Pancreas in the Game — Becky’s story

I’m one of Tidepool’s Quality Assurance Engineers. My job is to look at what features are being implemented and try and make sure they’re working the way they’re designed.

It’s my responsibility to think about how people use our software, sometimes in extreme situations and scenarios, and thoroughly test everything. To those who may say I have an uncanny attention to detail: thank you! I just say it comes with being a parent of a child with diabetes!

My daughter Deanna was diagnosed with type 1 diabetes when she was eight. We were trying to buy a new dryer at the store and I was carrying a water bottle with me at the time. When the water was finished, she was so thirsty she just sat down on the floor crying.

Later that day, we went to an amusement park and we literally stopped at the bathroom after every single ride. I knew this wasn’t normal, and we needed to take her in for a check up. So I called the pediatrician and they kind of rolled their eyes at me when I said I wanted to bring my daughter in for a urinalysis, but they scheduled the appointment for 2:00 pm on a Friday.

I brought her in and within 30 seconds of putting that little cup in the cabinet, they came in with a blood glucose meter. I was looking over the nurse’s shoulder when the BG reading displayed and I knew that things were never going to be the same. As a former national ski patroller, I knew a little bit about diabetes. I used to carry around a tube of frosting in my first aid kit, so if I found someone unconscious on the snow with a diabetic med-alert bracelet, I could just stick the frosting in their mouth without worrying about choking hazards. I also studied marine biology in college and did research in a lab, so the experience of giving injections wasn’t totally new either. Although there’s a big difference between giving injections to a rat and giving them to your daughter.

Because it was a Friday afternoon, we were admitted into the hospital at Stanford and as it happened, our doctor was also living with type 1 diabetes. The doctor was fabulous — she showed Deanna her insulin pump and talked about her own diagnosis and what it was like going away to college with a CGM. It was the most amazing thing that could have happened to us to have her as our doctor.

I feel like we’ve been extraordinarily lucky. In large part because of Deanna’s own outlook — she is a really avid reader and went through the Pink Panther book on diabetes herself. She’s also very independent and stopped letting us give her injections about a week into her diagnosis because she wanted to do them on her own.

I organize monthly meetups for diabetes families in the Bay Area — the South Bay Carbs in the Park — which means I’ve been involved with trying to help people who have been newly diagnosed a lot over the past few years. Being able to share my experiences with newly diagnosed families is amazing, and powerful, and important, and it unites us in a special way.

When you’re starting out, diabetes can make you feel isolated — I think all of us have had nights where we’ve broken down because we’ve had to override an insulin pump five times in one night, and you know from experience that’s what you need to do to bring down the persistent high, but there’s an emotional aspect of “what if” to it. What if, this time, that wasn’t the right thing to do? What if, this time, I hurt her?

Everyone has that at one point or another. Everyone is going to go through that middle of the night “why?” or “why me?” And while there isn’t an answer to that, there is this aspect of community and banding together with families who are going through similar experiences. We can support one another and recognize that while these times are very difficult, our families can be stronger for them. Our children can be stronger for them. As a community, we can be stronger for them.

I remember shortly after Deanna was diagnosed — just before she got her first pump — there was a little girl who showed Deanna how to change her infusion set and walked her through all the steps. Deanna has now done that same step-by-step walkthrough for three or four other kids when they were about to get their first pumps, and it's something I’m really proud of. It’s a small example of how paying it forward is so important to the diabetes community.

— Becky Cooney. Quality Assurance Engineer.