Where Are These People…….Seriously????????????

Where are youI have no right to feel this way.  I want to get that right out in the open at the onset.  I mean what everyone does, they do because they can, do, or choose to do……or do they?

I saw a name today, I do not want to mention where or how but they were speaking of their child with diabetes; and perhaps they have done a lot; but I have never seen their name attached to anything significant and man-oh-man have they the power to make a difference.  The question needs to be asked…..are you doing enough?

Just to be clear, I am not speaking of the PWDS, moms and dads and those who do what they can do and they do a lot.  I am speaking to those people who KNOW THEY HAVE THE POWER AND INFLUENCE to make a difference; they know when they speak people will listen.  And what???????……….zippo.

I watch as so many orchestrate, organize, and just do things to try to make a difference.  They create petitions for awareness, they try to raise an additional dollar for a cure, a camp, or to help those in need.  Yet, so many have the power of the media that if they CHOOSE to, they could shine a very bright light on a specific side of diabetes.

Now I am not speaking of showing up at an event and giving a check because one can; I am reminding them of people who give because they HAVE TO.  I am reminding THEM that there are those who give of their time and their money because diabetes will just not do in their lives. These people give until it hurts.

If you have a child with diabetes are you giving until it hurts? 

Are you giving what you can because it’s easy?

I’m sorry when I read about Halle Berry curing her diabetes, Paula Dean doing or not doing what she should, and I am even more sorry that when they GET IT WRONG they are catapulted to the front pages across the land.

And still, discussions are held in so many foundation-circles in an attempt to “reach that” person who has a diabetes connection to see if they can help.  We should not HAVE TO REACH out to them, they should be reaching out to us (the collective us who can but them to good work).

(This added by the writer after a post from a reader:  I am sensitive to the fact that some people, being in the limelight, may have their children’s privacy compromised—-no one wants this either; mine is but a question to those who have the power to make a difference; are you?  One can still be involved without media attention and I know this as a fact because I know some are doing so.   My question is just that—-a question to ask are you doing enough?) 

There are those that get involved and do much…..obviously I am not referring to them.  I don’t care if a child was diagnosed 30 years ago or two weeks ago.  ALL OF US must give until it hurts.  ALL OF US MUST DO UNTIL IT HURTS.  Celebrity, movie producer, athlete, movie star, moms, dads, people with diabetes……if we do not DO IT (whatever that defines) NO ONE WILL DO IT FOR US.

If you are not involved…….guess what…… are not involved.

I heard a great line a few weeks ago; a friend of mine was talking to a friend who was stating how much they have done, or did do, and were not as active in doing so much anymore.  My friend asked one simple question: “How’s that going for you?”

There is still no cure and there are still places that do great work that are struggling badly.  THE. JOB. IS. NOT. DONE. YET.

Need any ideas……you just let me know.  You are the light bulb…..I will help you shine like you never have before…..just drop me a line.

Our kids still live with diabetes every day.  Get involved until it hurts……our kids deserve nothing less. 

I am a diabetes dad.

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

20 replies on “Where Are These People…….Seriously????????????”

The parents need to be congratulated not condemned. If I was a famous person and told you that I had a youngster with Diabetes. How much privacy is that young person going to get now? Just because they have notoriety does not mean they want their kids to have to worry about fame also.

Perhaps I was not clear enough and I will surely edit the piece to reflect that things can be done without media attention. you bring up a point that is a good one; but as I stated, if one is doing all they can, they ARE NOT THE ONES to whom I am speaking.

Dear diabetes Dad: I am a diabetes Grandma! Just because you have 2 children with T1D does not make you special. I also have 2 grandchildren with T1D. It does not make me special. My grandchildren and your children are the special people. They are strong, they deal with this 24/7. I get mad sometimes too. People will always disappoint us. They did before our kids were diabetic and they still do. You just do your best and I’ll just do my best – the rest of the world is on their own!!

That is the question I am asking: For each of us to ask ourselves; are we doing enough? I cannot agree more that the special ones are those who battle it….but the rope is pulled much faster when many are on the line. This is my point.

I’m not sure Tom if I interpreted your post correctly. So we, parents, are not doing enough? Sleepless nights, compromises, sacrifices, full time jobs while juggling demands of diabetes and seeing our kids suffering still not doing enough? Is financial support for various companies enough? How much to give? All the savings? The cure is not here yet and God knows when it is going to be available, if it ever be. I pray to God every day for a cure. Do you think companies like Sanofi, Eli Lilly, BD will ever allow for a cure? How do you fight that monster?
I will give if I only knew how. For now, I’m giving my life away for my child to have as normal life as it can be having diabetes and to have as normal life as possible for me as a parent.

Have you read my posts —have I EVER taken the side that parents (as an entire group) are not doing enough?
Totally read it wrong Anna….it IS NOT THE PARENTS and those who do everything they can; whatever they can; I only asked the question to ask yourself: are we doing enough? Whatever enough is. I do not judge the answer, I only ask the question. That said, many have reached out that they asked themselves that question and they REALIZED THEY CAN do more……so if it applies—apply; if it does not—carry on. Mine is never to judge what is enough or what to do. It is enough to balance what needs balancing.

Then you did not read the post carefully enough….if you are doing all that you can, it does not apply to you and it was never my intent to make you feel any differently.

Not needed! I am so sorry you were having a ‘bad day’. I would be worried if someone said they ‘didn’t have a day’ like that. We are all in this together….if my words begin a dialogue—-with whomever—-I have succeeded for the day. Thank you for writing and I really appreciated your candor—-I really do. Thank YOU.

Tom, You pose a very good question to those of us who feel that we could do more, although struggle with how we could achieve this. My son Stephen was diagnosed with T1D when he was sixteen. We nearly lost him because of the misdiagnosis from his doctor. I never knew the symptoms for diabetes, and apparently a lot of people out there don’t. Especially in a teenager, a teenage boy at that! I would like to honestly say, that I need to do more. I understood your post, and thank you for writing something that you strongly believe in. What else could I do? I would like to do more…..

Tom, I get what you’re saying. Personally, I ask myself that question all of the time. My son was diagnosed 7 months ago and I want to spread the word about what Type 1 Diabetes is. Education is powerful! My particular goal is to reach the Spanish speaking people in my community (and elsewhere) who are so misinformed. As a Hispanic, I can tell you that more awareness needs to be raised! Perhaps you can help me do that?

Where do you live Wanda? Start there. What awareness is there….I know I would like to know more about T1 and the ‘hispanic’ community. What can we do to increase involvement and out reach—how do we break down the barriers—this is not a ‘white disease’…..diabetes does not care. African American and ‘Hispanic’ individuals should be seen more across the board (this is a HUGE pet peeve of mine and those who know me know how I feel about this)…and yet we do not; why not? Help us understand what needs to get done.

How is that for starters?

I live in Rochester, NY. I am a Bilingual Teacher here and last year I had a student who was T1D. When my son was diagnosed I realized how little I knew about Diabetes and what a terrible job my student’s parents did in educating us at the school. I really don’t think that they got it… There are language barriers that perhaps got in the way of these parents understanding T1D. Diabetes surely does not discriminate and people of all backgrounds need to rise up… Necesitamos una cura!!!!

You are right on in this blog entry…….I would even go further. I ask, is whining the same as action? Don’t get me wrong, I complain too, but then you need to use that as motivation to DO something. Just sayin……don’t be victims. There is minute to minute….hour by hour….day to day management and dilligence that our children have to endure, learn, and perform on their own. We as parents have a duty and an honor to support them in any way they need, related to T1 or not…..yes even when they are teenagers and tell us they don’t need us. Everyone has their challenges and you can either be the person that rises to it and push forward regardless….or you can make it through and post how much it stinks. It does stink… is not fair…..and when the complaining is done, it is still there. HERE is MY point: everyone impacted by this disease is dutybound to push the limit and make an effort to help end it. You have a voice, use it in a positive way. You have some way of raising awareness and money and you can pick the most viable option (in your educated opinion) for a cure and SUPPORT it! Don’t be a victim. (please absorb the real intent of that single sentence and don’t simply react defensively). If you are already doing your best, just challenge yourself to do that, plus one.
……my rant is done, now back to diabetesdad’s original point: he is just observing people who have an opportunity to do that “plus one” and not embracing it. People with a much farther reach than our little rants…..

You are spot on Tony and thank you. This post is not about you unless you ask yourself if it is and the answer yes. Not to me. Not to anyone else. You. I am not judging, pointing a finger, or even saying I am talking TO YOU. I am asking; am I talking to you? If the answer is ‘no’……move on. If the answer is yes…..figure out your next step. Not for me, not for anyone else. I am very clear about this point.

Thank you for the wake up call Tom, I for one, needed to read that today. I have good intentions but haven’t followed through. I pledge today to begin, time for me to walk the walk and do as much as I can, we need a cure and the only way to get there is through money.

Lisa made this video several years ago and is letting me use it this year to help with my efforts to support Joslin Diabetes Center. This video has almost 50,000 views to date and has done a wonderful job giving some insight to an often misunderstood disease. As parents we continue to try and raise money as well as awareness with the HOPE that it will help lead to a cure in her youth. This year I am proud to be on the Joslin High Hopes Gala Committee with some very dedicated people whom share our hopes dearly. Please SHARE this link liberally and thank you for caring and sharing our HOPE!

There was no intent to make anyone feel bad or less special, it was merely time to reflect. We are all in this boat together – none of us are ever going to forget that, being the parent of a T1 child is a never ending job. From the full time job of caregiver/unlicensed endo of younger children to advocate/fundraising parents of older children. It never ends, just different roles. That being said, it’s never a bad idea to reflect on what more we can do. If you feel you’re doing all you can do at the moment, then you are. If you hesitate answering then maybe this post was a real positive not a negative.

Thank you for your input. I always ask people to respond as a ‘reply’ to the post so I can see them—I do not follow on all the FB pages where this gets shared, it is just about impossible to know where the link gets shared. I am amazed at how many times people think they know what I am talking about, decide to comment, and make it an entirely negative spin on what I meant and also NOT AT ALL what I meant. If someone wants to know anything about what I write–I will gladly answer. But I have to see the question. You are exactly correct Jeanette and thank you for chiming in—

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