Harvey's Diagnosis Story

Something that I’ve wanted to do for a while is write down this story, something cathartic about writing it down and sharing our story so on the 12 month Anniversary of Harveys Diagnosis here we go.

I often relive the moment the doctor said to me “you need to take him straight to hospital” and the moment the ER doctor said “he has Type 1 Diabetes”.

Around April 2022 Harvey began to wet the bed at night and was having frequent night terrors. He’d been fully toilet trained for nearly six months so I was curious as to what was going on. My initial thoughts were that he was exhausted from his first full term at school (the previous two years we were in lockdown), over the next couple of months the bed wetting became more frequent, going from twice a week to three times a night and that was before midnight!
He always went to the toilet frequently so I didn’t notice any increase in this during the day just at night.

Harvey absolutely refused to go back into night nappies and no other strategies worked.
I was running to the laundry mat every second day and was concerned that there was something else going on.

Weirdly Type 1 Diabetes wasn’t the furthest thing from my mind but I was hoping for a UTI!

The morning of Thursday 2nd June, I called the doctors office. I remember not being able to get into our regular family GP till the Monday but my instincts told me that I needed to get him seen today.

I’d spent the morning getting organised for Jimmy’s 10th birthday that was happening that weekend. I prepped the mud cake and had that slowly baking in the oven while I picked Harvey up from school at 2pm for a 2:15pm appointment. I remember thinking I’d timed the cake baking perfectly so I’d just have to take it out after school pick up.

The appointment with the GP was pretty straightforward, I ran through everything that was going on, she requested a blood test and a urine sample for what I thought would rule out a UTI.
After providing a urine sample, the nurse said it doesn’t look like he has a UTI and left the room.
Okay maybe more answers from a blood test then.

We got up to leave and while paying the bill, the doctor called us back in and said Harvey’s urine is showing that there are sugars present.

This is the point where everything goes into slow motion and my inner voice is telling me to hold it together but the tears just start flowing. They are flowing right now as I write this!

Harvey is scared, I’m scared and I’ve lost complete control of my composure. As Harvey sits on my lap, both of us crying, I convince him to let the nurse to do a finger prick.
Blood Glucose 22. Keytones 0.1

The doctor turns to me and says “you need to take him straight to the Monash Childrens Hospital” Fuck!

So many thoughts ran through my mind, how did this happen? why is this happening? I’ve got to pick Jimmy up from school in 10mins, I’ve got a cake baking in the oven, what does this high glucose reading mean? I know what this high glucose reading means, Hold yourself together Jacqui ! Stop crying! Fuck!

I called Scotty, I made this call outside the car so Harvey didn’t hear me break. While telling Scotty that our baby boy was sick and I’m heading to emergency now. Due to the Covid rules only one parent was allowed so he was just on standby, I can only imagine how he felt.

Second thing I needed to do was get Jimmy sorted, normally I’d just call my parents but they were unavailable so I called my bestie Mel, (so grateful for her) she knows where Jimmy will be and will pick him up and be with there for as long as needed. It sure does take a Village!

I’m trying to be calm for Harvey as I know that my tears are scaring him. His blue eyes watching me intently as I explain that we are just going to duck home and grab a few things and then go to the hospital. Oh and turn off the oven

I text my sisters and say “I think Harvey has Diabetes, heading to hospital now. Don’t call me as I don’t want to cry in front of Harvey anymore as I’m scaring him. Also don’t tell Mum & Dad yet, I don’t want to worry them either. I’ll keep you posted”. I couldn’t bring myself to even read their reply messages till hours later.

Over the next 5 days we stay in hospital and we are quickly exposed to our new normal, we are taught how to check blood sugars, how to administer insulin, how to measure how much insulin would be required, it’s numbers and carbs and units and fingers pricks and hypo treatments, needle changes and emergency management plans. It was a lot!

It did take Harvey some time to understand that this would have to continue once we leave the hospital, this would continue for him for the rest of his life. I’m not sure I’ve come to terms with that completely myself though.

For the past 12 months I have gone through what feels a huge grieving process. I’ve grieved for my healthy baby boy who now has to carry this extra burden around with him every second of everyday. I’ve grieved that he needs to check his glucose levels before he eats, I’ve grieved that we need to tell teachers, his friends and their parents about how to treat a hypo. I’ve grieved for every email or phone call I’ve made to holiday or sports programs to inform them that my child has Diabetes and will be attending their program.
I’ve grieved that this could be my fault. I’ve grieved that people may judge us.
I’ve grieved for Harveys independence and that I need to attend every party or at least be close by. I’ve grieved for my independence.
I’ve grieved for what his future will look like. I’ve grieved that some days are very very hard and this disease just sometimes doesn’t make sense and I’ve grieved for the sleep I will never get back!

Though I’ve grieved, I’ve also gained.
I’ve gained a community of knowledgeable parents and educators who have walked this path before me and are all to willing to share. The amount of strangers who reached out offering support was overwhelming.
I’ve gained strength I never knew that I had in me. I’ve gained the ability to not be afraid to ask for help when I need it, our friends and family have been so supportive and helpful. They’ve committed to learning everything they can to make sure Harvey has a normal life and I’m hugely grateful for that.

But above all I’ve gained so much admiration for Harvey, he has proved that this disease will not hold him back. He never complains about wearing a CGM, about having to go to the nurse each school

day to have insulin, he never complains about having me tag along for his friend parties, about having to call me to figure out how much insulin he needs at a play date and administering it himself.
Never complains about me force feeding him food in the middle of the night while we treat his third hypo. Never complains about changing his CGM every 10 days and never complains about the tiny bruises that come up on his body from his needles.

He is a strong, happy, active and an inspiring little man and I’m so proud of what we have achieved together in the past 12 months.

Though this is Harvey’s diagnosis story, it’s very much OUR diagnosis story, us as a family. Harveys diagnosis changed things for all of us. It broke us and put us back together.

Jacqui - Harvey’s mum - xx