Having a diagnosis of diabetes in the family is surely a huge kick in the gut-knock-the-wind-out-of-you moment. I have stated before how much I like the movie Shawshank Redemption. In the movie, the emotional state of a prisoner, is mentioned, during the moment the cell door closes behind them and they hear it lock for the first time. It is the realization that they are incarcerated from that moment, moving forward.
Sound familiar?
To be clear, everyone will have times that just take us into really dark moments. Times that are hurtful to our entire body. Real pain. As parents, it would not be normal to be otherwise. Know this. Accept this. Know it is okay.
How is that some seem to be able to handle this ‘life sentence’ with more hope, more positive attitude, and more living so ‘up’ than others; despite everything that is faced on a day-to-day basis? How?
I can tell you that it isn’t easy. But I can tell you that the fate of how you live, believe it or not, will lay in your own hands. I cannot speak for everyone, but I can share with you a few things that drive me forward.
Number one. I will never lose faith that a cure will be found in our lifetime. I hear all the voices out there and all the sides of the discussion. Twenty-two-plus years at this, I have heard much. Good. Opposing….and otherwise. This is not a blind feeling. I work at the Diabetes Research Institute Foundation (I share that in fair disclosure and in my search for my best efforts, that is MY choice where I want to give my time, even professionally as a career); and all you have to do is look around, and do a little research, and you will see scores of other places that are involved in funding and/or actually being the ones that ‘do the science’. Find someplace that you like, and follow the world of research closely. Be part. You learn so much less as an observer than a participant. Get involved.
The reason that I stay hopeful is that I have been at this for 22+ year. And let’s be clear—-in as much as some have said they’ve been hearing about a cure for so long that they are tired of hearing it; I take a different approach. I see more advances in the last 15 years than the hundred before……..that is encouraging. Will it happen tomorrow or in the next 2 years? No it won’t. But I have educated myself enough to know what is real and what is not; and know that there are enough projects around that are good enough to show promise and different enough to advance the dream of a cure further. But do your homework yourself and you will see, but as you search, know that a few years ago there was nowhere near what there is today. Also open your mind to ‘not care’ who gets us there first but maintain a positive-ness on, and toward, any science that moves the dial-up a notch in that search.
Second. Look at the kids who have diabetes and how they excel. I have the wonderful opportunity to see kids do wonderful things all the time and they do it with diabetes. Not everyone goes to the Olympics or play professional sports with diabetes; but they do excel in so many different areas. Diabetes stops them from nothing. Attach yourself to these type of people. Get to know them. Learn how they became involved in sports, the arts, school activities, and in life. No one, or nothing, will inspire you more than watching your own children. Help them and that leads me to………………..
Third. Education. I cannot emphasize enough how crucial this aspect is in staying positive. Fear. Uncertainty. I find that more in people who really know little about what diabetes is all about. They are reactionary. They hear people say certain things and since they don’t know, they accept it as truth. And since they do not do more work themselves, it results in fear. Do not rely on ANYone’s word on ANYthing. Find out for yourself. This is also very important for day-to-day management tools that are in the pipeline as well. CWD Friends for Life, Camps, support Groups, Fund raising events that have health fairs, and research update meetings; are just some of the places where you can usually go and hear about new and/or existing products.
When we started, the insulin pump was a pipe-dream at best. It was the size of a space-person’s backpack. “No way”, “We’ve been hearing about it forever”, “Yeah, sure—some day—what does that mean?” Were all very common statements and here we are where the insulin pump is in everyday use. The same goes for the CGM>
I cannot be clearer. Things take time. More time than you can ever imagine, and never fast enough for us parents. But as long as you see people working on these things, know that it is all moving forward. I’m always excited that tomorrow….does come and with it comes new advances. Believe in it.
Our kids could die. (There I said it.) But the more you know, the more you can live a life in control of what will happen. After that, it’s not in your hands. It is not exactly like driving a car, but there are parallels. Do everything you can do to teach them and after that, they truly become on their own. The car gives them so much more to enhance their lives. Do you not let them enjoy life because of the amount of people who have died in car accidents? Do not let them NOT enjoy life, even with diabetes. Give them the tools. And say a prayer too.
All of this does not happen the first week after diagnosis. But the more you help them excel, the more positive life you will have. THAT only happens when you educate your self first.
Even if you have been at this for some time; remind yourself how far you have come and ‘re-up’ the effort you once had; and if you are new; there are wonderful people and opportunities out there for you to get to know. As you help yourself, you help your child.
It is all just that simple………it just takes a lot of work. But in the long run; you will all win. Get started.
I am a diabetes dad.
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