A day at a time – Coping with grief

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My name is Abigail Burton. This is my take on coping with grief.
In March (2019) my husband and I lost our middle son, Matthew Noah Michael Burton. He was just 5 years and 11 days old.

Matthew was born with a complex medical condition. Which included things like chronic lung disease, hypotonia, and club feet, just to mention a few.
He had incredibly high needs, and spent 50% of his life in hospital.
Doctors where only able to diagnose Matthew 9 months before he passed away.
The condition that Matthew was diagnosed with – HDAC2 – is so rare that only two other cases in the world have been diagnosed.
Matthew has an older brother Shane who is 7 and a younger sister Mackenzie who is 3.

In the moments following Matthew’s passing, I climbed into his hospital bed. In the room that had been his home for the last 4 weeks or so.
I just held him and cried, I cried so much I could feel my body heading towards hyperventilating.

The doctor stood over the bed moments later, she waited quietly, then asked if she could look at him.

I started to take deep breaths trying to calm myself, as I nodded. It wasn’t often that I refused such requests. So I guess it was force of habit to go through the motions, just as I always had.

In the hours that followed, things felt strange. I lent on habits many times, just agreeing to things the doctors and nurses recommended.
I didn’t feel shocked, but like a hole had started to form inside of me. It was surreal – my body and brain couldn’t understand how my very own 5 year old baby could just be gone.
It wasn’t like I didn’t know that it was true, just that the rest of me couldn’t believe it.

Not long afterwards it was time for hand over to the night nurse. The strangest thing. We had put him in his pyjamas earlier and wiped him down, removing his lines and infusions. There was nothing more the nurses could do and they knew it.

That night we had decided to stay with Matthew, my youngest – Mackenzie- was with me. Mackenzie seemed like she had no understanding of what was happening. She was just excited to have a sleepover! It took a lot to get her settled, and she woke screaming a couple of times.

She had said when I tucked her into bed ‘Matthew is sleeping.’
In the evening I hadn’t really caught it and didn’t know what to say, so I hadn’t addressed it. When Mackenzie got up the next morning, it was one of the first things she said, ‘Mummy, Matthew is sleeping.’
I struggle to remember exactly what I had said. Something like, ‘Matthew isn’t sleeping, he’s not here anymore, he’s in heaven now, he isn’t sick anymore.’

Talking to a three year old is a tricky thing, so of course she half listened and bounced off. I thought, ‘Did she understand? What is she thinking?’
I had been warned by Matthew’s palliative care team and other professionals that with kids, it is layers. These conversations would need to be had many times, over many years.

I couldn’t do anything else so I left it and moved on to the next thing.
Soon after the day shift nurses arrived, including the patient care coordinator, ‘Abi, it’s time for us to take him.’
I nodded, beginning to take the toys and trinkets of the end of his bed, birthday gifts, balloons, books.

The nurses said it was best to get most things off now, so they didn’t get lost. As the nurses opened the doors, and began moving the bed, Mackenzie started to get agitated. As they rolled it out the doors she began to scream, grabbing the rails and hanging on.
I had no idea what to do, all I could do was grab her. Prise her fingers off the bars, she cried and screamed all the more. The nurses stopped for a moment looking at me, then quickly kept moving.

No one really knows what to do in these situations, even the professionals.
It definitely marked a first of many very difficult moments.

Coping with grief I have discovered has to be done one day at a time, one moment at a time. I never know how things are going to effect me. Or when my kids or husband are going to be triggered.

Sometimes watching my family get triggered is more painful, than even my most painful moments.

In the weeks that followed, there was such a sense of relief on my time and mental load. I was thinking “it isn’t as bad as I thought it would be.”
There is definitely some truth to it. Maybe even the majority of the time, but it’s not always fully true.

It got more difficult for me after a few months. Hubby had gone back to work, and I was trying to get the normal stuff back under control.
That is when things became less stable, less ‘okay.’

Sometimes I got tired or a disagreement at work or another mundane emotional issue came up. These would make me crash under a huge wave of pain in the days that followed.

On one of those days, I couldn’t even look at photos of Matthew in his last few weeks, all I could see was the pain that he was in and feel the pain I had. It sits on your chest like a weight, not crushing – at least not for me- but it doesn’t go away.

I am beginning to learn over these months, that I can expect that feeling never to go away. So each step and each part of the journey is learning how to live with that. Learning how to cope with grief.

In the first months people would send me poems or memes that said things like that and my response was, ‘I don’t know but that’s not me, this isn’t so bad.’

I took advantage of that lull before the storm hit, or even being in the eye of that storm. I sat down with hubby and we talked, ‘Now what?’
We worked through things that were important to us, what things I still wanted to do even during this period of our lives. Even though we were once again lost, not knowing what would happen next.

I set goals and tasks just as I had learnt to do over the years, just so I knew that when Luke went back to work I would still know what I could/should do that day.

I was so glad I did when those really painful days hit.

One of the things from my life with Matthew that I identified that I didn’t want to loose, was my community of other parents of children with disabilities and complex medical conditions.

Since starting to learn to take care of myself, by taking one life saving step, taking care of my basic health and nutrition. I had began to realise a sense of community was key in my mental health and reaching out to others to see what I could do to help, it had massively changed my mindset and gave me such a sense of purpose and satisfaction.

So within 3 or 4 weeks I think, I had already been back visiting the hospital, I hadn’t been back to Matty’s room or even stood near his doorway, but back visiting the familiar faces. Supporting the families that I walked along the journey with.

Our support teams would ask me, ‘Why are you here? What do you get out of it?’ It made me nervous like I was doing “it” wrong, and I couldn’t really answer the question anyway. I had no idea what I was doing, just taking it one step at time.

As I kept visiting, I attended some of the special needs community events. I learnt that sense of purpose and satisfaction that I got from supporting people who were just like me, hadn’t gone away just because Matthew was gone now. If anything it is stronger.

I could tell stories and share experiences with those families, that I couldn’t tell anywhere else. Experiences that would have typical parents running for the hills or heaving their guts up. I found that very therapeutic.

I voiced to one of my support teams that sometimes I worried about sharing too much, or telling a story that wasn’t helpful. She reassured me that everything about me and who I was, meant that I would know the right time and place.

It’s not without a toll though, only physical though. Emotionally I feel buoyed by the visits but physically I feel very tired. I am very tired most of the time anyway, so I take this as part of the journey.

My story is by no means complete, in many ways just beginning, but this is the journey so far.

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