My Sick Kid - A different perspective
Writing that piece about when our daughter was sick last week really opened the floodgate for me. I’ve found I’ve got more to say about it, so I’m going to talk about it through a slightly different lens now. I’m leaving out some of the details about the situation as those aren’t my story to tell. Maybe one day my daughter will share her version of events as she remembers it. I’m going to talk about it from my perspective of how things unfolded and some further reflections.
Just before my eldest daughter's third birthday she started getting a bit sick. She would vomit occasionally, would have trouble going to the bathroom and generally just not be one hundred percent. We took her to the GP a few times, they did a few tests, but in general it seemed to be clocked up to just the general random sicknesses that kids get.
One Friday afternoon I went to do the daycare pick up and saw her running around with her friends, she was doubled over with a sore stomach chasing them round. My wife and I agreed we wanted to go and get someone else to look at her as we were sure that the GP was missing something. So we took her to the After Hours clinic on Saturday morning.
We get in and start talking to the doctor. Going through how long it's been going on, the different symptoms and what we’ve done before. We start by doing the same urine tests to check for infection we’d done before and we begin to lose hope that this trip is going to end with any answers.
We get back into the room and sit down with the doctor. He says something along the lines of, this has been going on too long and I don’t want to send her home until we know what’s going on. If you ever read this, I’ve forgotten your name now Doctor, thank you so much for what you did that day. He sends us down the road to the hospital and I sit in the x-ray room with her as they take an x-ray of her midsection. They also do an ultrasound too, but the paediatric doctor is busy at the time and we don’t talk about the results with the technician.
Anyway, it’s night time by now and we get admitted into the children's hospital. We agree that my wife will stay overnight and I’ll go back to my parents where we've left our one year old daughter. I say my goodbyes and sleep tights and then hop in the car and drive home. It’s been a long day and I’m pretty knackered from never really relaxing at any point.
I get home and our one year old is already asleep. I’m a bit bummed out, it’s late, but it would have been nice to have a cuddle and do bed time. I start debriefing with my parents about what has happened in the day, how we got from after hours to hospital etc. when my phone rings and it’s my wife. She’s scared, in tears.
“They’ve found a lump in her stomach”
“What? …….. What kind of lump?”
“They don’t know yet, the doctor just came by and said they found a lump in the scans they did”
“Oh shit. Umm. OK, I’m coming back to the hospital”
I mumble something to my parents about a lump in a stomach and half run, half lurch to the car. I honestly should not have driven. My head was doing a million things in that moment, and focusing on the road wasn’t one of them. But I get back to the hospital, find my way to the room. My daughter is sleeping in the hospital bed curled up with my wife. There are tears streaming down her face as she strokes our baby's hair. We have the same conversation about three times. The information remains the same. We try to squeeze new meaning out of it, but there isn’t anything for us.
And so begins what is still to this day the longest night of my life. We convince ourselves she has a tumour, or some unusual cancer. What else is in there other than this one lump? Around and around. I’m lying on the reclining chair next to the bed. My wife and daughter are in the bed. We don’t talk, but we’re both awake. There’s only so many times we can have the same conversation about the same two lines of information we know right now.
I thought I knew what it meant to be truly powerless. But I had no idea. Not until I was on that reclining chair. Knowing that there was absolutely nothing I could do. Making deals with deities I don’t believe in and asking the universe to do anything else, anything but this. But nothing happened, we were still stuck in that hospital ward not knowing what tomorrow would bring.
The long, sleepless night finally over, the paediatric doctor came to see us again in the morning. He told us that he wanted to do an MRI scan that day to get a good look at the lump. So now, the long night turned into a long day. This is the bit I seem to forget about stays in hospital, the long periods of time where you are alone with your thoughts. You remember the moments of action, the x ray, the consult with the doctor. But usually that’s less than 10% of the experience. The rest is waiting. Which, while painful waiting around to find where you’ve broken your arm, isn’t quite the same as sitting around wondering what the hell is growing uninvited in your three year old.
We wait all day, nil by mouth for our poor little girl, for our turn at the MRI scan. We decide given how scary the machine is and that we can’t be with her, she should be under general anaesthetic. She’s getting over it, just having turned three, being starved and forced to wait in a hospital room is a pretty hard sell. My wife and I are both getting to the point of exhaustion too. We’ve been on edge for almost 24 hours now. The nerves are frayed and like I said, the mind starts to go to dark places about what's going on. But the day doesn’t pan out well for us. We were about to go in at one point when the doctors get pulled away to an emergency. It felt like all that could go wrong would.
Eventually, around 5pm we are wheeled down to the MRI scan area. My wife is allowed in with her to be with her until she goes under with the anaesthetic. She’s asleep and my wife is ushered out of the room and we sit alone in the corridor outside……… waiting.
I have no idea how long it took. If you told me now it was 5 minutes, or 3 hours, I would probably believe you. We sat in the corridor for a while. We hugged, we cried, we gave each other reassurances that neither of us could guarantee.
The doctor eventually came out and called us into a little office off the side of the CT area corridor. He told us it was good news. It wasn’t a tumour, it was a cyst. A rare infection that they don’t see very often. Where the base of the umbilical cord doesn’t seal off properly after birth. I think we were both so exhausted that we didn’t know how to react. We were obviously relieved but there was still surgery to be done, he told us. 48 hours ago we thought this was just some daycare bug, now we were talking about an operation to remove a cyst the size of a mandarin.
They pushed through with the surgery as she was already under general anaesthetic. It went as expected, they told us. They removed the cyst and confirmed that there was nothing else in there.
We settled in to a decent stay at the children's hospital. I think we were there for about a week. They do their best to make it as good as they possibly can for kids and families, but you don’t want to be there. Over that week we found out that our daughter would need another surgery in a couple of months time to finish the job. In the meantime she would need to be on antibiotics to make sure the infection didn’t come back.
She was obviously too little to have pills, so they gave her a syrup. It was disgusting. The only way we could get her to have it was mixed with ice cream and chocolate sauce. So she went two months where she ate that every day. We didn’t mind, she deserved a treat after the horrible and scary experience she’d been through.
I learnt a lot about her through it. She’s tougher than I had given her credit for. The doctor told us how painful the condition can be. The thought that she was in pain for an extended period before we got it sorted hurts me so much. I felt terrible for all the times, before we knew what it was, we told her it would get better and to not think about it. She’s also incredibly resilient. I think after the operation she bounced back quicker than we did. She was so noticeably better without the pain in her stomach that it was mostly a challenge to keep her chilled out to let her operation wound heal.
It makes me reflect that it's a really hard position for all of us. We wanted to protect her, to fix and cure her. But even at three, she was already brave and strong and exerting her independence in some ways. The role of advocate for your child is a hard one to play in this context. It’s easy to think they are too young for any of it. But our natural human springs of will and drive are already there. She was already capable of so much more than I thought.
The part that’s really hard is the communication. Trying to tell the doctors what the problem is when you’re not sure whether what you’re describing is accurate. You feel like you’re giving mixed messages and sometimes contradictory symptoms. Then being on the other side of things, trying to tell your child that something probably painful, like an injection etc. is coming but for a good reason. You feel pulled in every direction and like you’re not doing a particularly good job of any of it.
It seems like you are thrown an insurmountable challenge when you’re at your weakest. It’s easy in those moments to think that life isn’t fair. That this sort of thing shouldn’t be happening to me, and us. But the flip side of that, is that you find strength in places you didn’t expect it. Watching my daughter handle everything, and bounce back almost immediately at every turn gave me more resolve than anything else. Knowing that someone I helped create and have raised can be that resilient gave me the ability to access my own reserves of resilience.
I also should give a huge shout out to the kaiako at our daycare. In the weeks after our daughter went back to her normal routine they would set up the doctors kit at daycare and allow her to role play. She would do operations on her friends and talk through things. I didn’t realise it at the time, but that was her therapy. She couldn’t sit with a therapist and talk through her feelings and experiences. But she could role-play them out and put herself in the position of doctor, nurse and patient to work things out for herself. So thank you to our wonderful kaiako who supported our daughter and us through that stressful time.
It’s been about four years since this happened. I don’t think anything else in my time as a parent has shaped my view on what’s important in life to me. At the time I was involved in a start up, pouring everything I had into building the company and product up. We had just secured a big school and they had my number to help with implementation. I got a call sitting in the hospital about to go into surgery, and I took the call. I stepped them though the problems they were having and helped them get up and running.
A couple of days later I reflected on that, I had no separation between work and home life and hadn’t thought twice about taking that call. I’ve become so much better about drawing that line. My kids and my family come first. I’m lucky now to work in a place that has a great culture and attitude towards work/life balance. For me, that’s pretty much the number one priority over all else. I’m not earning as much as I could, but I’m working four days a week and my attention is where it needs to be.
Nowadays people at my work think I’m ultra-relaxed about everything. I probably am, but that’s only because I look at things through a lens of how important things really are in my life. A bit of pressure to get something delivered in time is nothing compared to healthy and happy kids. I also focus more on celebrating and empowering the people I work with, not focusing on the tasks. Because for me, it’s the people in my life that matter. The things we do, work on or talk about change, but the relationships we build are what is important to me now.
If you’ve ever experienced anything like what I’ve written about here and haven’t talked to someone about it, I can’t recommend doing so enough. I was carrying so much anger and shame from this that I didn’t even realise it. I had a dark cloud over my head for months until I got back into therapy and began to unpack it. If you’re not ready for a therapist, try someone you know and trust. If you think I’m one of those people for you, please reach out.