A Second Questionable Pancreas


 

August 2018. That was when our two year old was diagnosed with Type 1 Diabetes. Just like that, we were thrown into this strange new world of insulin injections, juice box battles, and strangers looking at me in horror when I lamented to my husband that our kid was high again. In the blink of an eye, our lives had changed from slow, summer days filled with picnics and sidewalk chalk to shots, finger pricks, and carb ratios. Sleepless nights. Fear. Change.

Just over a  year later, I was diagnosed too. I didn’t see it coming, but the year since has taught me so much about why diagnoses can often be so traumatic, and the value of shared experiences.

A Second Questionable Pancreas

When our toddler was diagnosed, the adjustment was huge, but unavoidable. The days turned to weeks and the weeks to months. Soon a year had passed and we were mostly okay. Exhausted – to our bones – but okay.

A few months later, we were invited to take part in a TrialNet study to assess risk for T1D in immediate family members. We said yes. “For the good of science,” we thought. Consent forms were signed, blood samples were taken, and life carried on.

It was a cool October morning a few weeks later when the phone call came. “Hi, I’m calling from TrialNet. We got the results for you and your husband. Your husband’s were fine!”

…my husband’s were fine? What did that mean?

“Yours were slightly different. We were looking for five antibodies that serve as markers for Type 1 Diabetes. You have two of those antibodies.”

Huh. Didn’t see that coming. “Is two…bad?”

“Two isn’t great.” We discussed Oral Glucose Tolerance Tests (OGTTs) and risk factors, and the rest of the day looked like me trying to convince myself that two out of five antibodies weren’t bad. If someone told me that two apples out of a bag of five were moldy, I’d be bummed, but not crushed. You can still make a pie with three apples. Not a big pie, but a pie all the same.

Then, about three hours later, I got another call. “Hi! So it turns out all your results hadn’t come in yet. We thought they had, but they hadn’t. You actually have all five antibodies. So, um, sorry about that.”

“…Five? As in all of them?”

“As in all of them.”

“Oh.” No pie after all then.

They’d said they’d put a rush on my results as they hoped I’d be eligible for a drug trial for those with antibodies like me, but it wasn’t meant to be. A week to the day after the OGTT, the final call came explaining that I actually wasn’t pre-diabetic as they’d thought. I was just diabetic. Which meant no casual sauntering in the diabetic direction. I’d already arrived. My pancreas was still sort of working, but it was hurtling towards retirement with reckless abandon.

I sat on the sofa in silence. I’d spent the last year quietly reminding myself that all this stress – dosing through the night, carb counting, keeping on top of supplies – was only temporary. The worry would be forever, I knew that, but one day our boy would grow, and he’d be able to take over the reins a little. But now? Now there was no “one day.” This was my forever.

In those first few moments, all I could think of was the loss. The loss of time. Of energy. Of the life I’d pictured. Having to tell my parents. My husband. How crushed they’d be. I thought of all the money we didn’t have that we’d spent on Diabetes so far and how much more we’d need to spend now. Then I thought of my son.

My son has always had all these questions about T1D. How leaves – you know, from trees –  affect Diabetes. How cows with Diabetes say moo. When he’ll meet someone else who has it. He was three, and he’d never met another person whose pancreas was as useless as his. “Maybe one day I’ll have a friend who has “myamedes” (diabetes) too, Mum.”

“I hope so,” I’d said. I’ll admit; this wasn’t exactly what I’d had in mind when I’d said that, but here we are.

Lessons Learned

There were so many hard things about this news, but there were so many positives too. Never again would our boy be alone in this experience. We’d caught this before any real damage had been done. And one of the biggest positives of all? I had time.

I learned that because this was caught early enough, I didn’t need to start insulin right away. I had time to grieve before I had to begin coping with the realities of this disease. With our son’s diagnosis, treatment started the minute T1D was on the table. It had floored us, and now I understood why. The first time round, we had to grieve and learn and cope, all at the same time. There was no time just to digest or to adjust. It all had to happen at once. But not this time.

I’m nearly a year on from my diagnosis now and, as my blood sugars have slowly deteriorated, I have had to start treatment. I’m not on insulin yet, but I soon will be. Nonetheless, I have had this time to process what is happening. This has felt so different to our first time in the ring with T1D. I feel prepared now. I’m not super excited, obviously, but I understand it better. I’m ready.

I’m trying not to waste the days I have without shots or a pump worrying about what will come. I’m eating the cookies, I’m taking my meds and I’m determined to make the best of this.

The day I was diagnosed, I picked my husband up from work with a picnic in our trunk and told him the news. We headed straight to a park near to us, and spent the evening climbing on straw bales, running through fields, and playing tag as the sun set behind us.  Now when I think back to that day, that’s all I really remember. It was a new beginning.

These days our boy loves saying “Mummy, is that you beeping, or me?” He loves telling his friends that his Mama has Diabetes too. He takes pride in putting my Dexcom on for me and checking that it didn’t hurt afterward. It always hurts, because the kid lingers over that button forever, but I never tell him that. I have learned so much about how to handle this disease from him. If he can do it, with his endless determination and laugh that’s pure magic, then so can I.

What makes my heart happiest, though, is that this is a journey that we can now take together, tackling the highs and lows as we go. “I’m happy I have a friend to do this with now, Mama.” Me too, bud. Me too.

WRITTEN BY Collie Crisman, POSTED 08/06/20, UPDATED 08/06/20

Collie is originally from England, but now lives in the US with her husband, two sons, and their terribly behaved (but lovable) golden retriever. She is the parent to a 4 year old with T1D, and was recently diagnosed with T1D herself at the age of 29. She is a compulsive Zillower of farms she’ll never be able to afford, a baker, and an avid (if mostly unsuccessful) gardener. Collie writes about life with two useless pancreases on her blog, “The DiaBeat”, which can be found at thediabeatblog.com.