asparagusmama (asparagusmama) wrote,

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Henrietta RIP July 2007-April 2017

I had been housebound for 14 months before Henrietta arrived. In that time I had two appeals to get my DLA back and an assessment from adult disability social services which gave me the direct payment to pay for six hours help in the home. The little six and seven year old babyklingon was being taken to school and brought home by a rota of mums that one mum organised for me. She was going to her after school clubs in taxis on her own with the company I opened an account with, guaranteeing me the same drivers with DRBs.

Then Henrietta arrived. At first I was a bit nervous and embarrassed. At first she was a tool. My Mum always called her a ‘contraption’ but then my chronic illness is ‘ailments’ and my disability ‘problems’ to my Mum. It’s the way she is. But BK was so upset that Mummy was in a wheelchair we gave her a name and a voice and a personality. Over the years she grew into it and we grew used to her and loved her as if she were Real.

Having her meant just under a year later I had the option, when the school was not only refusing to accept BK’s diagnosis of dyslexia and were lying to me about the support they were obviously not giving, the way they death with the severe bullying that led to my little eight year old to try to hang her self was ridiculous in extreme, Henrietta gave me the confidence to take her out of the school to home education as a temporary emergency measure until I got her into what I hoped was a better school, the other side of town. It was also the church school, as Hen meant we could worship at that non-judgemental church, which BK loved, unlike the rather racist, judgemental, unsupportive with learning difficulties, Madrassa and the local evangelical church on the estate that spread gossip, we had tried in the past since she was a toddler (I was raising BK both Muslin and Christian due to her mixed heritage until she made her choice). She made her choice at St Peter’s, which we could get to thanks to Henrietta.

First my tiny seven-year-old Klingon sat on my lap when tired. Then, as she grew fast, she stood on the battery case at the back. By then the Infant Ewok (her Build A Bear ‘sister’) sat on my lap and we made quite a sight like that around Oxford and South Oxfordshire for about three years. Then she was towed by roller-skates or scooter until she became ill herself.

Henrietta got us out and about, once I was home-schooling permanently, we went on our bus and then train adventures, building all sorts of research, writing, geography, history, science and social and sensory confidence and coping strategies into the adventures.

When the final straw with our the doctor’s led to the lies of the SS and the threats to take BK into care, we were able to change doctors as we could get there, thanks to Henrietta. And what an amazingly supportive GP we have now.

In the beginning, she was transport, and I got out at church or a cafe with my stick, or parked her at customer services and got a trolley to do a grocery shop, but since the genuine flu and then the seizures/mini strokes (and the neurologist still hasn’t made up her mind, they could just be part of severe ME following the flu!) two years ago, I can’t go far at all with walking frame ot crutches. And so I was in her almost full-time out of the house.

Henrietta was my legs, my independence, my confidence, and my (imaginary) friend and support. Her ‘voice’ in my head kept me from having meltdowns as over the last two years as it is me that suffers more from sensory overload and auditory processing that my daughter. She seemed to know the way home from the train station, bus stop, Tescos, and town. She reminded me to stop at roads.

Thanks to Henrietta I’ve been to Stonehenge, Avebury, Cambridge, Milton Keynes, Brighton, London, and High Wycombe (my family) many bus adventures in Somerset and Sussex and last summer, there was the great northern bus adventure that got us all the way to Leicester on buses on our free bus passes. I could go to Oxford anytime I liked. We went to many activities in the early days of home education organised by the Oxfordshire HE group. Obviously we could just get out and about. I have no car and my licence was taken away years before BK was born.

Once we took a wrong turn on the Ock path from the big Tescos to Abingdon town centre and ended up on this increasingly rutted mud track away and emerged in Drayton. Once we decided to take the Thames path home from Abingdon and the path got increasing wild and Henrietta skidded and we slipped down the embankment, but babyklingon is not called so in vain, and at 12 years old, she caught the handles and pulled us up and out and away from the river. But, hey, adventures are best right :)

I feel her loss so much. If I get another, it will not be the same, but I will be grateful and again independent, I hope, although in recent months and years, going out has been daunting and scary. Without my friend’s ‘voice’ in my head, I wouldn’t have done it. Not after the memory black outs. And certainly not after being attacked last summer. Only two weeks only some drunks threatened to throw up over me, as being sick on a person in a wheelchair is funny, apparently.

I have a loan chair at the mo and it is too big, and causes great pain. I tried with blankets and cushions to support my back and hips and be forward enough to reach the joy stick without painful stretching of my shoulder, but I was in such pain last night, and my hips locked, which has never happened before, I am only going out in dire need. I spoke to the maintenance people and they will chase Oxford Wheelchair Service at the Nuffield hospital to get me a smaller loan one at least. When I phoned them I got an unsympathetic brush off telling me lots of people were waiting and they couldn’t even tell me if it would be weeks or months until I’m reassessed. Then there is the change in criteria. And no, I don’t use her indoors. Simply coz my house is a tiny two up/two down with no room to get through from door to kitchen, and it’s two steps from where the chair is parked to my bed or the stair lift, and four from the stair lift to the bathroom. When I’m home I’m 90% bedbound, when I’m well I go out to get food or ride buses to get away from the house and the noisy, scary neighbours.

Henrietta, my friend and legs, rest in peace. Wait for me in the garden that is Heaven.

‘“ Real isn’t how you are made. It’s a thing that happens to you. When a child loves you for a long, long time not just to play with, but really loves you, then you become Real.”

“Does it hurt?”

“Sometimes. When you are Real, you don’t mind being hurt.”

“Does it happen all at once, like being wind up, or bit by bit?”

“It doesn’t happen all at once. You become. It takes a long time... Generally, when you are Real... you get loose in the joints and very shabby. But these things don’t matter at all, because when you are Real you can be ugly, except to people who don’t understand.”’

‘The Velveteen Rabbit’, edited.

Henrietta passed away peacefully on the evening of Wednesday the 5th of April 2017, surrounded by her family, remembering all the funny things she did with babyklingon and the Infant Ewok. She was then washed until she gleamed by me. She will be missed so much. She was Real.
Tags: henrietta, loss, powered wheelchair
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