The Time To be Taught IS NOT when a Blue Candle is Lit

I thought long and hard before I starting writing this column.  I decided to write it for a few reasons.  The first and foremost was/is that I am, or was, as guilty of the subject matter as anybody.  I have written quite a few NEWSBREAKS dealing with the death of a child in the diabetes community. 

I have been at this ‘diabetes thing’ for a very long time. I always figured that with two kids battling this crazy disease, perhaps, I might share a thing or two that might help one or two people from time to time.  I also have stated that I am the king at making mistakes, and I share those as well.

A while ago I took a long hard look at what benefit would it be, for me, to continue to share the news about the death of someone in the diabetes community.  “If there was not something to be learned specifically by it; what would be the purpose?”……was my thought process.   So I stopped.

I would like to share a few things, if I may, and state that this is what I feel and/or learned. I share this in the spirit of just that; what I have learned.  Agree or not; is surely your choice and as always I welcome anyone to comment on HOW YOU feel as well.  Know that this was not an easy ‘write’ for me.  I understand the sensitive nature, I welcome the dialogue.

My choice to be as active as I am in the diabetes community has taught a few things about going through the loss of someone with diabetes.  Those I have known, or know, who lost a child is high enough, unfortunately, to have taught me a few things.  Knowing even one person is too high; unfortunately the number I have known is in the double digits.  But even with that, I still could never understand; as I have never been personally faced with that disaster.  But those that have, shared with me a few things that I will share with you.

Some things that you might want to know. A few years ago, an incredible mom who lost her child, started a community for any parent who was going through the same thing and needed support.   Many parents are in this group and I can 100% assure you that they will reach out to the family at an appropriate time to invite them to be part of this incredibly helpful group. 

Can our children die from this disease?  You bet they can.  What can we do about it?  That answer has never changed one iota with each newly diagnosed person.  Knowledge.  Know as much as you can about the management of your child.  Learn.  Learn about the tools, the educational opportunities, and all facets of this disease.  As far as ‘reporting’ the loss of a child: know that in most cases, almost all; if you are not hearing information from the parents who lost the child themselves, know you are getting it third, fourth, and even fifth hand. 

Remember that point.  As you read, the facts will not all be known (and in some cases, be incorrect); and in all honesty, in all my years I have never learned one thing being intimately involved with a family who lost a child that I did not already know…..not one; except the first time it happened to someone I knew.  My lesson years ago and with the ‘instantaneousness’ of the internet, which we did not have back when, is a lesson you already know.

My biggest lesson was years ago, the first time a child died.  A young lady I knew very, very well.  The shock and the lesson learned, which was shortly after Kaitlyn was diagnosed, was just this one simple unfortunate fact: that one can die from diabetes.  It was the first time it actually became real for me.  It broke my heart.  I learned that I needed to know more. Everything.  For us it was not about how she died but, rather, how to make sure Kaitlyn did not.  And the biggest lesson I learned over the next few years is that knowledge became the equalizer in understanding this thing called diabetes.

Make no mistake, Kaitlyn was two when diagnosed.  Guessing or listening to others WAS NOT GOOD ENOUGH in our house; we needed to KNOW.  Knowledge on everything pertaining to this disease was monumental and that was the goal we strived to achieve.  The online community is a fabulous resource but one answer to one question is not good enough, don’t settle for one opinion, one answer, one thought.  Keep seeking until you know, and not just until you hear what you want to hear.

And we still are not there yet, because things change almost daily.  Over the years, as I have lectured, I have shared this thought.  People who go the furthest, while living with diabetes, are those who find out what they need to know and who live life with every ounce of gusto they can.  They share that thirst for knowledge.  Part of that knowledge is the understanding that something can go wrong at some time, or another; and should that happen to us, I need to be able to look in the mirror and know that WE DID EVERYTHING we could for our children.  May we never be tested.

Another thing to know is that some parents have shared with me that they DID NOT understand/appreciate the ‘grilling’ of those who did not know them or understand anything about them or what they were going through.  One person shared that it was enough to have to deal with ‘my own loss, a loss that no one could understand’ and also have to deal with people who wanted to know details.  To what end?

The fact that one can ask the question how anyone can die from this disease is enough for one to make sure that any scenario played in their head is avoided to the best of their ability.   If you think about it, the same scenario could be played out when our kids first learn to drive.

There is a deep parallel with the two scenarios.  You can do everything possible.  You can learn, teach, and share as much knowledge as you can about driving a car; just as you can about living with diabetes.  At some point, something you believe has NOTHING to do with you and/or your child’s control of the situation can occur, and catastrophe becomes the result.

Blue candles, condolences, surely that is up to each one to say or do as they feel necessary.  But knowing each and every detail will do little to teach us something that in all honesty; we should already know. 

We do not and cannot live our lives waiting for catastrophe.  But people do.  We cannot and should not ask for all of the details about what happens when a child is lost in a car accident, and the same applies for a child lost to diabetes.  In the long run; what would one really learn that they did not know before?…or should know.   We need to take that knowledge and live this wonderful life with everything we can as we only get one shot to do it on this earth….and quite frankly, in our home, we choose to live.

And truthfully, if one thinks that there ‘is a lesson’ to be learned; I strongly suggest that you take advantage of all the teachable tools that are out there right now.  Many had no choice in what happened in their lives and their sorrow is immeasurable.  Take every step you can now, and pray to whomever you believe in regarding the rest.

I am a diabetes dad.

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