That’s right…..24 years to the date. the life of a family would change…..and change forever. The interesting thing about our journey is that twice a year I really sit down and reflect on the world we now call ‘normal’. At this point, it’s not ‘the new normal’….it’s the normal that has moved in, and surely not new anymore. I do it every September 26th (today) and every March 20th (when our daughter and youngest son was also diagnosed).
24 years is a long time.
I have this very strong feeling that we parents have been told, or convinced, that great technology for our kids is really all that matters. Sure the cure will be worked on but it is technology, technology, technology for better management tools for our kids. Better tools? you bet’cha. But that promise I gave my daughter 24 years ago to find a cure is still my driving force each and every day.
From a guy who has been at this for 24 years, I have watched as the world was made to marvel at an insulin pump, a cgm, long acting insulin as THIS is what we needed to work toward. When they each arrived, the next thing was dangled before our eyes to marvel at and of late, it is the bionic, artificial, closed-loop-type pancreas devices.
To be clear, CRYSTAL CLEAR, I think it will be great. And I’m also convinced that as soon as it gets here, we will then be told it is time for the entire device to be an internal device….and that will get all of our attention until THAT occurs.
My point?
Why am I made to feel that my desire for a biological cure needs to be moved to a back-burner. I think it’s time for the parents’ voices to once again be raised for energy to go towards a cure; reversing this disease in our kids still living with it. Somewhere, somehow, I feel like THAT voice was told to shut up because it’s too hard or that it will never happen.
Says who?
It was the parents’ voices that raised up the belief for buildings to be built and organizations be created to find a cure in the first place for the disease that impacts our children. Not find a cure if it’s easy to do. Not a find a cure if it can happen quickly. But search for a cure until we find it. Technology and management tools?????? absolutely, keep perfecting them, keep making them better. But let’s not all but abandon the search for a cure……because we are being told it’s too hard. We are parents, nothing should be too hard when it comes to our kids. We just need to scream back at those voices telling us otherwise; even louder. We deserve better…..and surely so so our kids. Period.
I am a DiabetesDad.
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8 replies on “24 Years Today….Why are We Told that a Cure Should be an Afterthought?”
I don’t disagree about the importance of ‘a cure’ (whatever that truly means). But as someone who’s lived with type 1 for 44 years and counting I believe the progress, such as it is, will help me stay healthier and alive until that cure arrives.
Because one thing I have learned in 44 years is that getting to a cure is not easy. I see lots of different types of research looking at ways to kickstart our pancreases, but nothing that close to being available within “the next 5-10 years”. Which is, by the way, what my parents were told when I was diagnosed in September, 1972.
I hope the devices/drugs progress doesn’t delay or impact the cure research, and I don’t think that it does. We’ll all be a lot happier when that day arries.
My hopes also…..
Thanks for chiming in.
As a Diabetes Dad myself I just want the cure. I am crying just thinking about. I want to throw the DEX away and never have to scold my son for jumping in the pool with it on. I don’t want to get sick when we leave it at the campgrounds never to be seen again. I don’t want the guy mowing the outfield at the ball park to call and say he found just before he mowed over it. I want to quit seeing rashes and holes all over my son’s tiny little 9 year old body from his Omni pod. I just want him to sleep through the night and not worry about going high or low and wetting the bed when his friend stays the night. I want him to be able to stay at a friends house. I just want a cure. I just want a cure. Please.
Amen Kyle—–Amen indeed.
In 2001, when my then 3 year daughter was diagnosed, we were given the hope of a cure in the next 10 years, “they are really close” we were told. The medical world was buzzing with better technology and getting closer to a cure. In 2013, my then 11 year old son was diagnosed and we actually heard crickets, not a lot of talk about a cure. Never even mentioned in his hospital stay. I do know from staying intuned to the research that great things are happening however, it seems at a snails pace. I am grateful for the advances in technology that came before our induction into the diabetes world 15 years ago. The pump was already here as was a continuous glucose monitor. But now we can have our kids wear the cgm’s all the time (for those that have insurance that cover it)! I am with you Diabetes Dad…it’s way to quiet about finding a cure!! I will always remain hopeful I feel like there should be more to it!!
Thank you for your input…..in as much as ‘it is in five years’ is ridiculous, so is ‘why bother, it will never be here.’ As you stated, there is much going on…..move them forward or move them out…..bt keep moving all the same…..imo. Tahnks again.
I am a mom but i am the one who has had type 1 for 31yrs. I remember when i was first diagnosed they told me i would see a cure in my lifetime. It is frustrating to know i still have not seen it but i do like what they have now that keeps me alive. I have my kids checked every year to see if they may be getting it as well. It scares me to know they have a chance but i am also grateful for the technology. If one did get it i would give them my pump and my cgm so they can live better. I remember how to do injections not a fan but it will keep me alive.
Thank you sir for writing this. If my parents were here today they would like your site and help in anyway to find a cure.
WOW…..what powerful words…..we have all been ‘told the same story’ and I’ve always wondered who started it? Guess it does not matter….I never believed it was ‘right here’ but I do believe we are getting there…..
Thanks for writing.