T1D

This was written about 6 weeks after Henry was diagnosed with Type 1 Diabetes. I think I blocked out a lot of things that were hard and/or I just have been so stressed and busy it's hard to remember everything. But this is what I do remember, and this is what I wrote:


May 13, 2016

I never thought I’d be here. Holding my child down, a syringe in hand, trying to give him a shot in his bum. I never thought I’d be waking him up at two in the morning to check his blood, to determine whether or not I needed to make him drink a cup of juice. When I first held Henry in my arms, my perfect, thick lipped, blue-eyed baby, I never thought I would be treating him for Type 1 Diabetes at the age of three.

We noticed things weren’t right around his birthday. He’d finally gotten over a really nasty virus: coughing, congestion, runny nose, fevers, the whole nine yards. It had been almost two weeks of that mess and at his birthday party, I was still wiping his nose every two minutes. We kept Kleenex in business that month. When those symptoms went away, however, he still wasn’t getting better.  I started to notice him struggling to be my Henry.

He was tired all the time. Instead of the immediate: “Let’s play dinosaurs!” in the morning, it was “Mama, please hold me. Want to watch something?” Instead of running up and down the hill in the backyard, it was “Mama, I just want a rest.” He sat on the couch much of the day, curled up in his blankets, clutching his stuffed bus, begging to watch Cars again. Just something he could do to sit down.

He had anxiety attacks over silly things. Like walking down the stairs alone or going to bed. He had meltdowns over which sippy cup I gave him.

Eating became even more of a struggle. He’s been picky for almost a year, but things got to a new low. Suddenly he didn’t even want his staples. He said no to French Fries for heaven’s sake! In the morning, he didn’t want juice anymore: “just some water, please.” I watched him drink 24 ounces before 11 o’clock, and then several cups more before nap time.

Instead of making it through the night, Derek and I were changing wet sheets two, three, four times before he woke up with another set of wet pajamas at 8:30, even though we were getting him up several times to pee. He was using the bathroom almost constantly. Every ten minutes, he’d run in there and go. I mean really go—lots of pee, he would say. I pegged it on the amount of water he was drinking, and tried to just brush it off.

I took him to the doctor several times. Of course all I knew to identify as “symptoms” was the lethargy and other little signs of what I thought could be a virus (runny nose, etc). I set up a monthly check up to look at his diet, as he was losing weight so rapidly. I could only figure it was because he wasn’t eating well.

Days before his diagnosis, he started complaining that his neck hurt. He couldn’t turn his head to the right. I took him in, they said “give him ibuprofen every 6 hours. If it’s still bad tomorrow, bring him back in.” It was still bad, I took him in the next day, Derek with me. They asked for x-rays. We held him down, screaming, on the table as we took x-rays of his back and neck. It took both me and Derek to hold him still and 45 minutes to finally get what we needed.

He screamed and cried for almost two hours after we got home. Terrified and hurting. He fell asleep crying in Derek’s arms.

Henry’s neck got better, and I thought that was it. But he was still losing weight, quickly. Everyone noticed. Friends, family. They started asking me about him, “is he ok?” “Is he eating?” Nursery leaders and neighbors started mentioning how different he was. Something we, his family, had been noticing for weeks. But hearing other people say it…

And then last Thursday, I held him on my lap for almost four hours, rubbing his back as he puked over and over again. He cried, “I need to throw up!” and would lean over the bowl for several minutes before finally getting a bit of bile up. We’d then hurry over to the sink, rinse his mouth, and try to rest before the repeat.

I was done. Time to take him to the Dr. and DEMAND some answers. I knew something big was happening. I had spent dozens of sleepless nights crying because I just couldn’t figure out what was wrong, and I KNEW something was seriously wrong.

The Spirit was certainly with me. I could feel Him prompting me, tell me that all was not well. That this really was serious. After that evening of vomiting, His promptings got even stronger. “Take him to the Dr. no matter what,” He seemed to say. So the next morning, I called and asked for the soonest appointment I could get with Dr. Harrison. Luckily, they had a cancellation and I could get in at 11:20. I took Johnny to my sister’s house, thinking it would just be for the appointment. But I felt like I needed my mom with me. Another prompting.

So, the three of us went to the Dr. Right as we walked in, I watched Dr. Harrison rush out of the office to go deliver a baby. Great. I had really wanted to see her, not one of the nurse practitioners. They asked me if I wanted to wait. “No,” the spirit said. “Now.” I asked if Melanie, Henry’s favorite NP, was available. She made room.

I began listing absolutely everything that I felt was un-Henry-like. The bed wetting, the anxiety, the sleepiness, the drinking, the weight loss, everything I had been crying over for weeks. My throat started getting tight. Keep it together, Mama.

When Melanie came in after I talked to the nurse, she said: “this sounds to me like we need a blood test. And if it says what I think it’s going to say, then we’re going to send you right across the street to the hospital to have him tested for diabetes.”

After a poke, some tears on Henry’s part, the nurse turned and said: “309.”

Melanie smiled at me. “Ok. It looks like we’re heading across the street.”

I bawled. I did. Right there, holding Henry in my lap with his blanket wrapped around him. I buried my face in his hair and started sobbing. Melanie came over and put her arms around us, my Mom rubbed my arm. “Stop it Mama, it’s ok.” Henry said, pushing me away. “Stop crying Mama.” I took a deep breath. “Ok, baby, I’m ok.”

But I wasn’t, really. Everything I had imagined Henry doing seemed to be covered with a dark blanket. Of course he could still do those things: be a star student, play football, have tons of friends, go on Boy Scout camping trips, but all of them were shadowed by Diabetes now. My boy giving himself shots, perhaps being embarrassed by it, hiding it in the locker room. Having to explain to the other kids. Forgetting to take insulin and getting sick. Everything was now covered with Diabetes.

I took a deep breath and Melanie left the room to call the Pediatric Unit at Utah Valley Regional Medical Center: the same hospital where Henry was born. The nurse got me a drink of water, and Mom held my hand. I called Derek but Mom had to talk to him; I couldn’t speak without crying. He immediately left work and headed to the hospital to meet us.

When Melanie came back, Mom took Henry out in the hallway to walk around for a minute so I could get it together. I don’t remember what Melanie said to me, other than something about Henry living a normal life. She said we’d probably be in the hospital two or three days. Henry and Mom came back in.

“Henry,” I said, taking him in my arms and looking him the eyes. “We’re going to go on a new adventure. Would you like that?” I sucked in my breath. “You know how you haven’t been feeling good?”

“Yeah.”

“Well, we’re going to go over to the hospital, you and Mama and Nana, and we’re going to get you feeling better. Ok?”

“Ok, and blankie can come?”

“Of course, blankie can come. And Daddy is going to come home from work and be with us, too. Ok?”

“Ok, Mama. But don’t cry again.”

Derek arrived as I was checking Henry in. Henry reached for his Daddy, and I lost it again. I was so glad my mom was still with us, she gave me a huge hug. “What can I do to help you?”

“Please, please take care of Johnny,” I said. “That’s all I need, is to know that he’s ok.” She nodded. I gave her a list of things to bring for Henry, too.

We finally got Henry all checked in, and Mom left to go get John from Sam’s house. A lot of phone calls had happened in between this. She had called my Dad, her visiting teachers (who called mine), and she’d called Sam to let her know, too. Sam called my siblings. I just couldn’t even think about any of that stuff. But I’m glad she did. Derek called his parents at some point, too.

We went up to the Pediatric floor, the 4^th floor, and met Dr. Beverly, our admitting physician. They got Henry assigned to a room, 454. It had Captain America and Iron Man painted on the windows. Henry had no idea who they were, but I felt grateful to have some superheroes there; we would need them, I thought.

Henry was ok with his vitals being taken (except blood pressure, I asked them to hold off on that because I knew it would make him hysterical) and sitting on the bed. But he kept asking when we could go home. That didn’t stop for the next 48 hours. We had to wait a while until they were ready to take blood, and Henry wasn’t allowed to eat or drink. Poor thing, he was SO thirsty (something I learned was a sign of high blood sugar). We finally talked to Dr. Beverly who said he could have some water. Thank goodness.

I couldn't help but feel grateful and proud when Dr. Beverly, and the other physicians throughout our stay, told us how early we had caught this and that we had saved Henry's life. While the vomiting was a sign of ADK (Advanced Diabetic Ketoacidosis, severe rise in blood sugar), they said most children don't get brought in until they're already comatose. I can't imagine. While we'd had a hard day, I was so grateful things hadn't reached that level. 

The hardest part of our first day, and our whole stay really, was the IV. It was late afternoon before we finally got it done. We went into a little triage room, just next to his room. The nurses said it’s good to separate the scary things from the room where he’s sleeping. Makes sense. There were a few nurses, with all the stuff ready waiting for us and a lady who introduced herself as someone who would try to help distract Henry. She had bubbles games, etc. I thought “good luck with that” but hey, anything could help.

I held Henry on my lap, chest to chest. I held his right arm down, tight against our bodies, and the nurses took his left hand. And then he screamed. Screamed and cried and tried to get away for what seemed like forever, but, according to the clock, was only 7 minutes. The nurses put a needle in and drew blood. Several vials. Then they put another in for his IV. His poor little hand. They had to strap it down to a little foam thing so he wouldn’t clench his fist and push the needle out. They wrapped that all up and put a sock over the whole mess so he wouldn’t try and take it off.

I felt awful, holding him still while they hurt him. I know they gave him a little local anesthesia, but I also know it still hurt and that he was scared. Oh, so scared. And that was probably the worst part. That me holding him, couldn’t stop the scary. I couldn’t take him home and wrap him up in his blanket and make everything go away.

Once that was over, things got better. They got him on an IV to get him hydrated, and eventually they let him eat. We got him French Fries.

I don’t remember when he had his first bit of insulin, but I know it was that evening sometime. Maybe it was even with his meals. I don’t remember when we first started learning out to do it; that whole weekend was such a whirlwind of education, learning about diabetes, learning how to give shots, learning about blood sugar levels, learning how to count carbs, learning about free foods, learning about what to do if he was really low or really high. I don’t remember a whole lot of when things happened, but I know they did.

Derek and I wanted to start doing things ourselves right away. The next day, we were already giving him shots. We were checking his blood sugar ourselves. We were counting the carbs in what he ate and figuring out dosages. That felt good: to be empowered a little bit.

But most of those 48 hours were holding Henry. We tried to explain what was going on, at least a little bit. We watched Cars, Cars 2, and Mater’s Tales. A few times. We read lots of stories. I helped him to the bathroom with his drip thing in tow (that was annoying). I held him while he took naps. We cuddled up together on the same bed both nights, my arms around him as he cried, telling me he didn’t like sleepovers at the hospital.

There were good things, though. Lots of little hard things, but some great big awesome things. Within 24 hours of being on insulin, Henry already started to act like himself. He felt like doing something again. He wanted to go on walks throughout the 4^th floor. We got a wagon from the nurse, and he wanted to walk and walk. He LOVED riding in it! We put his blankets all around him, got him a diet Root Beer, and walked. He loved seeing the new babies in the nursery and looking at all the different paintings on the windows (especially the ones with Mickey and Minnie and the Minions). Saturday night, we walked for almost an hour and half. Even when Papa and Uncle Dallon came to visit, that’s all he wanted to do. It was such a relief—to see that this was working, that things were getting better.

We tried to make everything fun or at least exciting and special. When we received his kit with the blood glucose checker and stuff, we talked to him about how special it was. How he was a special kid. He loved putting the different colored covers on the “checker” as we called it. He cocked and fired the “poker” a million times. It was a small bright spot for him in what I’m sure was a lot of scary.

We had friends and family send balloons and toys. Nana brought him a set of Cars books and a Mickey with a ToonCar. Grandpa came to visit, so did Jared, Ariel, Sam, Dallon, Nana and Papa. All these things helped make the stay easier for him, which made it a lot easier for us.

playing with the covers

pancakes for breakfast both days. 

The next two pictures are from our first day at the hospital to our last. Just look at the difference in Henry as he sits in that wagon!

There’s not much more to tell about our hospital stay. On Sunday, when we were finally released, I felt such a relief. I was scared, definitely, to have all this in our hands. Could I monitor everything on my own? Could I do this? Six weeks later, I still feel a little scared some days. We’ve met with an endocrinologist, we’ve talked to the diabetic educator, and we’ve been told we’re some of the fastest learning/most capable parents they’ve encountered with a newly diagnosed kid. That feels great, but I still feel like things are out of control some times.

We’ve had nights where I’ve had to get up with Henry and hold him in the rocking chair while he ate a snack. I’ve had to force him awake to take a few sips of apple juice because his blood sugar has dropped so much. I’ve had to hold him down, practically sitting on him, to give him his shots. I hate it. I think I always will. I’ve had to remind him that if he has certain snacks, he’ll have to have some insulin. I’ve seen him weigh the options in his mind. Big choices for such a little boy. Just a 3-year-old.

It’s been hard. It’s been a roller coaster some times. Even sometimes, it’s been fairly easy. We’ve had so many people come out of the woodwork to help us. People offering to take the kids, people bringing us meals, people helping me. It’s been amazing.

But the most amazing? Oh, the MOST AMAZING. Is Henry. His bravery. His desire to get better. The way he holds his little finger out so I can check his blood. And the best part: he’s back.

Running around. Giggling. His curiosity is back. He wants to play. He wants to do. He wants to help. He wants to eat. All the things that were missing, they’re back. Oh, and he’s not wetting the bed either. He stands at his door in the morning, whisper yelling “Mommy! I want to play! Time to get up!”

On the hard days, I go to bed exhausted but unable to sleep from the worry. I try and tell myself that we’re doing fine, we’ve taken control, and we’re going to keep moving forward. But it’s still hard. 

There are many nights when I go to bed crying, wishing and hoping that I’ll wake up the next morning and it will be gone. That the needles, the pokes, the blood on Henry’s fingers, the bruises from the needles, the smell of insulin on my fingers will be gone.

On those nights, I turn over and squeeze Derek and think about our forever family. The covenants we have made. And, most importantly, the sacrifice of our Savior. The beautiful reality that one day, all those things will be gone. That Diabetes will be gone from my Henry. In the resurrection, his perfect, beautiful body will finally match his brave, beautiful spirit. And then I take a deep breath and say the prayer I’ve already said a million times: the prayer of thanks for sending the Holy Ghost to take us back to the doctor. The prayer of thanks for family who have supported and helped us. The prayer of thanks for insulin and doctors and modern medicine. The prayer of thanks for Henry.