Content warning: This piece contains descriptions of surgery and the aftermath of surgery on a child.

Awhi Shares are stories directly from our Awhi Ngā Mātua families. Share your story with us by joining the community or emailing us at hello@awhingamatua.org.nz

I wrote this in 2016 but I thought it would be timely to return to it as it still contains lessons I’m learning. My son has since been diagnosed with Type One Diabetes so it’s still something I’m thinking about a lot.

When I meet new people I often have to explain that my son is recovering from a serious respiratory condition.

I briefly cover off the fact that he's had a bunch of surgeries and has improved a great deal. I explain that I still need people to be careful around him when it comes to things like colds and flu and getting vaccinated to protect him.

The most common response I get is surprise that he has been through so much and is such a happy child.

I am often told "You'd never know!" And I agree. There's nothing about my rambunctious toddler that screams illness. You used to be able to hear every breath he took - awake or asleep. We had comments and stares wherever we went. I hated elevators.

After each surgery he would be temporarily better. And then the rasping, the dragging, would return. 

In order to write this post I thought I'd look up to see when his last surgery was - it has been a year and I can't believe it. I told someone the other day that it has been six months. I genuinely feel like it was yesterday. 

And I can really see how people would think you'd never know he'd been so sick - He is the most resilient, strong, brave child. A complete stereotype. The Brave Sick Kid who takes everything thrown at them with a smile.

I wonder though how long I will know. Will I ever forget what we have been through as a family?

I'm often asked - when will you write about Eddie's illness? I can understand that statement too. But and my first year and a half of being a parent was completely dominated by his illness. It is the elephant in the waiting room.

I've tried. I've tried to write about it. To tell his story in a start to (almost) finish kind of way. But I can't. My brain only seems to open doors to little snap shots of memories. But then the door slams shut. I am wired for self care now. I cannot put that pain into any kind of order. I push myself out before I get in too deep.

Little snap shots.

Eddie at three months old in intensive care after surgery. I don't know what time it is - I have turned my phone off to try to avoid calls where there is too much silence on the other end. 

I can't meet the demands for updates. I'm out at sea. My husband is my lighthouse. Nobody can reach us. They are trying to get my baby to breathe on his own and when they tried to remove the tubes something happened and alarms went off and I was pushed out of the way.

I thought about what would happen if I lost my baby. I thought about the buses that hurtle down the road outside the hospital. Right outside the hospital wouldn't be ideal though. And it would not be fair on the bus driver.

On the phone to my sister. We had gone in to hospital because his breathing sounded particularly bad. They are rushing him in for surgery I tell her. Can she tell the rest of the family that he's going in? I wonder why my arm hurts. I look at it and I have gripped it so tightly that it is now a deep, dark purple.

Is it months later? Or weeks? My husband and I are holding our little boy still. They are guiding a camera into his throat. He has had this procedure so many times. He is buckling and screaming. He goes limp. His skin is pale and clammy. Tears are streaming down my face. 'It's harder on the parents than the child' someone says. I know that isn't true.

I yawn at work. I have spent the night in hospital again. It is so noisy there that I can't sleep. Eddie doesn't sleep either. Someone says that the trick to getting your child to sleep through the night is to put them in another room with the door shut.

Sitting in the toilet at work sobbing. He needs more surgery. I can't work out why I'm not getting better at handling this. I have a meeting in eight minutes. Why does it feel like it's getting harder? I feel like I can't breathe and I wonder if this is how he feels every day and that thought alone makes my jaw ache and my heart beat faster until I feel dizzy and cold.

I am exhausted. A woman in a café asks what's "wrong" with my son. I say he has a respiratory condition. My body language is clear that I do not want to talk about it. "Should you have him out in this weather?" she asks. I say through gritted teeth that he's fine.

"Have you tried amber beads? My daughter swears by them for her son and he has asthma too". I imagine pouring boiling water over her and the thought makes me smile. Another mother frowns at the rasping noises coming from the buggy she raises an eyebrow at her friend. My smile disappears. 

A friend brings over their child. They have a snotty nose. It's just allergies she says. I spend the next week sleeping no more than two or three hours a night. I am convinced he will get sick and end up in hospital again.

We are hopeful. We are daring to think he might be better after nearly three months of silent breathing. Then in the morning we hear him gasping. Overnight his breathing returns to the familiar dragging. We know that this means more surgery.

In a Facebook group a woman rants about how pamol is poison. She treats her son's teething problems with cuddles she says. He's never been vaccinated and that's why he doesn't get sick. Whooping cough is just a cough she says. No children have died of whooping cough and if they did it's a form of natural selection.

I am grateful that my husband handles all of Eddie's medications. There is only one where he needs to be held down so we can give it to him. The rest he has gotten used to taking. I lie awake at night thinking about how I can keep him safe. I can feel his breath on my chest as he snuggles into me. I kiss his forehead and know I will do anything to protect him but how can I protect him from people like that?

I am pregnant. "Are you worried the baby will be like Eddie" somebody asks.

All of these little snapshots don't begin to tell the story. He is getting better. He is better. Is he better?

Sometimes I feel like every little bit of this particular pain has attached to my bones. It is a weight that I carry around always and I wonder when it will be lifted. When will enough time have passed for it to pass?

I feel like all of the time we fought for him to breathe - it was a war. We have returned from the front shell-shocked. What is the length of time you need to be home for it to go away?

I think parents who go through this have some kind of sick kid post traumatic stress disorder. The people around you get sick kid fatigue. They have enough sympathy for the first few surgeries but your child is meant to just get better or...well...Limbo is a strange thing.

And when they do get better - you're supposed to be free from it all too. Your child is better! That's it. That's the end of that story. Please begin talking about the lessons you've learned. Preferably have some Hallmark card quotes ready. Everyone loves a happy ending.

But it isn't over even when it's meant to be over. The fear is always there. Particularly when it's a chronic illness or a condition that isn't well understood. Remission or recovery doesn't erase the past.

Last week he built an adventure in our lounge. You have to leap from the couch onto the pillows. Jump them like a monkey. Climb onto the recliner and leap on to the carpet which is the sea. Watch out for the shark! You're a pirate now. Walk the plank then begin again. He does this ten times.

I hear a ragged edge to his breathing.

I feel that familiar ache in my shoulders. The dull pain in my neck. The heat on my face. My eyes prickle.

My heart jumps.

Will I always know?