It begins!

One show down, 17 to go...

Welcome to Emily Writes Weekly. I hope you are doing well. I’m in Tāmaki Makaurau preparing for our second show. Last night we were in Whangārei.

I just got off the phone from my husband and the kids. My little one said “Did you feel us wishing last night? We wished and wished that you’d feel us and you wouldn’t be scared for your show”.

All that wishing for a baby and now I’ve got little ones that wish for me before bed. I will see them again in one week before part two of the tour but already I’m missing them a lot. That’s parenting right? Wishing for just one night away when you’re with them and then missing them when you’re not with them.

Whangārei was great and chaotic last night. My microphone kept crackling and cutting in and out and then it suddenly made this really loud pop noise right while I was standing next to the speaker so I was momentarily like - stunned.

My ear only stopped ringing a few hours ago so I’m functioning on not much sleep. We kept having to swap mics between us and the cords got tangled and it was a lot. But still, everyone laughed at the right things and said they had fun and we raised a bunch of money for charity.

I figure if we can make it through that we can make it through anything. Tomorrow is Hamilton, then Tauranga then somewhere else - New Plymouth, Palmy? I know we end this run in Napier then have a two-day break so that I don’t miss Eddie’s cross-country race.

Eddie is really, really into running. He loves it. But running takes a fair bit of managing with Type One. And he was only diagnosed a year and a half ago.

Last year he didn’t finish his school race because he had a low. He was devastated. Running was something he was always good at.

So it took a lot of time to get over the last fun run and we were dreading this one. We did a lot of - “You don’t have to place. It’s a fun run. It’s meant to be fun.”

With our focus on Eddie, and organising for me to be there and for him to have someone running with him, we kind of just didn’t recognise that Ham would need some help too.

When I got to school, I checked in with Eddie and made sure he’d had some extra sugar and was well-hydrated. Then he lined up to race. When the clapper thing went off, all the kids started screaming.

Ham really struggled with noise. Unfamiliar sound and sounds that are different pitches at the same time (like yelling combined with screaming) completely overwhelm him.

He began sobbing and screaming and covering his ears. I took him inside and managed to calm him with a soft blanket and some ear defenders. It took a while but he stopped crying and was OK. Then I saw Eddie tearing round the corner.

He came second! He was only a second behind his friend who came first! And he was so happy. I wish I had a shot of his huge smile.

Then we were told it was time for Ham’s class to race. Ham was stressed and already exhausted from his sensory overload. But he wanted to race like everyone else.

The clapper went. He got a fright. Started to run. Got confused. And then fell over.

That’s when Eddie raced onto the field, just sprinting toward him. He immediately lifted Ham into a cuddle. It was very sweet.

But then he lifted Ham up and put him on his back and tried to carry him the rest of the race. I mean bless that big-hearted boy - but…Ham is basically the same size as him.

To Eddie. no matter how big he is - he’s still his little baby brother.

Then Ham’s teacher got to him and she held his hand and they started running. All the kids were cheering him on and Ham crossed the finish line as I helped Eddie with his sudden low.

It was a lot.

Ham then started crying and shouting that he came last and that makes him a loser. I tried to tell him that honestly, finishing takes the most courage and winning is not important.

Then he said to me “Is this because I have that thing that makes my brain different?”

And I didn’t know what to say. I was so caught off guard. I should have been ready for this moment but I wasn’t.

He was in tears and I was in tears. Eddie started crying. Everyone was exhausted.

We climbed into bed together as soon as we got home. Even though it was only 3.30pm. And I read to them their favourite Mog book. As I read, Eddie stroked Ham’s hair just the way he likes it. Eddie placed the weighted blanket over him and snuggled into his little brother. Ham hummed softly and held his brother’s hand. As we read, Ham absent-mindedly reached for Eddie’s continuous glucose monitor scanner and scanned Eddie. He looked at the screen and said “6.4 vewwy good”.

They will always care for each other. It’s who they are.

We are all just trying our best as parents. Unsure what to do. Unsure if we are handling things the right way. I don’t know what I’m doing. But I do know that the only way that feels right is doing this as a family.

Helping each other when we fall. Cheering each other on. Encouraging each other and showing up. Knowing we will make mistakes, knowing we won’t always be ready for what comes our way. But also knowing tomorrow is a new day and we keep trying our best.

Love Emily x