"Mum, You're Up In The Sky:" Navigating Loss with a Living Sibling

I remember finding out the news that Charlie was going to die. My biggest panic, and almost my first thought was, 'how am I going to tell Gracie?' How do you explain to your other baby, your first born, the most precious little being in your life, that the baby that they've (mostly) patiently waited for, for 8 months, the one that they've spent hours upon hours bonding with through the tummy window, the one that they had so many plans for, is going to die. And how do you explain death to a three year old anyway?

I waited until the morning of to tell her. (There was a tiny part of me that was holding on to 'just incase it doesn't actually happen.') We spoke about how Charlie's body was really sick and that he wasn't ever going to be able to breathe on his own. We told her that later that afternoon, Charlie was going to die and so we had to say our goodbyes. In that little room, that is put aside for dying babies, we got to hold him as well as we could with all the wires and tubes all over him. Gracie pored over him, telling him that she loved him, that there were chooks at home, that she was the one that did raspberries on my belly. We both sang songs to him and read him stories and she put her hand on his chest to feel his heartbeat.

After he died, she started asking me why he was changing colour and why he was dying. I felt so poignantly, how important it was to deal with this moment as well as we could as it was going to be so pivotal in how she came to terms with his death. I explained that his blood had stopped going around his body as his heart had stopped beating. There was one moment, that felt as if it literally shredded what was left of my broken heart. She did the most heart wrenching cry, and questioned whether it was her that had caused his death from touching him throughout the last 12 days. Keep in mind, this brave girl that I get to call my daughter, had had to hand sanitise every time she even touched him very gently with one finger. It was a far cry from the cuddles on the couch we had promised her when he was in utero. Of course, I rushed in to reassure her but I didn't feel I could give such a wound in her heart justice, especially when my other baby had just died in my arms.

That night, as I put her to bed in that awful, albeit very necessary, patient carer's accommodation, we looked out of the blinds into the night sky above the concrete buildings and she asked me if we could go and visit Charlie in the morning. I had to explain to her that he wasn't in his body anymore and she asked where he went. I replied that some people believe that their souls go up to the stars. She asked me very innocently, 'but how did he get there, Mum? In a rocket ship?'

On the drive home, all I wanted to do was stare out the window and cry but Gracie, who'd spent two weeks out of routine, in an unknown place with lots of rules, needed my attention. I read her books, without even focusing on what I was saying and every so often would pause to look out of the window, with tears falling down my face. Swipe, back to reading 'Frozen.' Thus, began our journey of grieving as a family; trying to balance our own individual griefs with that of our roles.

I wish I could tell you just how much I'm proud of Gracie. It's not easy being a big sister even to a living sibling but when you are asked to be a big sister to a dead one, it adds a layer of complexity.

She told me the other day that she finds it hard to love him, because he's dead. At times, she has shown she is jealous of the attention that he gets (which I'm sure he would be getting if he was living too). She has pretend played the heck out of doctors and nurses and dead babies, parading her dolls around and constantly asking when we play families, 'is your baby dead or alive?' It scared me initially. Until I read in a book provided by Donate Life, the organ donation who we offered Charlie's liver through, that this is a very normal and very healthy response. She would say things to her dolls like, 'it's your fault!' and quietly, still in role, I would ask, 'whose fault is it, Clover?' and it would come out, 'Charlie's fault. He was the one that died.' And then there was the comment, 'Mum, you're not a good person because you didn't stop Charlie from dying.' This jabbed the festering wound that says, 'your role as a mother is to provide life, not be the one to watch helplessly as the tube is removed.' But, I have learnt to observe these moments, rather than shy away from them in grief and horror, so that I get an insight into how her little (big) brain is processing things.

Her fear of what death means to her, being here one minute and then disappearing the next, began to be projected onto us. Me, especially. It became a habit to ask, 'Mum, are you dead?' or 'Are you going to die soon?' We explained that everyone dies in life but that if your body is healthy you live until you're very old. She then began to worry every time somebody would call someone else 'old,' even jokingly, and we had to be so conscious of hyperboles and idioms such as 'I felt like dying' or 'death by chocolate.'

She can sense when I'm down and she becomes tied to my side, not wanting anyone else to provide her with comfort. These can quite often be the times where I need a little time to myself to process things and it can be hard to acknowledge everyone's needs. There was that time, on a particularly down day, that she said to me, 'Mum, you're up in the stars.' I paused, trying to get my head around what she was trying to say. Worried that she thought I'd died or something, I reassured her, 'No, babe, I'm right here with you.' She responded, 'yeah, I know. But your energy is up in the sky.' And there was another time where she asked why I don't laugh anymore and I felt intensely sad (and validated), again, that she notices. She notices my change, my absence. It's been six months since Charlie's death and I acutely notice how quickly those six precious months have flown past in Gracie's development. This age, between three and four, is so beautiful, so profound. She's like a little bud beginning to unfurl and yet, I mourn how much I've missed out on whilst being wrapped up in my own little cocoon of grief. Perhaps though, this is what it's like when you have your second baby. Perhaps everyone similarly mourns the time they spent being able to indulge in focusing on one child.

Gracie will ask over, and over, and over, about why Charlie died. We try to explain genetics as best as possible but to a three year old that is difficult. We've called it jigsaw pieces, or information booklets, all of which she must be picturing so literally. Each time, I calmly and patiently just explain it again, each time adding a new layer of complexity to it. She knows his whole birth story, she's ended up asking about how babies are made, and is not content to stick to the basics. She wants to know. When I told her that Charlie hadn't been made right, when he was growing from an egg to a baby, she logically concluded that if we had made him, then next time, could we please make the baby right? She also said, 'Mum, I have an idea. Next time, make four in your tummy at the same time. So if something happens to one of them, there will still be others that we can bring home.'

She has made me giggle even on the darkest of days. She asked me the other day about birthdays. I explained it was the day we are born. She said, 'well, when Charlie was born, why didn't we have a birthday cake?' I responded that it was a bit hard being in hospital but I would have really liked that and she said, 'we could have just put the birthday cake down the feeding tube.' We've spoken about memories, and when she's said that she's losing her memories of him, we get out his photo book and pore over his little face. She's returned this gesture once, when I explained that even I have memories that have faded, particularly around the birth and she has sweetly offered to go and get 'the book that helps with memories.'

We were in the shower once together and she was chatting away. We have a little ritual of saying how we love each other to the sun or the moon or all the oceans. This time, she just came out with, 'Mum, I love you all the way to Charlie's star and back.' It nearly floored me. She'll shout up to the sky how much she loves him and misses him and tells me when she's had dreams of him. 'We went into the hospital and he was alive.' She often talks about herself as his big sister and although she will clearly distinguish that it's different, because he's dead, I thinks she understands that her role in being big sister is the same, she just can't do the things that we'd spoken about during his pregnancy.

I have very vivid memories of the aftermath of Charlie's death. I vividly remember, sitting on the hill where I laboured with Charlie, wanting to go to him. Knowing, deep down, that I couldn't get to him. And several people said to me but Gracie needs you here. That didn't hold any weight at that time. I felt like shouting, 'how can you choose which of your children, you want to be there for!' It's impossible. I instinctively, probably up to the brim in postpartum hormones, felt like I had to be with him. I think it's taken me the six months to start realising, it isn't a choice.

Gracie has been perhaps one of the most healing aspects of Charlie's life and death. She brought so much joy to the pregnancy in expecting and guided my healing after his death; gently, profoundly, flooring me with her big observations and comments. It's been difficult. It's been difficult for Bradley and I to navigate, allowing each other time to grieve, away from being a parent and to balance our own grief, with this little soul's grief that we love so much.

I actually am not sure how I would have survived those early days in the hospital without her touch, her warmth. I'll forever remember the duality of finding out that Charlie's only good lung had become completely obstructed and then leaving the NICU to put on party hats with Gracie and her stuffed toy friends, sitting in the hospital gardens to celebrate her belated birthday. The joy and the searing pain, all mixed up together. I suppose that's what it's like having a living sibling. There's so much goodness and comfort and love but there's so much pain in seeing your pain mirrored in theirs and not being able to protect them from it. Or, feeling so absent in mothering them, perhaps when they need it the most and those guilty pangs that come with it.

I grieve lots of things that Charlie missed out on in life. The sunshine, beautiful places, eating birthday cake, swimming in the ocean, being able to breastfeed! But most of all, I think often and grieve often, of how he missed out on getting to know his big sister in ways that the NICU did not allow. To see her spirit, her strength, her kindness and love. To witness how she handled this massive event in her life, with grace, bravery, compassion and profundity. Although, maybe he does see. Maybe he does feel her. Maybe he will always hear her resounding voice echoing down the NICU halls followed by us 'shushing' her. I really hope so.