By Cheryl Lebsock
Just so you know, Frank is a jerk.
Dealing with Type 1 diabetes is hard. Really hard. Counting carbs, monitoring blood sugars, giving insulin and being prepared for every curveball that is thrown can be exhausting. Being a parent of a child who has had type 1 for 13 years has been quite a ride. A ride that can be startlingly fast, painfully slow, and sometimes make us want to pull over and get sick. But still we persevere. We are ever grateful for the “gold standard” of diabetes care and the knowledge that our kids with type 1 can and do live a long life with the latest medical advances.
My son Jordon and I were blessed to enter into the FL3X study when he was 14. The FL3X study was counseling for the child with type 1 and also included the parent. In each session, Jordon was asked to identify a struggle he was having with his diabetes and we would help find solutions together. After working through the usual struggles, i.e. testing during school, remembering to bolus and generally keeping him alive – Jordon sat back and just sighed. He said, “I get tired of always talking about my diabetes. Sometimes I just want to talk about me. My life. Who I am apart from diabetes.” At that moment, Frank was born. Frank is the name Jordon gave the “monster” that is his diabetes. And, believe me, Frank is a jerk.
Frank is unpredictable. He can act up at the worst time. He can cause problems with planning and logistics. He can raise a ruckus on sleepovers, P.E. class and in the middle of the night.
But together, WE ARE STRONGER THAN FRANK. The best part? We can talk about Frank, what he did today, the havoc he raised, problem solve on how we can defeat him, then WE CAN BE DONE TALKING ABOUT FRANK and focus on Jordon. How Jordon’s day was – his ups and downs and his personal achievements and struggles apart from Frank. Sometimes Frank is pretty quiet that day and lets us focus on the other aspects of life. Sometimes Frank is pretty big and demands a lot of attention. There are lots of days we can get pretty mad at Frank. But we get over it, because we know we are stronger than Frank.
Being able to separate Jordon’s diabetes from Jordon has taken so much pressure off of our relationship. It has allowed us to get mad at type 1 diabetes, and not at Jordon. It has allowed us to work together to fight the battle against diabetes, instead of battling against each other. It has also given us a target for our anger that is separate from Jordon. Being able to name the beast allowed us to be on the same side of the battle against the daily struggles of type 1 diabetes instead of the opposite sides.
Until the day when medical advances allow us to permanently get Frank out of our household, we can work together to keep him from throwing his “tantrums”. We can make sure we deal with Frank’s curveballs – then we can make sure to make time for the person behind the Frank.
