LB died six months ago today [yesterday..] I’m not sure I could tell you if it was six months, six weeks or six minutes very accurately. I hold onto fragments offered by others or time bouncing in and out of consciousness depending on what I’m doing. I’ve kind of thought in terms of Thursdays really. Becoming aware around 9ish to 11am wherever I am most Thursdays of the significance of this ‘time’. Often with a backdrop of a siren or two courtesy of living so close to the JR hospital.

But today is the six month mark. And, oddly, it’s 12 months to the day since LB had his first seizure for more than 18 months. The seizure was caused (almost definitely) by new medication for increased anxiety.

The story (is it a story?) I tell on this blog is largely about mothering. This isn’t to detract from all the other stories that could be told. I’m just telling it as his mum. That day, 12 months ago, I was terrified of SUDEP. This fear led to Rich, Tom and I sleeping in LB’s room. A kind of family solidarity event. It was one of those nights that lasted forever (which I’d conjure back in an instant if I could) and ended, in the early hours, with LB and I in the room. He was oblivious and paid no attention to this invasion of his sleeping space. Probably still basking in the attention of the paramedics.

The following weeks followed a pattern of increased anxiety, unpredictable behaviour, despair, tension and no support until we admitted him to STATT on March 19th.

The rest of the story will be told in time. It’s a story on hold for now. We’ve learned a new version of it in the last few months. A version that makes me weep, howl and almost want to disappear. A story that no mother should ever have to confront. Or endure. But a story under wraps for now.

I’ll keep recording my thoughts and reflections about the broader process for the time being. I’ll continue to analyse any inappropriate documentation/letters and minutes I come across (or get sent) [Appropriate ones will be acknowledged – and more than welcomed – too]. And basically continue to be a right old pain in the arse.

These actions don’t much help much. They highlight how crap and limited system and processes are. And shine some light on the culture that exists around learning disability provision. They generate a level of transparency that wouldn’t happen otherwise. Who knows, maybe they shake/provoke different engagement for some of those people involved? Possibly not.

They are displacement actions for me. The extent of the pain, anguish and rage I feel about LB’s death is beyond words or imagination. A pain that haunts every part of my being. But a mothering instinct kicks in with bells on when your child dies in such circumstances. When this child was always at odds with expected ways of being and completely unarmed to protect himself, particularly when he notionally reached ‘adulthood’. An unassailable rage.

I have to say (and I know Rich agrees) that the thing that has kept me from some sort of breakdown (so far) has been the support and actions of people we know – family, friends, colleagues and others (far ranging others). I’ve said this before, probably over and over again but the countless ways people have responded to what happened has been remarkable. And faultless. And again, a learning point for me (being slightly ironic here because I know I will feel like punting the ‘learning points’ that emerge from this process into the river like Baxter) when someone dies unexpectedly is don’t shy away or avoid, instead approach, say, write, email, text, tweet, leave a comment or whatever. Simply acknowledge in some way. However small.

Here’s to the countless people who clearly already knew this.