16 years has changed some things but not everything

16 years ago my son was sick. He was lethargic and whiny. He drank a lot. He went through a crazy number of diapers. The doctor we took him to said he had the flu. We learned the difference a week later.

A lot has changed in 16 years. Not as many people use NPH any more. Lantus and Levemire are now the norms for basal insulin. Insulin pumps are readily available for most children with diabetes in Canada. Glucometers now read your blood glucose levels in a matter of seconds.

16 years ago, I was my son’s primary caregiver. I was the one to test and inject. I counted his carbs and watched for signs of highs or lows. Today my son does it all himself. I have no idea what his last A1c was. I can’t tell you what his reading was a 3pm yesterday let alone what it was at 3am. He is an adult now, struggling to make his way through adult care and its regulations.

Today parents can turn to Facebook for a variety of support groups. The internet offers a treasure trove of resources and information. 16 years ago, our house didn’t have the internet. I didn’t have a cell phone. I was put in touch with one family whose daughter was diagnosed just weeks before my son. We were both lost and working to just stay ahead of the numbers.

I read about parents of newly diagnosed children and hear many of the same fears echoed as we had 16 years ago. They are inundated with information and overwhelmed by what has just happened to their family. They are given tools and worry if they are doing it “right”. Eventually they will learn that there is no right, only what works for them and their family to keep their loved one safe and healthy.

I read about parents who advise the newly diagnosed to “get a CGM” and smile to myself. I remember when they were only available in a hospital and you didn’t know if it was calibrated properly until it was brought back to the hospital to have the results were analyzed. A CGM was a dream that is now a reality.

I have also watched our children become attached to more and more equipment. 16 years ago, the insulin pump was for those with the deepest pockets or the best private insurance. It was a physical reminder of a disease that had previously remained hidden in behind closed doors and in washrooms. Now many people with diabetes are able to take advantage of sensor augmented pumps–wearing a site for insulin to be delivered as well as another sensor to detect bg levels. The technology is amazing.

A recent story in social media reminds us not to become overly confident in that technology however. The story of Jedi the dog, showed that sensors can be off but thankfully that dog’s nose was bang on. Diabetes awareness dogs–again something that has sprung up in the past 16 years. There have always been service dogs. There have always been pets that seemed to know when their owner was high or low but now you can purchase or train your pet to detect the pheromones released with highs and lows. It’s an incredible thing.

A lot has changed in 16 years. My children are young men. Phones have moved from something that tethered you to the kitchen wall to devices that you carry in your pocket and access the world. Insulin pumps have become smaller and now talk to sensors that monitor blood glucose.

Sadly, some things haven’t changed. Care and access to devices can still depend on the size of your wallet or the quality of your private insurance. A cure is still something that some dream about and others have all but given up on.

16 years ago today I did not know the dramatic turn my life would take. I did not know the steep learning curve that I would find myself on. I did not know the incredible friendships that I was about to make. It has not been an easy path with diabetes tagging along but it has brought a lot of blessings with its trials.
16 years

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