This is About Dying in the Middle of the Night….LETS TALK: We Need to Help Each Other.


blue candleThis is a discussion, a tough discussion, but hiding from it WILL NOT MAKE IT go away.

When I read a comment like; “….my child was diagnosed a year ago and I set my alarm to wake up 3-5 times to check, just to be sure……”; I am compelled to say something.  And there are other comments like this that I have read.  A dialogue should be had, and I seek input on this difficult subject from our community.

This may be tough to read but perhaps we can all help each other.

The rules:  There is no right or wrong—-anyone can say anything.  This is for all of us to learn.  What do you think, what do you feel, and what do you do?  Please ‘reply’ here and not on the FB page so all can read. 

To be very clear, if you feel you must wake up numerous times than the call is always yours.  Is it wrong or right has to be your decision.  But as the late (and great) Dr. Richard Rubin taught me; everything is a balance.

How long can ANYone wake up 5 times a night?  There is a balance and you should discuss with someone who can advise you. 

Can our children die in the middle of the night from a glycemic reaction?  Yes.

Is diabetes a disease that can cause this?  Yes.

The balance must be found to know how to monitor. to the best of our ability, a point where we feel comfortable that we do not to stand over their bed.

I, (me, my opinion only) always felt that giving my kids the keys to the car was one of the scariest times in my life.  I hate cars.  They kill.  I mean really kill.  It was an absolute fear.  I have picked up enough bodies from my firematic days, and seen the horrors enough time.  I fear them.  I hate them.

Got it?

I also know that getting your license is a rite of passage.  I needed to find a balance and i searched high and low for it. 

FOR US, diabetes through the night is the same thing.  It is a struggle, it is a balance.  It is finding when can one person wake up; when can another. 

I have said this a thousand times; we can and do not live in that fear.  To we recognize it?  Absolutely.   We (and I include my children in this) do not live in the fear of dying in the middle of the night.

I am speaking from conversations that I have had with them.  Are they afraid that it could happen?  You bet.  They respect the fact.

Let me say that again, they respect the fact.   That means that they do what they do; we do what we do; all to take te steps to make sure that it doesn’t happen.

But it is not a life of fear.  We do not ‘just think’ they will wake up if they are low.  We check. We take turns. 

I cannot tell you the ‘routine’ that you need to find.  I JUST CANNOT TELL YOU WHAT YOU CAN DO….but I can share with you to start to find the balance.  If you live by the fact that YOU MUST wake up 5 times a night; I will not tell you not to do that because you will not hear me—-I will tell you that you should start to discuss with others. 

Why do some people wake up once a night and seem okay about it?  Do people who lost a child wish they did things differently? 

Today’s article is to commence a dialogue; not to tell anyone what they are doing wrong.  I seek input from EVERYone so people know how to find that balance.

Good luck to all of us as we battle this ugly monster.  Please share what you feel.

I am a diabetes dad.

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Taking Off……She is on Her Way

jetOn her way. 

In a little while Kaitlyn boards a plane bound for the Children With Diabetes (CWD) Conference in Canada.  It’s snowing, and that is cause for a little anxiety.  It’s on a plane, and that always has its parent-self-inflicted anxiety level (funny thing is that when I fly, I have little).  She will be in a foreign country……I know it’s our closest friends in Canada, but still….it’s acroos our border.

What I have little worry about is her diabetes.  Perhaps it’s because she will be at CWD conference or perhaps it’s because I know how hard she works at it.  I know, I know, it can always derail; I get that; but I remember another time just like it.

When Kaitklyn was growing up it was a rite of passage to go to the deli a few blocks away.  When you could walk with your friends without being accompanied by an adult.  Kids usually bought chips or soda or something like that and early on Kaitlyn’s love for deli pickles worked in our favor very, very, well.  It was a funny observance that over the years, almost each participant left the junk food for Kaitlyn’s favorite also.  I remember the first time I watched them walk down the block thinking ‘this is a very good thing’ and knew she would return safely.

Today is such a day.   She is going to help others.  She is going to be with younger ones and at times she will share what she knows and she will also be ready to help.  CWD is a very important place for us as a family.  If you have not been to a conference, you should go and I will write more about that in the not-to-distant-future.

When was it that you realized your child, was ‘on their way’?  Please share.

Today, a jet will take-off and Kaitlyn will be on it.  ‘On her way’ in more ways than one.  She will go, help, and return safely……..a far cry from the deli but still, ‘a very good thing’.

I am a diabetes dad

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

Miss America????…..We Already Have Ours Thank You.

Nicole JohnsonDid you see the Miss America Pageant on Saturday night?  I’m not afraid to admit it, I did.   Not merely for the talent (which was fun), not for the gowns (really… could they not look gorgeous in gowns), not for their answers which the judges threw at them (I have to admit, the questions this year were pretty bold), and not even for the swim suits (I mean really……they’re competing for Miss America,do you expect any of them to look bad in a swimsuit?).   Not for any of these reasons, nope.

I watch to hear what the platforms are for each Miss America contestant.  According to the Miss America Website a platform for the contestants has been required since 1989.
“…..requires each contestant to choose an issue about which she cares deeply and that is of relevance to our country. Once chosen, Miss America and the state title holders use their stature to address community service organizations, business and civic leaders, the media and others about their platform issues…..”

I find these ‘platforms’ extremely interesting.  Can one woman actually change a world advocating something that is personal to her.  I admit I am a tad spoiled because as I watched this year’s show, I know one person did just that……changed the world.

How many times have we seen a celebrity who is somehow touched by diabetes?  Themselves perhaps, or a loved one who battles diabetes, and what is our first thought: how much of a difference they could make if they utilized their feelings into a ‘diabetes platform’ like is done with Miss America.  And to be truthful, many have.

But if you think about it, when it comes to this type of public awareness, or trying to draw attention to a cause, one person still stands alone in heroic efforts for a sustained long period of time.  And coincidentally, she is also a Miss America.

In our world of trying to enlist someone with notoriety to help us gain attention in the grand world stage about diabetes, Nicole Johnson’s (Miss America 1999) efforts are tireless to say the least.  She has understood the word ‘AND’ more than most who are in the limelight.  Many have pursued their platform as a ‘sidenote’, Ms. Johnson has made it her life’s passion.

Her list of accomplishments as spokesperson, advocate, and lecturer are clearly not of the thought process that it needs to be this organization OR that organization.  It is this organization AND that organization AND that organization.  She has traveled the world with a unified voice that diabetes ‘will just not do’ in this world.

You can read about all of her efforts at her website, Nicole

Her first hand of experience of living with diabetes captures your attention and yet, it is seeing her on one knee speaking to a little girl after placing that majestic crown upon her head that captures your heart.  Ms. Johnson is not afraid to tackle huge issues on Capitol Hill and in State Legislations around the United States, but she also knows how to calm the fears of what a little girl must feel in a world of such unknowns with diabetes.  A global approach to a personal life; and she does both better than anyone I’ve ever met.

She will travel anywhere to discuss diabetes, and will also go to a war zone to let soldiers know a homeland has not forgotten them.   She can take on big ideas but also help small hands to grasp a crown of jewels.  She has the same impact speaking to ten thousand as she does one-on-one. Clearly someone forgot to tell Ms. Johnson that her hectic schedule could calm down a little after her first year of Miss America.  In this human dynamo’s life, her hectic schedule only increased.

So this past weekend was the Miss America Contest in Las Vegas; the diabetes community has their own Miss America and has had her since 1999; and we thank her for all she has done…….and I have a feeling she has only just begun; and aren’t we lucky.

I am a diabetes dad

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When Does the Pain Stop?

The sun is shining today…….and you are here, and that is a very good thing.

Aside from the silliness of the world ending I have come to realize a little more thoughtfully that more and more life can be so very cruel.  Very.  We surely have learned that in the last two weeks haven’t we?

Earlier today I was going through some old magazines that we deliver to a local hospital and I came across a People Magazine and the front cover was full of everything from the shootings in Aurora.  And here we are again.  It hits the fan, and it hits it again…..and it probably will even again.

It leaves pain.  It leaves choices.  We have all had our share of pain in varying degrees, haven’t we?

My thought process veered into one child diagnosed….and there we were again, with another.  The pain was so incredibly large that I never thought we would get through it.  But we did.  Many people have been through really bad crap, much worse than what we have been through, and still they seem to move through it; or ‘move on’ as we say.

The pain is not any less and surely other people’s pain is much more than mine and I marvel at their fortitude to keep going.  They do it for a whole list of reasons……but they do it.  The pain is no less but they continue.

I asked a mom once, who lost her child, how she could ever move on?  Her answer astounded me and to this day I remember vividly her words.  “My daughter has been gone for over 20 years and not a day goes by that I do not think of her.  But I’m here; now.   And 100 years from now no one will care; life has to be lived through the eyes of the present, even as hard as it may ever be.  The choice will  be left to us.  It is the only choice or you will never live life again.”

This person told me this over 12 years ago and I never forgot it.   “Through the eyes of the present…….the choice is left to us”—I love it.

I marvel at how so many can just look life straight in the eyes and say; “bring it on.”  No less painful but they live for the moment, and in the moment.  They live for the now, and in the now.

So next time you are going through ‘something’ remember we can all learn something from that me thinks.

I am a diabetes dad.