ColumnsLiving with Type 1 Diabetes

5 Lessons Learned from Year 1 with Type 1

Our family recently passed the one-year mark since our son’s Type 1 diagnosis. I’ve heard that it can take up to a year to adjust, so this looks like as good a time as any to take stock.

Here are five things I’ve learned:

1. We’ve learned it’s best to over-prepare. Our son had been on insulin less than 12 hours when we first tried to leave the house…and we left without his kit. It hadn’t sunk in to us that the kit needed to go everywhere with him. Now, there are low boxes in all of our cars, low boxes in the kitchen, and a travel kit that has supplies packed and ready to go if we are going away for the night.

2. Parental diabetes stress evolves. When our son was first diagnosed, the stress was constant, and we flew into a panic with each low, each high, and each call to the doctor. Now we have a better understanding of what highs and lows mean and how to treat them. That leaves us the space to deal with new stress, like worrying about how to pay for his diabetes care and how to adjust as a family as he faces different stages in his life with diabetes. The stress never goes away, but how we react to it and what it’s about changes.

3. We’ve learned how to communicate with others about his Type 1. I now know what my son can successfully do on his own and what he needs help with when it comes to his diabetes. That means I don’t have to go through a full diabetes education session with every new adult in his life. This makes it much easier to let him go out with friends or spend the night away without me worrying myself to death. My son knows what I expect him to do and what he needs to communicate with me about while he’s away so that I am comfortable.

4. Type 1 bonds strangers together. I quickly learned that having a child with Type 1 creates an instant bond with other parents and families. One resource that has been invaluable is our local Parents of Diabetes group on Facebook. Here, parents who live in the same geographical area share tips on local resources, provide experience on working with our regional insurance carriers, and answer general care questions. There is something comforting knowing that there are people in your neighborhood living with Type 1 and who can be there for you if you need something.

5. It’s still really, really hard. Even though I rationally know that my son is ok, I still have moments where I flash back to life before diabetes, and there is a sense of loss. As a mom, I can’t help but still be a little mad and upset at times that he has to live with this and I can’t fix it or stop it. Something tells me that this feeling will never go away.

Making it through the first year had its challenges, but we did it. I know it sounds a bit silly, but I finally feel like we’ll be ok. There’s a feeling that if we were able to make it through this steep of a learning curve, we’ll be able to ride out anything.

And here comes Year 2….

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Stephanie Jordan is a business strategy and organizational development consultant who was introduced to Type 1 diabetes when her son was diagnosed in 2013. She actively works to improve the lives of children and their families through her work on the board of the Southeastern Diabetes Education Services organization and with multiple programs provided by Camp Seale Harris that encourage children with diabetes to live well. She lives in Alabama with her husband, son, and three dogs.

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