When Does This Ride Stop?
I remember this carnival ride from when I was younger. It was this huge flat circle, and you stood up against the outside wall of it. Once the carnie got it started, it spun faster and faster, all of your weight pressing into your back, your body paralyzed by the centrifugal force and it would continue until you were ready to scream for the ride to stop. Almost by magic, it would stop, and then —after swearing you would never ride that again—you would.
That’s the closest thing to how I felt leaving the hospital with my son Henry after his diagnosis with type 1 diabetes. The paralyzing pressure would come in waves, pinning me to the wall as I struggled to breathe. And then, interspersed with them, little bits of relief. The day I felt like I finally understood what ketones were. The days when I felt like I had some small part in 24 hours of stable blood sugar. I’d fist pump in victory as I fell asleep, thinking “yeah, I got this,” only to wake up for a night check to see 392 on the meter—or worse, 43—and we start spinning again.
Slowly the light creeps in, that paralyzing feeling starts to fade out, your confidence builds, you feel stronger, smarter and you separate yourself from the disease.
You finally talk yourself out of blaming yourself for his diagnosis.
You realize that the very reason you hate type 1 diabetes is because you can’t control it. No matter how strong you feel when the ride comes to a stop, you know it’s going to start spinning again. You just have to ride it out.
Then, suddenly, it’s been a year. You look back at those photos of your child, right before diagnosis, his arms so thin they look ready to snap, the dark purple bags under his eyes, and your heart can’t help but hurt. You know you shouldn’t feel guilty, but you do. You wince when you see that photo of him eating a huge apple, or drinking a mug of hot chocolate and visualize how high his blood sugar must have been. The danger was invisible to you then, and now it’s almost the only thing you can see.
1 year.
That was the hardest date for us. It brought this incredible mix of joy and sadness. Diabetes is real, and my precious child still has it. Somewhere in your mind you kept thinking it wasn’t real somehow, that tomorrow you’d wake up and you wouldn’t have to put a needle in your child every time they ate a meal; you wouldn’t have to coax drops of blood out of their tiny fingertips a dozen times a day. You wanted to think that this wouldn’t last, but it did.
But you also lasted. You woke up each night when you should have. Maybe it took you a bit longer to roll yourself out of bed at 3 a.m., but you did it. Even more importantly, your child, the one who fought and screamed at you for hurting him on those bleached white sheets in the hospital, he’s getting stronger. Braver. Now he’s checking his own blood sugar, he’s not even flinching when you stick him with that syringe, and he only winces slightly when the insulin is a little too cold.
All of you made it. You are here. As weird as it sounds, it’s time to party.
Celebrate all of those tiny victories. Celebrate the time you nailed that bolus for that huge freaking cupcake or kept him from going low when he was sledding for six hours. Reward your kid for when he didn’t fight you over a finger poke. Really, really importantly, reward their siblings for how they grabbed a juice box for you, for when his sister approached you calmly and said, “I think he’s low” and you tested and his blood sugar was 36.
At the end of that first year we had an incredible opportunity. We were about seven months into diagnosis when, through a mutual friend, I was introduced to a newly diagnosed family. A comment on Instagram read something along the lines of “Get in touch with my friend Sara, her son Henry has type 1”. Her name was Maggie. Her son’s name was Angus. I immediately started trying to get in touch. We had felt so alone when our own child was diagnosed, I wanted Maggie’s experience to be different. I wanted it to be better. Henry did too—when he heard that Angus was terrified of the pricks and needles, he started making little videos for him to cheer him up. The two quickly became long-distance friends, as did Maggie and I.
The indoor water park chain Great Wolf Lodge contacted us and offered to host a meetup for these two little boys on Henry’s one year diagnosis anniversary. It was incredible. One year on from the gut punch of diagnosis, we were making new bonds with people in a new community—and riding waterslides. Needless to say, the kids loved it.
The second diaversary came and went. This year we took Henry indoor skydiving. As he waited to go up in the air, I saw on his continuous glucose monitor (CGM) that his blood sugar was beginning to drop below 100. Right when it was his turn I stopped myself as he evened out at 98, and almost seconds later his blood sugar spiked right back up from excitement. No, I’m not recommending skydiving as a way to treat low blood sugars.
And now here we are, three years later. Another one of the most significant friendships that my son Henry formed over the past few years was with a chef named Sam Talbot. Via instagram, Sam liked one of my photos of Henry; I checked out his profile and realized that he was a chef and a fellow type 1. I told Henry (an aspiring chef himself) about Sam, bought his cookbook for him which he pored over. At the grocery store he would tell me things to get in the produce section because Chef Sam Talbot ate them, and I obliged.
After they finally met in person, they began to talk regularly about cooking, travel and their lives. They talked about type 1, bro feelings and played little pranks on each other. They even work together on posts for Sam’s site. What we didn’t realize was that Henry and Sam had the same diagnosis date! How strange is that? 2/7, many years apart, but still the same day. With Sam’s birthday so close to Christmas and while we planned what we might do for Henry’s 3rd diaversary I came up with a plan. I knew that Sam loved snowboarding, and Henry had never been. What better time to bring the two together again?
Because of my work with Beyond Type 1, I knew about this amazing program called Riding on Insulin. Amazingly, they already had a camp scheduled for the weekend we would be celebrating Henry’s three years living with type 1. So for Sam’s birthday/Christmas/diaversary gift, Henry called to tell him that he was taking Sam to snowboarding camp with him! Sam was super excited, maybe even more excited than Henry. I for one can’t wait to see super tall Sam next to super short Henry on the bunny slope while Henry learns his first moves.
Every year brings new challenges, but it’s important to recognize that living with type 1 diabetes can also bring togetherness, new experiences and joy. Even though the ride won’t stop spinning, we’re all on it together.
More from Sara Jensen, I Can’t Sleep.
