***Editor’s note: This is not an easy read, but it is about an extremely crucial topic. Know that it was also not easy to write.
Blue Candles. Those of us in the Diabetes Online Community know very well what that means; another child lost in the war against diabetes. It’s horrendous. It’s painful. Many times when I speak with parents the conversation is something like this:
What are you afraid of?
My child going low in the middle of the night.
That is not what you’re afraid of….what?
That they will get very sick.
That is not what you’re afraid of….what?
That they will fall into a coma and need to be rushed to the hospital.
That is a fear but not what you’re afraid of….what?
That they will die.
First of all, say it. Our children could die from diabetes….it has happened in the past and it will happen in the future. Hypoglycemia, dead-in-bed syndrome, and even hyperglycemia could all take our kids. Say it, know it. To know how to handle something you have to know what it is you fear. Give it a name.
But this is not an article about our children dying it is about accepting the fact and moving on. This month it will be 20 years that we have been at this and it never fails that when the blue candles start coming out, the questions come right along with the candles.
It’s almost as if by knowing the intimate details of a family’s loss will ‘help’ you to ‘make sure’ it does not and cannot happen to you. It just does not work that way. Even if you knew every detail when someone loses a child, or a PWD loses the war with diabetes; it would not comfort you one iota. There is nothing to ‘learn’ that you do not already know; should know; and asking about it during someone else’s tragedy is not the time ‘for class to be in session’.
Here is what I learned from the people who live with diabetes. Even as a parent my fears for my children pale in comparison to those who live with the disease. If our fears are sky-high, the fears of those who live with diabetes are astronomical. Thus far, I’m sure, this writing doesn’t have you feeling comfortable about any of this just yet, and it might not—-but its reality. Many of the people I know who live with diabetes do not live in fear, but respect their diabetes enough to fully respect their diabetes.
When I see the blue candles come out it serves me once again to go over ‘my’ check list that I’m doing everything I can for Kaitlyn and for Rob. Although now, that they are older, my role has changed since they were younger. But I still ask myself if we are supplying everything we can for them to ‘LIVE’ with diabetes? Are we doing something every day to help (I leave your definition of ‘help’ to you)?
Perhaps mine are just words because I have never lived through one of my kids’ dying. But I certainly have been asked by many people and my answer has always been this; “Should this ever happen in my house, if I cannot look in the mirror and KNOW that I did everything possible to help them, I will not be able to live with myself.” Now hear me; the pain would be beyond catastrophic heart-break of which I have never seen before in my life and never want to feel. There would be time enough for maybes, ifs, and might-have-beens should they die, it’s my job to make sure I am doing everything in the NOW………are you?
I do not hang my hat on what may have or may not have transpired at the time of death for someone else for me to learn something and neither should you. Sometimes that can border on intrusion of a family’s tragedy. I have read posts when this happens and I truly understand that most of it comes from the fears we all have of losing our kids. But learn what you can now. Help the way you need to help now. I try to learn ‘now’ to see to it that it does not happen. And should it, I have learned from other wonderful people who despite this monumental heart-ache they have found a way to move on; two of the most incredible people who come to mind are Marc Goodman (click to see Marc’s video) and Michelle Page Alswager. Their tragedy, of which the pain I have never known, somehow did not stop them. Both have changed the course of diabetes in this world. We all owe them gratitude because in their pain; they taught others and continue to, somehow, do so to this day.
Learn. Watch those who live with diabetes every day. Key word ‘live’. Kerri Sparling and Manny Hernandez are not only two of the most inspiring people I know, they are also two of the most straight-from-the-hip-call-them-the-way-they-see-them type people I know living with T1 diabetes, surely, 24/7/365. Read what these two people LIVING with diabetes feel about this and instill this in your kids as well.
Kerri wrote in her ‘Six Until Me’ blog:
“…..And we can’t exist in fear. Even though it can be so scary at times. We owe it to ourselves to be as educated about diabetes as we can, as empowered as patients as we’re able to be, and as healthy as we can manage. We lean on one another for support in these difficult times, and we look forward to today for inspiration.”
Manny Hernandez stated, “When I feel afraid, I remind myself of the wise words of my friend Dr. Bill Polonsky, who always says ‘Well-controlled diabetes is the leading cause of nothing,’ and the reality that tomorrow will be another day to continue working on controlling my diabetes.”
In the movie Shawshank Redemption there is a line that states we can get busy living or get busy dying. We can live in fear, or you can live in life. Do everything you can for knowledge. DO not live every moment FOR your kids but give them every tool you can to strengthen them. It’s their diabetes give it back to them. They’re never too young to learn; teach. You’re never too old (or are at this for so long) to learn and know that management tools change practically every day, stay updated. The power of knowledge is the power over fear.
I wish I could promise you that tragedy or heartache will not hit your home. I know that the fears of the world, accidents, and now diabetes are all very real fears. A magic wand and all the wishing in the world will not make those fears vanish over night. But I can tell you, from someone with a ton of years being at this, that the best way to resolve fear is knowledge. Learn and read from experts. Learn at a time when your mind is ready to learn and not in panic or stress mode.
At least, after all of this, you will know more. You will understand more. No one lives life to the fullest that live in fear. Diabetes tries to take so much, don’t let it. Control it, or it will surely control you, after that; it’s whoever/whatever you believe in to keep your child safe and to keep you safe. I’m a Diabetesdad.