Living with Type 1 Diabetes
This post was written by Elise - mother to Leah, who was diagnosed with Type 1 Diabetes when she was 4 years old. Leah is the reason behind our Diabetic Range of Remindables. One day Elise opened up to us about how nervous she was about a) Leah being at kinder and others being responsible for managing the diabetes, and b) the need to bring a level of awareness to Leah in understanding diabetes. We hope our Remindables tags can help for both these needs, in a small but practical way. Thank you Elise for sharing your story; for your honest and raw feelings written down for others to read.
I was recently asked to think of the top 5 things that I wish I had known before my child was first diagnosed as a Type 1 diabetic. Initially, I thought this was easy to answer but it has actually been really hard. How do you summarize the day that your life, and your child’s life, levitates into space, flips upside down and never quite lands back down on earth?
I will never forget diagnosis day. The 25th of February 2019 ... it still haunts me ... and we were one of the lucky ones! For us, we knew what was coming; we stepped into the foyer of the Royal Children’s Hospital Emergency Department, knowing full well what was about to hit us!
You see, I’m a nurse. Adults, not kids, but same, same! For about a week pre-diagnosis, my husband and I had noticed that our daughter had become really thin ... like, REALLY thin! Past the initial growth spurt that had occurred, and heading into bag of bones territory! And with this she had an insatiable thirst. At this point my alarm bells started to ring but it was February and we had had a run of 30 degree days. I would say to myself “She was just staying hydrated ... right?” So I started measuring how much she was drinking. 6 Litres per day ... 6!! She had just turned 4! And then the bed-wetting started! And not just once, but twice, once even three times a night! After the episode of 3 wet beds, I had a shift at work. I “borrowed” a urine dipstick and thought, “I’ll just rule out diabetes!” The minute the dipstick hit the urine, it lit up like a Christmas tree ... ketones and glucose! Not cool! We already had a GP appointment booked for that day, so we trudged into the office, urine stick in hand. I was hopeful it was something else, just a virus ... yeah?
Sitting in the waiting room at The Royal Children’s Hospital was one of the strangest experiences. Sitting there, bags packed, knowing that once we walked through those doors, that’s it ... life as we had known it so far would just ... stop! The triage nurse called us in and I said “I think she has Type 1 diabetes”. She looked at me and I listed off her symptoms, “Weight loss, thirst, frequent urination, tired, hungry” and then the crescendo ... the dipstick! Well ... a photo of it at least! I wasn’t still carrying a piece of urine soaked paper in my pocket. The nurse did a blood glucose finger prick and it was so high that the machine just said “HI”. She checked her ketones - 3.0 (normal, for the most part, is 0.0). Later we would learn that her blood sugar was 38 (normal is between 4-8). As she was so “well” she was in what is known as Early DKA or Early Diabetic Ketoacidosis. We went straight from triage into a cubical where we were reviewed by an endocrinologist, who muttered those 5 little life changing words “She has Type 1 diabetes.”
Remember how I said she was one of the lucky ones? Well this is why. Most kids who are diagnosed are already in DKA, which is deadly. It is super scientific and difficult to explain, but basically you need insulin so the food you eat can go from the bloodstream into the cells to create energy. When this doesn’t happen, the glucose stays in the bloodstream and the body looks for alternative energy sources i.e., fat. A bi-product of fat breakdown is the formation of ketones. The blood becomes acidic, and you become very, very unwell. More often than not, this results in an ICU stay. We were “lucky” we had some insulin and her blood sugar, and ketones corrected quite quickly! No need for ICU.
So, after the slap across the face that is diagnosis, the real work starts. Education! Basically we left the hospital with a PhD in Type 1 diabetes. It was like cramming for an exam that was never going to come … but you will then go on to be tested every HOUR, every DAY, for the REST OF YOUR LIFE. It is intense and overwhelming. No two days are the same, and just when you think “Yep, I got this” those goal posts move and you’re back at square one!
So, what do I wish I had known prior to diagnosis? My advice would be;
This is NOT your fault!!! You did nothing to make this happen. You could not have prevented it. It just is!
Throw yourself a “Pity Party”! Allow yourself time to grieve! Cry, be angry! It isn’t fair, it does suck!
All the new “firsts” are super overwhelming
First day back at school/kinder
First birthday party
First play date, without you
First sleepover
First independent, anything
4. Diabetes does not mean that they “can’t” – it just might be a harder road to travel.
5. They are a kid FIRST and a diabetic SECOND.
6. Diabetes does NOT define them!
7. You are not alone! Reach out for support, ask questions, whinge. You will get through this.
Elise is an amazing mum to her 3 gorgeous children. She is also a brilliant nurse, working in one of Melbourne’s busiest hospitals. We have known Elise since we were 12 years old, catching the 7.31am Blackburn train together each day to school. We are so thankful that even though many years have flown by and we no longer live close by, we continue to remain the greatest of friends. The blog posts featured on this site are written on behalf of Remindables and are intended for educational purposes only and to provide general information and an understanding on a particular topic. By using this blog site you must be aware that the information shown is not to be used as a substitute for therapy advice and you should therefore seek the opinion of suitable professionals to assist you. The views expressed here are the author’s views alone and not those of their employer or others, unless clearly stated. 