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.
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.
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.
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