We are lucky to have an elementary school with a full-time nurse, and it’s been the same person the last 4 years. So far, we have intentionally not set up any remote monitoring for me, although we may in the future. Greta independently tests her blood sugar and gives insulin through her pump at lunch time. We pack lunch each day, so she doesn’t have to guess on the amount of insulin she needs. The nurse checks in each afternoon to make sure her numbers are on track.
What is the biggest challenge for you and your family with Greta’s diabetes?
Our biggest challenge, at age 10, is finding the right balance of independence and autonomy for Greta, while making sure that she is keeping herself safe and healthy. Sometimes, she wants to be a normal kid, not having to worry about her diabetes. Our job is helping her find the right strategies to manage her diabetes independently so she can participate in opportunities that come along as kids get older.
How do you talk to your son about what Greta has gone through and continues to live with?
That’s such a great question. He was 11 months old was Greta was diagnosed, so it’s all he’s ever known. It only dawned on him at age 4 or 5 that not ALL families have someone with diabetes. He sometimes says he wants to have diabetes too. This makes Greta SO MAD. We tell her it’s because he loves her and looks up to her. I think living around her has made him more empathic. And he can tell you A LOT about diabetes.
Does Greta have a role in the management of her care? How has that evolved over the years?
She has a huge roll in her care. While we sometimes do it, to share the burden, she can do all her finger pokes and do all her dosing on the pump. We insert her new insulin pump and Continuous Glucose Monitor (CGM) sites. She’s getting close to being able to do it, but logistically being able to reach those parts of the body is tricky. She can read food labels and is getting good at guessing the carb count on more common foods (handfuls of crackers, or a baked good). Her endocrinologist is also good about engaging Greta in her visits. When she was very little, we would do her shots. She started entering the amount of carbs eaten on her pump by age 5 or 6, but with a grownup checking her before hitting ‘go.’ And it slowly evolved over the years.
What advice would you give to families in introducing ownership of this disease to their children?
Diabetes is a marathon, not a sprint. Additionally, it's not a one-way road. There will be times that kids 'grow' in taking control of their management, and then want or need their grown-ups to take more of a lead again, and then later they want to take on more again. It's not a steady progression of steps towards independence. Sometimes they will need you to step back up and help. And that's okay. I am also (because of my background) a strong proponent of making sure kids understand what diabetes is. An auto-immune process has stopped your pancreas from working. It is not your fault. It is not your parents' fault. And, it is really hard to mimic an entire organ! And "dia-buddies" - friends their age who also have diabetes, are really important! Finding that social network for them is important.
What technologies or tools have you and your family found to be the most useful in managing Greta’s care?
We are currently on Medtronic's integrated CGM/pump, and it's been a great system for us. It's hard for me to pick just one tool. The continuous glucose monitor has allowed us to understand and respond best to what Greta's blood sugar numbers are doing. But the insulin pump allows Greta to eat more naturally (snacks, not having to commit to eating her entire plate), and, especially when she was young, made it much easier for others to care for her.
