It’s Been a While and a Lot Has Happened Part 1
October 17, 2024
Type 1 diabetes, a 4-day stay in the ICU/hospital, sobriety, and more…
In July, we never had enough ice in our freezer. It was frustrating. Our 6-year-old, Wren, was constantly filling up her water bottle and using up all the ice. “Wow, you’re a thirsty girl today!” we’d say to her, and we’d move on. Sometimes we’d question her whether she had poured her water out, or played with the ice, and then we’d move on. Work was busy, the older 3 girls were in a play, our 14-month-old had taken to mobility with destructive gusto, life was busy. Then one night my wife Lindsey and the older girls were at a late play rehearsal and I was alone with Wren and the baby. I decided to make the night special and bring them to the only Mexican restaurant in our tiny little town. While there, Wren ate most of the chips and bean dip, begged to order from the adult menu and ate most of that, and she ate half of my fries. She also kept getting her water refilled. I calculated it later and realized she had drunk close to 80 ounces of water since I had gotten home around 5:00 PM. Then once we got home, she ate 2-1/2 granola bars (keep in mind, this is a tiny 50-pound 6-year-old). She was in great spirits and was THRILLED to brag to her sisters that she got to go to the Mexican restaurant and that Daddy let her have multiple granola bars after dinner. She helped me put the baby to bed and then, because the girls weren’t going to be home until late, I let her sleep in our bed. Late that night, in a quiet house with Wren peacefully asleep between us, I discussed with Lindsey how much she had consumed that night. Lindsey said that she had noticed it too and it had been worrying her, but it hadn’t gotten to the point where she’d said anything to me about it. With me sharing what I had observed, she immediately got super worried that something was wrong. I wasn’t too concerned, as is usually the case for us. However, we have a rule in our marriage when it comes to health matters: Lindsey avoids looking things up because it makes her too anxious, so I handle the research. And I’ve promised to take whatever I’m researching seriously and look into things thoroughly, even if I think it’s nothing. And over time, I’ve actually gotten quite good at researching health things. I’m currently something like 14-for-14 in correct armchair-diagnoses.
The next morning, I left the house early to work on a project I had only started the day before. I had just pulled out my computer when Lindsey texted and asked if I could research what was going on with Wren. I told her yes, but was annoyed at the interruption and hoped I could research quickly, so I could confidently tell her it was nothing and get back to my task. Within a couple minutes I realized I couldn’t in good conscience say it was nothing. Excessive thirst (and appetite) immediately pulls up page after page of type 1 diabetes stuff (let’s call it T1D from now on). Having no idea what T1D was, and having had 11 blissful years of completely healthy children with healthy pregnancies and births, I still thought it was nothing. I texted Lindsey telling her that, but also said that I’d call the doctor today and get an appointment, and I requested that she fully document the amounts of everything Wren ate and drank.
Once the doctor opened, I called and pushed the option to set up an appointment (now I know better: I should have pushed the option to speak directly to Wren’s doctor’s nurse). I spoke to a nurse I didn’t know and explained everything, and she said, “Drinking too much isn’t cause for concern, so we’ll set up an appointment for next Monday.” Monday was 6 days away. (I’ll jump ahead quickly and say that my doctor and my doctor’s nurse were HORRIFIED that this happened. That should have never happened.) I texted Lindsey that I had “taken care of it” by setting up an appointment next week, and got back to work. But there was a buzzing voice in my head telling me that I shouldn’t wait that long. At the same time, there was another voice telling me, “That was a nurse, she knows more than you,” but thankfully the 1st voice was louder. So I texted my uncle, a retired family doctor who has always been more than willing to answer questions.
We texted back and forth, and he confirmed that I shouldn’t wait 6 days for an appointment, but also wasn’t being super alarmist at that point, so I (again trying to get back to work) said, “Okay, I think we’ll plan to keep track of exactly how much she drinks today for sure and then decide if we’ll call our doctor in the morning tomorrow.”
He responded with, “That sounds reasonable, but I don’t want you having to go to the ER at 3 AM😱”
“Wait, what?!?!!!” is what my head said, but I responded with a calm, “Meaning, do you feel like we should try to go in to the doctor today?”
His equally calm response: “I don’t know because I have not been there to observe… It would be nice if you had a way to check her glucose.”
It was getting near the end of my work day and I hadn’t gotten much work done that afternoon and I was feeling annoyed about it. I had already put in another call to our doctor (this time directly to his nurse) and had left a voicemail. I’d like to think if I was a single dad that I would have been wise enough to keep pushing on this and not just leave it where it was. I think I would have… I’m actually not sure. But I knew without a doubt that Lindsey wouldn’t be okay with me just coming home like it was a normal night, having not heard from the doctor, and waiting until the next day to call them again. So I thought: “Surely CVS has something you can buy to check glucose. And wait, what even is glucose and how do you check it?”
(FYI: blood glucose = blood sugar).
Turns out, you can buy a blood glucose meter for pretty cheap! (I also learned later that you can go to many fire stations and they’ll check it for free). So I left work at my normal time and grabbed one on the way home. Lindsey and the older girls needed to leave to go to another rehearsal as soon as I got home, so I parked before our house and read the instructions quickly so I could do it right away when I walked in. You have to poke a finger and get a drop of blood to test blood glucose levels.
I came in acting all chipper and my normal self and was like, “Hey Wrenny, I need to do a quick test where I poke your finger, can you come here a minute?!” Looking back, her lack of resistance to my request, as a 6-year-old who has no issue resisting anything at any time, was a good sign that she had started to go “under” and was getting dangerously ill. At this point I was still fully convinced it was nothing at all and that this just needed to be ruled out. I was doing this because it was the wise thing to do, but there was no way my sweet little girl, who had a completely natural birth, eaten mostly organic food, breastfed until she was 3, and whose favorite food is tomatoes could have something wrong with her.
Before coming home, Lindsey texted that she read that anything over a blood glucose level of 200 is too high (though, knowing more now, if you don’t have diabetes and you read at 200, you might have diabetes). We had also discussed that she would take the baby with her to the girls’ rehearsal if I had to bring Wren in anywhere.
So there I am, in the kitchen, the rest of the family is loading up the car for rehearsal, about to leave me with Wren and the baby for a normal night at home without them. I put the test strip in the little device and poke a suspiciously compliant Wren’s finger and dab the blood on the test strip. I pick up the baby fussing at my feet while I wait for the reading. The device is reading the sample: … … … … … 520.
My whole world stops. Wait. It’s nothing. It was supposed to be nothing. This is my perfectly healthy beautiful little baby. My wild and vivacious little girl. The redemptive little blessing that helped us through the heartbreak of a failed adoption. Diabetes? What even is diabetes? It’s nothing, right? And this doesn’t necessarily mean it for sure is diabetes, right? Why don’t I even know what this thing is that I’ve heard a thousand times? Type 2 diabetes is the insensitive brunt of 1,000 weight jokes on TV and movies, but what is type 1 diabetes???
Full disclosure: I cry whenever I think about this moment. And DEFINITELY when I write about this moment for the very first time like I am right now. The crumbling of my confidence that she’s just fine. The moment everything, literally everything, changed for us. But I still didn’t know any of the implications at that point.
Wren has already walked away by now. I show the number to Lindsey. She snaps out of anxiety mode and immediately switches to responsible parent mode, grabs the baby from my arms, says calmly and quietly to me, “Don’t forget Ellie, her shoes, or her water bottle.” Then she yells to the older girls, “We’re leaving now!” and walks out the door.
Wren is playing quietly in a large box by the front door. It’s a large enough box to have a little door in it and she’s in there drawing. Again, looking back I realize that she’d started to go downhill… she was almost completely silent in the box, which is unlike her. I walk into our bedroom and call my uncle to tell him the glucose reading. He confirms what I already knew: “You need to go to the emergency room right now.” I start crying on the phone with him. He’s very sweet to me, but I can sense his urgency and I get off the phone quickly.
I start to gather Wren’s things. Ellie, her stuffed elephant. Matching shoes, ever hard to find. I fill up her water bottle with ice and fresh water. I can still feel the feeling I had walking around our mostly silent house. It was a quiet and a calm that somehow felt oppressive and terrifying. Knowing that I held knowledge I had yet to share with this little human who trusts me implicitly, and who is thinking we’re having another night at home, eating food that Mommy doesn’t let her eat, and sleeping in Mommy and Daddy’s bed again. I’m crying again as I write this.
And the fear, oh my gosh the fear.
One quick aside that I will quickly share: I am sober. More than a year now. But over the previous 20 years or so I’d done an excellent job of numbing hard feelings, especially fear, through addiction. I’d also done a really great job at hiding my addiction. But I am now sober. All of THAT is the subject of another blog post. But the reason I bring this up is because feeling real, true, deep-in-your guts fear is new to me. And sobriety is still new enough to me that some strong feelings can come and it’s like they wash over my entire being (or burn through is maybe a better metaphor) and every single atom of me wants to run away. Or numb, numb, numb it.
But I had a 6-year-old whose life literally depended on me. I couldn’t let it take me over, but I also knew I couldn’t pretend it wasn’t there. I walked downstairs and put all her things on the table and squatted down and said, “Hey Wren, baby? I actually need to bring you to the hospital. When I poked your finger it showed that you might be a little sick.”
“I’m not going. You can’t make me.” And she started crying, with defiance in her eyes.
This part is too hard. I will keep it short because it hurts me still. I’m a 215-pound bearded man with a wife and 4 daughters (and our 17-month-old little buddy boy as well), so I’m very, very conscious of trying not to make them ever feel physically scared of me or overpowered by me or anything like that. I stop tickling them immediately when they say stop. I put them down immediately when they say put me down. Without exception. But I had to get her to the hospital. And that meant pulling her, as gently as I could, but forcibly all the same, with tears streaming down my cheeks, out of her cardboard house and into my arms, out the door and into the car, buckling her into her car seat, while she screamed and fought me with everything she had, clawing at walls and doorways. It was awful.
We picked Lindsey and the baby up from the Opera house where the girls had their play rehearsal, and we drove the 40 minutes to the hospital (we live in a small rural town with no emergency room or hospital). And a fun fact: If you ever want to skip the lines in an incredibly crowded E.R., just tell them your blood sugar is 520 and they’ll whisk you right back real quick.
This blog post has gotten too long, so I will wrap it up and write more later. I will say what happened though: Wren was indeed very, very sick and spent the 1st night and day in the pediatric ICU, before moving to the regular hospital for 2 more nights. Her body was breaking down without any sugar being converted to energy and it would have been incredibly bad and damaging to her body if we had waited any longer. Deadly if we had waited too long. Lindsey stayed with her the entire time. She was diagnosed with type 1 diabetes, which requires constant monitoring (or she could die), fastidious control of what she eats and drinks (or she could die), and at least 4 injections of insulin every day (or she will die), along with hundreds of finger pokes since we left the hospital, and an electronic glucose monitor worn on her arm with a wire under her skin that we have to change out every 10 days. She’s doing incredible. It has been the hardest, saddest experience Lindsey and I have experienced. The adjustment to our life to be able to properly care for her has been huge and exhausting. But we still are deeply in love with each other, our girl is doing great, and so is the rest of the crew. So we thank God for that.
(Edited to add: Our doctor’s nurse did eventually call me back, when we were on the way to the hospital, to tell us to go to the E.R. immediately. I should have just called and talked to her first thing in the morning.)