Costantini Family November 2021 - L) Stacey & Ivy R) Adam & Georgia
Ivy, Georgia & Chilli
Hi and thank you for visiting our page.
My name is Stacey, and my husband is Adam and we have two beautiful daughters, Ivy and Georgia (aka Georgie/Gg)
In 2019, Georgie was diagnosed with type 1 diabetes (T1D) at the age of 10 months old. We had no family history at the time and without either of us having known anyone with type T1D, the diagnosis was a huge shock to the system and the biggest learning curve we have endured in our entire lives.
28th January 2019 will always be the worst and best day of our lives as we nearly lost our daughter, she was in a severe DKA state when we presented at the ED, but we will forever be thankful for parent intuition, as if we had listened to the locum, we would have gone to sleep thinking rest was all that was needed for our little girl, and she most likely would not be here today.
Since this life changing day, we have been on a constant learning journey in how to think and act like a pancreas (and are still trying to master this organ).
We call ourselves 'new age parents' in this world of diabetes, as we were extremely lucky to leave the hospital after diagnosis with the assistance of an insulin pump and Continuous Glucose Monitor (CGM). Technology has given us the ability to manage Georgie's blood glucose (BG) levels more precisely and the CGM has been nothing short of a miracle. This piece of technology enables us to have ongoing insight to her BG levels that allows us to make decisions preemptively, reduce some of the stress and anxiety involved in caring for a little one with T1D and allowing us to get some much needed and essential sleep, to keep on the good fight of being a pancreas!
The journey is not easy. As anyone who has T1D knows, and any family and support person of a person living with T1D will know, this condition is so very complex and individual. What works for us, won't necessarily work for the next person. But amongst the chaos that T1D can throw into the mix of life, we have vowed from day one to not let diabetes lead our lives, instead it comes along on the journey with us.
The mental and emotional impact this condition has on people living with T1D and their support network can be very overwhelming. As seen by many great T1D influencers and current campaigns run by different organisations, it is imperative to take care of this aspect of the condition, as it unfortunately carries such a burden that it can increase the incidence of depression, anxiety and food related mental health issues.
This has always been at the forefront of our mind for our Georgie. How do we help take on some of this burden and reduce it where we can?
Initially being so young, providing a positive and truthful dialogue about what T1D is and why Georgie requires assistance from her devices was key. We were also then thrown into a unique situation when Adam was diagnosed with LADA (Latent Autoimmune Diabetes in Adults) in 2020, this is also referred to as Diabetes Type 1.5.
A silver lining is that Georgie now has a direct relative who she will grow up with and see someone else who also requires insulin, has doctor appoints and requires more planning in his day, but is still doing everything he used to do.
But as Georgie entered kindergarten in 2022, we faced the puzzling questions from other young kids.
I remember Georgie coming home one day looking upset and when asked why? she told me that one of her kindy friends was asking about her sensor (CGM) and poddy (Omnipod) and she told me with such conviction that she told them what it was, but they didn't know what she was trying to tell them, and it really upset her.
Heartbreaking to say the least, that no matter how much we foster a positive environment, and we provide Georgie the knowledge needed to understand T1D, unless she meets a child her age who has direct connection to T1D, majority of the peers she will come across in life, will have no idea what T1D looks like (no blame, as we were the same!)
This led me to try come up with a way to help Georgie provide enough information to her peers, without overwhelming them with medical jargon and really answering their questions, which for young kids these questions simply come from physically seeing the devices that Georgie wears. The question of 'What is that?!'
In the days after this, I started to write Georgie a book about her. We are a family who loves a book at the end of the day, and I felt if we have the kindy / school read the book to the kids, this would promote a natural discussion and the kids could have their questions answered in a learning environment. There are many T1D books out in the market, but the majority are aimed at the adolescent years, heavy on the biological makings of T1D and not overly relevant to today's ways of T1D management.
That is how You, Me & T1D evolved.
I simply wanted a fun, colorful, good vibes book, shining a positive light on modern ways of T1D management, visibly showing how these devices look, where they can be located, enabling other kids to visually see these devices and link this with Georgia. Most importantly I wanted the message to be loud and clear that kids with T1D can do everything you can do! because they can!. Yes, it's not always as simple as it appears, so many decisions to be made before, during and after many daily activities, but it can be done, and we never want anyone to think T1D meant Georgie couldn't participate in all the things a child of her age should be doing.
Being a part of the T1D community on various social media platforms and through JDRF involvement, I noticed more and more questions popping up from other parents, seeking advice on ways others have helped educate their child's peers about their T1D management, or why they get to have juice or Lollie's outside of break time or why they need to have their finger pricked for blood etc. I then realised this book could help other young kids who are also walking this journey.
In Australia, we have a diabetes in school program, which provides education and information to teachers and schools on what T1D is and how to help manage the condition, when children are at school. But this program misses a key audience and support group for T1D kids, and this is the other kids!
Our peers are a significant presence in our life and especially through schooling life. We need to provide better education and awareness to our younger generation, so T1D is a condition that is identifiable and understood by others who do not live with it.
It was with this vision, that You, Me & T1D expanded to providing books that covered all management styles, so kids could use the book most suited to them, to use as an aid to help show their family, friends and peers and start that process of education for our younger generation.
A book will not solve all the emotional and mental health issues that coexist with this condition, but it is a start in helping educate and rethink diabetes from a community perspective.
And we hope the You, Me & T1D book helps you and your child on their journey to learning and educating the community around type 1 diabetes management.
Thank you for your support and if you have any questions or want to reach out to connect to another type 1 family, you can reach us at email@example.com
Stacey, Adam, Georgia and Ivy