Stepping Back While Moving Forward

June 12, 2024

My daughter has had diabetes since she was three years old. It was unexpected and unwelcome. It changed our lives and nothing has been the same since this diagnosis. We’ve had the highest of highs…literally. And, we’ve had the lowest of lows…also, literally. We’ve moved from multiple daily injections to three different types of insulin pumps. We’ve learned to sleep with one eye open constantly focusing on a number on a continuous glucose monitor that lights up our bedroom like an airport runway. We’ve counted carbs and responded to alarms and done all of the things. We’ve also ignored the alarms and avoided counting the carbs and dealt with the aftermath. We are in the trenches and there is no end in sight. It’s a marathon and it feels like there is no medal in our foreseeable future.

It’s teenage diabetes and it’s hard.

Until, it’s not.

We had a difficult appointment with our endocrinologist a few weeks ago. It was a wake-up call. We had been living in the “diabetes burnout phase” for so long that our style of diabetes just felt right and normal. We lived in the highs because who has time for the lows? We ignored the best practices and did our own version of diabetes that no one should replicate or duplicate. And, now, we need to change our ways before there are long-term implications of our diabetes slackness. We know what we need to do but, sometimes, even with that awareness, it’s hard. We are surrounded by the very best diabetes big brothers and big sisters who have survived teenage diabetes and come out on the other side thriving. But, still, when it comes to the day-to-day, we are in first-class seats on the struggle bus.

Until, him.

We’ve got a new boyfriend on board. He’s been a best friend for almost three years and now they’ve decided that maybe there’s more to explore. He knows her diabetes but he didn’t really understand what it all meant until I sent him 30 snapchats in a row with short, explicit instructions of how to keep my daughter alive. Instructions of what to do when she’s high. How to help her when she’s low. Invitations to follow her on her continuous glucose monitor app. A pack of glucose tabs for his pocket at all times. Explanations of symptoms when her lips turn blue and her hands start to shake. Virtual hugs for when she says things that she doesn’t mean because her blood sugar is high and she’s not thinking clearly. All of the things, all of the time. Dating with diabetes must be difficult. While I’ll never understand how it feels to have diabetes, I’ll never forget how it feels to love someone with diabetes every day for the last 11 years. And, now, it’s his turn.

This weekend we traveled 7 hours to watch him play in a travel lacrosse tournament. We packed pods and insulin and an extra CGM. We had a cooler full of water and diet drinks and carby drinks. We did it for the plot, and the plot was the sweetest. On the morning of his first game, he whispered to me that he didn’t have the glucose tabs in his pocket because he was going to be playing a game and he didn’t want them to get lost. I told him that I had it and would manage the diabetes “for a while.” She sat on the sideline in the morning sun and watched her friend play a game that he loves, while I played the diabetes game that I have come to love. Once the game ended, he came to her and they talked and almost immediately he looked at his phone and his Follow app. He took her PDM and he bolused her for her meals and snacks. He sat with her when she was urgent low and watched as she ate Doritos and drank Sprite. He fed her Nerds gummy clusters. He waited and watched until the numbers came up and she was safe again. My heart exploded with the weight of it all.

I’ve watched her diabetes for 11 years. I’ve monitored and worried and fretted. And, now, it’s time for me to allow someone else to help me with this worry. The path to maturity is a long one, but it’s time for me to step back and allow her to move forward. I’ll always be here as the backup. But, I have to have the courage to let go and watch what happens in her next chapter. So far, the next chapter is the sweetest and I am so thankful that she’s got someone who truly cares about all of her…the highs and the lows and everything in between.

Thank you #17 for caring enough to want to understand it all. Onward to our next chapter in this amazing story.

Green and Orange Forever,

Written by Leigh Fickling, JD, MEd, MS