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.
mydaftlife 
Oh Sara, I just don’t have the right words tonight, for which I’m sorry and feel inadequate, but please know I am thinking of you and send love and hugs xx
Thank you Caroline.. xxx
Thank you Sara, LB was important & worth so many words…all our children are especially when failed by the State. Its tough moving on but move on we must! I want to stay back being close to my son. I hated saying last year, two years ago and now over 8 years. Christmas has lost its sparkle and we have had to find a “new normal”. New Year brings hope of resolution (or official recognition of our pain!) but it also brings fears of all those anniversarys again!
What an unresolved complaint does is hold you back to protect the fragile memory, ….give you responsibility for warning others and stop you moving on (when will ‘they’ realise how futile it is!) Personally, I live with this daily and so will the State until it supports vulnerable people properly!
I totally understand the anguish and subsequent rage, grief will demand its hearing. And unanswered grief is beyond belief! I find a sort of peace in knowing my son Rich, loved and was loved for his entire life. But some days it wont wok and the rage sets in!
Can I wish you & yours a Peaceful New Year, full of warm memories and thank you for your strength in bringing LB’s memory to life! xx
Thanks Dee, what you say makes perfect sense to me. Here’s to the possibility of some resolution for at least some families this year. xxx
Rage-I hear you sisters. It is a word bereaved mothers don’t use as often as we would like in my view. I try and do dignity and compassion and being the best parent I can be to my other beloved children. Some days I just want to scream ‘why?!’ I am a good mother and a decent person and my 3 children are lovely and do not deserve to experience tragedy in their 20’s.. Cancer hit our family randomly but-really-why us. I am with you Sara-lets meet up soon..
We must.. Send me a few dates and I’ll check out what I’m up to. xx
I come in to town every day-work near waterloo, thur, fri best this week.
Nicki
Subject: Cabinet of curiosities:
I'[] m going-you might fancy it[] -please share Nicki
Your words are so effective. “Shining a light” “generate a level of transparency” etc
Sara, those comments translate into direct action of “making a difference”. What a wonderful contribution to make, especially when done through a personal fog of permeating hurt and rage and incomprehension at others lack of basic humanity.
Feel encouraged by all the people you know will stay in the background, but will be available to acknowledge, applaud and support you. we will continue to approach, say, write, email etc. Whatever it takes . . . And you are allowed to feel tired, grumpy and sad!
Mxx
Thanks M. Appreciated support.. xxx
I would just like to say thank you for all that you write on here. One phrase you once wrote on here helped me make a decision. Accepting the unacceptable. Too often we are asked to do this and one particular day that phrase went through my head like a mantra. LB, his life, his story and his family are still very important to virtual strangers and I hope that one day the good memories of him outshine the darker ones for you all.
Wordsworth knows how we feel
William Wordsworth’s letter on the death of his son. After visiting France and becoming inspired by the social changes resulting from the French Revolution, William Wordsworth returned to England creating poetry for the common man. He would emerge as a leading poet of his time. On Dec. 2 1812, Wordsworth, grieving the recent death of his beloved 6-year-old son, wrote this sad letter to his friend, Robert Southey. Symptoms of the measles appeared upon my Son Thomas last Thursday; he was most favourable held till Tuesday, between ten and eleven at that hour was particularly lightsome and comfortable; without any assignable cause a sudden change took place, an inflammation had commenced on the lungs which it was impossible to check and the sweet innocent yielded up his soul to God before six in the evening … My wife bears the loss of her child with striking fortitude. For myself dear Southey I dare not say in what state of mind I am; I loved the boy with the utmost love of which my soul is capable, and he is taken from me—yet in the agony of my spirit in surrendering such a treasure I feel a thousand times richer than if I had never possessed it. God comfort and save you and all our friends and us all from a repetition of such trials—Oh Southey feel for me! – See more at: http://50plusseniornewspa.com/news/2013/feb/06/fragments-history-glimpses-history-letters-wordswo/#sthash.4HsHCTor.dpuf
Love Nicki
This is amazing. Thanks Nicki, xx
Exactly the same here. Thank you sara. Your writings are very helpful indeed. I am always thinking of you xx
Thanks, and glad this blog is of some use (in addition to allowing me to ranty rage..) xxx