This must be the place

Community care and kindness

When my eldest son Eddie was born and diagnosed with a health condition there was no community. The condition wasn’t rare in babies, but the severity of it for him was. We found ourselves as new parents without any community beyond our small antenatal group - who were incredible, but were not having the same introduction to parenthood as we were.

There wasn’t a support group. There were other parents on the ward but they were as exhausted as we were - we spent our time sitting on tiny chairs in the play room, nursing an overly sweet Milo because we’d had too much coffee. We stared out into the distance, too shell-shocked, too tired, to speak.

After surgeries we were just so grateful he had made it through that we retreated immediately after each one. We made strange deals with strange gods, we became weirdly superstitious, tried to bargain, tried to borrow from the future.

Six years into his life, when he was diagnosed with type one diabetes we were confused. We’d never heard of diabetes. It didn’t sink in immediately because he was so desperately unwell.

Whatever long term issues we’d face with this new condition we thought, that’s fine! Just please, for the love of God, let us have a long term. If our child gets to live, whatever he lives with is OK. We just need him here with us.

Once he’d come out of his diabetic coma, a lot happened. You’re thrust into this new world - it’s your job to actively keep your child alive. It’s information overload. In my head it was all ok too much insulin and he could die, not enough insulin and he could die… You learn to inject your child with needles as they cry. You inject yourself with saline, to see if it hurts - it does. You prick fingers and toes and call the nurses and ask for help.

A lot happened.

And something else did too…we were suddenly surrounded with community. It was like a ready-made choir started singing for us. Like they’d been waiting in the wings.

Friends of friends got in touch and said: “I heard about Eddie’s diagnosis, my son is also T1 - I’m here for you”. I found out others had T1 too. They got in touch and offered to meet with Eddie when we were eventually discharged from hospital.

My friends Michelle and Tim came over and talked to Eddie about Tim’s diabetes and afterwards Eddie said: “I’m glad I can still have a baby and get merryed”. It was just one more reminder of how much we needed this community. How on Earth would we have picked that he thought T1 meant he couldn’t get married? Or have a child? Where had that come from?

Parents gave us tips on how to get extra resources - like appointments with a child therapist or an app for kids for carb counting. They told us which juice boxes were best, which chemist had the cheapest gear, how to navigate using a CGM, how to hack a CGM to get more time before it runs out, what brand has the finest needle for finger pricking…

Other friends with T1 kids, let me cry on their shoulder as I asked if it would ever get easier. I felt like they were my lifeboat. Their kids inspired my boy to not feel so daunted by his diagnosis.

Type 1 diabetes is most common in children aged seven to 12 years-old. But over the last three years I’ve met parents of tiny babies with T1 and I’ve met newly diagnosed grandparents. It’s an awful, misunderstood condition. In our time on this waka we have faced ignorant bullying - even in a hospital setting.

People know little about diabetes and like to make assumptions about who has it and why. There is racism evident in how people view diabetes and the ignorance around it can be hard to face.

But, the community of diabetics and parents of diabetics is a strong and resilient one that continues to educate with grace and care despite this. They are so beautifully protective of each other.

During the school holidays, Eddie spent a week with his community. Thirty-three kids and 20 teens with T1 went to Diabetes Camp in Waikanae.

This is the second time Eddie has been able to go to Diabetes Camp and it is life changing for him. Each day he called us briefly and we tried to get details of what he was doing and was he OK? He’s only 10 after all…

“I’m good mum I did kayaking today and I did horse riding I got so muddy mum I got stuck in the mud and I went on the tramp I had a low or maybe two today anyway HEY JACK WAIT FOR ME mum bye!” and just like that he was gone. To spend time with his ‘diabuddies’ Jack and Hamish.

When we came to pick him up on Friday after a blissful week of not having to constantly think about what he was eating and how much insulin he’d had and on and on and on - we found him racing around on the field.

He told us about Jonty, his leader. “He’s the coolest mum. I don’t think you would believe how cool he is”.

I watched Jonty play dodgeball, intentionally letting a little boy win as they all cheered each other. Kids hung off him and high-fived him. He bent down and grabbed a bag and seamlessly checked Eddie’s levels with a disposable needle. I could see his pump tubing in his pocket.

Jonty went to camp as a child and is now here as a young man. He is giving back to the community that gave to him.

There’s something about these kids that go through so much and find reserves somewhere to keep giving. I thought about Jonty’s mum and what their journey together had been like. And how she must be so proud of him.

I looked at my Eddie and thought about the experience he has had this week.

I used to be afraid I’d never be able to get out of my mind what those first few months were like on this waka. Now, I know we are replacing those images with new ones.

Kayaking, dodgeball with Jonty, mud sliding, parkour, a white board with a carb counting list, Eddie hugging the same doctor who promised us just a few short years ago that it would be OK….

I didn’t know it then. But I know it now.

One day, we’ll be the ones telling parents the same.

Hey, I know this seems impossible. But you’re not alone.

You’ve committed to your mind now that awful vision of your child in their hospital bed.

One day, on a clear day, with the sun at your back, they’ll be living. And they’ll be free for that moment, their burden carried by a community that will always be there for them.