What Surpasses Tears of Joy? Perhaps, Smiles Upon Smiles of Joy!

I have never been one to force emotion…..if it is how I feel at a particular moment, it becomes whatever it becomes.  We all live in the ups and downs with emotion starting the day we heard the words, “your child has, what is commonly called, type one diabetes.”

Finger pricks, injections, 3 am blood checks, and the feeling that you are utterly alone is enough emotion for a life time.  So many, and I MEAN MANY, of my friends co-warriors in this fight had bets when, during my daughter’s wedding day, I would completely lose it.  Seeing her for the first time, walking her down the aisle, and surely by the ‘daddy-daughter’ dance you were going to have to scrap me off the floor…..right?

Not exactly.

You see I actually cannot remember the last time that I had the feeling I had like I did the day Kaitlyn became Mrs. Andre Burnett.  To be THAT happy was the most wondrous feeling I have had in a long, long time. Not one tear, anywhere, just joy.  The entire planning of the wedding was a delight and the actual day itself was heaven on earth.

There are many aspects to the planning of a wedding.  Much different for a daughter than a son.  Engagement parties, showers, parties, wedding-rehearsal dinner and then the big day.  There was just so much love.  Not only within our families but from our extended friends and family we have met while on this incredible journey, so many were extending good wishes and great love…..we thank all of you and felt it from all of you.

SO if you have a child with diabetes, I want to share that one of the most joyous days of my life occurred after diagnosis.  In the spirit of present day; Olympic Mega-star, Multi-Medal Winning Swimmer, Gary Hall shares freely that he won more awards after diagnosis than before.  I know that feeling now more than ever.

The take-away is that even after diagnosis, the best days in you life may very well be ahead of you.  Hold onto that thought—-you will need it.  And sometimes those incredible smiles…….are worth their weight in gold.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

What Does a Dad say to his Daughter on her Wedding Week?

Dear Kaitlyn,
Daddy’s little girl, my little girl.
When I sat down to write this, I was going to send it to just you.  Something this personal is meant for a father and a daughter.  But you and I have never just lived between you, mommy, your brothers, and I; have we?  Our family, in our diabetes journey anyway, well we have lived in a bit of a bubble haven’t we?  And it’s that very idea that gave me the start I needed for this letter.

Thank you.

In all the years I have written, and all the things I have shared, you NEVER ONCE came to me and said, “Dad, you should not have shared, that.”  Any time we discussed it, your answer has always been pretty much been the same, “If others can learn, share it.”  From tears, to tribulations, to pain, to laughter, to silliness, to private moments, you let me tell our story.  What the public does not know is that we did not ‘just do’, we asked.  But that did not change the fact that you said, ‘go for it’; a million times.

Thank you.

For all the times I came to you and said this mom and this child could use a phone a call.  I always tried not to find out the details as sometimes a young lady needs to speak to another about their diabetes, so information was usually scarce but your desire to help never was.  “Give me the number dad, I’ll call”.  Caring and sharing with kids at diabetes camps, at CWD, at support groups, individual, and elsewhere has always been inspirational. You compassion ‘way back when’ made it pretty clear you would be in a profession to help others.  As a nurse, you made that very clear, very early.

Thank you.

For sharing Andre and allowing he and us to get to know each other on his terms.  Not what you want us to know him as, or even what we wanted to know him as—-this is a very difficult thing for parents sometimes.  He is a wonderful man and I could not be passing my daughter’s hand off to better suitor.  And more than that, as of next Sunday he will become another son to me…….he pretty much is already.  He did that on how he treated you, how he loves you…….on his terms.  We welcome him and his wonderful family and it is GREAT that they like to party too.  Your journey together will provide much of that for all of us I’m sure.  My prayers will continue asking God for his safety  every night and day as he places a gun on his hip and a shield on his chest to protect those he does not know….this is a special man.

Thank you.

For being you.  No matter what has happened in our lives, you stayed true to you.  Your love for others but specifically for this family has meant the world to all of us.  Your love for your two brothers–what you have done for them over the years always ‘watching out for them’ has been incredibly comforting to mom and I…..and them; your humor, OH YOUR WONDERFUL HUMOR–from Turkey songs at Thanksgiving to your creativeness in everything you touched, to going to the deli to buy a pickle because it was ‘a free food’ while all your friends filled up on sweets, to silly songs, stuffed bears, and so much more makes you such a wonderful person.  You’re laughter and ‘no drama’ is infectious.  You rarely complained, if ever.  You took every obstacle and challenge and showed us how to make it a teachable/learning moment.  You taught me the most important lesson I have ever learned in this diabetes journey when you answered a news reporter so matter-of-factually, “I have diabetes, diabetes IS NOT who I am”.  You said it directly and clearly and it’s something anyone dealing with this disease either personally or with a loved one MUST HEAR in their life…..and often.

You have taught me more about this disease than any book, any doctor, any professional ever could.  Together, and much through this column, many learned from you from stories and by your example.

On the week a daughter may be getting married a man might tell his daughter that he is done teacher her all about life and she will now walk with the man of her dreams.  But Sweetie, when it comes to diabetes, you have been the teacher since the day you were diagnosed, and I have feeling it will not stop anytime soon with me, nor those you meet.  And the world is a much better place for it, because of the way you have handled your diabetes, your life, and this journey.  THAT is enough to humble any man…………………even a DiabetesDad.
Congratulations on your wedding day, and I love you to the moon and back.
KKNN
Love Dad

When ‘My’ Jesus Joined the Diabetes Battle……or Did I Join His?

Quite a few people reached out to me this week to ask me about my comment I posted about Victor Garber last week.  I posted a video of Mr. Garber and his public service announcement about the missed diagnosis of T1D, I will post it again at the end of this story so you can see it too.  Many wanted to know just how he influenced my life.

A long, long, time ago, I went to the movies and saw Godspell.  When it was over, I could not speak.  I fell in love with all of them, every single member of the cast.  I was so moved by the man with the HUGE hair who played the role of Jesus.  His name was Victor Garber.  Years later I would find out it was his real hair…..of course it was, there was nothing fake about him.  But I digress.

I played the Godspell album so many times when I was 16, I wore it down and had to buy another one.  I knew every word and every nuance of the movie.  I read everything I could about it.  My junior year in high school there was a post about auditions for a school production of the King and I; it never even occurred to me to audition for the ‘main musical’.  But right next to the notice was a smaller notice, Sister Patricia Crisci would be holding auditions for a production of Godspell.  My dream of one day singing “All for the Best” with Victor Garber would be one step closer, if I could only be cast in the show.  Victor Garber was my Jesus.  One day we would work together.  If that was TOO BIG a dream, perhaps I would just experience the magic I felt from the movie would have to do.

Really?  Godspell!

Just a bell did not go off in my head, an entire bell-ding-dong-orchestra went off…..THIS was for me.  In the school production the roles of Jesus, John the Baptist, and the ‘Turn Back O Man’ actress were cast already and the rest of the cast would be doubled up and one cast would perform on Friday, and one on Saturday.

I just wanted ‘in’.  I had to get to get in.  I worked for days on my audition.

I was cast as the silly one who does the imitations, cracks the great jokes and sings “We Beseech Thee”.  I was in.  I loved every single minute of it.  The cast was incredibly close and we were together almost every minute.  There was just no way that I could not fall for the girl who sang “Day by Day”, and Karen wore my high school ring all through Junior Year of High School.

If one could ever touch magic—–this was it.  The make-up crew, the costume crew, the musicians, and us as cast…..we worked on the show for months and gave the Broadway production a run for their money (not really——but we thought so).  We were just THAT close and the show was a huge hit with the school.   In my eyes this all began from a musical starring a tall skinny man with huge hair, who had the purest of hearts, the kindest of eyes, and the voice of an angel.

On the night of my performance I came off the stage and said to my mom, “I will do this for the rest of my life”. The magic of Godspell was in my heart and it would remain.

I had to stay at this thing called acting….and I did for many, many years.   My acting career would take me back again and again and again to the first show I was ever in, Godspell.  It would also be my first ‘professional’ show (first paying job) and my first Summer Stock show.  Yes, Godspell would come to mean more to me in my life than any other show from the time I first saw the movie and Victor Garber was singing in a Times Square Billboard, to the four more times it would touch my heart and soul in live productions over my career.

Yes, I stayed working as hard as I could as an actor and successes were coming in; until my heart would be touched again.  When I was leaning over the bed in an I.C.U. at Stony Brook Hospital and promised a two-year old little girl that we would do all we could to find a cure; and to change this world of diabetes, the acting career would eventually be put on a back burner and a new career became more important.   And in that new career I learned that Mr. Garber also had type one diabetes (since age 12).

I have walked this earth, of late, shouting from the mountain tops how vital the seriousness of the missed diagnosis of T1D is, and sharing with ANYONE who will listen.   When my friends at Beyond Type 1 sent over the new and recent video of Mr. Garber discussing the warning signs of T1D my heart leaped out of my chest (click the link to see the PSA).  I cried when I saw it.  A circle in my heart had come to completion.

I may never, ever, get the opportunity to sing with my childhood idle, but being in the same battle of diabetes with him….well…..it’s……...All for the Best. (Click this link to see Mr. Garber in Godspell singing All for the Best—-without me  🙂 …….SIGH—Some day!)
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Our Baby Newly Diagnosed…….What Next?

Do you question your child’s future?

In 1992 when Kaitlyn was diagnosed, insulin pumps were just coming around to commercial use.  At that time, the management tools were better than they were years ago, but of course not as good as they are today.  When Kaitlyn was diagnosed, we were devastated.  We learned many things in the early years but probably the biggest and hardest lesson was that diabetes is not our disease.  It belongs to Kaitlyn.

Granted, it impacted everything but we learned the faster Kaitlyn ‘took on’ this disease the faster she would understand it and the more she had a chance at controlling her own future.  To be clear, Kaitlyn surely had times when she had enough, when she was depressed, when diabetes started to edge ahead and think it might gain the upper hand.  By giving it back to her, she learned to manage this monster at every different stage.  It was IN her life, it did not OWN her life.

I best understood this when she was being interview for a news show when she was nine and responded to the reporter, “I have diabetes, diabetes is not who I am.”

Amen.  Girl Defiant!

It was at that moment I knew we were on the right track.  Going to support group meetings, having her involved with decisions (even at a young age), educating her the best way we could as we learned ourselves; all contributed to her feeling confident that there was not a thing she could not do.  NOTHING.

Life was hers for the grabbing.  Dance school, sports, school activities, and everything and anything was on the table for her to try.  We gave her the choices to not only be involved, but also to accept the challenge of this disease; to know that a glycemic reaction was occurring and to tell us/a coach/a teacher.  She needed to do things so diabetes was in managed and she could not be shy.  She owned the management.  Unless it was a severe glycemic reaction, she stayed in the nurses office until she felt better.  We did not run to the school every time she went high or low.  She needed to know we would not coming running every high, and/or every low.  She saw her way through each episode.

In  the earlier days, we were right by, but she did not know it because we wanted her, HER, to understand exactly what was happening. When we would go out when we first started with a babysitter, we would get in the car and just park down the block, just so she was used to us leaving.  Each time we exited, it would be longer and longer until she knew ‘she had this’ diabetes thing,

We tried to minimize the fear by adding understanding. We minimized fear.  Fear is the unknown, the more one knows, the better they will be.  Mistakes were to be corrected and management tools were gauges, not report cards.  And we were not afraid to make sure her medical team understood this as well.  With the management tools in existence now, you can almost follow them every minute.  Now more than ever, you need to get them to take charge.  If you are following them like a drone, the rebellion at some point is going to be huge.

CGM.  Don’t even let your T1D child even know you have an additional device monitoring them.  The extra device should allow your child to do more on their own, because now you can make sure they are okay.  You are the back up…..NOT The ones to do everything.  Please trust me on this.  Parents are doing more than they ever have before and as long as you are willing, your kids will let you. But to what end.  Teach THEM to manage their diabetes.  Don’t fall for that adage, “Well I’m taking care of it now because they are going to have to take care of it the rest of their life.”  Would you carry them now because they will have to walk the rest of their life?  Of course not.  It’s exciting to watch them learn and be on their own; and with diabetes it’s no different and THEY WILL BE STRONGER THE EARLIER YOU START

The confidence they will gain is immeasurable.  Kaitlyn was an elected class officer, in the prom court, and the homecoming court.  She excelled in everything and I whole heartily believe it was because she learned to manage this disease during a time there were half the management tools around as there are today.

It was a long time ago since we started and in three weeks I’m walking her down the aisle and placing her hand in another man’s to have and to hold.  That confident young lady has been ready for a long time and it started when she was six and she gave herself her first shot.  It grew from there and we stood back as much as we could, helped when were needed, and allowed her stand when ready.  Sure we were there.  But as she grew and she wanted to do more and more, we let her.

It was so exciting.

Be there to pick up your child when needed…….don’t carry them the whole journey.  They will run one hell of a race, but only if you allow them to walk first, on their own.
Remember that, sit back, and be amazed what they…….will teach you.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

A Mother’s Love……a Daughter’s Dream…….an Unbreakable Bond.

Kaitlyn adn Jill ShowerI have stated millions of times that my children could not have been luckier than to have the mother that God granted them.  When I opened this picture, tears flowed down my face.

Kaitlyn’s Bridal Shower was this weekend and those two smiling faces would make any man’s heart overflow.  Over the next few weeks leading up to the wedding, I have a few things I would like to say and I hope you will indulge me a little, and more than that; I hope I leave you with a few things as well.

Jill was never ‘a friend’ to our kids…….although sometimes she would seem like that, and other times she would not seem like that.  What she was, and is, is the most incredible ‘mom’ they could ever have.  In Kaitlyn’s upbringing, Jill set the bar on what we would attempt to do as a family in this world of diabetes.  Her fierce appetite for knowledge is the single reason Kaitlyn and Rob are doing as well as two parents could ever hope (although we always hope they can do better, wink-wink-parents–right?).

And outside of Diabetes, TJ, Kaitlyn, and Rob had the compass of life that Jill lived by; and they are lucky indeed.

When it came to diabetes, I may have been the one ‘out there’ (and she was when needed) but it was Jill’s resilience in not only understanding this disease, but making it understandable for one child starting at age 2 who had it, and one at age 5 who did not, and then a little later a thirteen year old diagnosed because that’s how life goes some times.

The dynamics of three children and a husband and wife as a family….well will stay with us because everyone has life and it impacts so many in so many different ways and what is important to know is……………………….here we are.

What is important to know is that we did not just get from there to here on a wing and a prayer; although prayer was surely a big part.  We prayed for the ability to learn and the direction to go so our children would not die (there I said it).  Quite frankly, there’s no way to soften that thought–it was our fear and probably always will be.  Probably yours too.  But that fear…….feel it.  Really feel it because it is THAT fear that is your first lesson in diabetes.  The lesson—-own it; because it will do everything to own you.

But we learned to harness that fear with the reigns of education so we could ride this out with us in as much control as possible.  We learned that we had to do EVERYTHING we could because the biggest mistake in diabetes is thinking that you are done learning….and as parents, we never are done.  Many times I mentioned how with a 5-year-old and a two-year old, the house was always clean, the kids were always well taken care of, and yet, by time I came home, Jill was asleep with diabetes articles, and magazines, all around her on the bed.  She did not just want to know diabetes; SHE HAD TO UNDERSTAND IT COMPLETELY—-it’s the only way to beat your enemy.

We would fail a thousand times and yet;………….try to do it better the next day.

By her desk I would see notes from the newly diagnosed family she found the time to speak to, or write the letters for fund-raising, in addition to everything else she did. And of course, I would move the magazines and see the mascara stained pillows of tears from a mother who only wanted her baby to not be ruled by diabetes.  Oh on many-a-night I saw those tears on a pillow.

Our daughter is just a month away from marrying the Prince Charming she dreamed about since she was a little girl.  And truth be known, he’s a pretty special man.  Take a look at the picture again.  I can tell you that the bond of THAT woman and THAT Bride-to-be is absolutely unbreakable.  She guided her, and absolutely LOVED her into the mold of the woman and bride she has become.

So many moms wonder what ‘if’; when their child is diagnosed………..look at the picture above moms, the answer is yes.

No, we did not ‘just get here’, we got here through a lot of love and a lot of prayer.  And she grew from age 2 to today overnight—-just 27 years in the making.  May you find your way as well, and may God Bless you on that journey.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Diabetes Under Siege…….Only WE Can Change it!

Under SiegeIf you look around the world today, you can easily see that there are many voices rising for many injustices.  Injustices, in some cases, which have been occurring for decades; if not centuries.  Speaking for myself, I’m glad to see the dial of injustices just begin to move.  Women are as equal to any man and coming from the home/upbringing I came from, I never felt differently.  When a black person cannot ride down the street and feel safe merely because they are in a ‘wrong neighborhood’–there is something wrong.

All combinations of these injustices come into play but the important thing that I have seen, is that the voice to equalize wrong doing is loud and clear.  People and media who thought they could say anything and do anything are finding out that is not the case so much these days.  It needs to be honest and not merely to capture readers.

I’m encouraged now more than ever that new voices will move to the front of the pack and be heard.

Now my writing today is not about politics and the world around us.  After all, ours is the diabetes world, right?  For over twenty-five years I have heard so many injustices that those in the diabetes world feel.  Real problems.  I also feel like we move on from one problem to the next pressing problem, without first finishing the battle at hand.

Prices of insulin are still way too high.  People are still becoming gravely ill and dying from the missed diagnosis of T1D.  The world at large still does not understand the difference of diabetes…..and some actually believe one is lesser a problem than the other.  Medicare and Medicaid needs help and guidance.  And by and large people still are under the belief that everyone working in their own silo, and not united, is the best way to work……but is it?

If you follow the world lately, the two words that come to my mind more than any other are the words, “UNDER SIEGE”.  The groups of people demanding action is because they had enough…..’we are under siege and it stops now.”  The message is delivered and it is continued EVERYWHERE.  It becomes one voice.  Loud, clear, and most importantly: Unified.

It’s now time.  As long as all diabetes groups spend their efforts in 32 different arenas, no one will hear us.  All diabetes groups can still do what they need to do; advocacy, college life, fund research, fund projects but why can’t there be an underlying theme each year.  Remember the “Year of the Child”.

We are under siege but there are so many causes that no one cause is really moving the needle……is it?  Why can’t 2018 be the year Insulin costs are examined completely.  Not for a press release how wonderful an organization is looking; but imagine for REAL action.   If every trip up to Washington is about this topic, if every event is attached to that message, the message would be loud and clear.
Imagine:
“XYZ Charity held their walk today to help find a cure but Joe Smith the Walk Chairman stated, ‘this is also to raise our voices about those who cannot afford to take insulin because the prices are too high.  We need better examination of the current health care system.”  2019; different topic,  2020; different topic.

Get it.  I guarantee we will look back in 2023 and see how we have accomplished.  If you looked back now; could we say that?  It’s time for everyone to ‘do their thing’ but with a message on an arch each year.  Loud and clear.

The world will not know we are under siege, unless we tell them.  But with so many different messages, and so many different voices trying to be heard results in……well…….no one hearing anybody.  For over 25 years I have observed us as a community.  Incredible.  Passionate.  Brilliant.  The one thing we have not been, is a single voice.  We need to look at it because as so many other groups active in the world are teaching us…………………….it’s time
I am a diabetes dad.
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Dear 2018……..uhmmmmm…..’gotta minute?

dearsantaletter-outDear 2018,

Nice to meet you and we look forward to your arrival.
You may not know me fully but I’m pretty sure we both know of each other well enough from others, and I was told to contact you for the things that might be important during this upcoming year in my world; which is a world of diabetes.

I get it.  You’ll have people with long lists regarding the state of affairs here and abroad.  You will have people screaming on both sides of what is correct from their standpoint which they will insist is in the best interests of all…….sort of impossible, I know, but they will insist.

You will also have people asking for incredible mountainous requests for sick relatives and dire situations.  All-in-all, I do not envy you your situation.  Not only will you not make everyone happy, it’s my guess you will make only precious few as happy as they may want.  Powerful is the individual who recognizes that they cannot do anything about what enters their world but it’s what they do with what comes along that creates the path they walk.  We are each faced with that task.  Life is life; and no matter where we are in this world…..we are given life to deal with and manage.

With all of this in mind, it’s also my understanding that you take requests. It has been made clear to me, 2018, that you are not Santa Claus but that request can be made and you will sort through and figure out what is best and that asking is completely encouraged.

Okay…….so here we go.  This is my request for our diabetes world.  Others may chime in as needed.

First and always, I want a cure.  I’ve been asking this for some time and although I have not been one of those who point and say they have been promising it within the next five years (who are those people anyway?), I think it’s time.  Or, at least, some REAL significant progress toward that end.  Some clinical (human) trials in kids…..something promising please.

We also need some stability in the insulin world when it comes to pricing.  Either allow some of the cases to come to trial that make/prove definitive and serious allegations to force lower costs, or have someone come up with a generic brand that will shake the foundations of those who think they control all costs—-the prices are too high, 2018, please look into this matter.

Please help us make a REAL dent in our journey to stop the missed diagnosis of T1D.  No one should die or be missed diagnosis that in turn causes major havoc in people’s lives.  IT’S JUST SO AVOIDABLE, 2018, it’s almost ridiculous.  Thank you for the continued efforts of so many—-it’s MAKING a difference but we need to really make this a national initiative.

Health care costs.  Okay here is the deal, us in the diabetes word ARE NOT THE ONLY ones asking about this 2018.  YOU HAVE GOT TO KNOW BY NOW how important this issue is for so many causes, so many people, and so many reasons?  A group of fat cats in our Nation’s Capitol can no longer be allowed to merely make changes without fully understanding of what the impact will be…..it’s a mess 2018, please both tend to, and fix, this situation.

Management tools.  2018, I am not just  referring to a device that reads blood sugar and dispenses insulin; I’m talking about all management tools.  There needs to be a healthy array of available equipment and not controlled by just one or two companies.  This just makes no sense.  Never before have people (patients, loved ones of patients) been so nervous that what is available today will not be available tomorrow.  Medicare and Medicaid need to cover what is needed and we all need to know that what is needed will always be available.  It’s just not fair.

2018, these are all practical and needed request and understood, they are all tall orders.  But I have faith in you and believe in you.  From the fiasco of diabetes issues 2017 left behind, my hope is that you are better, stronger, and more aware of how to navigate the waters-of-need for all those who do not want to just live with diabetes, but thrive with it.

Good luck 2018, we be in touch to see how you are doing.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

The Night Before D-Christmas—2017

Santa Claus magic dustWith special apologies to Clement Moore. I present what has become a DiabetesDad tradition……an updated, ‘Twas the Night Before D-Christmas for 2017

‘Twas the night before Christmas, when all through the house,
Not a creature was stirring, not even a mouse.
The meters, CGMs, and supplies were put away with such care,
In hopes that Santa would bring the cure with him this year.

The children were nestled from head to their feeties,
While thoughts in their head were no more diabetes.
And mamma in her ‘kerchief, she prayed for the cure too,
A dad still wonders what else could he do.

Remembering this year; and things we did see,
Like MiniMed’s Hybrid they call the 670G;
Away to the D-Community to see who was a hero on fire,
It’s those who battle T1D who really inspire

As costs continue to rise and wallets get thin,
We fought hard for lower costs of insulin.
The community raised voices loud and concise,
Costs are too far and need to be lower in price.

It was tough this year as great ones left out the door,
Just some were Keith Campbell and Mary Tyler Moore.
Their voices were loud and their voices were clear,
They will surely be missed, wish they could stay near.

Others will take the lead and we will all see
Better products, more work, and good advocacy.
Better pumps, insulin, and CGMS by the score,
There’s plenty coming and we’re screaming for more.

Although some tough times happened and we were sad,
Animas closing, costs too high and true, we were mad.
But onward we go staying positive all the way,
There’s so much to do, and it all starts today.

Fighting for many and trying to be fair,
Coverage for one, coverage for all, even with Medicare.
Human trials, products, not just for our self,
Diabetes tattoos, even CGM for Elf on a Shelf.

Hurricanes were cruel where they would roam,
Far away sure, but also at home.
Many worked hard helping where they could,
So many doing and helping as they all should.

Many stepped up to help and grabbed at the ball,
Helping some was no good, it had to be all.
Helping others and giving so very deep,
Hours and days they all went and went without sleep.

When you look outside at the fresh fallen snow,
so many are doing and so many you don’t know,
Think of those who inspire and soon you’ll see,
Things will move forward and continue to be.

Life is not the greatest fighting this disease.
Continue to ask as you drop to your knees
That things will get better and rightfully quick,
Good things to come, and not all from St. Nick.

So listen carefully as you think what needs to be done,
If you have an idea, take it and run.
Don’t leave it to others; it’ll be just a few,
“Don’t do nothing” is what you really must do.

And if you think you’re done, tired, and feeling sort of sore,
Think of your loved one with diabetes, it’ll make you do more.
And if not for you, it will be for their sake,
We won’t stop at all till they get a break.

And then, in a twinkling, one day we’ll hear on the roof,
The prancing and pawing of each little hoof.
And the only thing needed in Santa’s bag for sure,
Is when diabetes is gone because of a cure.

So we will all continue to work, the ‘where’ is up to you,
But you have to make the decision on something you’ll do.
And one day we’ll scream and exclaim, “diabetes is gone from sight,”
The Happiest Christmas ever, and to all a good-night!
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Newly Diagnosed T1D in Your Family? A Letter FOR YOU!

writing letterDear Newly Diagnosed Family with T1D,

Welcome.  I’m sorry, but welcome.  If the diagnosis of diabetes has entered your household and you feel as if the world has completely come undone, I would like to share a little of a journey that is now just over 25 years.

Kaitlyn was 2 when diagnosed in 1992 (Rob would be diagnosed at age 13 in March 2009, but that is a different story for a different time).

We were (are), probably a lot like you.  Two parents working, no nannies, no really big house, no brand new cars, but we had much.  Always did.  We always and in all ways had an understanding of the smaller things.  We never begrudge those who had more than us, ‘good for them’ we always thought—-we had what we needed.  We never wanted to be more than where we were….we always wanted to be ‘rich in our lifestyle’…….that would be fine with us.

When Kaitlyn was diagnosed and there was nothing but an abyss in front of us, the one thing we knew was that we would discuss EVERYTHING for the first short while until we figured this out.  Nothing would be left for chance. Remember that.

At age 32, nothing but rosy days were expected.  We knew bumps would happen,  But on September 26th, 1992 our lives would change—-just like yours did.

What will we do?  What do we do?  What will happen?  A tidal wave of monstrous proportion just wash our little boat of life and we had no way of knowing it was coming.
Sound familiar?

Maybe you have been at this for a week……perhaps a month……perhaps a year…..maybe more.

After we took Kaitlyn home from the hospital we sat down and talked.  What do we do now?  In our discussion, we decided that Jill would be the one to stop working. Once we found some balance, perhaps she would get something part time, but there were no expectations.

I was never afraid of work.  To me it was always a matter of getting the job done, not so much as how it got done.  What I mean is; when we started on this journey, whether it was driving town cars to working at a deli to making pizza–whatever it took to bring in extra money, I would do it and would do it with the appreciation that we just might make it no matter what the new normal would become.

We made sure I always found some time with the kids alone.  Perhaps it was just taking them to McDonald’s for pancakes and let Jill sleep in before I left for work on Sundays…..but it was something.  What mattered was that the kids never knew that our lives were turned upside down—-I’m pretty sure, back then, we succeeded.

You go through a lot when all of a sudden a household of two salaries become one.    We decided from the get-go, this would be a one-day-at-a-time journey.  There was stress.  It impacted our lives.  It impacted our relationship with our families who probably never really fully understood why Jill and the kids showed up so much without me, because I was working.  But it was more important that the kids were with their cousins, had holidays, enjoyed life; than us worrying about what anyone thought.

We did what we had to do.

Sure it impacted our relationship also.  But we also agreed that whatever was happening was our business and no one else’s; we would get through it.

My point in this letter to you is that no matter what you are going through, it’s just important that you keep going.  That you stay in contact with your partner.  That you do everything in your power to make sure that your child with diabetes, and all of your children, have as normal as a life that you can provide for them.  Coloring Easter Eggs at a table together can be just as rewarding as taking all of your kids to an expensive Easter show together.  Look for things, you will find them.

Make do with what you have—-openly discuss things with each other—-do not care what anyone else thinks—-stay the course.  And always remember….guessing is wrong, EDUCATION is  the equalizer in diabetes.  Get some every chance you can.

Someone once said when a door closes a window opens—-well sometimes it’s up to you to pry that window open and not wait for it to open on its own.

You got this…….you can make it……..one day at a time.  Someday you will turn around and twenty-five years will have passed,  and you will be two just months away from walking your daughter up the aisle.

SIGH

Best of everything,
Tom
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Annual Tradition Continues—–Your Child and a Personal Santa Letter

santa-from-videoSANTA CLAUS CAN PEN A PERSONAL NOTE TO YOUR CHILD THIS CHRISTMAS
Jolly holiday 7th Annual fundraiser benefits Diabetes Research Institute Foundation
NOTE: Your child does not have to have diabetes to receive a letter from Santa (cute video—click picture)

Yes, Virginia (and Emma, and Maria, and Max, and Willie…), there is a Santa Claus. To prove it, Ol’ Saint Nick himself will send a personalized letter – complete with a North Pole stamp – to any child, in any part of the world for a minimum donation to the Diabetes Research Institute Foundation. This jolly holiday fundraiser is up and running and you can click this SANTA CLAUS to learn how to send a letter and make a donation. Your child receiving a personal letter from Santa is certain to light up faces brighter than the star on the tree. And of course if you do not know of anyone who would want a letter from Santa….you can make a donation to just help the DRI continue their collaborative efforts to end diabetes once and for all.

Click here to learn more about the Diabetes Research Institute Foundation.

The personalized letters, which can be requested by parents, grandparents, aunts, uncles or any other family member or friend, can include all sorts of information; like a reference to any toy, game, iPad or techno-gadget on the child’s wish list or even mention something about their pet. Santa can even encourage them and that he knows how well they have been trying to manage their diabetes as well. The fundraising campaign is open to all families everywhere, not just those affected by diabetes.

To get all of the letters out to children by Christmas day, a legion of Santa’s “elves” are standing by around the country, according to volunteer chairwoman Marie Jarcho.

“We had a tremendous response the last seven years. This is a wonderful and easy way to brighten a child’s Christmas and they loved it. The more information that parents or others supply, the more personal Santa’s letter will be,” she said. “…… it is my sincere hope that people will give what they can to help the Diabetes Research Institute find a cure.”

After the debut event, one mother wrote that her child was so thrilled with the personalized letter that she slept with it every night until Christmas. The DRI Foundation is hoping for an even greater response this year.

To send a child a letter from Santa Claus, JUST CLICK HERE or you can click the picture to see a really cute Santa Video about the personalized letters. The deadline for participation is midnight on December 11th in the USA and December 6th for any area outside the USA.

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