Cooper's Type 1 Diabetes Diagnosis Story

On March 3, 2020, a week before the world shut down due to a global pancmdemic and 2 weeks after my grandfather slipped into eternity, my 12 year old son was diagnosed with Type 1 diabetes. 

"That was a memorable day to me, for it made great changes in me. But it is the same with any life. Imagine one selected day struck out of it, and think how different its course would have been. Pause you who read this, and think for a moment of the long chain of iron or gold, of thorns or flowers, that would never have bound you, but for the formation of the first link on one memorable day." 

Charles Dickens, Great Expectations 

I love this quote because it's powerful and its true. We can look at life and see how different things can be one day to the next from just a single event. 

I remember posting on Facebook a week or so before he was diagnosed about how much food he ate for breakfast. I mean, normal preteen boy, right? But knowing what I know now, this sweet boy was literally starving. He had lost 10 lbs and had no energy. And I had no idea.

 

You see, without insulin, your cells cannot absorb glucose which is what we use for energy. So he could have eaten all the yummiest food in the world but it would have done no good. Insulin is the key to unlock the cell. I also noticed that he was chugging ice water out of his new water bottle. Was it that he was so thirsty? Or was it the fancy new water bottle he was enjoying? I remembered a friend talking about her t1 daughter being super thirsty and that's how they knew. But I only entertained this thought for about 2.5 seconds and quickly got rid of it. Nope. Not my kid.

In hindsight, I feel guilty about this. I remember turning my attention onto other things. But what good would it have done if I'd caught on a week earlier? If I'd listened to the Holy Spirit nudge in my momma heart sooner? Not too much. It was unstoppable. 

 

So we piled into the minivan and headed south on our annual trip to Manteca, California. We're a family of beekeepers and it was pollination season. We met at In N Out with the cousins and enjoyed a burger and a milkshake. We had everyone go potty before getting back into the van. Not 10 minutes later Cooper was dancing in his seat saying he needed to pee. BAD. So we pulled over onto the side of I-5 so he could go. I looked at all the empty water bottles on the floor. I watched my son walk around the van and crawl back in, and it clicked. My heart sank. Leaning over to my husband in the driver seat I whispered, "I think Cooper has diabetes." 

Understantably, he brushed me off as being a little dramatic and maybe just too worried as moms do on occasion. I sat there, stunned. Letting the thought sink in. And I just knew it to be true. I knew. I texted the same friend I mentioned earlier with my hunch and we discussed what should be done. We needed to know his blood sugar. That would tell us. We kept driving south and I tried not to Google, because I knew this was something we did not want. 

I remember stopping at a Starbucks for coffee and another large water for Cooper. I even snapped this picture to document the day I knew his life would be changed forever. 

We stopped at a disc golf park to let all the kids run around and get some energy out. I told my sister in law, Christina, my suspicion and there was a solemnity in the air. I ended up having to carry Cooper because the poor child had peed out all of his electrolytes and was getting foot and leg cramps. I was on the phone with Kaiser trying to figure out what to do and where to go because we were in California. We live in Oregon. They gave me an out of state pin number to use at emergency, should we need it. 

We dropped everyone off at the Chinese food restaurant and while they ate, Ben and I ran to CVS. We actually had to go 3 times because we had zero idea how to purchase diabetes supplies. I mean, why would we know?! Test strips. They should come with the tester. Yes? Anyway, we eventually got everything we needed and when we got to the airbnb we told Cooper. He's such a calm and quiet child, I didn't want to alarm him. But how can you say we need to poke you and see what's in your blood without sounding alarming? 

"Cooper, mommy thinks the reason you're not feeling good and why you're so thirsty is because you might have extra sugar in your blood. I need to give you a tiny poke in your finger, just like a bee sting without the sting part and get a drop of blood, ok?" 

Of course he complied. He is my easy going, gentle kid. But, I realized I had no idea what I was looking for. What number was good? Bad? Normal? After texting my friend again she said anything over 200, you should be concerned. Over 300, head to ER. 

I poked. He bled. I cried. 

"HI" is what it read, because it won't read over 500 on the glucometer. I called my friend and told her. She said, "Oh, honey. I'm so sorry. You need to take him in." 

Modesto, CA. The hospital was a little sketchy. There was garbage on the floor, there were drunks in the hallways, the doctors were stressed. They asked why we were there. I told them my I thought my son was diabetic. They looked confused. 

People don't usually catch Type 1 diabetes like this. They end up in DKA or are really, really sick. We were on our way there. I don't know how long it would have taken but I'm so thankful that by the grace of God, we caught it. 

The doctor came in with a syringe of insulin and injected it into my perfect, otherwise healthy child. That was hard to watch. But we remained calm because Cooper was calm. 

Typically, children are admitted to the hospital upon diagnosis because it's a lot to learn. You go through education and training over a period of a few days with nurses and doctors and dieticians helping you. But we were not. We were out of state. So after several hours dealing with the pharmacist, insurance and the doctor, we got a prescription for 2 types of insulin and syringes and test strips, emergency glucagon pens and keto test strips and we had no idea what they were all for. 2 huge bsgs. It was overwhelming. We were made an appointment the next morning, 4 hours later with the ONLY endocrinologist in the area who just "happened" to be in the hospital for this single day. I don't even remember his name. 

While our world seemed to be falling apart, God was there through it all, paving the way forward. Providing what we needed, just in time. His perfect time.

With little sleep and in what seemed like a daze, we attended the appointment with the doctor, dietician, social worker and nutritionist. They showed us food portions, spoke of grams and units and carbs and mathematical equations. They assured us it would make sense at some point because we looked as though we'd been hit by a truck. 

We went back to our airbnb and it was like we'd walked out of what we'd always known as normal and right into someone else's life. Cooper swung in the hammock contemplating his new reality and we talked with and trained the family on the little knowledge we'd been given in the last 24 hours. Everyone was nervous.

The basics were these:

Cooper didn't do anything to "get" or "catch" diabetes. The beta cells in his pancreas decided to stop producing insulin. It's considered an autoimmune disease. He will never heal unless God heals him supernaturally. He will always need insulin shots to eat food. Forever. If he doesn't have access to insulin, he could die of DKA and/or organ failure. If he has too much insulin, he could die of severe hypoglycemia and coma. This was not his fault. He did not eat too much sugar. That is a cause of Type 2 diabetes. That is most often a lifestyle which leads to disease. This is much different. This is our new normal. 

I have a hunch, just as I did with his illness, that the large doses of antibiotics and immunizations he had as a small child contributed to his illness. I have zero ways of proving this and it doesn't even matter at this point. But sometimes you just know things. 

I was scared to let him eat. I was scared to let him sleep. I was scared to sleep. I was scared. 

I'll do another post sometime talking with food and type 1 diabetes because I do not agree with what is taught in the hospital. Let them be kids, eat whatever they want and cover it with insulin. That is a train wreck waiting to happen and, it does. There need to be safeguards, and we're still learning. Stay tuned for that. 

We connected with an almond farmer friend and he offered to let us come shoot some guns. Cooper was the most excited. I think he needed to blow off some steam. 

And so did mom...

After returning home it seemed like everything was in slow motion. Every day, we looked for the wins 🦄

And still, almost 2 years later, we learn. Every day, we pray. Every day we watch and count and remind and beep and charge and pack snacks and order supplies and, we thank God that Cooper is capable of living a normal, healthy life with medicine, proper nutrition, equipment and education. If Cooper had been diagnosed 100 years ago, it would have been a death sentence. Exogenous insulin had not yet been discovered. Children starved to death. 

(this photo was taken on our way home from California in the In n Out parking lot. The same one we visited on our way south just before our revelation). 

Today he's 50 lbs heavier, inches taller, a million times sweeter and forever my hero. He has faced this last 2 years with bravery and with little negativity. He's such a good example for all of us. He uses the Dexcom glucose monitor, the T-Slim insulin pump from Tandem and loves bacon and eggs. He rides dirtbikes and skis with his dad, he goes to church camps and manages his own blood sugar just fine. 

I'm confident that Cooper will have challenges. Won't we all! I'm also confident that Jesus is with him always. I'm confident that we have a hope that is beyond physical health and a prosperous life; that we have a hope eternal through Jesus and trust in Him alone. While we pray for healing here on earth, we pray MORE that our children will give their hearts to Christ and live lives worthy of the calling we have received, whatever obstacles might be in our paths. To God be the glory. 

"Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.

Romans 5:3‭-‬5 ESV

Character, hope, endurance. Yes, Lord. Let it be so in all of us, whatever comes our way.

I probably forgot a lot of important parts. So if you were there or walked through this with us, feel free to comment. I want this to be like a journal entry we can remember always.