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After losing mum we are all weary from sadness and longing ... there are so many things about grief we have no handbook for. I don’t know the rules

Blogger and human rights worker Mel Wiggins explains what grief really feels like after the sudden death of her beloved mum Pat on March 30 this year

My mum died. I don't know when that sentence will ever look normal to me. Probably never. My mum Pat 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 mum's condition improved with steroids, she was eventually discharged on my daughter 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 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 Tim flew in from Cardiff where he is a communications and marketing manager, 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.

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 so we brought her back into 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, Ada and Levi (6). 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. The doctors 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 its attack and had begun to compromise my mum's organs. Some 30-40% of people didn't recover they said. We'll take the 60-70% we said.

I could hardly take it in. Surely mum wasn't sick enough for it to escalate like this? 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 and walk down the street.

This is what grief is 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, my daughter stirred in her room. I looked at my phone to check the time and saw I had several missed calls from my dad, Gordon. 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 - things had gotten quite serious. I'll never forget throwing my clothes on and whispering through tears to my husband "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 with God. I couldn't believe what he was telling me.

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.

A couple of weeks on and I still feel that acute sense of "What?".

My mum has died.

What?

Since then things have been a blur of adrenaline and emotion. Friends arriving from all over the place to be with us and remember mum. We had hundreds of people through our house with food and tears and memories to share; greeting people from every inch of our family history. 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 nine months after our parents made the big decision to move back from Canada to be closer to us.

My brother and I had grown up in Portadown but emigrated to Canada in the mid-1990s with our parents who worked in Ontario in social services for the Salvation Army and later in ministry as Pastors in the Christian Missionary Alliance Church. They were supposed to retire back in Northern Ireland and be here now - 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 we have no handbook for. 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 my son 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 can't believe my children will grow up with only recollected stories of her. Levi 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. 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.

Renowned grief and loss writer Elisabeth Kubler-Ross says that: "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. Holding my hands up to ask for someone 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.

  • Mel Wiggins and husband Dave live in Portadown with their two children. She is the project co-ordinator of Freedom Acts working to prevent human trafficking and exploitation and will receive an MBE at Buckingham Palace next week for her work.

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