“It isn’t as bad as I thought it would be”?

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The Palliative Care nurse asked, as she had every time we spoke, “How are you doing?”

I thought a minute on it, wondering if how I responded would be believed.
“It isn’t as bad as I thought it would be.”

She looked at me, gently reaching out “It’s only early days.”

I knew this was true, it had been just over two weeks I think. But that’s how I felt.

When I held Matthew’s body after he past, for a few moments, I cried so hard I was about to start hyperventilating. I didn’t want that.

I wanted to remember everything about him before I had to let go.

So I held him, stroked his hair, and fingers, held his hand. I held him until he was no longer the familiar warmth I knew. The nurse commented to him “I think Mummy is keeping you warm Matthew.”

It’s true, I was so hot, in a room we had been in for weeks, that every other day had been freezing. I was sweaty. Someone mentioned that grief can make your blood pressure go up, which accounts for being so hot.

They asked if I wanted to bathe him, I said no, but after I asked the nurses to remove all his lines, we changed him into his blue monster pyjamas, and tucked him in for the night. We decided to keep him there on the ward. Mackenzie and I slept in his room, as I had done many times before.

Mackenzie woke in the morning, saying “Matthew’s sleeping.” I didn’t know what to say, how I was going to explain that to her. I think I said “But he’s not going to wake up, he’s in heaven now.” Something that we would have to revisit often in the coming weeks.

By 9am the next morning, there were decisions to be made, and they came thick and fast, did we want to be there when the funeral director took him? Did we want to have him moved to the bereavement suite so we could spend some more time with him? Did we want to take him home? Did we want to have the funeral director pick him up and spend some more time just sitting in his room on the ward.

When the team were finished running through the options, my head hurt, my back hurt (from being curled up with Matthew all the day before.) They said “but you don’t have to make any decisions now.”

Sitting in his empty room was strange, very strange. The nurses had no reason to come in and out. Though many of them did, just to say hi. It meant a lot.

I had imagined not being able to think, not being able to care for myself, let alone my other two children, or making sure that my husband was okay.

I wondered does my life as I know it end too? I was scared of how much it would hurt.

Now it is here. My little boy has been gone just over a month. I miss him all the time.

People ask if I want him back. While it hurts to think about or say, I can’t bring myself to wish that for him. Not even for a second.

We got lots of meals, did they help? Yes, especially in the beginning with so many unimaginable decisions to make, we were so fatigued, I literally walked around to saying to people at one point ‘I don’t know, don’t ask me, I’m not making any decisions.”

We got lots of cards and flowers, did they help? Yes, they made me smile. I think it this day and age of technology, taking the time to organise and send something physical, is a much stronger message than “thoughts and prayers.” What is they say “Faith without action is dead.”

I cry almost every day. But it’s not like that first cry. I let myself do it, it passes on it’s own. My kids often rush to my side, “Mummy is sad!”

When we came home we were faced with what seemed like hundreds of clean syringes on the bench, my sister had washed them for me. Before we could make a cup of tea we needed to put them away.

During that process we realised that Luke was ready and keen to pack everything of Matthew’s up. Put it away, just get it done. But the thought of it just made me cry.

Only this week, have I gone into his room to start tidying up. Not to pack things away. But get rid of rubbish or toys and items that came home from hospital, but were never Matthew’s.

His sheets that were on his bed, are still sitting on the chair. His doona – with a cover borrowed from his brother in the corner of the room. He had that doona on his bed when he passed away. What am I going to do with those things? I don’t know.

I guess part of me, deep down feels like washing them, will be like washing away his scent, his mark on his room.

We have decided his room will become our study one day, we will keep his chest of draws that Luke and I painted and got custom draw knobs for, in his room.

I had nights were I couldn’t get to sleep, then wanted to sleep all day. I reached out to our Very Special Kids support worker, and she gave me steps to run myself through, calming cup of tea, no screens after 9pm, reading, praying and writing in my journal.

After the nights I couldn’t sleep, I was still hot and sweaty (not normal for me) I dreamt that he was still alive and we were planning his funeral and telling everyone the details. They looked at us with pity, “But he’s right here.”

When I woke in the morning I had to spend time convincing myself of what had really happened. That isn’t pleasant.

Then I dreamed of hospitals and doctors and teams, even though we all knew Matthew wasn’t here anymore.

I’ve had times when I’ve been angry, why did my child have to have condition that meant he was better off being taken away from me? That goes nowhere, I have to content myself with knowing, “Not all questions have an answer.”

So I take each day, each moment as it comes, some things are too hard (like packing up his room.) I cry whenever. The hardest moments are watching Shane or Luke when they are struggling, Next to that is when someone asks,

“How is Matty doing?”

I take a deep breath, and try not to cry, “Matty passed away on the 4th of March.”

But I’m okay. It isn’t as bad as I thought it would be.

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