One of the questions we get asked most is, “how did you know?”. Interestingly, I’ve never met a parent of a child with type I that hasn’t told me their 'diagnosis' story. It seems to be a right of passage. I’ve avoided telling our story on the site so far... But today I think I’m ready to share.
Arden turned two years old on July 22nd 2006. A few weeks later she had her two year well visit with our pediatrician. Everything looked great, she got her immunizations and we went home. The next day Arden seemed sick, she had a slight fever and was lethargic, I assumed that was from the inoculations. When she didn't get better after a few days I took her back to the doctors office. Arden was then diagnosed with Hand, Foot and Mouth disease (HFMD). A common illness for infants and small children. What was strange about the diagnosis was that she already had HFMD previously and it’s supposed to be one of those things you get once and then build a natural defense against, like chicken pox.
I was really hoping she would start feeling better fast because we were leaving for a family vacation in three days and I wanted Arden to be able to enjoy the beach.
Arden had been urinating more then usual for about a week, not in frequency but volume. I attributed this to her recent switch from bottles to cups, as she was drinking more and it just seemed to make sense.
The next day I realized that I couldn’t remember when her last bowel movement was. Later that day she finally had one but it was dry, actually crushable, like dirt that was barely held together by moisture. That is when I started to really worry, I called the pediatrician and we agreed that she was dehydrated from being sick and that I’d begin to push liquids. This moment is the first time I failed as Arden’s father, I never mentioned to our doctor that she has been urinating a lot and to this day I don’t know why. I’ve thought back over that moment a hundred times, how did I not see that it made no sense for her to be urinating that much while her BM was so dry? If I could have just connected those dots in my mind, I’m positive that would have been the day Arden was diagnosed. But I didn’t, so it wasn’t.
We were leaving the next day for Virginia Beach. The HFMD had run it’s course and we were getting her to drink more liquids so I was hopeful that she would be feeling better very soon - we packed up the car and headed to the beach.
I know for sure that we were an hour from the beach house when we stopped for food. Arden was very hungry (which I thought was a great sign that she was feeling better). About an hour after the food we arrived at the house, she had urinated so much that it soaked her diaper and the cushion of her car seat. I remember really starting to worry about the urinating for the first time in that moment. We unpacked and tried to relax, we had just finished a fairly major renovation to our home. The contractor’s part was over and we were going to do some of the finish work ourselves. Our plan was to relax and rejuvenate on this vacation and then go home to finish our construction. But a new plan was just over the horizon, one we didn’t know anything about and it was coming in three days.
Over the next two days, Arden was ravishingly hungry but still very sick. She hadn’t had a bowel movement since Friday and her now frequent urination had not decreased in volume. I could see she wasn’t getting better, sicker even and I stopped taking her outside. We spent our days in the house, she slept so much in hindsight I know now that she was dying.
On the third day I felt so bad for her that she was missing the beach, so that afternoon I took her outside so she could see her brother playing. She just stared expressionless at Cole, the beach and the ocean. She didn’t smile, ask to be put down or even seem to care that the ocean was right in front of her. So I took her for ride in my truck so she could fall back to sleep.
Later that evening Kelly and I took Arden to a nearby nature reserve to see if the cool evening air would make her feel better. That is where I took some photographs that I’ll never forget, a few were of the amazing sunset and the rest were of Arden. They are the last pictures we have of her that she isn’t 'diabetic' in. Standing in front of that sunset is last time I remember a world that didn’t include all of this.
A few hours later at about 12:30 am I remembered that I meant to tell Kelly something the day before but had forgotten. We were all sitting around this huge table playing a board game. Kelly’s entire family was there, parents, brother, sisters, in-laws, nephews, nieces and cousins - sixteen of us in total. I looked across at Kelly and said, “I’ve been meaning to tell you that Arden’s breath smells funny, metallic or maybe sweet”. In that instant Kelly’s face seemed to almost slide off of her skull and her reaction made me realize what I’d been missing the last few days. Kelly knew in that instant and now I did too. Arden has diabetes.
We checked online for the symptoms. Arden had all of them though we couldn’t verify her blood glucose level. I spent the next hour driving around Virginia Beach trying to find a twenty-four hour pharmacy. When I returned we poked our first hole in Arden’s finger... and then we we drove to the hospital. I know Kelly and I must have been thinking the same thing, “not diabetes” but we didn't say very much to each other, I think now that we were in shock.
We were at a red light on a deserted road, sitting silent, scared out of our minds. I turned to Kelly and said, “Arden has diabetes. I know you’re scared and sad, so am I, but this is one these moments that we have to be strong for her”. She nodded, the light turned green and we didn’t talk about it again.
Soon after we checked into the hospital a doctor tested Arden’s blood glucose... it must have been 3 am by then. He and the nurse left the room and we sat there holding hands and staring at Arden as she layed on that cold bed. A few minutes later a man we never met before was telling us how our lives had just “changed forever”. That there was “currently no cure for type I diabetes” and they needed to take Arden away to stabilizer her. Kelly and I passed out in a tiny room down the hall from where they were working on Arden. They woke us up around 8 am, I went back to the house to check on Cole and Kelly sat in a chair with Arden on her lap the entire day. Tubes coming from everywhere. She never got up, never went to the bathroom, never ate - I knew that I married the right girl that day.
Over the next four days in between the crying and staring we learned as much as we could about type I diabetes and how to give Arden the best and longest life possible.
Now today, over eighteen months later. I am no less scared or concerned, just better prepared and better at lying to people that ask me how I am. Arden’s diabetes doesn’t stop. Not because it’s 3 am, not if it’s my birthday or hers. Not because we are exhausted or because Arden asks when she won’t have it anymore. I don’t do anything before considering how it will effect Arden’s blood glucose. A timer runs in my head from the moment her last injection. What was her BG the last time, what has she eaten, is it hot, has she exercised, what will he BG be next time I check, is she going to have a seizure, will she loose her sight, the feeling in her limbs, will her kidneys fail, will she develop heart disease? The soundtrack of my mind.
Once in a while I think about that sunset. Every now and then I can do it, I can get to it for a moment. I feel the sun and that carefree feeling of being on vacation with my family. That day is Arden’s Day to me, it’s the day I remember most fondly and the day we are striving to get back to. The last day Arden was just Arden and not also a child living with type 1 diabetes.
That’s how we found out...
Written late 2007 - early 2008
Thank you for reading Arden's diagnosis story...
I launched this blog in 2007 hoping that it could help parents like me. My goal was to share our life with type 1 so that your day might be a little easier. Inside you'll find over a thousand posts; stories of living, type 1 news, technology updates, descriptions of how we've lowered Arden's A1c, use an insulin pump and Dexcom CGM, and my podcast for people who live with or love someone with type 1 diabetes. Everything you read here was written by me. I'm Scott Benner, a 17 year stay-at-home dad, author of a parenting book and type 1 diabetes advocate for over a decade.
Below are links to just a few of my recent posts. It is my sincere hope that you read something on Arden's Day or find a post on my Facebook page that will help. Many people say that listening to the Juicebox Podcast is a wonderful way to begin - maybe you'll even find a way to get some much needed sleep! My best, Scott