Not every year has to be great, and I'm learning that's ok.

Posted on December 31, 2021

18 min read views

Warning: This post covers child loss and might be sad for some people reading it. If you want to consume something more light-hearted watch this instead.

At the start of 2021, things were tracking to make it one of the best years of our tiny families' lives so far.

But in the end life had a different plan for us.

Sometimes life just plays out that way, and we have to learn that it's ok. It's okay that last year wasn't better than the year prior. It's okay that we didn't make the progress we thought we would.

It's okay that we're not happy.

As a result of this year, Micaela and I now have a new part of our story together, and whilst we have moments where we wish the past year never happened, it's now a new part of our identity together that brings us closer together.

The following post is an extremely brief recap as I remember the year.

It all went so fast for us. My memories are hazy, like I'm looking back at it all with fogged-up glasses, so I may have some dates or details wrong, but I feel it's worth logging this down before we move into the New Year before it becomes a faded memory.

It's also a little bit cathartic for me and allows me to make progress on my own grief.

Why write this up publicly?

During the last year, when I posted on Twitter about what we were going through I was inundated with messages from people (men in particular) who went through the same things. Knowing that friends I admired had gone through similar journeys and got to the other side gave me a-lot of strength.

Maybe this post will do the same for others.

If you're one of those people, know that it does get better with time; it just sucks every single day until one day it doesn't as much.

Learning to be ok with this new part of your life, grief, joining you on your journey is the best way I've found to move forward.

We began the year.

Like most years, we started 2021 with a lot of optimism.

Most of our friends during the previous year knuckled down to focus on work as a way of getting through the pandemic. I think most business owners and entrepreneurs did this. It was a year of survival.

We couldn't travel, we couldn't see friends, we couldn't escape to Thailand or Vietnam.

Work was the one thing in our lives we could control and had an ounce of leverage on.

It felt safe even though most of the world around us in chaos.

And, for the most part, it worked (at least for us).

Our business survived the pandemic and was growing at a good clip.

At the same time as working, we were working towards building a more comfortable life here in Japan. Micaela and I had just moved into a beautiful new home in a new neighborhood close to our apartment. For the same price as our old apartment we now had a lovely garden for Kit to run in, two floors (rare in Japan!), a guest room for friends, and a wonderful office surrounded by nature. Every room felt romantically warm with huge open windows and an open kitchen.

It was the Japanese quiet "life" we had been dreaming of for a long time.

We were optimistic and very happy.

Fast forward a month.

We found out Micaela was pregnant.

We were both that wonderful combination of excitement and nerves. We scheduled an appointment with the local birthing clinic to begin our regular checkups.

Japan's birthing clinics are sort of more like hotels than clinics I'm used to in Australia. They have a masseuse on staff, high-end food (their Instagram accounts regularly show off their lunch and dinner services), and loads of things to ensure new and expecting mums are well-looked after. We chose a reputable one close to us that we could walk to easily.

After the first few check-ups, everything was looking ok so we began telling our family and very close friends. Like us, they were just as excited as us.

I still have a fond memory of telling two friends, on different calls, and being surprised to see both of them cry with happiness for me. It was so moving. After those calls and letting our family know, the nerves started to go away. We started to become very excited.

The early months of pregnancy were wonderful.

Things remained peaceful during this time. When I look back, this was my favourite part of the year.

We'd been going to our regular clinic visits. Everything seemed to be going well. There were no markers that would indicate there would be an issue. Our doctor spoke English so it was easy for me to ask questions and get answers.

We also did a few additional tests to check for issues but those all came back clear.

At this point, we had no reason to worry about our little one.

Our friends started to send us presents. We even started to prepare by buying things ourselves.

Little dresses, pacifiers, and all those things expecting parents begin to accumulate.

A seed planted.

Around this time, I began stewing on the idea of finding a new bastion for my core business.

It wasn't something I never thought I would do, but with my new software business (Bento) growing fast AND the new baby on the way, I thought I should at least now consider it.

The business had evolved from a typical "we do it all" marketing agency into a self-managed productized service with a phenomenal team. It was at the point where a new operator could comfortably take it over.

As that business grew, more people counted on us to make it work, which I embraced and loved, but also acknowledged that it did need full-time focus to ensure that the business would last the distance. The team deserved this.

Three things became clear to me during this time:

  • the "you can't run two businesses at once" people were probably right
  • that "running a business with a newborn baby" was going to be hard
  • doing both of these at the same time was near impossible

The seed was planted.

An offer appeared.

I started putting out the idea to some friends and people in my network that I might be interested in selling. A few had already expressed interest in buying the company in earlier years so it made sense to hit them up.

One of those conversations began to pick up pace very quickly.

As that was happening, I went to another friend to tell him about the potential buyer of the business to get feedback. To my surprise, he also became interested and expressed that he wanted to acquire it with his partner. Additionally, they wanted to move fast.

I was delighted as they were the perfect fit if we could come to a deal. The team loved working with them as previous clients so I knew they'd be receptive to them as the new owner.

Within a day or so, I had an official LOI (Letter of Intent) to buy the business.

Due diligence began shortly after.

(Sidenote: It's worth noting here that the potential buyers were kind, fair and empathetic throughout the entire sale process but due diligence and the process of selling your main business for any amount of money is A LOT of stress no matter what. I had to call my old man every few days to get feedback and help. Without his help throughout the sale journey, I may not have pulled it off at all. I can't thank him enough).

With a new baby on the way and a possible business sale, 2021 became the new candidate for the best year of our lives. Even if the sale fell through, we would have a beautiful little one to raise in our beautiful new home.

".... what is that black dot?"

We were back at the clinic for another routine check.

As the doctor was doing his usual check, I noticed a small black dot above our baby's stomach.

"... what is that black dot?"

He goes quiet and continues to look around.

He took some photos to research offline and told us to come back in a week.

At next weeks visit we rocked up and had a new session with both our primary doctor and the head of the clinic. During the whole session, they remained dead silent.

I remember how strange the room felt and, because I couldn't speak Japanese, I was missing a lot of nuance to the energy that Micaela was picking up. I could see it on her face. She was worried.

After they finished, they sent us to reception to wait.

A few minutes later, they called Micaela to the front desk and handed her a refund for the deposit.

They instructed us to go to Kyushu Hospital to get a check done there.

We could "come back" IF everything was cleared by them.

🚩 🚩 🚩 This was a major red flag. 🚩 🚩 🚩

Why would they refund us? Surely everything would be ok? The previous tests were accurate, weren't they?

We begin Googling our heads off based on what we knew so far.

Things started to look shaky, but we remained optimistic nonetheless.

Getting a second opinion.

We arrive at Kyushu Hospital. We're nervous.

The new doctor arrives, introduces himself, and begins an ultrasound.

Similar to our previous clinic visits, he's quiet and doesn't say a word despite us peppering him with questions. This is normal in Japan whereby you don't really get answers until there is certainty unlike back home in Australia where doctors are a little more empathetic.

Perhaps it's for the best, I'm not sure which approach I prefer more.

Hope is a tricky thing to manage for doctors.

He finishes, turns around, and begins telling us that he's found a few problems.

As it turns out, the clinic missed a lot of in the earlier scans.

In one single scan he found:

  • Multiple serious heart defects
  • Cysts on the thyroid
  • Omphalocele
  • Abnormalities in the kidneys
  • Potential tumors
  • Issues with the kidneys

... and a few more that I can't quite remember.

If you find out that your child has just one of these abnormalities it's usually going to be ok. Humans are remarkably fixable, even for things like omphalocele.

Where it becomes a problem is when there are multiple red flags like we were now facing. The chances of a genetic issue become significantly higher.

The doctor believed something was up but wouldn't elaborate.

You're probably thinking, why didn't the earlier clinic pick up these things?

Great question. I'm still, to this day, furious about this and working to overcome how I feel about the clinic for putting us through what we went through.

Because of their mistake and timing, we had to carry full term knowing that the outcome may possibly be grim.

In Japan, birthing clinics act sort of like a luxury delivery center — a hotel pretending to be a hospital. They optimize the process of conception to birth only for the most common problems families run into.

If they spot ANY sign of an issue, they send you to a real hospital.

As a result, the doctors at birthing clinics are not exposed to the same issues and defects as the city hospitals. They miss the obvious flags.

Based on what we learned, we scheduled Micaela for an amniocentesis the next week to get the final answer on what was wrong.

Things start to look worse. We're scared.

The sale closes.

Whilst we waited for the results of the amniocentesis, I was working hard to get the business ready to sell.

As I mentioned before, selling is always going to be stressful and the situation with our child was always on my mind. I just pushed through it with the support of Micaela and my dad.

After around a month of hashing it out, the buyers and I had come to a number we agreed on and were jotting down the final details of the agreement.

Micaela took this picture of me on our trip to Universal Studios Japan wearing a Harry Potter cloak where I was either signing a document or approving one, I'm not sure which. I just remember being happy, briefly, with her.

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Both the buyer and I were excited — this was the largest deal either of us had done. It all felt right — but I still couldn't help but feel so disconnected throughout it all.

I was achieving one of those life goals I set out to achieve back in 2015 when I went out on my own to start a business, something I didn't think I'd be able to do before I hit 30, but none of it mattered in contrast to what was going on with our family. A life goal that used to be so important to me evaporated.

We still didn't have an answer to our little one's problems.

I kept telling myself "maybe every issue we're learning about is fixable?".

Every day, I tried to remain optimistic about the journey ahead, using the sale as a sort of temporary emotional boost when I could, but each day was hard.

Micaela and I played emotional tennis supporting each other through this period.

It was emotionally all hands on deck.

Trisomy 13.

We sat down in the hospital room with the doctor and began the standard ultrasound flow.

I noticed a couple of papers on the table and immediately felt sick.

They were upside down. It wasn't going to be good news.

The doctor completed the ultrasound rather quickly then he gave us the news.

Lia 莉愛, the name we had given our child, had a rare genetic disorder called Trisomy 13. Trisomy 13 is a type of chromosome disorder characterized by having 3 copies of chromosome 13 in cells of the body, instead of the usual 2 copies.

This was the cause of all the problems we detected in the previous scans

Trisomy 13, unlike Trisomy 21 (Down Syndrome), is a death sentence.

Most children live only for a few days to a couple of weeks before they die. There are some families who pull out all medical strings available to suspend the inevitable death of their child for a few years but it's not a good quality of life. Browse the #trisomy13 hashtag to learn a little more.

Because we were past Week 30 we couldn't abort (in Japan). We had to carry full term.

We cried. A lot.

From this point to the birth it's all blur.

Around this time, it gets very fuzzy for me.

I remember being in the gym at one point, receiving the wire for the business sale, feeling joy for about 30 seconds, and then going home to cry. The feeling didn't feel like I thought it would.

I remember going on a trip to celebrate the sale. It didn't feel like I wanted it to. We spoke about what may happen with Lia through most of it.

I remember going on a trip to celebrate our anniversary. On that trip, we mostly discussed death and what it meant to us.

I remember just feeling like a shadow was over our lives during this period; we were on a rollercoaster we couldn't get off.

Birth.

At 3:03 on August 31st, my beautiful wife Micaela gave birth to our daughter.

An hour and a half later, she passed peacefully in my arms.

It broke us.

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48 hours later.

We sat in a small room, with our child who had been embalmed already, with a lady we refer to this day as "the bones lady" who complimented us on Lia's femur bones (we later learned there was a 'practical' reason for asking us this).

Bones lady turned out to be a saleswoman for the cities crematorium and organized all the steps necessary to close this chapter of our lives. She was very, very weird but necessary to the process we had to follow.

The next day, doctors held a beautiful ceremony, lead by bones lady, in the basement of the hospital. Things emotionally started to catch up to us more here.

Time started to slow down again after being so fast for so long.

They gave us the box with Lia in it, put us in a taxi, and sent us to the crematorium. Our eccentric taxi driver was too excited to take us there, he drove like a mad man making noises as he made each turn. It was all so bizarre; to this day, I'm still unsure if he was trying to cheer us up or just a nutter.

We arrived at the crematorium, met a man who knew our families name, took us to a a concrete room where we held our own private ceremony the best way we could, and then handed Lia over to be cremated.

I'll never forget that building.

Two hours later, we headed home with our daughter in a tiny white box.

Our neighbor saw us as we arrived home and broke down when she saw that little white box in Micaela's arms.

Dealing with grief and depression.

This year, I've learned so much about the Japanese health system, all the things that can go wrong in a pregnancy, how many others go through this, how strong my wife is, how grief impacts us, and have just been utterly humbled.

Until now, I hadn't faced conflict like this. It was new to me.

This entire year felt like swimming out to the back of the ocean against sets of roaring waves.

Accepting each hit as it comes, pushing to get to the back where you can rest.

But then you arrive at the back behind the waves.

It's calm.

You're done.

But you're still so tired from fighting against the waves all year. You eventually have to go back to shore. You can't stay out forever. You have to return to work, return to life, and keep moving.

Catching the wave in.

We're now back to shore and surfed a couple of good waves to get here. Objectively, outside of the death of our child, day-to-day life isn't that bad. The sale closed successfully, Micaela recovered quickly, Bento is growing faster than ever, we have food on the table, and Japan is not a bad place to live.

Our "small world" is safe.

We still yearn for a little more support. We wish our family was here. We wish our friends were closer. We wish we could travel for much-needed escapism. For those things, we'll have to wait.

For now, we have each other and support from doctors if we need it.

Japan has actually been pretty great at that. Without the doctors, and in particular, the primary doctor who looked after us, I'm not sure we would have been able to get through this journey in one piece. His guidance, love, and care was the only thing that gave us hope throughout it all. Even though death was inevitable it was on our terms. She passed in the arms of her loving father and mother.

Today.

We're only just now beginning to rebuild ourselves and learning what it's like to live with this new story in our lives. Grief takes time and isn't supposed to heal quickly. Sometimes it just doesn't heal.

I think it will feel like it does now for a while.

All this is ok because no matter what Micaela and I both have each other, we always will, and there's a glimmer of hope that next year will be better.

Sometimes hope, no matter how small it is, is enough to just keep trucking.

Looking back at this year, I'm still unsure how to reconcile it all.

There are parts that I should feel happy about when I reflect on them, but I just don't because of the grief.

I'm learning to be ok with this.

Every year doesn't need to be fantastic, every moment doesn't have to be a highlight, you don't need to be happy every moment, and I don't have to be an optimist about everything.

Sometimes, a year just sucks and that's ok.


_As an aside, if you're looking for resources to help I read "Grief Works" by Julia Samuel to learn about a friends grieving process. It served me well during all this and I highly recommend reading it if anyone is looking to help others understand. If you are going through a similar hard time please reach out. My emails and DMs on Twitter are always open to chat and I'll make time. Thanks for reading. _

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