“I’m standing on the outside looking in
I’m standing on the outside looking in…”
- Cold Chisel, Standing on the Outside

Over on her blog Grit & Glory, Alece wrote a post today about friendship. I wanted to comment, but I wasn’t sure I’d be able to keep it short – she challenged me to write it up, so here it is. The first line in her post was this “I moved to Nashville to chase down community.”

Although not a driving factor for us, I was hoping that I’d be able to chase down the same thing when we moved to Melbourne in 2005. The church we left when we moved here was a medium sized church in a relatively small town. It was a pentecostal church with leadership that leaned towards fundamentalism. I was increasingly struggling with questions that challenged that theology and with the depression that I was suffering on and off, I wasn’t a very happy part of that church community. By the time we moved, I was attending church sporadically, at best.

Growing up, my family was pretty insular. Part of our “spiritual journey” as a family was attending churches for two or three years at most, then moving on. So between staying away from non-Christians and moving from church to church. It makes it hard to really connect with people when they’re gone from your life after a couple of years.

On top of that, there was my near-complete inability to understand how friendships actually work. I’ve spent most of my life feeling like I’m standing outside the window, peering in at people who seem to intuitively understand how to relate, like some shared unspoken language.

To me, the move to Melbourne presented a fresh start. I thought it was a chance to make new friends, in a large enough place where I could meet lots of new people and connect with some of them, and maybe become part of a community.

And…

It hasn’t really worked out like I’d hoped. We started attending a church; it was fairly small, and… maybe a little bit too similar to our previous church. There were a few young families, and a many lovely older folks, and quite a few youth. Not long after, most of the youth left. Then several of the people we’d connected to and started building relationships with left the church or moved away; excepting a couple of people, I struggled to really connect to those who remained. The church itself was changing too; not in a “bad” way – but I was reacting badly. I now understand why I was reacting, but the upshot is this: I think it’s difficult, or maybe even impossible to be part of a community when you’re reacting to the very things that drive that community, and/or when you’re questioning beliefs that the community considers to be their core beliefs.

As I drifted away from that community, I started spending time with the CafeChurch community. They’re a fantastic group of people, and for the first time in a very long time I felt like I was in a place where I could safely ask questions and not feel threatened or like I’d be driven away with torches and pitchforks (or “prophecies” and “biblical” smackdowns).

I have a family, and we live in Melbourne’s outer suburbs. CafeChurch is in the inner suburbs on Tuesday nights. I’m grateful for the friendships I made there, but the way our life works as a family just didn’t mesh well, and I didn’t feel like on my own I could be an active part of their core community.

We’ve been at our current church for a bit over a year, but I still feel like I’m disconnected, and I don’t understand why. I find myself wondering “Is there something I’m not doing or saying? Is it because these people have established relationships over many years, and we’re newcomers? What is the piece of the puzzle that I’m missing here?” – and what effect will my struggle with faith have?

The ‘how’ of friendships still mystifies me; I’m not sure what to do to make deep, long-lasting friendships with the people around me. Over the years, I’ve developed a few good, long term friendships, but I have no idea how they came to be, and most of those friends are geographically distant. For the friends who are geographically closer, I don’t know what the practical things are to do with the friendship to keep building it. Maybe everyone feels just like this. I just don’t know.

The truth is, I really don’t understand how I came to be friends with these wonderful people – I’m just grateful for their friendship.

A few weeks ago, @LosWhit posted this photo to Twitter, and I recognised a few of the people I follow on Twitter. I had a visceral reaction to that photo; I long for friendships that feel like that photo looks – but how do I get from here to there?

Unfortunately, one of the possibilities of renting is being asked to being given notice to vacate. Of the two houses we’ve lived in since we moved to Melbourne, the first we had to leave because a real-estate agent (apparently) didn’t report anything that we reported back to the landlord – and a switch to a new landlord didn’t end well when the file contained none of the wear and tear we’d reported. Lesson learnt: Small children cause damage, and when you report it, ALWAYS put it in writing.

The second time, it seems the landlord got caught out by the GFC and had to sell. We got the notice to vacate two days after Jessica’s funeral. Timing was pretty poor, but could have been much worse, if it weren’t for our rental agents being particularly awesome and going in to bat for us with the landlord.

We landed on our feet when we got this place. It ticked almost every checkbox we had, and we got to stay with our current rental agents. But the front yard…

We live on a corner. The photo that was up on the rental website showed lush green grass in the front yard. That photo is obviously several years old. Each morning as I walk out to my car, I look at the yard, and it irks me. According to the rental agent, the landlord gave previous tenants permission to park on the once-was-lawn. The lawn took an absolute beating from the years of vehicular abuse. The front yard now consists of areas of lush hard-packed dirt, particularly hardy weeds, a partially-exposed-and-likely-defunct watering system, and a rusty white mailbox. There’s a parking area of pavers that are disjointed and surrounded with weeds. This yard has a lot of potential, but it’s taken so much damage for so long.

We’ve been living here for almost nine months now, and every day I’ve live with the consequences of the years of abuse… and I’ve done almost nothing about it. I’ve made a few feeble attempts at improving things, but each time I’ve lost hope and given up. Sure, I’ve mowed the weeds when they’ve gotten out of control, but beyond that… I’ve let things stay in their sorry state.

Why do I continue to leave things the way they are?

I guess I’m not sure where to start. I want the yard to be awesome, but to get from where the yard is to where it could be will take so much work. There are a lot of weeds, and some of those roots run pretty deep. I don’t have a green thumb, and I’m not particularly inclined to ask for help again. People have their own yards to deal with. There are people I could pay to come and fix it, but there are higher priorities.

Truth be told, I don’t have to do anything about it. I don’t own this house. I didn’t cause the damage, so there’s no reason I need to fix it. I can complain about it, continue to mow the weeds, and leave it as an ugly and constant reminder of the past.

I’ve decided not to do that; I’m going to try again.

A few days ago, with the hard-packed ground softened by the recent rain, I dug a six-foot long, six-inch deep channel and re-buried the worst of the exposed watering system. This weekend I pulled the ugly, rusty letterbox out and replaced it with a new letterbox. I pulled some weeds out of the crevices in the footpath, and dug up a bunch of pavers and straightened them.

There are people who have helped me out in the past, trimming back long overgrown plants, dealing with weeds and things I’ve left undone that I should have taken more responsibility for, but I still can’t bring myself to ask for help this time.

It’s not much, yet. There’s still so much to do. It still seems overwhelming, and I’m not even sure if I can undo the years of damage. There are things there that I honestly have no idea how to fix. I know they’re beyond my capacity to deal with alone, but I’m not sure who to ask for help, or if they’re even fixable.

Truth is, there’s a whole world of people whose yards are a mess. Some of them really want to fix it, some are tired of trying… some just don’t care. There are also a whole lot of gardeners with perfectly trimmed yards. Everything looks like it’s just right, with nary a weed to be found. So many seem to spend their time loudly criticising their neighbours for the state of their yard, or insisting that if they tried harder they could have a better yard, or they get together with other gardeners and complain about people who won’t fix their gardens…

Perhaps their neighbours might just need someone to be with them while they work on it. Maybe they’ll need a lot of help to get things in order; or they might never get things sorted out. Even if they can’t get their yard in order, the world might be a slightly better place for asking a neighbour “need a hand with your yard?”

For now, I’m going to keep working on what I can work on, with some small changes each day. Perhaps in time I can be proud of my yard. I also need to deal with my garage, and there’s no-one to blame but myself for that mess.

If everything had gone to plan, at this point of the year, I’d be cuddling up with my six month old daughter, watching her roll noises around in her mouth and attempt to make words with them; battling with my wife and kids over who changes the next nappy, and wondering how long it would be before we’d need to start putting baby gates up around the house. Excitedly awaiting her first Christmas.

Instead, I live with the loss; I’ve lost more than I expected.

There’s been other things happen, mostly good, a few not so good. Nothing in the order of what happened with our little Jessica. Although we laid her tiny body in the ground on that hot summer’s morning in January, I didn’t realise until much later that I’d taken something away with me too. A seed of doubt, planted by questions thrust upon me by circumstances outside my control.

Oh, I’ve tried to ignore them, to push them away, to drown them. But they refuse to leave me alone, to go away quietly. They nag at me, nipping at my heels.

I know it galls some of my friends, but I absolutely believe in the existence of God. I also believe that Jesus existed and what is written in the gospels about him, and the things he said and did are true. I’ve actually tried not believing it, and failed miserably. These things, for better or worse, are wired in deep in a way that I could sooner disbelieve in the existence of the sun than I could in the existence of God.

The questions about our daughter’s birth defect and death aren’t the only ones I carry with me. They haven’t challenged those core beliefs, but they have affected what comes after. Earlier in the year, after Jessica’s death, I was once again diagnosed with depression; this time was different – I didn’t feel dark, or like I was under a great weight – I just felt numb.

Off to the shrink I duly went. She’s great. We talked over the next few sessions, and I started to feel a little less numb; towards the end of our fourth session, I exploded.

Just like that. One little question, and twenty years of buried rage and anger started boiling over. Where I was storing it, I have no idea. But there it was, a deeply infected splinter in my mind. I know where the anger comes from, and who I was angry with. What I didn’t know – and to a degree still don’t – is how to process the anger, or the questions that it brought to the surface.

I lived through something for an extended period of my life that would seem utterly ridiculous out of context. While I’m not at a point that I feel I can explain it further, I’ll say that what happened was not illegal and did not involve any kind of sexual or ongoing physical abuse. I’ve since spoken with, and forgiven, those who were directly involved (so if you’re reading this and wondering “is he talking about me?”, I’m not). The most important point of this labored paragraph is that what I went through was deeply intertwined with my faith.

There have been times over the past few years when I started poking around at the sore spot inside my mind. I knew something was buried there. It hurt like hell when I poked it. I talked around it with people, knowing it was there, but not knowing what it was. Certain situations caused little flare-ups. Conversations with a certain people caused it to ache. One weekend church conference in particular nearly pushed me right over the edge into the crazy.

It wasn’t until after a couple of months of attending our current church that I realised I wasn’t feeling defensive in church anymore – and how many years I’d been feeling defensive. Truth be told, the churches in which I felt so defensive were full of lovely people, but the similarities within the way the churches operated, and the actions of some of the people to those things in my past made me feel like I wasn’t safe. I just didn’t understand why at the time.

While I’ve felt safe for the past year and a half we’ve been part of our current church, the events of the past twelve months have brought me to a place I couldn’t imagine I’d ever get to. The problem is that between our experience with Jessica, and acknowledging both the events and the anger arising from that period of my life that I’d buried so deeply, my faith has gone from tattered to shattered.

The truth is, right now I can’t stomach another simplistic, pat answer to a complicated question. And boy, do I have a lot of complicated questions now.

There are some who would say that my hanging around those liberal emerging churchy type people is what went ‘n’ done this to me. If so, you’re putting effect before cause. A big part of the reason I “drifted left” was being given the same simplistic answers repeatedly – or getting smacked down for asking the questions in the first place. When you meet people who aren’t afraid of the questions, and are willing to admit they don’t have the answer, there’s a kind of safety there.

Let me be blunt here. This is seriously addressed to no-one in particular, but I’ve been on the receiving end, and witnessed it happen to others:- if you’re a Christian and you repeatedly give the same advice, and it does NOT work out the way you claimed it would, jumping straight to telling the person you’re talking to that it’s THEIR fault and they need to try harder, and not asking yourself – or God – what else might be going on, is a great way to drive people away. From the church, or even from God. Same with giving a simple proof-texted answer to any and every complicated question.

Feel free to console yourself with “they wanted to continue in their sin” or “they refused to repent” or “they refused to submit” or my personal favorite “they have a rebellious/Jezebel/whatever spirit” – whatever helps you sleep at night, and saves you from having to ask yourself – or God – any difficult questions.

Perhaps you’re right, and one of those things I listed above is actually true. The thing is, I’ve met, and read, and talked to enough people in and outside the faith who’ve been shat on from a great height by well-meaning (or not-so-well-meaning) Christians, that I’m really wondering whether a lot of the church even really know the One they claim to believe in.

When He said “love your enemies, and pray for those who persecute you” and you hate those who disagree with some theological point, and REALLY hate those who don’t believe the same thing you do, you’re doing it wrong!

To those people who’ve shown me mercy and grace and love as I’ve poked around up until now trying to understand what it was that was hurting so much, and driving me away from the church, thank you. I love you guys. Please don’t give up on me now; but please understand, I can’t unscramble this omelette.

I don’t know if this will make sense, but I still believe those core beliefs, but there’s not much of my faith left any more. Perhaps this is my ‘dark night of the soul’ and I just have to go through it, or perhaps I’m just not “one of the elect” and I have to come to terms with that.

I don’t think I’m depressed, and I’m not giving up. I just don’t know where to go from here.

For now, as a good friend suggested a couple of days ago, maybe it’s time to stop asking the questions over and over, and to wait for the answers.

However long they take to come – if they come at all.

Actually, that’s not entirely true. I haven’t been writing as much as I would like to. When I do write, I can’t finish the posts. They just ramble off into nothing.

I’ve been tweeting too, but maybe I’ve been wasting my words in 140 character bursts.

But that’s not even the entirety of it. I’ve been grasping at words for months. They won’t come, at least not in coherent paragraphs.

They’re unformed, ephemeral. When they do come, it’s at the most inopportune times. When I should be working, or when I’m trying to fall asleep (and I’ve been struggling to sleep for months), or when I’m in the car, with both hands on the wheel.

But when I sit down to actually write, the thoughts and ideas are gone like the fog burning off in the morning sun.

The grief seems to be gone, but it feels like everything is upside down at the moment. The questions left behind are immense. I want to ask them here, but I fear the response.

Really, I fear a lot of things. It’s only over the past few weeks I’ve really come to understand why. I made a comment in a post a few years ago about sitting in a little room talking to someone, that sometimes it helps and sometimes it doesn’t.

After many hours sitting in a little room talking, which seemed to help a little, at least for a little while, everything suddenly blew apart. I finally saw “it”. The deep well, shrouded in darkness where I’d been burying my anger for so many years. Along with that buried rage, came the memories. The things I’d blocked out for so long; the contexts for memories I did have that floated just out of reach of understanding.

The “why” for all the years of depression.

I’m not sure I should unpack it in public, though. Even in part. I know that some of the players in this drama would rather the past be left there. I know that they’ve changed, and asked forgiveness, and I’ve chosen to forgive them.

There’s my side of the story thought; a story with words like spiritual abuse and manipulation. What that stuff has done to me, and how I work through it. See, it might have started over twenty years ago, and ended nearly a decade ago, but I can finally see the truth in all it’s ugliness, and I’m dealing with the consequences here and now.

The forgiveness hasn’t taken away the anger; at first it felt like the Deepwater Well in the Gulf of Mexico, surging away uncontrollably, while I struggled to stop it from catching alight on the surface and burning everything in it’s path.

Now though, it feels like an oil slick, covering everything in sight with a film that I can’t yet work out how to remove.

I’m determined to get through it, to not let it define my future any more, but I don’t think it’s going to go away on it’s own… that strategy hasn’t worked thus far.

There it is. I sat down to write about not writing, and I ended up writing.

We were supposed to be in the last couple of weeks of our pregnancy. Tan lying on the lounge like a beached whale being cared for by her team of enforced volunteers. It was supposed to be exciting and full of anticipation, this last mother’s day before our family of five became six.

Things don’t always go as planned. We’re in surroundings that are slowly becoming familiar as “home”. The cradle and cot are packed away in our new garage; the bouncer lies empty atop a pile of boxes.

Instead of joy and celebrating the ones who are with us, the day is tinged bittersweet as we ache for the one who is not. The undercurrent of sadness is so strong; as we both sat sobbing in church this morning, it felt like it had become a rip dragging us away.

Please, spare a thought or say a prayer today for the mothers whose arms are empty against their will; whose hearts ache for those they’ve lost, or for those that may never be.

You may find yourself the willing, or unwilling, recipient of books on pregnancy, childbirth, natural childbirth, child names, name meanings, biblical name meanings, child rearing, child discipline, parenting… until you find yourself wishing you had a personal GPS transponder for someone to dig you out from under the avalanche of books.

Still, it was exciting the first time around. The anticipation leading up to the due date. Being shaken awake with “I think it’s time” in the middle of the night. The second and third times around were different every time, but just as nerve-wracking and exciting.

None of that prepared me for Jessica’s birth.

That excited anticipation was replaced by a gnawing sense of dread. The cold hard knot in the pit of my stomach grew harder and heavier as the date inexorably approached like a freight train, as lay tied to the rails. I questioned myself over and over “Did we make the right decision here? Is this what we should do?”

I’d watched my wife’s emotional state slowly become more fragile as the weeks went by. I struggled not to withdraw into myself. Each day seemed to bring the tale of some stranger or worse still, acquaintance, congratulating her on the pregnancy. Asking her how things were going? When are you due? If nothing else, this reassured me that we were doing the right thing. I honestly don’t know if she would have made it, at least emotionally, if we had gone to term.

I woke up early on the morning of the 17th of January to an appropriately overcast sky. I called the hospital at the appointed time as requested… and was asked to ring back later, as it was “right in the middle of a shift change”. Tan and I stared at each other in disbelief. We rang back 15 minutes later and were told to make our way to the hospital.

When we arrived at the hospital, we were introduced to the first of three nurses named… Jackie. Well, one was a Jacqui, and one was actually a midwife, but it was a much needed amusing moment in a day that desperately needed a little levity.

We settled into our birthing suite, and then… we waited. Just after nine o’clock the obstetrician gave Tan her first dose of medication, and we were told that it might take a few hours, or even a few days. He also reiterated to us that it was unlikely that our daughter would survive the labour.

Nothing in my life could have prepared me for the helplessness I felt watching my wife in an increasing amount of pain as that day went by. Nurses, midwives, and social workers came and went.

The day seemed endless. In that room, I felt like we were cut off from the rest of the world. I moved from uncomfortable plastic chair to the end of Tan’s bed, and back again. Occasionally wandering around the hospital while Tan dozed.

Just after 9pm, Tan knew it was time, and we called the nurse in. This was not like the birth of our other children; there was pain, and tears, but there was no excitement, no joy to mute the suffering. I cried, overwhelmed with fear, holding Tan as her unnatural labour came to it’s terrible end.

The moment I saw my daughter’s face for the first time, I knew that she hadn’t survived the labour. Her tiny, perfect face was bruised, her eyes still closed to a world she would never see. I cut her umbilical cord, and the nurse passed her to me. We took turns in holding her, bathing her in our tears and prayers.

My tears flowed again as I dressed her in a tiny outfit, smaller than her sister’s doll’s clothes; the only chance I’d have to be a daddy helping this little girl get dressed. It was donated by other parents who’d been through what we were going through; I worked with the nurse to engineer a solution to allow her tiny knitted beanie to stay on her head.

A bit later a different ob/gyn stopped by, and proceeded to explain to us how our daughter’s birth defect was a statistical anomaly, and how we shouldn’t be too worried if we wanted to try again. He went on to say that nature was constantly experimenting, and she was just an experiment that went wrong, and didn’t naturally terminate in a miscarriage when it should have, like usually happens.

As he left I thanked him through gritted teeth, and kept both hands jammed firmly in my pockets, so as to avoid providing a visual indicator of what I thought of his considerable tact and wonderful bedside manner.

We both held her tiny body for many hours over the next couple of days. I stared in wonder at her tiny, perfect hands and feet. I apologised to her that there was no way for me to save her. Our children got the chance to meet, and say goodbye to their sister.

Whereas the labour seemed to take forever, the time with her seemed to vanish, and it was suddenly time to say goodbye, knowing we’d never get the chance to see her face, or hold her in our arms again. The next few days were a blur, getting everything organised for the funeral, and suddenly it was upon us.

The Saturday morning dawned with an overcast sky, and we left early to make our way to the cemetery; it seemed a little excessive until I committed one of my classic driving blunders and turned left when I should have turned right, but we arrived on time.

There was another moment of panic when I managed to snap the CD with the songs we’d chosen for the funeral, but between an iPhone, one friend with the correct cable, and another to DJ the songs at the right time, they averted disaster (thanks again for saving my bacon, Liz and Fraser).

The service started; our eldest son carried his sister in her tiny, pink gingham-covered casket from the hearse to the grave, while I carried a flower arrangement. The early clouds had burnt off to a bright sunny day, and the service that had taken hours to organise seemed to fly by in a blur, too fast for the gravity of the situation.

As a final symbol, the five of us each had a purple balloon, with a sixth special clear and pink butterfly-printed balloon to represent Jessica. We leaned in together over her grave, and released our five balloons simultaneously. The balloons stayed together in a group and flew southwards with the breeze. As a family, we then released Jessica’s balloon together.

We watched it fly straight upwards, into the clear blue sky.

That was how we said goodbye.

This is an open invitation for friends and family to join us in laying her to rest at 11am on Saturday the 22nd of January in the Avenue of Rainbows at Bunurong Memorial Park, 790 Frankston-Dandenong Rd, Dandenong South (Melways Map 128 A5).

Afterwards we will be gathering at The Eating House, Wellington Village Shopping Centre, Wellington Road, Rowville (Melways Map 82 C3) at approximately 1pm. Finger food, and tea & coffee will be provided, with cold drinks available for purchase.

Thankyou for your prayers, love and support at this difficult time.

We waited in a small alcove surrounded by happily pregnant women. No-one tried to start a conversation with us, which was a relief; we’ve got a few friends who are also pregnant right now. I feel awkward a lot of the time, because I don’t want our situation to take away from their joy. We’re joyful for them even if our journey ends differently.

One by one the women filed out for their ultrasounds, leaving the two of us waiting… and waiting… and waiting. Eventually, I went looking for a bathroom; of course, that’s when they called us. We followed the ultrasound technician into a re-purposed hospital room, awkwardly filled with ultrasound equipment and posters for Disney movies proudly displaying that they were “NOW AVAILABLE ON VHS!”.

She was friendly and efficient, explaining to us what we were seeing. She took some 3D ultrasounds as well; one particular image will be burned into my brain as long as I live. Once she was satisfied that she’d obtained all the images she required to verify the diagnosis, she excused herself and departed to find the obstetrician.

So we sat there together in a darkened room, with Ariel the Mermaid staring down at us, waiting…

Eventually two obstetricians showed up. They had reviewed the images, and told us that everything was as we had been told to expect. The 12 week scan was correct. There was no miracle. What was left of our daughter’s brain at the twelve week scan was now gone. Her brain stem remains intact, but there is no chance of her surviving. They took us through all the options available to us, we explained to them the path we’d decided to take, given this particular outcome.

On the 17th of December, our waiting began anew. Phone calls were made, obstetricians called other obstetricians, who called hospitals. We waited for a call from the hospital that never came. More calls were made, and eventually our obstetrician called us back to tell us that we were booked in for induction on the 17th of January, 2011.

We spent Christmas in Sydney with Tan’s family and our friends, and saw in the New Year in Canberra with my family. While the date grinds inexorably closer, we chose to make some memories for our family, in the hope that our children will remember this time in our lives with joy, tinged with sadness though it may be. It was a blessed time; like being in the eye of the storm.

We both went back to work on the 4th of January. I got the easy part of that bargain; Tan runs the creche at a local gym, looking after toddlers… and babies. It’s been a difficult time for her.

It’s constantly there in the back of my head. I try not to think about it, but I can’t shake this terrible sadness; waiting for the inevitable. Over the past week at work I’ve become increasingly unfocussed; my employers have been great about it. It’s like the old canard “the light at the end of the tunnel is an oncoming train”; except in this case, it’s not just cynicism.

And right when my wife needs me to be there for her, I’ve been struggling (and failing) not to withdraw into myself.

This week has been particularly hard. Watching the flooding in Queensland, seeing the grief of people who’ve lost their homes – or loved ones with whom they’ve spent their lives. A boy the age of my eldest son giving up his life to save his younger brother – the age of my youngest son. Stilgherrian’s suddenly having to say goodbye to his beautiful cat, Artemis. So much tragedy this week. I don’t know how to balance the sadness of and for others with my own grief.

It’s now Saturday the 15th of January. Our time with our daughter is nearly over. On Monday, we’ll meet our daughter – and say goodbye. The funeral has been tentatively booked; the funeral director is waiting for my call. We took the kids to visit the cemetery this morning; this time next week, we will have laid our daughter to rest in the “Avenue of Rainbows” beside other children whose families had to say goodbye too soon.

Our waiting is nearly over. I just don’t feel ready to face it.

One week ago, Tan and I were still trying to decide what we’d name our baby. We couldn’t agree on a name. We’d decided to find out the gender, if possible, during the ultrasound we were so eagerly anticipating. The cot we’d been given was standing against the wall in pieces awaiting the decision about whose room it would end up in.

All of that changed in an instant last Tuesday. The days that followed the ultrasound were full of appointments and conversations with doctors and specialists; as much as I wanted someone to take the decision out of our hands, there was no one. The decision was ours alone to make. The doctors and specialists expanded the information we’d been able to gather on our own, but there wasn’t much more to find out.

Acrania is fatal. Our daughter will not survive. To add to our grief, we were advised that if Tan chose to carry to full term, there are additional health risks for her in this situation.

We’ve sat together, holding each other. We cried and talked, and cried some more. Friends and family have surrounded us and told us of their love for us, and their support no matter what decision we make.

When it came down to it, after seeing our daughter on that screen neither Tan or I could choose the grief of a surgical termination. I can totally understand and respect someone else in our situation making that choice, but we don’t feel able to bear the weight of that decision for the rest of our lives.

We’re booked in for another ultrasound at 18 weeks. There’s an infinitesimally small chance that the 12 week scan was wrong. We’ve been advised that the ultrasound provider has a stellar reputation in Melbourne, and people who are familiar with him personally told us that given his personal views, if he had any doubts about the diagnosis of Acrania he would have advised thus, and we’d have already gone through the process of another ultrasound.

Barring some kind of miraculous intervention, by 18 weeks, our daughter’s brain will have mostly or completely disintegrated, and this will be obvious on the ultrasound.

After 20 weeks, a miscarriage or stillbirth is registered with the Registrar of Births, Deaths and Marriages. At this point, if the results of the scan are as we expect, we’ll be spending Christmas and New Years in Sydney and Canberra with our families and friends, our daughter still with us. At some stage after the 20 week mark in January, we’ll be entering hospital for an induced labour.

We’ve been told that it’s likely that Tan would need to be induced even if we went to term; it breaks our hearts that to help ensure Tan’s health, we need to bring our daughter into the world early, and that whether it’s 22 weeks or 40 weeks, we’re confronted with the same devastating outcome.

As painful and difficult as this decision was to make, we feel that the choice we’ve made gives dignity to a daughter that we would dearly love to have in our lives, but circumstances prevent. She’ll be legally acknowledged, and we’re able to have a funeral for her, to provide closure for our family, as we release her into the care of our Father.

Tonight, the cot is still leaning against that wall. A cradle that will go unused sits beside me as I write. I had a conversation today with a funeral director, who gently explained our options. It feels like there’s something so incredibly wrong about preparing a funeral for a child who hasn’t yet been born. Instead of trying to choose a baby capsule to bring our daughter home from the hospital in, we have to choose a coffin. Instead of a welcome, we face a farewell.

Tan barely sleeps. I sleep fitfully. More than once in those early morning moments between sleep and waking I think it’s all a bad dream, and then reality sinks back over me like a cold damp cloak.

To all of you who have surrounded us with your love and prayers, and acts of kindness and cooking, we thank you from the bottom of our hearts. We appreciate this more than I can put into words.

This was not one of those days.

One of the things that I knew about my wife from before the time we got married was that she wanted four children. I, on the other hand, wanted two. I’m the eldest of three, and I know how that plays out. We had ‘J’ 15 months after we got married, ‘E’ came along a bit over three years after that. Eventually, I changed my mind, and our daughter ‘B’ was born just before Christmas in 2003.

As far as I was concerned, three was it. We moved to Melbourne in 2005, I bought a Commodore sedan (“Big Red” as the kids call it) which seats a total of five people, and we settled into our new life here. Tan still wanted four kids, but I stonewalled. Between dealing with the depression, and our aspie kid(s)… No way. No how. No room in the car for another one.

A few months ago, I changed my mind. Several reasons behind it, but the summary is that I did change my mind, and we decided that for us, four would be a magic number. My depression is largely under control. We’ve worked out (mostly) how to manage the ASD stuff. The kids were all very excited, and Tan was over the moon. We started preparing emotionally, and Tan started taking folic acid tablets. Doctors recommend taking folic acid to reduce the instances of neural tube defects. After Tan fell pregnant, we saw our doctor, and she discussed having an amniocentesis test for birth defects. Tan and I had already had the discussion, several times over the past fifteen years, and we still feel the same way. If our child was born with any of the defects they can detect with an amnio, such as Downs Syndrome, we’d find a way to make it work.

We decided that we wouldn’t tell anyone we were trying until we knew we were pregnant, and not until we’d reached the end of the first trimester; statistically, if you make it to twelve weeks without a miscarriage, then the likelihood of a miscarriage is fairly low. We knew what it was like to tell people about your pregnancy and then have to explain that you’d lost the baby; between J & E, we had a miscarriage at 9 weeks.

I’m not good at keeping secrets. As it turns out, neither is Tan. I let it slip to a couple of people; and a few of Tan’s friends worked it out without her having to say anything. According to the doctor, Friday the 5th of November was the 12 week mark, and we were having the ultrasound on Tuesday afternoon.

We’ve been pretty excited, and I couldn’t help myself. Tan agreed, so on Thursday night we called her parents, then we called mine, then the rest of our family. On Saturday we made the news public on Facebook and Twitter.

I left work early yesterday, and made it to the Women’s health centre with two minutes to spare. Tan had to bring B with her, and soon the three of us sat in the quiet dusk of the ultrasound room. We were all excited at the idea of the first glimpse of our new arrival. Pleasantries were exchanged and the ultrasound commenced.

After a few minutes the technician let us know that we were at twelve weeks and six days gestation. The next thing she said made my blood run cold.

“I need to tell you something, but I don’t want to tell you with your daughter in the room.” We asked B to go and play in the play area, which she happily did, and the door closed quietly behind her.

“There’s no easy way to say this, so I’ll be direct. Your baby has an extremely rare birth defect called ‘acrania’.” She then went on to explain to us what this means. By ten to eleven weeks a baby’s facial bones and skull have developed to the point that they appear as white areas on an ultrasound.

Acrania is a neural tube defect which causes the baby’s skull not to develop; in our case the skull and meninges are non-existent. On the ultrasound the technician showed us where the baby’s brain matter is directly exposed to the amniotic fluid, and that the brains are free floating with nothing to enclose them. I apologise for the graphic description, but the way it was described to us is that between the exposure to the amniotic fluid, and with nothing to protect the brain from the wall of the uterus, the baby’s brain is effectively “worn down”. There’s already areas of the baby’s brain visibly showing damage.

According to the literature, acrania is 100% fatal. You cannot survive without your skull. If Tan successfully carries the baby to term (and we’ve been told that there’s no immediate reason to think she will miscarry), our baby will die, likely within a few hours.

Having seen the development of my three children through their ultrasounds, and as they’ve grown, I’ve struggled with the idea of abortion, particularly as birth control. For well over a decade now I’ve described myself as “pragmatically pro-life”; I had a conversation many years ago with a Christian friend who found herself in an impossible “either the baby will die, or you both will die” position – it led me to the conclusion that as with many things in life, not everything is simply black and white. As much as I personally wish it wasn’t, I’ve felt that sometimes there are cases where abortion is sadly the best of a terrible set of options. I’ve made no secret of this over the years. I’ve been smacked around by pro-life and pro-choice proponents; I very rarely discuss it with people the days, because it’s not a conversation that ends well. I long ago stopped judging people who made this choice. They carry enough of a burden already without me adding to it.

Now we find ourselves facing that impossible set of choices.

This is our precious dearly-wanted daughter. We’ve spent the past twenty four hours in agony over what to do. While I say I’m “pragmatically pro-life”, and I would completely understand someone choosing termination in a situation like this, it’s not someone else facing this decision, it’s us. I’ve seen her moving around, her tiny little legs and arms. I don’t know that I can choose to end her life in that way. The alternative is for Tan to carry her to term. In six months or less, she will enter the world, and we will have to watch her die. We’ll still be choosing to end her life, because there’s no point to resuscitation. It doesn’t matter what we choose, we’re choosing death. From what I understand, we can’t even choose to give another baby life through organ donation; the process of our daughter’s death will cause damage to her organs making them unsuitable for transplant.

I know some of my friends believe that God can do amazing miracles. And truth be told I’ve had at least two experiences in my life that are inexplicable to me, and to those who experienced them. But right now, my faith is not strong enough to believe for a miracle. Some of my other friends believe there is no God. I respect why they’ve come to that conclusion, even if I don’t agree; right now, I can understand why. I don’t think I’ve beaten anyone over the head about faith for a long time now, and I’m not about to start again now.

For the record, I’m not interested in having a debate in the comments over the existence of God, or why I’m a Christian, or being pro-life or pro-choice. If you really feel the need to tell me that stuff, then come and see me and tell me in person, face to face. It’s all too easy to judge someone’s situation from afar – it’s a lot harder when you have to look them in the eye. If you really feel the need to “declare a miracle” then don’t do it in the comments. God will hear you wherever you say it. I can’t deal with reading that right now.

I need you to understand this. If we choose to terminate our daughter’s life now, we will have to live with that awful decision each and every day of the rest of our lives. We will have to live with the judgement of people in our community who can’t see past the end of their ideology. If we choose to go to term, it means that for up to six months that should be full of joy, the first flutter, the first kick, everything leading up to that joyful moment of birth are instead months of grief leading up to the birth, and the subsequent death of our daughter.

It doesn’t matter what we choose; there’s no happy ending, and our hearts are heavy and breaking.