Which is it? Do we want it both ways?
Is diabetes a disease which has an onslaught of possible complications and is a life sentence of constant management that at any given moment can have a disastrous impact on the person suffering with it?
Or
Is diabetes something that we constantly teach our children that they can ‘do anything’ with and that their only limitations would be their own imaginations. Diabetes should stop them from nothing. In fact it is a better lesson taught to teach our children that they have ‘a condition’ and not a disease.
Do we want impactful announcements screaming that there is a difference between T1 and T2 and to let the public know the very fears we live with every day, and so do people with diabetes?
Or
Do we want commercials with kids on swings and smiling faces and beautiful music and a message that people should get involved to help find a cure for these kids looking like they are having a ton of fun?
Where is the line drawn in the sand?
It seems lately there has been so much discussion on change needed but at the same time we let our voices be heard that we are ‘offended’ at almost every attempt to get a message out to the public.
Don’t get me wrong; I’m not saying you, I’m saying we. I’m as guilty as any parent at some of these thoughts and actions and quite frankly, I do not know what to do about it.
The Smile Train is quite clear on showing little children with disfigured faces saying we need to fix this and need your help; commercials of cancer show bald children suffering with their pains of their disease–rarely sugar-coated at all; and even a damaged dog sitting soaking wet in cage stating it is up to us to save it; are all just small examples of ‘getting the message out’.
But not T1 diabetes.
Is it our fault? We do not want our children to see the facts; we have something to say, quite loudly, if there is death mentioned and yet at the same time we wonder why the public-at-large does not know anything about T1 diabetes; we wonder why there are only “PINK” football helmets and “Pink” baseball bats. We wonder why people do not throw money at all of the various causes surrounding diabetes.
There needs to be a line drawn in the sand………THAT will NEVER happen until we are the ones to do it. Because no one knows like us; no one sees like us; no one fears like us. But if we don’t shine the light, no one will know. WE are the ONLY ONES who can flip that light switch.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.
15 replies on “At The End of the Day…..We Might Have No One to Blame……But Ourselves.”
Thank you. You make a very powerful and insightful point. My daughter is 8, and I have done everything I can to help her be as “normal” as her classmates and friends, and she is only beginning to understand just how serious her condition is. I don’t want her to be afraid of the things that keep me up at night, but at the same time I don’t want others to take her condition lightly. It truly is a difficult place to stand – you are absolutely right.
Great point!!!! While I realize that it’s important to empower my 12 year old, and I do, I think as parents, we sometimes hide the ramifications of this disease to protect our kids or ease our own mind. We need serious public service announcements in order to demonstrate to the public that we need their donations for research funding. The public needs to hear our kids stories, the real stories. If they think kids get diabetes, go on a pump and life is good – we will NEVER get optimal public donations.
well written as always…. guilty as charged, here… but totally agree with your post and ready to be a part of the movement for change. I want the best future for my child and all children with T1d. I hate the ugly possibilities of life with T1d but the public does need to know in order to be encouraged to help us move forward to better treatments and a cure. Thank you for the post.
Great post! I could not agree more. Its time we all told the world like it really is! Sure a T1 can do and be anything anyone else can do and be- there are lots of inspirational T1 role models out there proving that everyday; but pretending it is easy is doing nothing but a disservice to all the adults and children living with this awful disease. The world needs to know the amount of 24/7 work that goes into looking “normal” and they need to know the risks that all T1’s live with on a daily basis. It’s time to stop sugar-coating T1D!
Thank you for your wonderful way of expressing what is in my thoughts as a parent of a teenager with T1. Your comments are so true! It’s difficult for others to understand as our children make it look so easy! No one but our families see the “ugly” side of diabetes management. For outsiders it looks like a piece of cake to have diabetes.
Thank you!
When Ray was younger, we never let him know the implications of D. We never wanted him to know he could actually die from this.As time passed and he got older and more rebellious in his care, that changed. Once, after learning he lied about his numbers and testing, I took him to work to meet one of my patients. He never forgot that man who lost his leg below the knee. Point made. Now, as a 19 year old with 3-4 DKA’s under his belt, he is well aware of the complications and that death is a very real threat. He’s back on his pump and hoping for a lower A1c in October. I think we chose which side of the line we stand on based on his age and circumstances. Good subject, Tom!
We fool ourselves if we do not think that in this age of immediate electronic knowledge that our kids have not already opened themsleves up to finding out thing on their own. Something else to remember.
Thanks for the great insight here. Food for thought for sure. How can a commercial show a day in the life of our children (and us!)? Complications and fears aside, a regular D-day includes 200 (extra) decisions about their “condition” – decisions children shouldn’t have to make daily.
AGREE! I feel sometimes when I post about my life with my daughter and the issues we face that people don’t realize why I am doing it. I strive to put out there the “lows” we face with diabetes – as well as the “highs” we have in our lives. My daughter is awesome – she deals day in and day out with a disease that is complicated and is ever present but she deals with it. She’s a dancer, a soccer player, an A student and an advocate for diabetes. She takes her precious spare time to tell people that yes she can do all these things – with her parent’s help – but it is work. There are bad days – there are things that make her cry, there are things that bother her, there are sleepless nights and the ever present worry in her mind of complications and issues. We do not hide these from her or all those that know us because our goal from the moment of diagnosis was to make sure everyone knew what this was – because we had NO CLUE whatsoever. My daughter is 8 and the strongest person I know because she tells people how much she hates diabetes and what she has to do – but she can also do all those things others do – but she can only do them if she has control of her body which is HARD very HARD – and until people realize that her smiling face and active life is not as easy as others without diabetes she and I will continue to advocate, teach and tell the world of the “lows” and not sugar coat what is happening inside her – otherwise how will people really know what needs to be accomplished.
Thanks for your blog today – something I have wanted to say many times.
Until there is a cure,
Jennifer
Perhaps the opening of a dialogue will compel someone to move it forward. We’ll see.
Our experiences are just possibly the answer to this dilemma. We who wake up in a cold sweat, dazedly scrambling for the light, clumsily inserting strips into meters and lancets into lancet pens and applying alcohol pads onto limp fingers. We who try to behave nonchalantly in front of others while secretly hoping that the number showing will be closer to range than we anticipate. We who dial the phone for either a CDE, NP or Endocrinologist in the wee hours or even more terrifying, 911 while the rest of the world it seems sleeps peacefully. Yes our Type 1 Diabetic kids can do anything . . .that is, until they can’t anymore.
Can you live without a heart? For a while, with an artificial heart, maybe. But without a new heart, eventually the answer becomes, No. Can you live without lungs? For a while, with a heart and lung machine, maybe. But eventually without new lungs, the body will cease getting the oxygen it needs to survive. Can you live without a pancreas? For a while with insulin from outside the body. But the body needs regulated insulin for each carbohydrate consumed that corrects itself dependent upon multiple factors. What the body does naturally in a non-Type 1 Diabetic is very difficult to reproduce.
Type 1 Diabetics have severely decreased amounts of insulin in their body when first diagnosed and soon after, have no production of insulin at all. You cannot live without insulin.
If you have a heart that works, help Type 1 Diabetics. To learn more or to donate, contact … JDRF, DRI, etc. etc.
Could this be the basis of a commercial script? Maybe 🙂 But it can’t do any good until it gets into the right hands to produce it. Your turn Tom. What do you think?
Now we have to figure a way to do all of that in 30 or 60 seconds…..not easy. Always GREAT to hear from you. Thanks
I’d happily work on this with you anytime!
Well said Diabetes Dad! We have been living with T1d for 3 years and it’s very hard to balance telling people who will be in charge of our son’s care all the ‘need to knows’ without making it so scary –they won’t want him around–It IS scary–and it amazes me every time my son gets out of bed and embraces each day.
Our daughter was diagnosed Dec. 18th,2007 after just turning 12. Ever since that time, we have not only endured dealing with type 1 diabetes and all it entails, but also complete ignorance wherever we have turned.(This even includes family and church family we have known for over 22yrs). In Dec. a very good friend of ours who is in his 40’s and was diagnosed at age 4 underwent a double transplant(kidneys and pancreas) after years on diaylsis. When his was younger a family member of his told his mother that if they feed him the water(“juice”) that came in the can with string beans that he would be fine and no longer have type 1. Seriously-one might think. Honest. After my husband was diagnosed with type 2 diabetes last Mother’s Day weekend and in the hospital for a few days, things REally started to hit me. He is not obese or even overweight(maybe only a couple of lbs) there is no family history of either 1 or 2. And he is a very active person(not a couch potato which is often “suggested”). And on top of that we have always eaten healthy and even healthier since my daughters dx. Ssoo……? btw – my husband also has a friend who is currently on diaylsis and had a leg amputated in July. Not trying to scare or depress anyone. While I am so glad that there are snow boarders and race car drivers and celebrities which have given small “airtime” to this disease. I have seen up close and personal the devastating affects of type 1. I feel it should be called Just TYPE 1. The general public is COMPletely unaware of the seriousness of this disease and they lump both together. (And even type 2 -there is Such a sterotype- a stigma- this NEEDS TO CHANGE) I know what we have been through. When my daughter was first dx -her teachers were gossiping and saying she was bulemic(she was just 12 in a private christian school and I’m not sure she even knew what it was at the time). Then this past summer her coach(who is not trained for emergencies-we have FOUGHT with our principle who at our last meeting told me I just wanted sympathy) called me to tell me about a book he had heard about (a type 2 book) that if we fed her better and she was active she would not longer have to be on insulin. Seriously. She is probably the most physically fit person I know-she plays Volleyball,BBall, and track. After my husbands dxs I hit rock bottom. We did’nt even tell his family due to the judgements we received with our daughter. Going back to the string bean juice. This was 40yrs ago. Why in 40yrs is the general public not aware of the seriousness of this disease. Of the 3am bs tests and the nights with DKA-forcing your child to drink to flush ketones all the while knowing that by making her drink she will throw it all back up and you will have to start all over again with a new bottle of water. All at 4am while she cries because she is weak from throwing up 10 times and tired and just wants to sleep-NOT drink more water to throw up. WHY. BECAUSE—in “our” over zealousness to tell people that people with type 1 are normal(seriously-ok) and can be anything and do anything “we” hide the Truth from them. Type 1 Diabetes SUCKS!!!!! It is sneaky….. It does not play fair….It is EXHAUSting…..It does have serious complications(EVen though you do everything you are supposed to do). I think we are doing ourselves AND our children and loved ones with Type 1 Diabetes an extreme disservice by not COMPletely educating the general public in a massive way. The best care and support for a Type 1 diabetic and their families is complete understanding. I pray this happens soon. I do not want my daughter(who will graduate this year) to go through this hurtfullness and abandonment the rest of her life. Diabetes is truly hard enough. We have lost “friends” that we knew(thought we knew) for over 22yrs. Ridiculous. Hurtful. I have been the one to do everything for my daughter and what triggered all this was not only the mounting frustration but the utter lack of help(due to ignorance) he loves her but has never really “gotten it”. Last year when he was diagnosed the nurse came in to recheck his blood sugar and said ” wow, that’s alot lower huh-good” to which he said(and this was 41/2yrs AFTER our daughters dx mind you) “what is a normal blood sugar”. I am now on the warpath- Thank you celebrites for your you-can-do-it. We definitely have times we need to hear that. But for crying out loud- would SOMEONE PLEASE also get the truth out there. Thank you.