If we lived a hundred years ago, my son would be dead.
That’s something that has haunted me this last month. I can’t tell you how many times, as I write historical fiction, that I wish I lived in a different time, or could at least experience it. But I can’t wish that anymore, if ever I really did. I’m so, so grateful that we’re in this time. This era. Because as little as 100 years ago, the day that ended with Rowyn taking a helicopter ride to Pittsburgh and an overnight stay for us all in PICU would have ended with him in a coma that led straight to death. (Okay, maybe not that very day, but it would have come soon.)
November is Diabetes Awareness Month. A fact I was honestly not aware of before the disease made itself known in my family. I’m not going to share our story as a bid to raise money for any causes or to stir your sympathy. I’m going to tell a bit of our story because while you may not have this, you have something. Something you’re dealing with or have dealt with or will deal with. We all have something. We can all relate to that bone-jarring fear. That desperate plea to God. That realization that everything has changed.
It’s taken me more than a month to really process it all and stop having nightmares every single time I close my eyes. Part of the healing process for me was to write it all down. So I want to share a bit, just in case some of my thoughts can help someone else.
For me, the journey really started on Thursday, September 24. Rowyn wasn’t feeling great. He’d been tired all week, but that wasn’t unusual for this time of year. He has seasonal allergies, and the ragweed had been out in full force. He always had a week like this in the fall, so I thought nothing of it until I went to book club that night. The kids had gone camping with my parents the weekend before, and Mom said, “Rowyn was drinking a lot, and going to the bathroom a lot. You know that’s a symptom of diabetes, right?”
I didn’t. I knew zero about diabetes–it had never come up. My mom, however, had worked in the medical field for years, so it’s no surprise that she knew a bit more about it. I wasn’t convinced she was right, of course–surely drinking and eating a lot were also symptoms of being a 12-year-old boy. Right? But I looked it up. I read the symptoms. I saw that he had them. But they also could have just been symptoms of the flu or a sinus infection, so I said, “Okay, we give it a day.” Well, that evening he threw up, and then a few more times on Friday. Our family protocol is to give any vomiting illness 24 hours, because with the kids, they were usually fine after that. If he started to improve, I knew we’d have nothing to worry about. If he didn’t improve, I’d talk to the doctor.
He didn’t improve. By Friday evening he was so listless that I was starting to get worried. He hadn’t eaten all day, though he was drinking plenty. He asked for some Jell-o, so I made some, gave him some Gatorade…and then I slept beside him on our sectional couch that night. Praying he would get better through the night. But his breathing was getting so heavy and ragged. He was so weak. When he got up to vomit or use the bathroom in the middle of the night, he could barely walk. At one point, I trailed him to the bathroom because he was just so unsteady, and stood outside the door. After the flush, I kept waiting for him to come back out, but instead there was just thumping. Alarmed, I called out, “Rowyn?”
I heard his hand at the knob, so I turned it. He was sitting on the floor, too tired to stand up. And he looked up at me with the expression that still haunts me. Eyes wide in a sunken face. So pale. He looked so thin, skeletal. And he just gazed at me with utter horror, like Why can’t I get up, Mama?
I reached down and helped him to his feet. He’s 12, nearly my height, but has always been skinny. I had to help him back to the couch, and he felt … so … light.
Mama was terrified.
We go to church on Saturdays, but that morning, the moment my husband woke up, I said, “We’re going to the doctor.” I called the pediatrician the minute they opened and got him an appointment for a couple hours later. At one point when he came out of the bathroom, he asked me to carry him to the couch. That was when we considered going straight to the ER, but I know oftentimes the ER takes forever; and by the time we could have gotten there, it would have been his appointment time anyway. So we just went to the doctor’s office. My husband still went to church to run all the equipment. My daughter stayed home. In the back of my mind, I was honestly wondering if it was COVID. But the doctor’s office didn’t seem to think so–they still saw us, and it only took them a few minutes to confirm my mother’s suspicions. He was in Diabetic Ketoacidosis (DKA), with a blood sugar of 600 (normal is 100), and it was serious. From the doctor’s office we drove straight to the emergency room, where they were quick to get him on an IV and insulin.
I had no idea what DKA was. In short, it’s this: his pancreas had stopped working, stopped producing the insulin needed to break down carbohydrates and turn them into fuel. With the absence of insulin to do this job, the body begins to break down fats for energy instead of carbs, which releases an acid called ketones. So toxins were filling his body, and in an effort to get rid of them, his system was pushing them into his urine and also trying to expel the toxins through his breathing–hence the heavy respiration.
Our area has no pediatric unit, so we were told from the start that the ER here was just a stopping point–we’d be transferred to Pittsburgh Children’s, and they were going to request a helicopter.
Did I mention Mama was terrified? This would be the point when Papa was pretty terrified too, as I texted him. This was also the point where I said something along the lines of “Get here now.” For me, it was because I could not make these decisions alone. For him, he heard, “Get here now or you might not see him again.” I didn’t realize at the time how he read my short message. When he admitted it a week later, I was at once sorry I panicked him and not at all sorry that it resulted in him rushing to the ER. Because while Rowyn wasn’t on the brink of death thanks to medical science, it was serious. Critical. And without those IVs, without that insulin, he would have been soon on the brink of death. He would have eventually slipped into a coma, and from the coma, he would have died.
Meanwhile, our daughter Xoë was at home, waiting for news. The house phone wasn’t working right, apparently. I tried to call her, but she couldn’t get it to answer. I called my mother-in-law, who lives just up the driveway, but it took her a while to come tell Xoë (15) what was going on. Xoë had been watching the church service online and, after missing my call, went back to the computer just in time to see my dad (our pastor) halt the sermon to pray for Rowyn. Cue sister’s terror. Thankfully, my MIL soon arrived to give her a full update. Xoë ended up staying the next few days with my parents, joining us via computer for education and even coming up to Pittsburgh once with my parents and sister and niece, even though, with COVID restrictions, they weren’t allowed beyond the hospital lobby. I’m getting ahead of myself, I know, but I just wanted to inject a bit here about my amazing girl, and our amazing family who was so THERE. Who rallied around us and took care of everything while our world stopped. After we were all settled at home again, we sat on the couch one evening and Xoë told me how scared she’d been. She’s since learned how to do all the things the rest of us have, so she can help out. So proud of her! But back to the story. And a bit about what this disease is.
Diabetes as a disease has been known about for thousands of years, its symptoms recognized well before anyone understood the underlying cause. Because both urine and breath take on a sweet smell, physicians could mark it easily. “Diabetes” in fact means “passing-through”–it was the disease in which one literally urinated oneself to death. A disease that could hit at any time, and when it hit in children they could linger in these diabetic comas for a while…but it was ultimately a death sentence until the 1920s, when some brilliant scientists realized the role of insulin and first administered some to a young man in DKA and brought him back to the land of the living. (The team won a Nobel for their discovery. Well deserved!)
I have been praising God daily for the work of those scientists, and the ones still working now to cure this disease for good.
David and I weren’t allowed to go in the helicopter with Ro when they transferred him (though my parents and Xoë watched the helicopter fly overhead and waved to him), so we drove to Pittsburgh and made our way to the PICU, which would be our home for the next 30 hours; we were in the hospital from Saturday to Wednesday. Rowyn doesn’t even remember that first day. The doctor visit, the ER, the helicopter ride … it’s all a blank for him, and I’m glad. I’m glad he doesn’t have the images I do. I’m glad he doesn’t remember us huddled on that little futon, crying. Sobbing silently to God. Seeing, every single time I closed my eyes, that look on Rowyn’s face when he was scooting across the bathroom floor.
When we got to the hospital, he greeted us with, “I want to go home.” Of course. The day is a blank in his memory, but at the time he knew he was in the hospital. And he knew, as the next few days progressed, that his life would never be the same.
But he was alive. Thank you, God. He was alive.
Over the next couple days, we learned so much. We learned what this disease is, and how Type 1 and Type 2 Diabetes are different. If you don’t know, here’s a quick explanation: the pancreas produces insulin, which is required for turning carbs and sugars into energy. Sometimes, when we don’t eat right or get enough exercise or have other medical conditions, our pancreas grows weak and doesn’t produce enough insulin. This is Type 2 Diabetes, which can often be treated with diet and exercise to keep the pancreas from giving out altogether.
But sometimes, you have an autoimmune reaction to the insulin in your body, when your disease-fighting cells mistakenly identify insulin as a virus or bacteria and attack it and destroy it–like an allergy, but it’s having this reaction to something within your own body instead of a usually-harmless outside thing like peanut butter or dairy. This is Type 1 Diabetes. There’s nothing you can do to stop it. You can’t prevent it. It’s a genetic condition inherited from both parents and, like any other recessive trait, it can pop up at any time, even when you don’t know of any history of it in your family. When you have these markers and this genetic coding you will get Type 1 Diabetes. It’s just a matter of when. It usually strikes before you hit age 40, most often under 21, which is why it was once called Juvenile Diabetes. They used to talk about it hitting suddenly, and it still appears pretty suddenly, but scientists now understand that it’s always there. It just needs a trigger to show up visibly. For Rowyn, that trigger was probably puberty. It could also be growth spurts or stressful situations or any number of other things. Regardless, there is currently no way to undo this autoimmune response, though scientists have some really promising research underway to rewrite that faulty genetic code.
In the hospital, I kept looking over at Rowyn–he was getting better and better, looking more like himself, less like a skeleton. But I had no idea how he was really processing all of this. He seemed to just be soaking it all in, and we of course told him to let us know as he had questions. But he really only spoke, at the time, about the immediate things: what he wanted for the next meal, what he wanted to wear, what time the teachers would be coming in, whether he had time for a nap, because he was still really exhausted from it all. With a month’s distance between us now, though, I can tell you that he was processing it calmly and filing it all away. He frequently reminds me of something they taught us in the hospital that I have to look up again.
And he firmly believes they’ll solve this thing and come up with a cure in his lifetime. We’re trying to both nurture that hope and keep him realistic. They could find the answer–they could find it tomorrow or next week. Or in a decade. Or in five decades. I really think the cure will come within his lifetime, and that’s what I’m praying for. As my husband said, “I’ll take any miracle God wants to give us–but I hope it comes in the form of a medical cure. Because then all these kids will be cured.” I so want that. For every parent, for every child, for every adult who lives with this.
If you’re like I was and know nothing about how this works, here’s a snapshot of our day.
Rowyn gets up, and we do a finger poke to check his blood sugar (there are monitors you can wear, but we don’t have one yet–you have to first prove you can manage it without tech). We use that number, along with the amount of carbs in his food, to calculate how much insulin he’ll need with breakfast. For carb counting, we read every label. If he’s eating a simple serving size of whatever food it is, it’s easy. If I’m making a recipe or doing something like adding PB and syrup to a pancake, there’s some measuring and math involved. The digital scale lives on my table now, and I invested in a set of measuring scoops to help me figure out how much of everything he’s eating.
Though you’ll hear different ways different families handle this, our team has us dosing for everything before he eats. Which means he has to decide before a meal what he’s going to have. We add it all up, dose for it, and that’s it. No more grazing. No more “I’m still hungry, give me a second piece.” With Type 2, people often limit carbs to reduce the amount of insulin needed, and there are certainly times with Type 1 that that comes up too…but at this point in Rowyn’s life, he needs carbs. They are what helps him grow. They are the body’s fuel. So he can have them–in fact, the dietician has him eating a ton of them–we just have to dose for them. In terms of diet, it’s all about balancing carbs with protein and veggies and fats. Very little is totally off-limits–no “drinking sugar” in the form of juices and sodas, except to combat low blood sugar, and things like syrups and jellies and Jell-o are now sugar-free. But otherwise, he eats normal food. He can have 3 sweet treats a week, they just have to be with a meal, so that the “better” carbs can be broken down along with the pure sugar and help keep him from having a sugar crash. And we’re learning what, even with insulin, makes his blood sugars skyrocket (like pizza. The ratio is off thanks to the cheese, so even dosing for the carbs means high numbers for hours afterward).
We set the insulin pen for that amount, put on a needle, and give him an injection. He eats. At his age, his dietician wanted him to have 75 carbs with every meal and 30 with every snack.
Mid-morning, it’s snack time–we repeat the process. At this point, his blood sugar still seems to be pretty high, so it’s another pretty big dose.
But by lunch, he’s back into normal range. Occasionally he isn’t hungry in the mid-morning so we might skip that snack…but then we need an early lunch, or he starts to get shaky. This is an indicator of a low blood sugar. We do another finger poke, and sure enough, his blood sugar might have dipped down below 70, which needs to be treated. Treatment is something with fast-acting sugar, like a small juice box or a few PB crackers. If this happens at meal time, he then just eats as usual. If it happens at a random time, we have to follow it up in 15 minutes with another finger poke to make sure his sugars are back into normal range.
Repeat this process for dinner, and for snacks. (Well, not the low. That happens to us a couple times a week at this point, not multiple times a day.) On a normal day, he has anywhere from 4-7 injections of insulin and has performed 7-10 finger pokes to check his blood sugar. He can usually feel it when he’s going low, and he just told me yesterday that he can also tell when he’s too high (though he couldn’t describe the feeling to me). We need to check his sugar levels again 2 hours after his final snack of the night, and again in the middle of the night to make sure he’s not dipping low. (Again, there are devices to monitor, and also to pump insulin directly without the injections, but it’s still too early for us to get those.) Dipping too low could result in seizures, unconsciousness, and in extreme cases, coma. Going too high could result in ketones and DKA if not treated.
Cue the mama terror again. I think at this point I’ve had more nightmares about diabetes than about anything else in all my life combined. I pray, every night, “Keep him safe until morning.” I get up every morning praying, “Lord, wake him up.” If he’s sleeping later than usual, I sometimes sneak back down the hall just to listen for normal shifting/breathing noises. Because diabetes is changeable and tricky, and at this point his pancreas still tries once in a while to produce some insulin–which means he can plummet low without warning. He could be in a perfectly healthy blood sugar range one hour and then drop down super low in the time between checks. Eventually we’ll have that device to alert us to these lows. But for now, we rely on finger pokes and prayer.
Rowyn is really being a champ about it all. But it still breaks my heart to watch him try to find a place on his arms or legs that won’t hurt when he gives himself his injection. He’ll touch the tip of the needle to this spot or that, and he’ll feel the little sting, and he’ll say in total exasperation, “This isn’t going to work!” But of course, then he picks a spot and he grits his teeth and he presses that tiny little needle carefully into his skin. He understands how necessary that insulin is, and I’m so thankful for that. I’m thankful that this hit when he’s old enough to get it, to remember what he went through, and to do what has to be done. I’m so proud of him.
And now we’re getting to the point where every day is not totally consumed by thoughts of this. We’re getting to the point where we need to keep moving toward our other goals. We’re to the point where we know that while everything has changed, nothing has changed. Rowyn’s still Rowyn. We’re still us. Our dreams are still our dreams.
Our calling is still our calling.
Because God knew. Before this hit, when He instilled those big dreams in us, when He set our feet on this path, He knew. He knew this would be part of our lives, and He called us anyway.
He called you. To whatever path He’s put your feet on. Despite that diagnosis or the divorce or the pain or the limitation, despite the hardships and the hurting and the weakness. He knew. And He called. He called us in our weaknesses, knowing He could shine strong through them. He called us knowing each earthly loss can be a victory in Heaven. He called us knowing that the more we have to rely on Him to get through each day, the more we can do for His glory.
What is your thing? Your challenge? Your setback? Your despair? For us it’s diabetes. It is our challenge–but it is not our end. It’s not Rowyn’s end, not today. It’s just one of the things that will shape us into who He needs us to be to do the work He calls us to do.
Last night we had a campfire with my mother-in-law. Rowyn has long been pretty quiet around anyone else, and at our campfires he normally was just eager to get back inside. Last night, he and Nonna were chasing each other around, and he was looking at the stars and pulling up my Sky Map app to see what they were. He was laughing and telling jokes and teasing me. He was also in shorts and a tee, so he did go inside before the rest of us. And my MIL looked over at us and said, “He’s more himself than he’s been in so long. It’s so good to see.”
It is. It’s so good to see Rowyn just being Rowyn, his mood not dictated by his blood sugar–which it had probably been for months before he was diagnosed. It’s so good to see him growing and thriving and dreaming dreams and setting goals. Sure, he rolls his eyes at me when I constantly ask, “You good?” every time he seems a little tired or off. He is, after all, still a 12-year-old boy.
And he has a bright future ahead of him. Yes, this is a disease that he will live with every day until they find a cure. But that’s okay. Because doing the hard things makes us stronger. Makes us better.
We’re clay in the hands of the Potter. Make us and shape us, Lord. Into whatever and whoever You need us to be.