THIS IS WHAT GRIEF IS LIKE

I don’t even know where to begin this but writing is part of my catharsis so here goes. I guess this is what grief looks like. A long string of uncertainty – of mixed up feelings – like someone took all of the emotions a person can contain, put them in a bag and shook them around vigorously and laid them out in front of me, all mixed up. Here you go - here is your mind for the foreseeable future.  Fear sitting beside hope, shock on top of love, sadness under gratitude.

This is what grief feels like.

What I’m starting to realise is that there is no rhythm to this; no expectation of what a day will bring when you are in the throes of grief.  

My mum died.

I don’t know when that sentence will ever look normal to me. Probably never.

Mum had been in hospital for a couple of weeks with what we thought was an simple infection. She had a sore throat and got some antibiotics from her GP hoping that would nip it in the bud because that's what you do when you're a bit sick. You see the doctor, they give you the medicine and then you're not sick anymore, right?  Then came the joint pains, fevers and a rash on her body. She was admitted to hospital and after a week or so, the doctors told us mum had developed a rheumatic condition called Adult Stills Disease. It’s rare (1 in 100, 000) and really hard on your body but as mums condition improved with steroids, she was eventually discharged on Ada’s first birthday, just in time to come from the hospital and celebrate with us.  

Looking back, her hospital stay was a precious time for her and I. We had so many intimate mother-daughter moments in her hospital room. I brought her salads at her request (there’s only so much hospital food one can take), showered her, blow dried her hair, played her favourite music on her iPad and read her favourite scriptures from the Gideons bible in her room. I’ll forever be grateful to have had the chance to love and look after my mum in those days in the way she did for me for 33 years. I joked with her that I thought I’d have at least another 20 years before I’d have to wash her, so unaware in my jesting that we were nearing the end. Now I’m wishing I could shower her weary body again. This is what grief is like.

Over the same weekend she was discharged mum was weak and tired but we figured it was from such a tiring hospital stay. On the Sunday, my brother flew in to surprise her as it was Mother’s Day. Mum was so happy to be home and surrounded by her family – she said so through tears as we sat together as a family in my living room.  We had a family BBQ at our house and it was so great to see her there enjoying the kids, sitting in the sunshine in the back garden and by all accounts, it looked like she was on the long road to recovery.

Then over the next couple of days, she started to struggle again. The weakness and fatigue was overpowering. Her temperature started to soar and the rash started to reappear. It looked like a relapse of the Stills disease was happening, so we brought her back in to hospital and she was admitted to ICU for closer monitoring.  I’ve never seen my mum so frail. Only weeks before she was dancing around my kitchen with the kids. Only weeks before she was helping me clean the house. Only weeks before she was walking into town with me to get groceries, bossing me about. How am I ever going to keep my house clean? Who’s going to help me with my never-sleeping kids? This is what grief is like.

What we didn’t know is that underneath the Stills Disease, mum had developed a syndrome that was attacking her auto-immune system (official cause of death: Macrophage Activation Syndrome). The white cells that were supposed to be healing her had mutated and multiplied and were acting as though her body was the enemy. By Wednesday evening, the doctors had enough evidence from tests to realise what was happening.  They had a plan for trying to get in front of the syndrome but they had to tell us that things were quite serious. This syndrome was aggressive and rapid in it’s attack and had begun to compromise my mum’s organs.  30-40% of people didn’t recover they said. We’ll take the 60-70% we said.  They were going to try to sedate her and intubate her through the night to let her body rest and take in some more intense medication to see if it would stabilise things more.

As my dad relayed this information to me that night, I could hardly take it in. Surely mum wasn’t sick enough for it to escalate like this? Intubation? I had just seen her this afternoon, and she was sitting up having a cup of tea. She was weak and tired – but we chatted and kissed and I told her I would see her tomorrow. Now ventilators? Sedation? I googled too much. I knew it was bad.

I want to smell her oil of olay skin again; touch up her roots like she always hounded me to do, link arms with her as we walked down the street.

This is what grief feels like.

I went to bed on Wednesday night feeling heavy – calling on all our friends to pray for mum.  Even though we weren’t sure what would happen, I don’t think any of us thought we were facing losing her.

A few hours after I fell asleep, Ada stirred in her room. I looked at my phone to check the time and saw I had several missed calls from my dad. My heart sank to my feet. I’ll never forget that feeling. I called my dad back and he told me I should come up to the hospital – that things had gotten quite serious. I’ll never forget throwing on clothes, whispering to Dave “My mum is going to die…” I got in the car and drove the short distance up to the hospital. I have no idea how I got there, where I parked or how I walked in but I just remember saying “No no no no no” over and over again out loud. When I got to Dad, he told me that the doctors had told him that mum had deteriorated and that the next 15 minutes were critical. She would either be with us or God. I couldn’t believe what he was telling me.

Mum’s heart rate had sped up during the late evening and when they tried to sedate her, it stopped. They were able to resuscitate her and get it beating again but she was fragile. When I arrived they were attempting to give her dialysis to see if they could give her some clean blood, but it was too much and very quickly her heart stopped again and they couldn’t get her back.

Those minutes sat with my dad waiting to hear what was happening were the longest minutes of my life. We held each other and prayed quietly, uttering half sentences and words desperately out into the room. “Please.” “Oh mum. Please.” Every footstep in the hall took my breath away. When the doctor eventually came in to tell us the news that mum had passed away all I could repeat was “WHAT? What? What?” Over and over and over again as my dad and I fell into each other in utter disbelief. This is what grief is like.

Two weeks on and I still feel that acute sense of “What?”.

My mum has died.

What?

The two weeks since then have been a blur of adrenaline and emotion. Friends arriving from all over the place to be with us and remember mum. Such a tribe of people we have that would come to be with us without hesitation. We had hundreds of people through our house with food and tears and memories to share; greeting people from every inch of history of our family. Long lost neighbours, friends and relatives. Everyone has been so incredible, and we have been so comforted and sheltered in the love and care of the people that love us and loved her. We had a service of thanksgiving for mum at the Church my parents have been a part of. My brother Tim and I spoke about her life; about her love of friends, family and faith. I don’t know how we steadied ourselves to do that, but we did. It felt right. This is what grief is like.

We are all weary. Weary from shock, from the commotion of the last few weeks. Weary from sadness and longing.  It feels unfair for our family to be fractured in this way, only 9 months after our parents made the big decision to move back from Canada to be closer to us. They were supposed to retire and be here now – together. With us. Together. A person missing at the table. A laugh missing at the same old jokes. I’m outnumbered by the men in my family circle entirely now. This is what grief is like.

There are so many things about this stage of grief that have no handbook for.  This is a no-mans land of appropriate grief etiquette. Do we keep her facebook account open? What happens to all those games of Words With Friends she was in the middle of?! When do we stop calling it ‘Mum and Dad’s house’? When can I post a picture or share something online that isn’t about her? How long before people will get bored or awkward when I talk about her? Should I take her mobile number off my phone? What if I need to cry in the middle of Sainsbury’s? I don’t know the rules.  This is what grief is like.

The day she died I got Levi off to school and the baby down for a nap and I sat quietly numb in my living room, watching people outside drive to work as they always do, kids laughing on their way to school as they always do. I scrolled instagram in a daze and saw beautiful pictures of flowers and flatlays and I wanted to shout “WHAT ARE YOU DOING?! DO YOU NOT KNOW WHAT HAS JUST HAPPENED? DON’T YOU KNOW MY MUM JUST DIED?!”  This is what grief is like.

I’m finding it so hard to parent while grieving my mum. Having a 5 year old and a 1 year old gives me a focus in the day, sure. Maybe in a few months I’ll be glad I had the distraction of family life to help me push through but right now I am exhausted. The relentlessness of parenting gives very little space to process and there’s nothing I can do about that but muddle through.

We have explained what has happened to Levi in the best way we know how. We have been honest with him, showed our raw emotions and given him permission to feel sad, happy, have questions or not at all. I can’t believe my children will grow up with only recollected stories of her. I’m desperately trying to remember things from when I was 5 in the hopes that he will have memories of her too. He has been sad at times, asking big questions about burials and God and our spirits one minute and then recounting how a girl in his class farted the next. This is what grief is like (for a child).

We went to her grave the other day, the first time since the funeral. Levi came too, he mostly inappropriately ran around.  There’s a simple plaque with her name on it in place of a headstone for now. My mum’s body is in a coffin in the ground. It is sobering and I keep thinking about it from time to time – feeling agonised that her body, the body that carried me, nurtured me, served me and comforted me is in a coffin, all alone in a big hole in the ground. I know ‘she’ isn’t there. I knew she wasn’t there the moment I stepped into the ICU room where she was laid out just minutes after she died. There was an emptiness in the room that is my most convincing evidence that her spirit is with God. But still, I think about my mum’s body being in the ground. This is what grief is like.

It’s Easter Saturday and I’m struck by how long my Easter Saturday feels – that bewildering time between pain and loss and eventual resurrection. It feels poignant today and in the forefront of my mind that I’ll be settling into my version of Easter Saturday for quite some time. Resurrection feels impossibly far away. This is what grief is like.

It’s Easter Sunday. We went to church. We sang with lumps in our throats and tear stained faces about resurrection, knowing what we know about the truth of that but still feeling that sting of death so intimately.  This is what grief is like.

I listened to grief expert, David Kessler on a podcast the other day and he told this story about a grief tradition in a village somewhere and it blew me away. He said that when someone in the village dies, every household takes it upon themselves to move or change something in their garden or the outside of their house that evening. They do this so that when the grieving family emerge from their house the next day, they can visibly see their community has responded to their grief. Things look different. This act of solidarity is to empathise with them that yes, everything is different now. Everything has changed.  Wow. It felt powerful to hear this. Everything has changed. This is what grief is like.

Renowned grief and loss writer Elisabeth Kubler-Ross says that "telling the story is part of the healing of a traumatic event, no different from the trauma of large-scale disaster. In your world it was a large-scale disaster, most likely the biggest you have ever experienced. Telling the story helps to dissipate the pain. Telling your story often and in detail is primal to the grieving process. You must get it out. Grief must be witnessed to be healed. Grief shared is grief abated.”  So I guess this is what I’m doing here. Holding my hands up to ask for you to witness my grief so that I might be healed. Hoping that sharing the story is part of the process, however raw and revealing it is.

This is what grief is like.