Oh my gosh today has been crazy.

I couldn’t look at Matty’s photos, I couldn’t talk about the plans we have for the anniversary of his death.

I cried. A LOT. Not hard but a lot. I don’t know if I just over extended yesterday.

I ended the day frustrated from dealing with other people’s issues. It had already been a long day reliving Matthew’s life. Even reliving the few weeks before he passed away.

Anna – our Very Special Kids Support Worker – told me that hugging a toy helps with production of serotonin, which helps make us feel better. She also said this stuff obviously wants to come up, and it’s better to let it come up naturally than have to deal with it later.

She also reminded me to write. Which surprised me that I forgotten to write, these things always seem obvious after someone says it.

I feel really really tired. Drained.

I really do miss Matty. It’s like every part of my body – outside of my brain – cannot understand how the life that was my little boy, can just be gone.

The pain is definitely an ache that if I think about it, is ALWAYS there.

Just last night my temperature fluctuated, which is something I hadn’t noticed since the few weeks following I guess.

It’s like a weight on my chest. No oppressive, not huge, not actual pain – for the most part – but always there. Then when a wave hits me, it crashes over me out to the tips of my fingers and toes, I can feel my stomach rising to my mouth. Nausea often follows the tears.

Often then there is the burning sensitive skin around my eyes. But at least that is predictable and makes sense.

Today we cleared out a lot of stuff that had piled up since we came home from hospital. It was super painful process, in my current state.

Each item was connected to a memory which brought a fresh wave of pain.

Things from Mackenzies’s dedication which had planned and organised knowing that Matthew had only months to live and we didn’t want him to miss it. An event that he was so bright, happy, interactive and alert….and on so many drugs.

There was Matty’s cpap mask, tube and harness. I took it to his room and put it on his bed which is piled high with his things.

On the edge as I walked away the green top he had been wearing when he died caught my eye.

As tears stream I think, Why my baby? Why does he have to be gone? How does this happen? How does a bright beautiful boy, come with all of these health issues , ultimately killing him, before he can even get through his first year of school?

I cannot comprehend (at this moment) living with a pain that won’t ever go away. That has it’s own currents like an ocean.

I am learning though that just ‘getting through’ this wave isn’t always helpful.

If I focus on getting out of it, sometimes I am not really releasing what is trying to come up. What is trying to flow – up and out.

Space to just feel.

Painful as anything, but I’m leaning if not now, it’s just being put off for another date, where it may be even more difficult and detrimental.

It’s hard for my thinking mind to not just take over and say,

‘This serves no purpose. You know that it would be no good for anyone in the family if Matthew was still here, least of all him.’

It doesn’t matter what ‘logical’ and ‘reasonable’ story my brain is telling me.

These feelings need to be felt – yuck that hurts – so that I can let them go.

It was very unsettling to have such a difficult day after all this time. It was probably the worst day I have had to date.

I couldn’t even describe it to me friend, the explaining was more reliving, like pouring salt in the wound.

Horrible.

Tonight I am going to cross my fingers that Mackenzie sleeps so I can SLEEP, the longer the better I think. This grieving stuff is crap and exhausting.

***Taken from my journal, 7/6/19.****