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Our son Liam was diagnosed with type 1 diabetes (t1d) almost 5 years ago. Through a combination of good luck and amazing technology, we have been incredibly fortunate and have avoided the things that we fear most. Most days, t1d is an annoying hassle, but there are days when it takes over our lives and scares the pants off of us.

This past weekend, we were in Boston for a music festival. We took a break from the music festival to climb at a local gym and go out to lunch. When we got back to the hotel, Liam started complaining about stomach pain. His blood sugar was starting to go up after a high carb, high fat lunch. He corrected but continued to complain about his stomach. A few minutes later, he was acting really goofy (not uncommon for our 12-year-old boy). He started to climb onto one of the hotel beds and fell on the floor. We thought he was just being silly until, on cue, all of our devices that receive Dexcom data alerted LOW! Steve picked him up off the floor. He was conscious but covered in sweat. I gave him a bottle of liquid glucose and a tube of glucose gel while Steve mixed the glucagon solution so we would have it ready if necessary. He tested at 30. He then devoured another 40 g of carbohydrate, and his blood sugar started to rise. Several hours later, his blood sugar soared into the 400s. He felt terrible and looked like he had been hit by a bus.

In hindsight, the low probably happened through a combination of an overly zealous correction for the rising post-lunch blood sugar and post-exercise effects (in addition to whatever growth spurt/hormonal factors are currently at play). The incredibly scary thing is how quickly it hit. What if he had been on the school bus at the time? The vulnerability that accompanies t1d is the thing I hate the most.

Lessons learned:

1. Liam’s lows are not always going to have the grumpy, sluggish, spacey presentation.
2. Adolescent blood sugars appear to be as labile as adolescent emotions.
3. After 5 years, we have learned so much yet know so little about how to be a pancreas.

Written by Susan Ramsey

Our son Liam was diagnosed with type 1 diabetes when he was seven years old. We knew that it was going to be important for him to remain active, both because of the positive health effects of exercise and because of the empowering effect of pushing himself physically. He was diagnosed on a Saturday morning. He was back to climbing at the rock gym three days later. On that first day back at the gym, I had him test right before he started climbing. His blood glucose level was 150, which is exactly where we wanted him to be before exercise. He started climbing, and I watched him like a hawk. After 10 minutes of climbing, I asked him to test again. His blood glucose level was 50! It was our very first low. I was a complete newbie. I had no idea what was going to happen at 50. I wanted to scoop him up, take him home, and make him sit completely still on the couch. Instead, I fed him glucose tabs and sat with him on the gym floor until his blood glucose level came back up. Then, he got back on the wall. It was a terrible 2 ½ hours. I was a nervous wreck. Liam complained about how much it hurt to climb with the fingers he had been poking for blood glucose tests. It was the first time we truly started to grasp the complexity and difficulty of type 1 diabetes management.

However, we were determined to figure out how to make this happen. It was not acceptable for Liam to believe that his goals in life were limited because the beta cells in his pancreas had stopped functioning. Our smart, capable boy needed to understand that a broken pancreas was not going to alter what he could accomplish.

We stuck with it, and eventually we started figuring it out. We determined that Liam weights his ring fingers less than the other fingers when he climbs. Therefore, we had him start poking only his ring fingers. We figured out that his blood glucose level drops most precipitously when he starts climbing if he has a lot of active insulin on board. As a result, we started feeding him low carb food before climbing. By the time we had figured out how to manage an active kid on shots, we switched to the pump and had to re-learn everything! There have been many, many bumps along the way, but we keep putting one foot in front of the other. That is really the key with type 1 diabetes management. The learning, problem solving, and adaptation never end. There is no finish line. We are never going to land on one right way to manage his type 1 diabetes.  Just as we think we have a handle on things, something shifts. He has a growth spurt, illness, more activity, less activity, etc. It’s really hard, but, as we tell Liam, “We can do hard things.” We are going to keep problem solving and adapting, and we are going to keep climbing. That is what we do. We do hard things because we can and we must.

We are certainly not alone in this. There are so many people affected by type 1 diabetes who are doing amazing things while managing this chronic condition. Through Rock Type 1, we hope to shine a light on some of those individuals, and we want to do everything we can to encourage and empower others who might be hesitant to push themselves physically. In the end, it’s all about living life to its very fullest, with or without a functioning pancreas.

Written by Susan Ramsey