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Dead from Diabetes

***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.

31 replies on “Dead from Diabetes”

Thanks for some truly inspiring and thoughtful words about the most difficult subject. The focus on why it happened to others can only intensive our fears rather then alleviate them. Instead we should making sure that each of us is doing everything we can to live life rather then live for death.

Thank you Tom.

Kimball

Thanks Kimball for sharing your views…always welcome.

Excellent post. Well said. My primary concern when I see these stories is how new parents take it. Those of us who have been around awhile are (mostly) over the worst of the fear. We’ve moved past to the part where we’ve learned all we can, we know when our child is most vulnerable, and how to handle the fluctuations that come with diabetes. But new parents who read about deaths of children from diabetes are traumatized by the possibility – I know I was in the beginning. The blue candles practically paralyzed me with fear in the beginning because I wasn’t at all sure I could keep that from happening to my daughter. I still can’t ever be 100% sure, none of us really can, but we can’t live in fear either. I explained it to my daughter this way… Many tragic auto accidents involve teenagers. Even knowing this, I let her brother get his drivers license when he came of age. But before I did, I ensured he would always wear a seatbelt. I put restrictions on driving at certain times. I checked in with him regularly. I taught him the basics, and we also talked about how to handle more difficult driving situations. But the point is, he drove. All I could really do was prepare him to the best of my ability. I think diabetes is a lot like that. It can be dangerous, but knowledge helps to mitigates the danger to some extent. Our kids need to learn to care for themselves, but they also need a chance to just live.

Thank you for your words Michelle about keeping the eye out for those ‘dangers’. Thanks for writing.

I wish more had been said, written, and discussed on this topic before our son Brett passed away in 2011. He was Type 1 for ten years and in great health. We checked on him during the night and he was gone in the morning. You can think you are doing everything and still not do enough. But if the public, parents, and medical community would be more open and up front about this issue, maybe it would not happen as much. I agree we should not live in controlling fear, and I am glad Brett lived everyday to the fullest, but we also should not let fear keep us quiet.

Wow Charles, thank you for your comment. My heartfelt condolences on your loss and most grateful thanks for sharing what truly must have been painful to address. Thank you!

Tom, thanks so much for a wonderful discussion!! I was diagnosed in 1945, when I was 6. There were terrible hypos and some seizures back then, and I would lose consciousness. I feel so fortunate that my mom always managed to bring me out of those hypos. There have been no episodes like that since 2007. My wife, like my mother, has been my anchor in keeping me going, safe and healthy, after 66 years of diabetes.

I wish you and your family smooth sailing in the years ahead. May your children live long and healthy lives.

Richard

Thanks Richard for your words–nothing can beat experience and you surely are a treasure chest full of experience. Thanks again.

I felt very fearful of my diabetes growing up with it. I was diagnosed at 11 and didn’t have very good management for a decade. Then I learned how to really manage my diabetes (for myself-not that what I did would work for others) and the fear began to subside. Now I rarely feel any fear about having diabetes. I focus on using my energy on doing what I can to keep myself healthy. I focus on feeling and thinking and believing that I’m healthy and am going to be alright. I feel like dwelling on fear will only leave gaps in my judgement and spirit and give me a higher probability of something bad happening with my diabetes management. So, while yes, it is definitely scary, and I am grateful each day for having two non diabetic children, I feel very strongly, through personal experience, that a focus on respecting the diabetes, as you so aptly put it, is our best bet.

Sysy—
There is nothing more powerful than a voice of experience—–thank you for chiming in, it is greatly appreciated.

Love…….LOVE……the idea of having an emergency plan thought out in advance for those ‘just in case times’—THANK YOU so much for this crucial addition. Also: take those expired Glucagon Emergency Kits and do a ‘dry run’ in the middle of the night where your spouse/partner wakes you and your job is to go and mix the glucagon. Next expired kit, switch roles. Thank you for chiming in.

Great Post, Tom. I think it is so important to put all this sharing in perspective and help folks not lose the ability to let their kids live their lives. Also, we must both have Morgan Freedman Characters talking in our heads — see this: http://despitediabetes.com/2011/12/06/another-d-candle-day-how-is-a-mom-to-let-her-child-with-diabetes-live-her-life/

Always an honor to have you comment Moira—yours was a fabulous article which I read when you posted it. Why you are the expert on ‘letting go’ and why she thrives so. We should think about appearing together somewhere and speaking…..say Orlando in July 2013…..date? 😉

Thanks, Tom, for being a voice of reassurance and reason. It’s so hard to see the blue candles. You want to support the DOC but you also don’t want to know every single time something goes awfully wrong. It’s so scary to even think about that sometimes it’s easier to just do your best, live your life, and NOT KNOW.

I’m a diabetes mom of a teenaged girl, diagnosed in Nov 2010, so I still feel like a newbie to all of this. I have to say I don’t like seeing the blue candles. I’m not sure if they serve the purpose of memorializing the child lost?? or they just slap us (the DOC) in the face with the worst possible outcome. We know it’s a possibility, but we all have to proceed as though it’s the farthest thing from our minds. I am a bereaved parent. My first child, my son, died at 8 months old following heart surgery. My second child, my daughter, was diagnosed with diabetes in that same ICU where he died. Yeah, I get it. At the first JDRF support meeting (and last) I attended, another father said, “Our children could die at any moment.” I told him I couldn’t go forward with that thought foremost in my mind. I actually knew that after my son died; I couldn’t have another child and scare her by living as if death was chasing us. So here we are. I have looked in the mirror & wondered if I have made the best choices, done all I could have. The sad answer is, you can do everything in your power and it may not be enough. But it’s all we’ve got. The people who need to know that diabetes can kill don’t see those candles or know what they mean. As a community, I wish we had another way to recognize a wonderful life. Maybe everyone could donate to diabetes research in memory.

There are so many lives worth seeing; worth watching. I think people who live with diabetes, at any age, are incredible heroes. Everything they do—they do with an asterik in their lives. You have suffered incredibly and to see you moving forward is amazing. Yes, we know what CAN happen but we also know how great our kids are dealing with diabetes. As they say at CWD—kids with diabetes…..are still kids. It’s not about what we cannot do, it’s about what we can do and do everyday. Keep up the good fight and find some place positive for your energy—all of our kids need it. Thanks for writing Sarah.

I thank you for the article you wrote. I have watched the shawshank redemption movie many times and heard him say we can get busy living or get busy dying. I never thought of it in that term before. My son Drew was diagnosed just before his 3rd birthday and he turned 12 this year. My father was diagnosed while he was in the navy at age 20 and he will turn 81 this year. Looking at it from watching my dad live with Diabetes we try and give drew all the tools he can have ( continuous glucose monitor and insulin pump) to live and enjoy being a kid.

Thanks Kenny—the things you learned from watching your dad must have been crucial in dealing with your son. Thank you for sharing your story.

As the mom of a teenage daugther I cringe at the fact that something terrible could happen to her. She’s my only child. I work hard to make her understand that she has to keep herself educated on diabetes and well controlled. This is so hard for teenagers to understand, for they are in that stage of their lives when they feel undefeatable. This is certainly not easy to read

….and very hard to write Melissa. When my youngest was diagnosed (second child with T1) he was a teenager. We coudl do our best and hold our breath (as I say). I have learned that it i sabout education—leaving info and letting them do tehir homework. At the end of the day THEY need to take care of it. Thanks for writing Melissa.

This was very difficult for me to read. I cannot imagine writing it. My oldest child died at the age of nine 32 years ago, of heart failure a result of marfan syndrome. My grief has never ended. I have, however, moved on to live. I have three other sons that needed and wanted me to be Mom again. My youngest grandchild, Emma, was diagnosed in June of 2011 at the age of
2 1/2. I read, searched, watched, asked questions, learned by doing and within a month of her diagnosis, she was again spending the night with Noona and Pap when the other three came for the weekend. I wish I could say I never feel fearful. I double check almost everything I do. Depending on previous numbers, I may check her at one hour instead of the normal 3 hour check. I double check her corrections and her carb calculation. If we are outside playing, I am always checking her. She is involved, even at a young age and learning about her disease. I pray every single day for a cure. I pray for all of you. Hugs to you all.

I have said it a thousand times—–THE MOST forgotten groups—-grandparents. You are a hero Bettyann….many would have, and do, walk away and surely they care, but they really do not do anything. You have taken an active role and how fortunate is your grandchild—this world needs more Noonas and Paps—-thank you so much for sharing and am truly sorry of your pain that will never leave. You are an incredible ‘Noona’.

Tom, I love reading your stories – u talk so much sense. The blue candles scare the life out of me – I check my daughter everynight but fear that the night that I sleep thru the alarm something will happen to her. Can’t wait to see you at FFL Windsor in October. I want to educate my daugjter about her diabetes so that she is in control – I don’t want to ever feel that I have failed her by not learning enough about type 1 diabetes myself.

Thanks for writing Kathryn. I look forward to being at the UK and meeting with so many new friends. Keep moving forward—the real failure is in not just doing nothing which you seem to be avoiding. Good luck as you, and all of us, continue on this pathway…….together.

I’ve been a T1D for 49 yrs. I’ve had a few close calls with hypoglycemia and yes, it was and is very scary, but I learned from each experience. Diabetes is a daily challenge and no matter how long you have it things change and you have to change with them. I don’t think about what can happen. I try to take each day as it comes. Anyone who lives with a chronic illness, no matter which one, understands the consequences, but fear doesn’t have to be one of them. We can walk outside and get hit by a car, so why worry. We just do the best we can.
Being a parent and grandparent, I have new respect for what my parents went though when my sister became a T1 52 yrs ago and then myself. Fear was part of their life and stress was evident. But today my sister and I are still here and supporting each other as we meet the challenges of growing older with diabetes. Life Isn’t easy, but then again, life isn’t easy for anyone, but we all muddle along and enjoy the best of it.

Thanks for writing Ilene. You and your sister sound like great people——ahhhhh if we all could go back and understand what mom and dad went through……eh?

Thank you for saying what I think all the time.. my boy is 18 now and we are coming up to our two year anniversary. 🙁 My friends all seem to think that this is not a big deal and because my son is older he should be able to handle this on his own. They don’t seem to understand and I don’t make it my job to tell them .. I do ask them when they are having an problem with their children,, ” do you go into your child room every morning and pray that he is alive ” because I do.. that is my reality.. they don’t know what to say and somehow the gravity of their situation goes away.. I have done my job

Thank you DiabetesDAD for your contribution and support. Our daughter 10 year old daughter was diagnosed on Sept 6, 2011. It was the worse day of my life. My life was turned upside down and hasn’t been the same since. I was terrified and very angry. I couldn’t believed why nor what had happened to my beautiful little, blonde hair, blue eyed, girl. I’m sure we all shared similar feelings. The postings here are hard to ready sometimes. However, I don’t think about the dying part and that bugs me a little. I guess I know my daughter can die at any moment. We still get up every night at 2 am and check her levels. We check her at least 8 or 9 times a day. We’ve been told that is not necessary, but we think so. It’s my job to protect my daughter. She is my child and I have to do everything I can to make sure she is safe and healthy. I know its not the case, but I feel like sometimes a failed my fatherly duties when she was diagnosed. I question whether it was vaccines, her environment, etc. We just don’t know. However, I feel lucky because I don’t think about her dying. We continue to educate ourselves. We read on the internet about new trials and see what’s going on that may find a cure for diabetes. We teach our daughter how to do everything on her own. She is very fragile and has already been hospitalized three times including her original diagnosis. I take the view that she is still my baby girl, she just needs to do a little more than a person on a diet counting their carb intake. I know it’s more serious than that, but I don’t want to live in fear anymore than I have to. I have to say that I haven’t thought about that really at all. I’ve been more concerned over the fact that my baby has extra work to do the rest of her life. I am very analytical and a perfectionist and I do take her diabetes very seriously. I hope everyone that harbors that fear will overcome it. I, like everyone else, never want to bury one of my children. My heart goes out to everyone and I hope that we can all find tranquility while on this voyage we are on. It may not be easy and it may be different than most people, but it doesn’t mean it won’t be just as good nor better than everyone else… My heart goes out to those that have lost their child and I thank you for sharing so the rest of us can learn.