The Brick Wall of Grief: Writing After A Collision

This moment. How to describe it. A sudden rush of grief that hits me out of nowhere. I know the feeling now. It's like slamming into a brick wall, knowing that you are going to make contact, knowing it'll floor you, that it's kind of inevitable and necessary that you will end up a crumpled mess at the base and that in the next few hours, days, however long it takes to pass, you will need to muster the energy to somehow pick yourself back up and continue on.

Some days I forget Charlie. I never forget him, his loss, my grief, but some days I suddenly realise that that trauma belongs to me. That there was a time when I peered down at his little face and noticed his little lips, running my trembling hands along his tiny body. That was me. Because somewhere along the way, time softens it. I feel more detached from that story. Then the brick wall will make contact again and I see him and I imagine what it felt like to touch him. My throat constricts, my heart races, my fingertips feel like lead as they run over the keyboard. Even my toes feel tingly and I ache for him.

I read a news article today about someone that I've followed on Instagram since Charlie died. More specifically, it's about her baby, Milli Evrard, that died from a genetic abnormality with a presentation almost uncannily like Charlie's. Milli and Rochelle's story, brought me so much comfort during my grief narrative. It made me feel less alone. It made me hold hope for a diagnosis for Charlie. You can find the article yourself, using the link below. I read it twice. The first time, I felt a thread of annoyance creeping in. This is my life and it goes on unnoticed. It's un-newsworthy. It's everyday. The second time I read it, the annoyance had dissipated. It was replaced with a realisation that, 'holy shit, hang on, that was me.' The article is written and projected as a parent's worst nightmare because it is. What I lived, is newsworthy. The softened, curtailed, everyday narrative I tell myself to get by with everyday life evaporates. In my mind, Charlie died is replaced with Charlie died and the brick wall hits.

Read the article here: Newborn Baby Dies From Rare Genetic Condition

This week, I also had a phone call with the genetics counsellor. We received our official diagnosis of his genetic condition a few months ago. It came back 'uninformative.' 'It's like looking for a needle in a haystack,' they tell us. Some factors still suggest his condition is genetically caused such as, disorganised myofibrillar in his muscles, his tented upper lip and under-developed mandible, reduced muscle bulk, knee contractures and a very developed pressure sore on his bum at birth, showing he'd been in that position for a long time. They are continuing with research testing, looking at his muscle fibres under an electron microscope, conducting more genetic tests as technology expands. But according to Milli's news article, we are the one third of parents, in rare presentations, that walk away from their baby's death not knowing which gene was responsible. We have been left in limbo, knowing the way our baby presented but not having a name in order to have that 'dignity in diagnosis.'

I felt so sure we would get an answer and the phone call the other day reiterated the frightening prospect of trying for another baby with a very high possibility that there is a 25% chance of the next baby having the same condition. There are some options such as having ultrasounds examined by specialised fetal clinicians and expanding the reproductive carrier screening we had done before trying to conceive our first. Both of these options though, were prefaced with, 'this is unlikely to give us any extra knowledge, it's just to give you a feeling of assurance that you've done all you can.'

This phone call, that has been playing on my mind and reading and re-reading the article, prompted me to look back at the 'Charlie' album I've made in my camera roll after having to scroll so far back to find his photos. I wanted to really remember him and reassure myself, in an odd way, that that story did really happen to me.

I found this video:

I felt the familiar urge again to share the grief, to share how precious he is, how beautiful this moment was. Then fought with myself, told myself that people don't want to be confronted all the time, that they'll think I should have moved on. He's gone. Then told myself, no, he's my boy. He's my beautiful boy. He was a person. That existed. That still exists. I once held him. But some days I don't even allow myself to go there. Some days, I think I tell myself softly, Charlie died but I don't pause to think about how Charlie died.

I miss him so hard and the terror creeps in. The terror that I can miss him this hard but nothing can be done about it. I'll never again be able to trace the lines on his arms or kiss his cooling lips. I'll never be able to see his eyes search out mine or watch the rise and fall of his chest. Press his long fingers with the little almond nails to my lips or watch his tongue poke in an out, searching for milk.

Grief is like that. On a Monday morning I can look at his photo and I can say, 'Oh yeah. That's Charlie. Beautiful boy' and by that Monday night, I can look at his photo and fight the urge to scream and swear and crush my body into a ball.

Sometimes when I write, I naturally look for something hopeful to end with. Tonight I'm still crumpled at the bottom of the brick wall. I haven't mustered the energy to get back up. So to end this post tonight, I just want to say, shit's fucked and leave it at that.