diabetes.  Some volunteer their time.  Some are involved professionally.  Some do both.  They are doers, not merely those who talk the talk; they definitely walk the walk.

They have but one goal; so the people who have diabetes, or a loved one with diabetes, are given the same opportunity as everyone else to gain everything they can out of life.  They learn and share; they share and make people laugh; they care and make people think.

They challenge those who have diabetes in their household to stretch one more foot to get the ‘upper-hand’ on diabetes.  Their hearts are as big and as full of gold as there can be. 

They just do.

The problem with my week at CWD is I had to say goodbye to so many of them.  Back home we all have the one, two, and/or three special people who really help us in this journey but for a whole week I was with about 250 (that is correct, 250).  Every place I turned, someone else giving their time, their expertise, their smile to someone else.

In the picture is Mary.  Mary is just the perfect person to represent the attitude of so many
who try their hardest to make a difference every day.  Whether someone has diabetes or has a sibling with diabetes, has a child with diabetes, or even has diabetes; so many choose to help.  Mary, like so many, are tops in their field with degrees and experience beyond comprehension.

What says it all is what Mary has written in her bio when she is at CWD, You can spot her at the conferences-she’s the one with the trail of kids behind her!

No matter where you are; be very appreciative of those people who give—-we would be lost without them.

I am a diabetes dad.

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

When You Need Help…..Who Helps You?

pulling-out-hairAs I read various posts, I rarely see or hear about what a spouse/partner does in the management of a child’s diabetes. 

Let’s face it, sometimes you want to pull your hair out trying to find help but who DOES help you when you need it?

I write often and at her request, I mention Jill rarely in my writings, but let there be no mistake about it; my kids are alive today because of the amount of work their mother puts into this world of diabetes.

Back when Kaitlyn was first diagnosed and we discussed and decided that I would be the one to work and Jill would leave her job to care for Kaitlyn; we had a great foundation for which to move forward. 

We discussed and agreed.

I did not know it at the time but the fact that we discussed, and it was not just ‘assumed’ who-would-do-what, began a healthy foundation for much of the care for our kids.  Now I’m not saying there were not challenges, any marriage has challenges, but when it came to the care of our kids we learned that discussions needed to be crucial for us to understand our roles and also the role of diabetes in our new normal.

There was a mutual respect for the fact that I knew Jill had it no easier than I, and in fact, probably tougher.  It takes a lot to jab your child a million times and watch every step they take at home, at school, and in life.  No one I know is better at this, than Jill.  When I could, I would take the kids and try to get her some space, but her efforts were herculean since day one.

It was difficult to work 16 hour days seven days a week for as long as I did but somehow we made it work.  On many occasions I would come home and find that Jill fell asleep with all sorts of diabetes information all around her.  It was never enough to ‘just do’, it was always about educating ourselves on what was new.

As many of you know, there is a look that glazes over our kids when a hypo/hyper creeps into their active lives; Jill could, and still can, spot it a mile away.  She still reads up on what is new and what is coming and shares that with Kaitlyn (and now Rob also).

I have always stated that I have it easy compared to all that she has done and continues to do.  I know that many ‘go it alone’ and you have tremendous respect from those who know what you are up against.  Hopefully everyone has at least one person to help even if a spouse/partner is no longer present.   Who do you turn to when you need a break or  to those who have help, kindly share how you ‘divide up’ the day-to-day management of diabetes in your household.

I am a diabetes dad.

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

A Fast Approaching Cliff……..Who Will Take Care of Them??????

cliffIn each household there is the one person who completely understands the warning signs of a ‘low’ or a ‘high’ blood sugar other than the person who has diabetes (and sometimes, rarely as far as I’m aware, there are more than one).   I surely hope there is at least one.

Make no mistake about it; in our household it’s Jill.  It’s almost as if she has a sixth sense.  I can see it but by time I notice it, Jill would already be treating it with whatever is needed.  It has always been like that and it’s my understanding that it’s like that in many other households.

BUT………

Our kids will grow up and one day leave us. 

What happens then?  The thought of it makes me feel as if I am coming to an edge of a cliff.  Hold on?  Jump? Let go?  What?

Now I am not referring to those who are leaving for school and THAT is an important issue but today I am referring to spouse, partner, and/or roommate.  Will they know what to do?   Will they know what to look for?   Will we trust that they will know?  Is it that we can’t stop it so we just have to accept it?  And most important, to they know just how important their job is in all of this?

Quite frankly do we think anyone will be good enough to take care of our kids?  I mean I get it when it comes to security, safety, financially, but this diabetes-you-better-take-care-of-my-kids-and you-better-know-what-the-heck-is-going-on is a realization I’m trying to come to grips with more and more as my two kids with diabetes grow older.

Probably more so with my oldest (who does not have diabetes) son now getting married, I have faced that I will go through this two more times.  After the anxiety attack set in; and I think about when the time comes, I guess I must come to grips with the fact that Kaitlyn and Rob will know the person they choose to marry. 

I’m not an easily trusting person when it comes to this point and I certainly will not speak for Jill, but how do we know?  Do we need to know?  I’m very interested to hear from those who have gone through this?  I’m also interested in what you feel having kids with diabetes who will one day inform us that they are ‘moving out’?  And finally do those who are now adults with T1 I ask, was this even a thought in your dating process?  Please reply here as it is a subject I know could interest many.

Here comes that anxiety again.  Let me know your thoughts, I need to take a walk.

I am a diabetes dad.

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

PLEASE Let These Wonderful People Know How Grateful we, as a Diabetes Community, are for their Efforts!!!!!!!

Lions Dancing Diabetes TicketsWelcome.  Here is your ticket to enter a fabulous world.  I am absolutely exhausted.  I am absolutely exhilarated.  I am absolutely thrilled.  For the past few months, we Suffolk County LIONs Diabetes Education Foundation members have been working on a project to raise money to do what we do to help people with diabetes. 

Yesterday we held our inaugural Dancing for Diabetes at the beautiful Patchogue Theatre for the Performing Arts.  Lions DIabetes Dancing Marquee

The brain child of LION Frank Compoccio was to have Dance Schools perform all day long in groups of around five schools each, that way we would have dancers all day long.  Interesting concept; would it work? 

Well it worked indeed and over 25 schools participated along with 600 dancers of every age from 8 on up.  Fabulous.  These dancers were as good as you can get and as professional as one could hope.  They volunteered their time; they danced; their parents donated and over a thousand people came.  Over $22,000 was raised from the event—-JUST FABULOUS. 

Lions Dance DIabetes Check presentationThey sold tickets and when that was not enough they donated checks from their own school as pictured here.

As a parent of two children with diabetes, I was so moved by the professionalism, the spirit, and the willingness to help by all of the attendees. 

 

 

 

 

Frank knew so many people in the ‘business of dance’ and they all volunteered their time.  For my loved ones with diabetes, and for yours. JUST Amazing.  Frank was fabulous.

Frank gave plaques to every school and certificates to every dancer….he said he wantedLions Dancing Diabetes Frank this event to be run professionally and it was.  Here he thanks his fabulous crew who all volunteered for over 12 hours on the day of the event….so much more preparing

We do what we do for our loved ones because we do.  People who do not have that personal connection and their love and support; well that will humble us to our knees.  Enjoy seeing how so many helped our loved ones.

Thank you to everyone who helped and participate; the Dance Schools, the parents, those WONDERFUL DANCERS, and the Suffolk County LIONs Diabetes Education Foundation.  On this day you made a difference and we, the DIabetes Community thank you from the bottom of our grateful hearts.

Enjoy some GREAT shots of the day.

LIONS Dance for Diabetees FireladiesThese young ladies performed an incredibly moving
tribute to our fallen firemen

 

 

 

 

 

Very unique tribute to ‘a few elders’.Lions Dance diabetes old ladies

 

 

 

 

 

 

Lions Dance girls in red

 

 

 

Faces of young dancers ready to go!!!!

 

They were as graceful…………Lions dance diabetes frilly

 

 

 

 

 

 

 

As they wereLions Diabetes Dance for brian dedicated to helping those with diabetes.

 

 

 

 

 

 

So many Volunteered their time.
Lions dance Lion members

 

 

 

 

 

 

 

And they kept dancing, and dancing.
Lions Diabetes Dannce black chair

 

 

 

 

 

 

 

Thank you all.
I am a GRATEFUL Diabetes dad.

What is Your Question?????……the DOC is Here to Help.

The last week has taught me a very valuable lesson.  So many people responded to the questions I asked and many more parents were grateful for the input.

We, as parents, have an incredible resource available to us.  As I read many private and public replies, emails, and private messages I have learned that many parents have questions and do not want to be public with their questions.

I know that there are so many in the DOC (Diabetes Online Community) who want to help because their experiences have been there.  SO here is what I am proposing.  If you have any question that you would like to see addressed, no topic is off limit, email me at tkarlya@drif.org

At different times I will post the question for people to reply via my blog.    Now that means you will have to trust me to keep your name distant from the question and confidential; I can assure you that those who know me will let you know that I can keep that to myself.  My only interest is in helping.  

Also know that these answers will help to only guide you, medical questions MUST BE ANSWERED by those who are professional and in the know….this is a guide on what others have done to solve what yo may be facing now. 

WHO has the problem is nowhere near important as helping solve the problem…..you will have to trust me on this.  So if you have a question, email me and at different times I will get it out to the DOC.  In the subject like just write the words ‘a question’. 

We will try to get to as many as we can but the SOC is a fabulous resource—-it should be used and sometimes anonymity is what is needed, and I will be glad to be the go-between and help get your questions answered without letting any personal information get out.

Let’s help each other.

I am a diabetes dad.

 

Death Too Soon…..We Can All Help……Even a Little

Take a good look at the photograph.  A father and a daughter; the bond of which love is universally understood.  They are at a charity fund-raiser to find a cure for the little girl.  Her name is Megan and her father worked tirelessly to help raise funds to find a cure.  Interestingly enough, it would be a cure for him also because he too had Type 1 diabetes.  But daddies do not do for themselves, they do for their children. 

Imagine that bond.  Even tighter if ever there could be one.  Both having Type 1 diabetes.

Her face is absolutely priceless, she is just gorgeous.  Would you not agree?

In an almost instant Megan, and her family’s life would change…….unfortunately forever.

From my good friend and super-dad Tim Brand who wrote:
I remember seeing another sad post about someone passing away in the diabetes community, but this hit close to home. Another d-dad passing away at too young of an age. Another family lost their hero, kids lost their father, a wife and mother left to grieve, left to wonder about her family. So much does not make sense as to why a man of 42 suddenly dies. Makes less sense when its a d-dad who is the primary bread-winner. That leaves the wife and mother left to wonder about tomorrow. The Doss family has been left to wonder and they need our help.

Brian Doss was a super-hero dad.

And it is our help we will give Tim.  Look I know everyone has their hand out at his time of the year but if we cannot come together to help one of our own…..where does that leave us?  Imagine if 1000 people just gave only $10.  Just ask yourself one question: Can I give just a little bit…….a little bit…..and do it! 

I have said 1000 a times, any writings I do must come down to us ‘not doing nothing’ and if ever there is a chance to help someone……I must make that attempt, we must make that attempt.  There by the grace of God, go all of us.

Go without that beer or pack of cigarettes this week.  This family is devastated.  So many times we give to great places and organizations—-this is a direct hit on a family we know and we care about.  Search your heart….and give something…..anything.

You will feel good about helping one of our own.  Losing a super-hero-dad is crushing.  By all accounts, Brian was a super-hero-dad.   Let’s show Mary Ellen, his wife, and his children that we do care, and will care.  

Their hero was taken and can never be replaced.  At least let’s try to give them some financial relief……….imagine the holidays without your hero! 

Go here: http://www.giveforward.com/dossfamilyfundraiser ……..take a final look at that picture…….do it because Megan’s daddy would have most undoubtedly have done it for you.

Thank you.

I am a diabetesdad.

Your Child May Listen to These Folks….Even More Than They Listen to YOU!


Unless you are a parent of a child with diabetes and actually have diabetes, you do not know what it means to have it, and live with it, every second.  I have stated that many times.  Conversely, children who have diabetes do not know the pain we, as parents, feel.

Today I am listing many members who write about what it is like to live with diabetes who actually have diabetes.  In as much as parents talk to each other to both empower and help each other, no matter how hard we try; our kids KNOW we do not have it.  I do believe at some point or another, a child ‘will play that card’ to remind us that WE JUST DO NOT KNOW…….and they would be correct.

Take a look at this powerful list below of people who write about living with diabetes.  Read them, but more importantly, share the ones you like with your child who has diabetes because the information these writers pass on……..is invaluable.

This group from the Diabetes Advocates web page http://diabetesadvocates.org/ do not have to write about what they know.  But they do.  They do it with humor, pain, and reflection to help all those who are on the same journey that they have been on for some time.

We would never choose to make a meal that we have never tried before without a recipe, would we?  We would look to the experts who have made the dish before to show us how to do it perfectly.  Well here is your recipe to help your child; read them, and follow them for a few weeks.  When you find one or two that you really like; just print out some of their articles and leave them around the house.  Your child, who of course is at the appropriate age to use a computer, will find it and take it from there.

They write great stuff.   Many have achieved great things.  But mostly, they write from their heart-felt experiences.  And what can be better than that?

We really do not know what it is like to live with diabetes……….here is a gift you can give your child(ren) who have diabetes; the gift of experience.  What they are feeling these writers know already.  Been there, done that.  We thank them for their efforts on first-hand-lessons we could never teach.

I am a diabetes dad.

DA Resources for Type 1 Diabetes


1happydiabetic.com Bill Woods

Bill produces diabetes video logs, or vlogs.  It’s all about having the right diabetes attitude

alizawithdiabetes.com Aliza Chana Zaleon

Aliza lives with type 1 diabetes and multiple other chronic illnesses. She tries not to let that define her; rather, she has decided to DEFY the odds!

bittersweetdiabetes.com Karen Graffeo

Diagnosed with type 1 diabetes in Dec 1979, Karen blogs about its up and downs at Bitter-Sweet.

blog.sstrumello.com Scott Strumello

Scott writes about and provides an analytical view of the most current type 1 diabetes issues, including his acclaimed ‘Business of Diabetes’ feature.

bloggingdiabetes.com Tony Rose

A blog and podcast about real life with diabetes.

carbdm.org Tamar Sofer-Geri

The Carb DM website complements the work Carb DM does to bring the type 1 community together.

countrygirldiabetic.blogspot.com Cara Richardson

Living life with type 1 diabetes. Every day, every hour, every minute!

diabetesaliciousness.blogspot.com Kelly Kunik

Author of the patient blog, Diabetesaliciousness. Kelly is a diabetes advocate; blogger, speaker, writer, humorist and living-with-diabetes consultant.

diabetesinspain.com Mike Young

Mike is interested in healthcare social media consulting and diabetes advocacy.

diabeticallyspeaking.com Martin Wood

Diabetically Speaking is about life with diabetes and all the adventures that happen in between. Martin Wood has had type 1 diabetes for more than 30 years, and is a medical librarian, a cyclist, and a purveyor of all things awesome. Martin has an affinity for all things plaid, and believes that in everything we do, we should find a way to have fun doing it.

diabulimiahelpline.org Erin M. Akers

Diabulimia Helpline is a non-proft organization devoted to the support, education, and advocacy of diabulimics and their families. DBH is working to help diabetics with eating disorders find hope and recovery through their 24 hour hotline (425) 985-3635, three online support groups, an insurance specialist, regional workshops, and a direct line to the best treatment programs in the U.S..

kellywpa.com Kelly Booth

A type 1 diabetes patient since January 1984, Kelly shares what she has been through, including neuropathy and gastroparesis, and provides information to help others.

ladalife.com Susi Rafati

Susi has been living with LADA (slow-onset, antibody positive diabetes in adults) for 35 years, and  uses an insulin pump.

livetolovediabetes.com Naomi Kingery

Naomi Kingery, also known as The Diabetic Diva®, has been involved in the diabetic community since her diagnosis at the age of twelve. She is the author of The Sugar Free Series, and the writer of  the blog livetolovediabetes.com.

livingvertical.org Stephen Richert

Stephen writes about climbing and adventuring with type 1 diabetes

MeandDBlog.com Jessica Collins

Jess has lived with type 1 diabetes since 1993. She shares her random thoughts and musings on life with diabetes on MeandD.

MegansTouch.com Megan A. Quickle

Megan created Megan’s Touch to combine diabetes blogging, education and advocacy to find a cure for diabetes. Megan has had type 1 diabetes for 24 years.

momentsofwonderful.com Sara “Knicks” Nicastro

Diagnosed with T1 diabetes as an adult, Sara advocates for living life to the fullest. “I’d rather have 30 minutes of wonderful than a lifetime of nothing special.”

ninjabetic.com George Simmons

George shares all sides of his diabetes life in order to reach those who feel alone.

pearlsa.com/blog Pearlsa Bintomani

A girl’s life collides with type 1 diabetes and she becomes an advocate.

portablepancreasgirl.com Stacey Divone

Living with type 1 diabetes for 30 years,  Stacey has had her “portable pancreas” (or insulin pump) for five. Her site shares her story of coping with diabetes and everything else life has thrown her way.

princessladybug.blogspot.com Cheri Pate

Each time we meet a new person with diabetes or the loved one of a person with diabetes, we have the opportunity to learn something new about diabetes and ourselves.

ridingoninsulin.org Mollie Busby

Riding on Insulin features ski/snowboard camps for kids and teens living with type 1 diabetes.

scottsdiabetes.com Scott K. Johnson

Scott’s Diabetes is where Scott talks about living his life with type 1 diabetes.

sixuntilme.com Kerri Sparling

Kerri Sparling has been living well with type 1 diabetes since 1986. She manages her diabetes and lives her life by the mantra “Diabetes doesn’t define me, but it helps explain me.”

strangelydiabetic.com Scott Strange

Diagnosed in 1970, Scott Strange believes in being brutally honest about diabetes and shares his experiences so that others may benefit from them.

sweetlyvoiced.com Melissa Lee

Melissa Lee was diagnosed with type 1 diabetes in 1990 at the age of 10. She voices her journey as a diabetic, a singer, and a mommy at her blog Sweetly Voiced.

t1trigirl.org.nz  Heidi-Jane James

The T1 Consulting Organization is concerned with raising awareness of type 1 diabetes and supporting type 1 diabetics in living  a healthy and sporty life.

textingmypancreas.com Kim Vlasnik

Diagnosed with type 1 diabetes in 1986 at the age of six, Kim writes about and illustrates her life with diabetes on Texting My Pancreas.

thebuttercompartment.com Lee Ann Thill

A lifetime of type 1 diabetes: reflections on the struggles and triumphs, inspiration, art and the creation of meaning.

thegirlsguidetodiabetes.com Sysy Morales

The Girl’s Guide to Diabetes seeks to encourage and empower women with diabetes to live their lives to the best of their ability.

thelifeofadiabetic.com Chris Stocker

The Life of a Diabetic is a blog about what Chris Stocker, a person with type 1 diabetes, goes through on an everyday basis. Just another person living a normal life with diabetes.

type1diabeteslounge.com Merle Gleeson

Living with diabetes is a constant challenge, and connecting with others in the same situation can help us feel less alone.

type1rider.org Tony Cervati

This organization is dedicated to all people affected by diabetes, particularly those who ride and race bicycles. The primary goals of type1rider are outreach and advocacy.

victoriacumbow.com Victoria Cumbow

For more than 19 years, Victoria has lived with diabetes and learned that having a support network contributes beyond all imagination to her diabetes management and control.

wearediabetes.org Asha Brown

We Are Diabetes is an organization primarily devoted to promoting support and awareness for the eating disorder diabulimia. We are dedicated to providing support, hope and resources to those who suffer from diabulimia, as well as to their families and loved ones.

youtube.com/mrmikelawson Mike Lawson

Mike Lawson’s YouTube series My Life As A Pin Cushion, is a positive, comedic way for him to share some of the lessons he has learned living with diabetes and to spread the positive message that a diabetes diagnosis doesn’t mean that you have to stop living.

 

T.G.I.F. (Thanking Great Individuals Forever)…….these dads are serious.

Today’s T.G.I.F. are a group of men I met recently.  When I was over in the UK with the Children with Diabetes I met a group of dads, an amazing group of dads.

They are regulars dads, husbands, partners, with regular jobs, likes, responsibilities and in many ways are just like any other dads…….but they have achieved something that I have not witnessed before in my 20 years at this ‘diabetes’ thing…….they have a bond, a really tight bond.

They have created a mechanism that works for them incredibly well.  They have a trust.  They have a place they go where they can talk about anything they want from diabetes to sports to anything else that comes into their lives that they need to discuss.  They do it in a place that they have built where there is a comfort level knowing that it will stay within the confides of the group.  When it comes to dads, this kind of group is unique to me.

There ARE dads groups and discussion groups that are run very well, but these men have made a location where it is mano y mano only to discuss whatever it is they need to discuss in dealing with diabetes and life.  This is a support group with a rock solid foundation of trust.

My main point about this group is that they came together and created what they needed to work for them.  Many may not believe it is ‘okay’ to have a mens only and invite only group; and surely you are entitled to your opinion.   But as I read over some of their subjects that are discussed, I was moved deeply as these men truly pour their hearts out to each other when it comes to the way they deal with diabetes in their household.

This is not a “man vs. woman thing”, rather this is a place where opinions on everything are on the table; for discussion, for help.  Many professionals will tell you that one of the most important issues in dealing with anything is communication.  Sometimes that self-searching begins with discussions with those you trust and understand because they are dealing with the same ‘life’ as you are and may have achieved better results.

However this all works, it works for this group of dads and it works extremely well.  The specifics will remain with them and their actual location will remain theirs.  Another major point is that whatever is needed to deal with diabetes, it takes a lot of work to make it happen.  In the lives of these dads, diabetes was just not acceptable and they needed a place to learn from each other…..and they created such a place……and THAT is a really good thing.  Perhaps we all can learn that something important, something needed, should be sought until found.  These men surely did.

Take a bow dads, I envy your fellowship and you are diabetesdad’s TGIF.

I am a diabtesdad.