A grounding through the words.
It started out like any other ordinary Friday in September…
Until he came out of his room to start the school morning routine. I looked at him and said, “your face looks funny.” Staring back at me with his trademark wide grin and cheeky eyes, he shrugged. And he went back to getting ready for school.
But that mama-gut-instinct kicked in. He looked different. Plus the headaches he’d been having for over 2 years were back, stronger than ever before. Often they were really gnarly. Like, drop him to the ground gnarly.
So I phoned our Dr. I’d missed the boat for a Friday appointment. And it was Queen Lizzie’s memorial on Monday 26th. So I, reluctantly, settled for Tuesday.
And from there - on Tuesday 27th September 2022, I remember every single word spoken to me - while the rest of the world whirled around me.
My heart was fast. But I was moving in slow motion. “This could be serious”, she said. She was talking about his right-sided facial swelling. I thought the headaches were the bigger deal. Turns out, in that moment, she was far less worried about those. You need to go to the hospital. She rang the big guns and made the appointments as we sat there and looked at each other. Him wondering what the heck the fuss was about. Me, trying to force a ‘we’ve got this’ smile.
Something made me ask mum to come to the hospital. Her background is teeth talk. So off we went. First for an x-ray. Then straight to see the oral specialists. They’d checked his x-ray before we’d even entered the room. They looked in his mouth. Looked at each other. And then at mum and I. “Look, what we can see is a large tumour that’s taking up most of the right side of his face. It’s moving his teeth around. And it’s started to erode his jaw bone. We’ve already referred him to the Maxillofacial surgeon and ordered a CT scan. From there, they’ll likely want
to biopsy it.”
And just like that. My insides twisted.
Trying, for the second time, to force a ‘we’ve got this’ smile. Mum and I staring at each other with a ‘keep it the fuck together’ look. At that moment I’ve never been more thankful for my mum. She held it together, while I couldn’t. She took him outside and told him, “you know mum’s a little squeamish when it comes to anything medical - she just needs a moment.” Behind closed doors, I cried. Oh boy did I cry. All at once I felt both relieved and gutted that this wasn’t the Dr’s first rodeo. She’d delivered shit news before. She knew how to handle my tears - with the deepest empathy, scratchy hospital tissues and a promise that “I’ve got you, we’re onto this and I’ll be right by your side the whole way.”
Grateful for my obsession with large sunglasses. They hid the tears and puffy eyes as we drove back to my parents’ house.
I needed my husband. I had to call him. Slightly angry at myself for assuring him he should go to work that morning. I had mum, she knew teeth talk and we’d be OK. But things weren’t OK. And telling him that was the hardest thing I’ve ever had to say. Turns out he doesn’t speak crying-uncontrollably-with-no-real-words, but he knew to come home. So I left our little bloke with my parents and drove home to meet him.
The pain over the next few weeks was unbearable.
We walked around, publicly, doing our best to act ‘normal’. But in private we cried. Oh did we cry. We were determined to remain positive, but fuck me - that was hard. We only let a few people in. Because protecting our boy and our energy was the only thing on our mind. You know people mean well, but it’s impossible to answer questions when there’s so many unknowns. So we shut ourselves away from the world.
CT scan day came and went. The days drifted away. Then came the phone call. From the specialist who promised to be by my side the whole way. I wasn’t expecting to hear from her. But she explained that, yes, the scan had confirmed a large mass that would need to be biopsied but it had also uncovered “something else.” Chiari Malformation type 1. Look it up, or don’t. I was advised not to, because Dr Google is dangerous. But the reason she was calling was because she’d already phoned a few of our specialists and wanted to explain it to me in “mum talk” rather than “specialist speak.” It was too early to tell the severity for him and the diagnosis was outside the knowledge of our pediatric team in Hawke’s Bay - so we’d need to be referred to the head Neurosurgeon at Starship.
Let that sink in for a sec. It was a lot.
I’m trying to run a self-made business during the biggest growth year I've ever had. And I’m trying to navigate this new stage in our life that feels so outside of my control. I was torn. Like, obviously, my family will always come first. That goes without saying. But doing what I say I’m going to do, producing work to a high standard and being there for my incredible clients is something I don’t take lightly. As I said - I was torn, while not being torn - do you know what I mean?
And then came the 3rd blow.
Mum turned up one early Sunday morning a few days later. That wasn’t unusual. But the tears she was trying to hide, were. My darling dad had a stroke the night before. She knew the world of pain we were in, and sheltered us from it overnight to try and not interrupt the sleep we weren’t getting anyway. Dad’s stroke was significant. The first 48 hours were critical.
Our baby and, now, my dad. The pain was consuming. Our boys were still sleeping. So we sheltered in the garage and cried. My husband, mum and I - standing next to each other, doubled over in pain. Dad is the glue that holds our family together. Over the last few weeks he’d held us all up. There’s not a man in this world who adores his grandchildren more than dad does. And it hit me. While dad had stood strong for us, he’d internalised his pain. And his body couldn’t cope. The stress caused his stroke. I knew it. It’s not that I feel guilty about it. I’m a realist. And this was the reality of our situation.
The next few days were a hazy blur.
Hospital visits to see dad. One at a time. Holding hands but no talking, because his brain needed complete rest. And no children under 16 allowed in the ward. I understood why, but it felt like a cruel, cruel world when the healing power dad needed was his grandchildren. More hospital visits for our little lad, and then his biopsy day arrived. I don’t want to write about that, because it was traumatic. Had we known what we know now, we never would have consented to him going through that, awake. But then, something truly special happened. A nurse with a kind heart, who knew our story, agreed that dad and his mini needed to see each other. So she propped dad up in a wheelchair and allowed them to meet, momentarily, outside of the ward. The saddest, most special reunion. Popsy and his little boy back together again. It wasn’t the pops he remembered, and his swollen face wasn’t the perfect face dad had loved on for 11 years. But they were together. And, right in that moment, nothing else mattered.
I came home that evening and felt deflated. And I knew I had to pull away from work. Dad also has a business. And I wanted to keep it going, while he couldn’t. So with shaking hands, I emailed all my regular clients. I filled them in. Said I’d need to take some time and pull back a little from work, then sent that sucker before I tried to delete it and start again. Then I emailed all my upcoming clients and said I’d have to refer their projects elsewhere. I felt like I was letting them down. But if I couldn't find the words to talk, then I certainly couldn’t find the words to serve them well. It was kinda amazing, that during my darkest hours it also dawned on me that I’d reached a point in my biz journey where I was aligned with the most incredible humans - doing the work that, truly, lights me up. Their responses were humbling. Words of understanding and support that I hope I’ll never forget.
I started to let a few more people in. I was overwhelmed and exhausted. Usually the one to hold others in their time of need, this time I needed to be held.
Then came the moment I realised I’d been holding my breath, since that first Dr’s visit on that terrible Tuesday in September.
The biopsy results were back and the tumour was benign. It was the beginning of the healing that we all so desperately needed. I’m cautious about saying this, because perhaps there’s someone reading this who didn’t get the all clear of the ‘C’ word for their child. But fuck me, it’s a relief that I can’t quite explain. Like this tense, hideous, energy flows from your body and you start to inhale clean air again. His journey wasn’t over. But we were feeling more confident about the way forward.
Today, as I write this, our beautiful boy is 14 days post jaw-surgery. The surgeon couldn't be happier with how it went. His recovery has been textbook. We’re beyond proud of him and how he’s handled every step of his journey. He’ll be watched closely to ensure the mass doesn’t grow back. His jaw bone will regrow and in time we’ll know if there’s been any impact on his adult teeth. We’ve had appointments for his brain condition and we’re, not-so-patiently, awaiting the next steps.
Dad has been called a miracle. He walked out of hospital with the help of a walker, when they didn’t think he would walk again. But supporting a loved one post-stroke is not easy. It’s hardest on dad. To have your independence taken away overnight is heartbreaking. The fatigue and cognitive struggles are next level. But he’s alive. We’re grateful but exhausted. He’s grateful but grieves his old life
Our hospital system is kinda fucked - both public and private.
You wouldn’t know this from the care we’ve received and continue to receive. I don’t think we were ‘lucky’ to have had the best people on our team for both dad and our boy. There’s doctors and nurses out there who are truly amazing, doing their best in the most trying of times. If you’re wondering whether they need better working conditions, more support and funding - let me tell you it’s a resounding ‘YES’.
This journey isn’t linear and it doesn’t have an end date.
For now, I’ve (mostly) accepted that this is the stage of life we’re at and we’ll continue to move forward through it all. But the acceptance doesn’t stop it from hurting. Shit, there’s days it still hurts real bad. Maybe you’re reading this and wondering why I’m sharing it with you (or when this novel is, finally, going to end). I guess, for me, the reasons for sharing are threefold:
Writing has always been my therapy. I love the power of words. To articulate, to heal (or to hurt), to inspire change and create action (to name a few). Getting my words onto paper (or screen) has helped get me to a point of release - a place where I’m ready to let more people in, and take little steps into opening myself to new clients again. While I’ve certainly not had the words, until now, to write for myself - the words I’ve written for others have helped me escape, momentarily, over the last 6 months.
When it comes to this biz journey of mine, I’m an open book. But I feel like I’ve hidden a huge part of me for what feels like a long time. I’ve been reminded once or twice that being private isn’t secretive, and I think it’s wise to remember that in this online space. But it, finally, feels right to share it with you - openly and authentically. This isn’t a cue for sympathy. That isn’t my jam. Life isn’t always good. And people are faced with hard times - in life, in business and often together. This is my story, and it kinda leads into my last point…
As a reminder that behind every business, there is a human. A real life human who feels. Often deeply. Go with grace when you interact with them online and in-person. And if you are reading this, and you’re also traveling a shitty journey - please know that you can do hard things. It’s not easy and it often doesn’t feel fair. Find your people, let them in and accept their help.
