Getting familiar with death

baby incompatible with life

Death’s not something people like to talk about. It’s a subject people often avoid. They’re scared to bring it up for fear of upsetting people. Or it simply just scares them.

I guess it’s a topic that comes with a lot of baggage.

Death’s often a defining moment in life that brings up the big questions, the stuff that we could conveniently procrastinate about delving into for most of our lives. ‘Is this it?’ ‘What happens next?’ ‘Is there heaven and hell?’ ‘What do I believe?’ ‘Will I ever see that person again?’. Not your water cooler kind of conversations.

But for us as a family, death’s become rather familiar in the last 10 years. Miscarriages. Five years of adjusting to a terminal cancer diagnosis my Dad was given, seeing him defy odds, and constantly having to re-evaluate your thinking on whether healing was a reality or a no-go zone. Then Nina, our baby girl born incompatible with life. And now in 4 weeks, another little girl to be born incompatible with life. (And that’s not counting several grandparents that have passed on in that decade too).

That’s enough dealing with mortality to make anyone a little nonchalant about it!

I’ve realised recently how complacent we’ve become. The issue comes up usually when acquaintances realise I’m pregnant. They congratulate, and then I quickly have to explain that no, she’s not healthy. In fact she’s very unlikely to live or live long. That’s generally a conversation stunter! The poor person always apologises and doesn’t know what to say, and so I step in and assure them it is ok, we’ve had this happen before, so know the ropes and what to expect.

Now that’s an even harder one – they feel really bad then 😣. Often they even get teary. It’s hard for them, I’m sure – quite confronting stuff to come to terms with in an instant!

Yet for me, it’s almost become a rote response. I’m not going to hide from questions and I’ll give straight answers. Avoiding telling the truth only makes it more awkward later on when you arrive at school pickup or wherever, no longer pregnant and without a babe in arms.

But my nonchalance or lack of being ‘broken’ as I explain the situation, is hard for some to understand, I think.

Honestly though, how do you respond when you have to share news like that? I have to be ok with telling it, or I’d be in tears every time… Now, I’m all good with tears, but tears do make things even more awkward for the other person! So finding a standard answer just has to be, sometimes.

Even for people close to me I think the way I grieve doesn’t sit easily for some. I’m a very pragmatic person, and often I may seem just a little too ok with our situation… like not visibly defeated by it.

I’m not putting on a face when I seem ok – covering up the real me. I absolutely have my moments of sheer breakdown and feeling sorry for myself. But I also choose to not feel sorry for myself all the time, because I just don’t find that healthy - in fact it makes me feel more down.

A book I’m reading says it well, “Loss requires that we live in a delicate tension. We must mourn, but we must also go on living.” Jerry Sittser - A Grace Disguised.

I remember having this very clear feeling after Nina, that after weeks of lying on the couch watching Spanish dramas on Netflix while I healed from my Caesar, if I didn’t get up and move on – even just a little bit – I could get stuck in this state of sorrow. It’s not that I was avoiding grief, but just trying to put some purpose to life around it.

In my experience, focusing on the big picture rather than the right-now-circumstances changes your perspective a lot. Finding that big picture or eternal perspective is incredibly helpful – it rips you from a reality of pain to an eternity of hope. Day-to-day, that’s what I try to focus on, and soon I guess it just becomes default (but just to note, there are definitely off days!).

Thing is, there is no right way to grieve, no perfect way to process. I do what works for me, and others will do things differently. It’s absolutely ok to be broken. But it’s also ok to be ok.

However you do it, I do think death’s a topic worth talking about – not dwelling on, but also not being afraid to mention. It’s part of life, it’s inevitable, and it’s also not something to fear. And when it’s set aside as a taboo topic, it just feeds that fear and makes it awkward to talk about.

I guess this eternal perspective has become even more tangible for me second time around. Death has become so familiar I feel like I’ve lost any fear of it.

I based the name of this blog on the verse “Be still and know that I am God” Psalm 46:10. The literal translation means “Relax and know that I am God”– all powerful, all capable, in control, and on your side. I guess it was a focus for me to keep my perspective in the right place, not get frantic over detail, and to leave it to God because that’s all I could do. The reality though was a lot more difficult.

Yet this time around, after the initial coming to terms with it, I have felt an overwhelming peace about our situation – the reality of losing another child, the details of what happens when, whether we get to meet the baby alive, the aftermath and depths of grief… all manner of things that last time were very hard to ‘be still’ about have not worried me this time. I can put a bit of that down to experience, but the majority of it down to a spiritual peace, a peace that I believe can only be provided by God.

They say familiarity breeds contempt. And perhaps this familiarity with death and the blueprint of Nina has lead us into a bit of a lack of focus on the possibility of life!

We were reminded by one of our specialists recently that this baby may well live for longer than Nina, something we had not put much thought into. For a baby to live for an extended time with this unbalanced translocation is very uncommon – but it is not an impossibility. There are two recorded cases, one child living a year and the other 2.5 years. How they lived is what we need to find out more about, and will do in appointments this week.

It is all very much an unknown and something we will embrace however it pans out on the day!

#incompatiblewithlife #baby2 #hope #notcompatiblewithlife