A family's journey to the new 'normal'

20 Sep 2022

Alyssa was only 8 years old when she was diagnosed. What followed was a massive adjustment on how to manage Alyssa’s type 1 diabetes (T1D) and finding their new version of ‘normal’. Alyssa, along with her entire family will be participating in the JDRF One Walk Step Challenge in October, to support the research into prevention, better management, and a future without T1D.

Her mother, Linda, shares her T1D journey with us.

Tell us about when Alyssa was diagnosed, and how that impacted your family. 

When Alyssa was diagnosed it was a Monday.  I remember the day because she wasn't quite right on the weekend, and my husband and I knew that something was wrong. We should have taken her to see a doctor right away, but we didn't think it was urgent. We took her to our GP on Monday morning, and he ordered some tests. Alyssa said she felt fine, so she was cleared to go to school. That afternoon, I got a phone call from the GP advising that we needed to take her to immediately to the  emergency department at the children’s hospital.  I drove to the school, and collected Alyssa, and drove to the hospital. When we got there the staff were waiting for us as our GP had already phoned ahead.  Alyssa was connected to an intravenous drip, and the Dr’s were doing numerous tests to determine what was happening. After a stressful long wait, we were advised that Alyssa had type 1 diabetes.

What happened next was a bit of a blur.  Over the next few days and weeks, we learned that this diagnosis is forever - there is no cure. The management of type 1 diabetes requires your attention day and night - at the time of diagnosis we had to wake up at 1am every morning to check Alyssa’s blood sugar levels. Things that were easy became a challenge. We had to work out carb counting for each and every meal, how to manage her sport activities, and there was also the challenge of returning Alyssa to school where they didn't have an understanding of type 1 diabetes. Alyssa also didn't like to have her insulin injections so that was another obstacle to overcome. It took quite a while, but our family eventually found our new version of "normal." We went back to all the same activities that we did prior to her diagnosis; it just took a bit more planning and preparation than before.

What advice would you give other parents whose children have recently been diagnosed?

To families with a recent diagnosis, things are hard at the start. You've got so much to learn and manage so just go easy on yourself.  Reach out for help if you need it. Your medical team knows you're no expert in this, so contacting them is expected. Be honest when talking to the medical team, if your family is struggling, they can assist by referring you to professionals to help. Be kind to yourselves as everyone in the family is going through a state of upheaval, not just the person with the diagnosis. Most importantly, don't beat yourself up if you get things "wrong." Type 1 diabetes can be unpredictable from one day to the next, so celebrate the wins and don't stress about the bad days. If you're right at the start of your T1D journey, I can assure you that things do get easier, but it does take some time.

Why do you believe research into T1D is so important? 

I believe that T1D research is incredibly important because I would love for there to be a cure. I would love Alyssa to walk through the door one day and tell me that she used to have type 1 diabetes. I also think it's important to prevent other people from being diagnosed. If it can be prevented, then surely that's better than a cure. I also love that research has improved the quality of life that my family has. Instead of setting an alarm for 1am, like when Alyssa was first diagnosed, we often get to sleep through thanks to CGMs. People that aren't sleep deprived make much better parents and as a result we are a far happier household. Every little bit helps so whether the research is into prevention, better management, or the ultimate cure, it is all crucial.

Why are you participating in the One Walk this year?

Our entire family is taking part in this fun wonderful event! It’s a wonderful way to raise funds for T1D research and enjoy the fresh air and exercise as a family. 

I encourage everyone to register and give it a go!