What does diabetes ‘awareness’ really mean?

Wow, another diabetes awareness month is coming to a close… I can’t believe this is the 8th one we’ve recognized in our family.

9 years ago, I didn’t have a clue about the significance of this month and I knew absolutely NOTHING ABOUT type 1 diabetes in general. I had a couple friends and a cousin who lived with it, but I really didn’t know what it meant to experience it in my home.

How is this year different? Well, 2021 marks the 100th anniversary of the discovery of insulin – the medicine that has changed the outcome of a diabetes diagnosis. This is also a moment to reflect on how far diabetes treatment has come over the last 100 years, with technology like the Dexcom G6 continuous glucose monitoring system* completely transforming diabetes management each day and bringing more peace of mind to parents like me over my daughter’s illness.

What would I convey if I were trying to help you understand what D-Parents go through on a regular basis? What does diabetes ‘awareness’ really mean?

Here’s what I would want you to know:

  1. Please don’t ask if it’s ‘Under Control’. It’s only as under control as is possible with constant monitoring and adjustment while taking into account hormones, food intake, exercise, weather, sleep, and probably a thousand other micro-factors. “Under control” means a whole lot of team work between Maggie, us as her parents, her teachers, friends, pediatrician, diabetes team, etc., to monitor, adjust and treat these things. Tools like her Dexcom G6, alongside her insulin pump, as well as the Follow app** so that I can remotely monitor her levels, are tremendously helpful in keeping things in range as much as possible.
  2. Insulin isn’t a cure, it’s a necessary treatment. Our bodies produce insulin all the time – it is a hormone that’s produced in our pancreas and helps convert the glucose we eat into energy that our body can use. Type 1 Diabetes is an auto-immune disease that causes the body to attack the cells in the pancreas that produce insulin, thus making the body unable to convert glucose into energy. Synthetic insulin is used to balance out carbohydrate intake as well as in the background for the body to continue to function properly. Unfortunately, the cost of insulin continues to increase and be a barrier for many individuals who don’t have benefits that can cover it, and turn to rationing insulin to manage this high cost.
  3. Being a parent of a child with type 1 diabetes is a lot of work. Sleepless nights, appointments, phone calls, trips to the doctor, emergency hospital visits, pharmacy pickups. Learning and remembering all the ratios and calculations, then administering a life saving, and potentially deadly liquid into your child multiple times a day, all while they fight and scream because of their fear of needles. Alarms going off in the middle of the night to either check sugars, or to let you know that glucose levels are too high or too low from the CGM. Though, you would gladly do it all over again tomorrow night just to keep your child safe, happy and healthy.. 
  4. You/We are not alone.There is an amazing community of people who are going through this right alongside of us who care and understand. Other T1D Dads and moms who are up till 3 or 4 am, dealing with the same stress and who love to share and care for each other.
  5. Treatment continues to improve, while we wait for a cure. I am so grateful for continued advancements in treatment and technology to make my daughter’s life so much better and able to manage this disease that is in her, but doesn’t define her.. I continue to pray for a cure and will continue to advocate, educate and share what I know so that others will have a better idea what this is all about and hopefully more research can be funded to continue to improve treatments and eventually a cure.
  6. I have no idea how I do it all. So please don’t ask. Most of us parents have no freaking clue how we get through a day, we just do it. Sometimes you have to just end the day grateful for what you were able to get done and then get back up and do it all over again, thankful that your kids are happy, healthy and safe.. 

I hope this is helpful. I hope it can either help you understand a little of what goes on day in and day out (yes, it’s a 24 hour a day disease for life). I hope if you are reading this when your child is recently diagnosed, or has been for a long time, that you will see there are so many parents who have gone through this before you, and will be right there alongside you. You can do this! Yes, it is a lot to learn. Take a deep breath and take one step at a time. Make notes, and ask as many questions as you need to. Be patient with yourself, be kind to yourself. You will get through this and your child will grow up to be an amazing person because of all you have done for them.

While this post is sponsored by Dexcom, the experiences and opinions mentioned here are my own. 

*To be sure this product is suitable for you, always read and follow the instructions on the label. You can find out more about the Dexcom G6 CGM system here

**Following requires the Follow app and an Internet connection. Followers should always confirm readings on the Dexcom G6 app before making diabetes treatment decisions.

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