Gearing up for the inevitable/seemingly obligatory ‘x weeks ago…’ countdown. The screaming ‘If only…’ The relentless, grinding background loop of ‘Wha?? Eh???? LB??? How could this happen?..’
I feel an intense sadness that he had a visit to the Oxford Bus Company planned that day. A trip that Sue (Charlie’s Angel, pallbearer, mermaid facilitator, teaching assistant extraordinaire) had magicked months earlier. In the same way she managed to get lorry drivers/AA mechanics and the like to give LB a tour of their trucks/vans/equipment on the roadside. With accompanying photos. One of life’s understated, gold plated doers.
The Oxford Bus Company. An outing that never happened because we lazed around. Careless with the time we had. Time that was eaten up with nonsense (and ultimately pointless) meetings/interactions about (non) care, (non) support, non anything. With a dose of full time work and broader family life. We lost sight of what was important to LB. And then we lost the opportunity to make this happen.
I feel anger about the way in which families/carers are typically pitched into this space of opposition to any sniff of support and services because these services are so rationed/difficult to access/inappropriate/pointless/inaccessible or any one of a hundred other reasons. This becomes magnified once dudes turn 18 and family love, understanding, knowledge and interactive expertise is sidelined. This space is all consuming, exhausting and unnecessary.
So much energy, effort, emotion goes into ultimately nothing. A wearing dancing, prancing, phoney two step with services that hold the power, the key, the password, potential future and ever present sword of budget cuts. Chuck the nonsense of ‘choice’ into this mix and things become impossible to make any sense of. I don’t know of a single parent who is happy with (and no longer a major actor in, albeit not always a welcomed one from the perspective of ‘service’ providers) the life of their adult learning disabled dude. And I know quite a few.
How can this be? Such an enormous gap between policy and practice. The policy speak talking the talk of choice, autonomy, independence, leading in practice to the sidelining or dismissal of parental expertise and love. And parents/carers walking the walk. Beavering away in the background desperately trying to facilitate, fight for, negotiate and sustain a half decent existence for their dudes.
This is the 21st century? We have enough research, reports and recommendations around this area to fashion a papier mache replica of the Houses of Parliament. How can things still be so bad?
Nine weeks ago today, around this time, our beautiful, exceptional dude got into the bath. Probably up bright and breezy because of his long awaited trip. And there it goes again.
How could this happen?
What if is inevitable but incredibly painful. As a mum of a young adult who died of cancer I felt totally shut out by the medics I never met. They did their absolute best medically I know that for sure. I can’t alleviate my what if loop because I never got to speak to any of them. Effectively no one knows what to do with an anxious mother so best to ignore. At least that enabled my denial to flourish. I can’t deny the facts now. Fucking horrible. Compassionate friends is a good organisation for parents syblings grandparents in grief. I do hold on to having respected johns wish that I should not keep helpfully offering my organs but of course I would have laid down my life
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Of course. With out a doubt. And I agree about Compassionate Friends. xxx