Today is just another day
It's not. One year ago, our daughter died
She was never born
She was, in our dreams, in the stories we told ourselves
The stories were lies, the Sun will not rise
It does, every day, even if we prefer the dark
Today is just another day
For us, losing our baby was not the end of our engagement with the medical institution. It wasn't even the start. In reality, it was a continuation of a history going back years.
They took our baby away to perform tests. We had to fill out a form to get her back, which took a few weeks. I could not face collecting the remains. we arranged a funeral director to do that for us. She had our baby cremated and returned to us. We will scatter her ashes, but we have not done it yet. The tests would confirm what exactly had gone wrong with our pregnancy. It was highly likely to be confirmed as a Partial Molar Pregnancy. It would also confirm if there were any genetic anomalies or unexpected causes behind it. I was quite nervous about that bit, because I've got a few genetic oddities of my own.
I was born with a relatively rare eye condition (at least rare in isolation) called Ectopea Lentis. That is, the lenses that sit over my eyes and focus my vision were sitting a wee ways off centre. This, combined with cataracts meant I had extremely poor vision through my right eye (corrected with glasses) and am effectively blind in the left (it's like looking through thick glass - I can count fingers at close range, that's about it). I have since had surgery to improve the vision in the right eye, which is now pretty close to 20/20 when corrected with glasses. The left eye is a lost cause, since I never built the neural pathways in my brain to see out of it properly. There's a bit more to that story, but maybe more on that another day.
I've since learned via many, many doctors' appointments and a few blood tests that the condition is genetic, and can be linked with various problems including heart conditions, and Marfans Syndrome. In my case, it was caused by a very rare mutation of the ADAM TSL4 gene. The research on this is very new, since hardly anybody has had (or at least reported) the specific mutation - but it appears to be recessive (i.e. Difficult to pass down) and doesn't appear to do anything but mess with your eyes. I am fit and healthy otherwise, and none of the rest of my family have this problem.
Given this history, you can imagine we were nervous when we made the decision to have children. We had consulted with the genetics doctors, and they'd said the chances of passing something on to the next generation were very, very small. Ultimately we decided that, even if something was passed down, it hadn't stopped me from living a full life - so we should go for it.
Sam is 4 now, and has not shown any signs of my specific condition. Developmentally he's awesome - happy, healthy, pretty damn smart (if we don't say so ourselves). After Sam, we didn't even think about any genetic risk for our second pregnancy. But now, after this awful year and after losing our baby to a rare genetic mutation - I began to fear the worst. Was there something more to my genetic makeup that could have caused this? The science is new after all - am I the unlucky first? Is this my fault?
A few weeks later we had our follow up appointment with Maternal Fetal Medicine, to talk about what had happened. Annamarie's mother came with us. The doctor who told us our baby had died was there. She remembered us. She was kind. We asked her if she could tell us whether our baby was a boy or a girl. She said she could. She paused deliberately, and we asked her to tell us. She told us the gender of our baby was a female. I had wanted a girl. It hit me in the gut like a sledgehammer. You know that feeling when the grief just explodes from within you and rushes through your bloodstream like ice.
When I met Nick, I knew there was something different about him. As someone who has also had eye surgery (albeit for the much less serious condition of cross-eye and at the tender age of 2), I knew a fellow squinter when I saw one. And not long after we met we were lit up in a spot light, standing in for the leading man & leading lady of the play that brought us together. There we stood, in the spotlight, unnervingly close for people who had only just met, and I looked at him, half-closing one eye to the bright light no doubt in a mirror of what I too was doing and thought how funny it was. Interestingly enough, from the night on we have spent only a handful of nights away from each other. Our destiny was to meet during this ridiculous play The Lucky Chance when were were at university (and what a lucky chance it was, hehe. Sorry, that was an awful pun). We've grown up together, spent the last 15 years being the most important part of each others lives. And it all started that one Saturday night standing in at a technical rehearsal for every other actor in the play too cool to attend.
Not long after we met, I began asking questions about his vision. When I brought it up that night in the spotlight he brushed it off, in the way someone who has an unusual condition that takes some explaining does. We seemed to know almost immediately that the other person wasn't going anywhere, that this was serious, so I persevered. I started coming to his eye specialist appointments and being that annoying squeaky wheel. For those around him, including his specialist, this was a condition that had been discovered at age 3 so there was a sort of resignation. But if I was going to spend my life with someone, I needed to know. What caused this? What could be done to fix it? If it couldn't be fixed, what would happen to his sight?
After being seen by other specialists, who all advised Nick was already under one of the country's best Ophthalmologist's and there wasn't anything they could do, we were back at square one. But that top specialist must have been sick of my asking about all the different options we'd read about, so suddenly it was as if a light bulb went off. There was someone - a Professor of Ophthalmology - if anyone could help he could. And so started the journey that would change Nick's life forever.
This man, this amazing Professor of Ophthalmology at the University of Auckland, had only performed the type of corrective surgery a handful of times. There was a huge element of risk. If something went wrong on the good eye, there was no back up. The other eye had such poor vision, he would be blind. So after a three-hour intensive surgery, 24-year old Nick woke up from the anaesthetic, and while being groggily helped to the car and on the way out of the building stole a glance out of the plastic eye cover to a world he'd never seen before filled with bright colours and sharply clear objects. I remember him saying "Oh my God, that car is so BLUE". And then this amazing man, who we owe so much to, also referred us to a Genetic Ophthalmologist. Who knew that existed? An eye specialist who looked at genetic links. After many consultations, discussions of family trees, meeting his other family members, sending Nick's blood off to the States for testing, we had an answer. There was a study into a rare gene, one of the anomalies it caused was the eye condition Nick has. Nick was a carrier, but I was not. It would be incredibly unlucky for us to pass this on to any children. At 25 and not ready to start a family, this information was merely stored away. But we had the answer that Nick had been wondering about his whole life - now we knew, he was a mutant, a rare special one like the X-Men but where his super power is incredibly poor vision.
When I thought about having kids in following years, I just knew I wasn't ready. It took 5 years from when we got married til when we started trying. Every time we talked about it, I put it off. I would take out this nugget of information about genetics, poke at it and then store it away. I always felt that I would spend the whole 9 months wondering about what kind of child we were bringing into the world, whether it would be healthy. That combined with the fears about giving up my own life, sacrificing my own time for a needy tiny human, let alone the biggest fear - how that tiny human would actually come out! - well, a baby wasn't something I was ready to sign on for.
When we actually did get pregnant the first time, I never wondered, never worried once whether he would be healthy. I guess I was a little preoccupied vomiting all day, losing 10% of my body weight, suffering depression and being malnourished to worry about that. The same could be said for my fear of giving birth. Anything that stopped this nausea, got this little parasite out of me, was totally worth it. A little pain after months of debilitating nausea? Pahhhhhh... that's nothing.
And similarly because Sam has always been healthy (bar a blip at birth due to his entering the world before he was ready), I never worried the second time. The second pregnancy was meant to be a healing experience for us, a chance for us have a better birth experience, less traumatic. For me to appreciate the first few weeks rather than be in a painkiller fog post c-section. Obviously our attempts to heal old wounds ended up causing bigger ones, and if we could go back and change our minds about it, no doubt we would. But when we made the conscious decision to add to our little family, we never ever considered something would go wrong.
But genetics weren't at fault here. A quirk during conception was. Why is it that my egg decided to let 2 sperm fertilise it? Why, when nature says that's impossible? Why does that then cause this rare condition that makes the mother incredibly sick and essentially growing a cancer? Why, when T.J was never going to survive did she hang on for so many weeks making me sicker and sicker? Why was this incredibly rare defect never picked up? So many questions, no answers. It wasn't our fault, we couldn't have prevented it. We were just unlucky. We were unlucky. I wonder if anyone who loses a baby, no matter what the circumstances, is ever comforted by that?
I had questions too. I felt relief that it wasn't my genetics at fault, but I also felt helplessness. If this rare thing can happen to anyone, at any time, then what is the point of planning? Why fight when the world can just sucker punch you at any moment?
I guess that is what this post is about - where is the line between what you should care about and try to influence, and what you can just leave to fate? You might say it comes down to what you have control over - but that's fluid too. If I try hard enough I can control a lot of stuff in my life (my schedule, my body, my work) but at what cost?
I've always been a more "hands off" guy in general. I don't necessarily believe in fate, or that anything is "meant to be" - but I also don't believe in frittering away your happiness trying to influence things that you have limited control over. Getting married, and then having children, has challenged that view of the world. If it's just me on the hook, I can let most things slide - but what if something is endangering (or even just inconveniencing) my wife or my child? How far should I go to protect them? And when does "protection" turn into "control" and become hurtful?
In the end, I think the one thing you can control is your perspective. We do not know if there is anything we did, directly or indirectly, that led to the death of our baby. There could be long-run causes that nobody even knows about now. Maybe a million little events came together or maybe it was one simple thing we needed to include or exclude from our lives that, years later, doctors will understand and recommend to all aspiring parents. But we can't control that - all we can control is what we did with the situation we were handed, and how we think about the experience now.
They say perception is reality. I've said it a lot of times, often to members of my team at work who might be doing great stuff, but have created a negative perception of themselves because of the way they deal with others. But there's deeper levels to it, I think. A scientist might tell you that we only perceive a thin slither of what the world actually is with our five senses (or even that what we perceive is completely false). Our "reality" is really just a reflection, a mental construct that we piece together from the limited input we have access to. Does a blind man experience a different reality (I'm blind in one eye - does that make my reality different from yours?). What if you had a fully functioning body, but no working brain - you could "see" and "hear" and "taste", but you had no way to process those sensations. Are you even experiencing them? What sort of "reality" did our unborn baby daughter experience?
OK, we may have gone a little of the existential deep end here, but my point is that in a very real sense, we can choose what we believe. That can be harmful if you're just denying reality (hello there, President Trump), but in the absence of conclusive information I think we can create the reality that best serves us. You could argue that's what religion is built on - there's a gap there where none of us are really sure, so we fill it in with stuff that helps us to move forward with our lives. Does it matter whether it's true if it's working for us?
We can choose to wrap ourselves up in guilt and regret and doubt and fear. I have done that, plenty. Sometimes I still do. But mostly, I choose to believe that this is one of those random events, struck by lightning, hit by bird shit (albeit a great big pile of bird shit). I choose to let go of my guilt. I choose to believe we did all we could. What else can we do?
I remember the night before we found out T.J. had died, Sam and I were singing to her, as Annamarie lay in bed. It was a lovely moment, one of those things you know you will remember forever right after it happens. I now realise we may have been singing to a dead girl. I could believe that. Or I can choose to believe that she heard us. I can choose to believe that she knew she was precious, wanted, part of our family. I choose that. I choose love. That's my reality.
I wrote this a month or so ago and finally thought I'd share it because it's the start of a conversation on mental recovery after a significant loss.
Today I was meant to have a gastroscopy. A camera down my throat into my stomach to see if there is trauma to the lining of my oesphagus and the valve at the top of my stomach from the months of vomitting when I was pregnant. I have had one before, I knew the drill. Remember to breathe through my nose, stay calm, it's only a couple of minutes.
Except that before they could even try the sedation I lost it. I started hyperventilating, mild crying turned into sobs and a room of three nurses and a Doctor stood still, sympathetically trying to reassure me that everything would be ok, that the sedation would kick in and it would be over in a matter of minutes. But I couldn't pull myself together. I just couldn't stop crying. I felt ridiculous. My conscious mind told me that I was fine, I just needed to breathe, it was only two minutes, that my Doctor was amazing and I was ok. But my subconscious had other ideas. My psychologist tells me that my subconscious was trying to protect me from further trauma, that my body memory kicked in & said "Hold up. This is not a safe place to be. White sterile hospital rooms are not my friend."
And it was awful. Embarrassing. Awkward. A little soul destroying. Because my body would not do what I needed it to. And I was alone, waiting for my Mum to pick me up, waiting longer than I could cope with. I needed to get out of that place, not sit around having a cup of tea with random people who had just successfully completed their own procedure. Their bodies hadn't rebelled against them. They survived the two minutes of discomfort & now they get to talk to the Dr about the results. Me? I had to wait for the Dr to come & make sympathetic noises and tell me that we'll just try some medication & see if that makes me feel better. "It's not your fault", anyone would get anxious about this kind of procedure.
You see, I'm a coper. I've always been the strong one. I survive. Others lean on me. But I couldn't cope with this. It's over a year now since I conceived my second child & my whole world got thrown upside down. It's over a year and the wounds from my pregnancy and loss continue to dominate my life. Turns out I'm not as strong as everyone thinks I am. Turns out this coper can't cope anymore. So how do I cope with that?
To help me understand what Annamarie is going through I have done a lot of reading. This is a really useful article that explains what's actually happening in the body. It's a lengthy one, but it does have some really interesting points like this:
"The big issue for traumatized people is that they don’t own themselves anymore. Any loud sound, anybody insulting them, hurting them, saying bad things, can hijack them away from themselves." - Dr Van Der Kolk
When I was 4 years old, my parents had a new baby - a little girl, Ellen. Two days later, she was dead of a congenital heart condition. I've always been aware of this as a fact of my life, a part of the story but not a source of grief or real sadness for me. I was too young to understand what was going on, and while I've been conscious of what it means to my parents, I've generally thought of it as a bad thing that happened, but not one that happened to me.
With our own journey, that has changed. I will never forget the look on my mother's face when we told her the baby was gone. I could just see her break apart inside, no control, and I remember thinking about what this must mean to her, and what it meant to me, and I broke too. It felt like echoes across time and space, across generations, the sort of sadness that should never be repeated coming back for a second painful round. Those echoes grew louder when my father was speaking to his dad (well, one of his dads, long story) on the phone later, telling him what had happened. He mentioned how the hardest thing wasn't the loss, it was seeing the impact it was having on his son. My grandad had two words for him, and they still break my heart: "I know".
I think about Ellen a lot more now. I wonder about what she would be like, and how she would have changed our family, how she would have changed me. I have two younger brothers - they're much younger than me, and in many ways very different. How would we be different if Ellen had lived? How would the addition of another female presence into our family have changed the dynamic?
I also think about the impact it has had on my parents. They've always carried her loss with them - and I think I can go some way to understanding now how deeply they must feel it. I'm sure it has informed some of the way my brothers and I were raised - consciously and unconsciously.
We had a great upbringing - loving and open. Mum was able to spend a lot of time at home during our early years, which I think was massively important (and which Annamarie is now fortunately able to do with Sam). Dad worked a lot, because he had to - but he still took the time to coach our sports teams, play with us in the evenings on weekends, all that stuff. I now appreciate how exhausted they both must have been.
We were always encouraged to be whoever we wanted to be. no matter how impossible it seemed. In my teens, I harboured dreams of one day becoming a rock star, in spite of my questionable level of talent. My parents were front and centre cheering me on. They let me do an Arts degree at University (which by the way has ZERO relevance to my current career), even when friends of mine were being pushed into business studies or accountancy. I could have turned around to my parents and said that I wanted to leave Uni and go farm salamanders, and they would have said "great, follow your dreams". Not everyone can say that. I think that was just the sort of people they were - but maybe their loss had an influence as well. I certainly know that for me it has crystallized the importance of living for happiness, of doing what you dream of before you run out of time.
My mother has always been very protective of us, and of other children in our extended family, I don't know (and I guess she doesn't know) whether that has been intensified by what happened, or whether it's just a natural personality trait. We're also sometimes a bit of a sarcastic family, and we can be pretty cutting with our remarks to each other at times (though everyone knows it's in jest). I wonder if that has come from a reluctance to really wear our emotions too openly, in fear of opening deep wounds? Or maybe it's just a symptom of having lots of testosterone in the house? How can we ever really know? And is it even worth knowing? None of this is "bad", in fact most of it was really good for us - I credit my ability to communicate clearly and confidently in my work life to the verbal sparring I was able to partake in with my family. And none of it can be changed. It is part of the story, it's part of me.
I think I have some memories of Ellen. I have this image in my mind of the hospital room, of seeing her in one of those clear plastic hospital cots, with tubes and things attached to her - but I'm not sure if that's real, or detail I've subconsciously filled in from the pictures I've seen, stories I've been told. I'm sure I remember the funeral, that I was insistent that she be buried with my toy Kermit the Frog - and then proceeded to absolutely lose it when I realised I couldn't get it back. But again, that's a story that's been told and re-told in my family. Is it a real memory, or a construct of my mind? And does it matter? My parents say they talked to me about the loss. my feelings, all the same things we try to do with Sam - I believe them, but I honestly don't remember it at all. Or maybe I do, subconsciously? Is it one of those things that's just in you, like that moment when you say to your child "I'm going to count to five . . ." and you realise that's exactly what your parents used to say to you, in exactly the same tone of voice, at exactly this sort of moment?
Now I'm raising my own son, who has also lost a sister he will never know. He seems really aware of the fact that she existed, and what it means that she's gone, but will he remember that, and carry it with him into adulthood? Will it make him sad later, or will it just become a bad thing that happened, but not to him? And which is better?
I think about whether all this has changed the way I treat Sam. Annamarie and I have tried really hard to stay consistent and calm with him throughout this time, and apart from the occasional blow-up (usually when we're all dog tired, he's just peed on the floor instead of the toilet and is now dancing a jig in the mess), I think we've done pretty well. But how skewed is our perspective? In what subtle ways has our parenting been shaped by this grief, and how might that show up for Sam later on? I don't feel like we can properly answer these questions, beyond just being aware of it and course-correcting when something doesn't feel right.
But I still can't escape the feeling that this story was somehow already written.
A few months ago we were driving back from a holiday out of town when we hit traffic. We made a judgement call to get off the motorway, find some dinner for Sam and take an alternate route home. We got off at the next exit. We happened to drive past the local cemetery, Annamarie said to me "That's where Ellen's buried". We pulled over, and Sam had his dinner while we paid her a little visit. After a few minutes, I remembered something - we had taken T.J's ashes with us on our trip, thinking we might scatter them while we were away, but it hadn't felt right. That meant T.J was in the car. I went and got her, and brought her back to Ellen's grave. I sent my mother a picture.
I don't believe in God, or in fate, or in a traditional concept of "destiny", but I do believe that everything in the world is connected - that what I do today could impact you, directly or indirectly, maybe today or maybe 20 years from now. The system is flawed, and it's certainly not simple, but the connections are there. What you and I do every day is infinitesimally small compared to the vastness of the universe, but like the ol' butterfly flapping it's wings and causing a tsunami, our actions do matter.
I feel like what happened that day was another echo, rippling across generations to remind me of that, and to reaffirm that every person in your life, whether they lived for 2 days, or 2 weeks, or never saw the world outside the womb, shapes your story, changes you in some way. You take yourself with you, and you also take them.
A warning: this post contains foul language. Lots of foul language. We think it's OK in context, but if you're put off by that sort of thing, or easily grossed out by insects, you might want to stop here. Intrigued yet? Read on.
Grief humbles you. It reminds you that, for all your plans and schemes, all your preparation and deep thinking and big-shit job, you cannot control even a tenth of what really matters in this world.
You know what else does that? Fucking pantry moths. Aka the Indian Meal Moth. You might also know them as Weevils, although apparently these are a slightly different form of evil.
If you haven't ever had to deal with these little fuckers, let me enlighten you. They're moths. They live in your pantry, they get in your fucking food - and, if you don't deal with them, you EAT THEM. With your mouth. They lay eggs. You eat the eggs. The eggs turn into weevils. You eat the weevils in your super-goji-berry-muesli, you ponce. Urgggggh. There is not enough shudder in all the world.
As you may have guessed, we have been to Pantrymothville. They showed up after moving to our current house - a place set in the bush, so you get a reasonable number of creepy-crawlies anyway. But you set your traps, you keep them away from the important stuff, and you make peace with the occasional spider in the shower. And then they show up in your fucking food.
It took us a while to understand the scale of the issue. We noticed them initially, set a few traps, made absolutely sure all our food was in sealed containers, then got on with our lives. Then Annamarie's mother visited, and made comment on how full our traps were and that we may have a larger issue. This is where things got slightly more intense. I spent a good couple of hours one evening clearing the whole pantry, throwing out anything unsealed and slightly suspect, wiped the whole thing out and packed it in. Annamarie and Sam were away for some reason, and I called her to proudly announce that I, man, had triumphed over puny bug. Suck on that nature. Eat it with YOUR mouth, you stupid flying dickhead.
A few months later, we arrived back from holiday, and my darling wife made comment that the new moth traps were awfully full. Then she looked up and saw an unruly gang of pantry moths hanging from our shelves. They were just chilling - smoking a bowl and eating Doritos, those little shitheads. That was it. War had been declared - and the nuclear option was on the fucking table.
We spent the rest of the night pulling apart the entire pantry, throwing out anything unsealed (goodbye giant container of almonds, organic cacao powder, and how many fucking various flavourful seeds do we have anyway?), and wiping down everything else. I washed every one of those sealed containers. Annamarie vacuumed out the pantry, then wiped it out, then wiped it out again. And all the while we both felt completely disgusting.
I want to point out that this was February in Auckland, New Zealand, so it was a hot, muggy evening. We were both wearing very few clothes (rwoar, we know), and both felt as if they were crawling over our bare flesh. This, combined with the cat coming in every 30 seconds to meow loudly at us for no discernible reason, and the unfolding shitshow in front of us, did not put us in the best of moods. We started to turn on each other. Those little fuckers got in my food and made me fight with my wife!
"So am I throwing out the breast pump?"
"But it's on the bin and there's moths in the box"
"No, I said I was putting it there because we'd throw away the box and sanitise everything else"
"But that doesn't make sense, why would you put it on the bin?"
"You don't listen to me do you?"
"I DO listen, I'm just distracted"
"Well EXCUSE ME for being focussed on the mountain of dishes I have to do"
"Well EXCUSE MEEEE for being focussed on all the other shit I have to do!"
*Aggressive scrubbing and wiping*
I think we both knew what was really going on, because without discussing it, we refocused our efforts on the war. I scrubbed and dried container after container. Annamarie tirelessly wiped down packets of Rice Snacks and Instant Rice packets (how much rice does one family need? Especially one that doesn't eat that much rice?). As Annamarie cleaned out the pantry I could hear her seething "Die, motherfucker!" through clenched teeth. I found myself smacking errant moths with much more force than required. At one point I saw one on a section of bench I'd just wiped down, and killed it so hard I hurt my hand. The little fuckers actually hurt me! How is that possible? If you ever doubted that bugs could take over the world if they wanted it, then here is the evidence.
After a long, long evening (I was washing dishes past midnight) and a day's worth of organizing from Annamarie the next day, I think we're finally clear. We've seen the occasional one since, and swiftly dealt with them ("Die, motherfucker!"), but we both remain on edge. Is it over? Will it every be over? Even if we have dealt with this infestation, I'm going to constantly be on the lookout for the next one. It's another tension in an already tense life.
Grief is not always serious. It's not always about the "big stuff", the important emotions. It's boring. It's everyday. It's doing the dishes. It's a stubbed toe that makes you tear a bit more than you should have. It's just feeling randomly really fucking sad for no reason whatsoever. Sometimes it's feeling absolutely nothing when you know you would "normally" be feeling a whole lot of things.
Sometimes it's a fucking pantry moth, looking you in the eye with that smug "I'm all up in your food" stupid moth face. And there's only one way to deal with that situation. To quote a good friend of mine - "die, motherfucker!"
We are a family of 3. This blog is the story of how we almost became 4, why we didn’t, and what we are doing to recover from that experience.