Writing Gallery

After the sudden death of a mother. A death that wasn’t really a surprise, but was unexpected simply because the mother was in good spirits, and her health as good as it could be expected, was ‘fine’, and for once in a long time without the excruciating pains of arthritis which has haunted her body for many years, the heart condition and digestion issues, she was enjoying a visit from her son, and her two young grandchildren, and being able for a long time to take a short walk outside in her back garden, watching her young grandchildren play in the early spring sunshine, just 24hrs later she passed away in hospital, alone.... After a few sad days of grieving the elderly father extremely reluctantly turned to his son and asked for help. (His son has spent the past 30++yrs working within Adult Social Care, understanding the ‘system-from-within!!’. Sacrificing his own career plans/dreams of working alongside his father in his engineering business). This help was to support, assistant, care for their daughter/sister ‘Their Loved One!!’ who ‘lives’ with a learning disability, epilepsy and anxiety issues, which lead to mobility issues, which over the years has increasingly worsen. Together with the long-term use of an anticonvulsant medication, caused the condition known as parkinsonism’s and causes movement problems similar to those seen in Parkinson’s disease. So, for any distance outside this lady now needs to use a wheelchair. This elderly man was so very reluctant to ask for help around the care for his beloved daughter, as 45 years ago he recalled the time he, and his beloved late wife, sitting together in a cold clinical medical room/office, and being told of the chilly diagnosis that their only beautiful daughter was “Mentally Retarded and this is for Life!!” – she will achieve nothing in her life, and will not be able to talk will not walk. “But please don’t worry her life would probably be short, more than lightly quietly die in her sleep, this will be due to her brain cells are damaged unlike you can imagine” a hospital doctor explained. Adding to this the doctor continued “your daughters outlook is extremely bleak to say the least” as he sat there in a white hospital coat, behind a large wooden desk. After a short period of time this doctor added, “now we can help you both, we are able to remove ‘the’ baby today and no need to wait, ‘it’ (this is how the doctor refers to their daughter, laying there in her pram), will be catered for with in what we call, a special hospital. You can be free to try for another healthy baby. I see from your notes, you have two healthy boys already”. This amazing unbelievable news was given with very little emotion, in that clinical hospital office, with thin plaster walls, where the general noise of the busy hospital corridor was easily heard. The doctor continued his news by adding “or your other choice will be to take ‘it’ home with you and cope the best you can do – alone with very little help as the help is simply just not there... do your best, we won’t blame you whatever you choose, but these special hospitals are really the best option for you both and your family”…… After this devastating dark bleak news, they returned home with their, and in their eyes “beautiful, incredible” baby girl. A baby with curly blonde hair, soft, clear skin, beautiful crystal sky blue eyes. But devasting these eyes were very badly crossed, a medical condition known as “Strabismus” due to the little girl’s cerebral palsy and her poor eye muscle control. They knew with a realization, practicality of the amount of hard work that lay ahead of them, and their family. Together with the social stigma, of the early 1970s, that the family including this baby two siblings faced was unbelievable, nasty name calling, brutal yes brutal! disgusting nasty hurtful and bloody brutal, dark cold episodes of school play-ground bullying, even a teacher at the village school stating that “there is nothing wrong with this girl. She is just dam-right lazy !!” (this was the first time her 8year old brother spoke up for his little sister to a ‘person in authority’….. Marching angrily across the school Hall down the corridor and barging into this teacher’s classroom, shouting out “there’s nothing wrong with my sister, she’s not lazy! it’s not her fault, she is mentally handicap and you Mrs *, you are a horrible evil old woman!”, then, with tightly clenched little fists, trying so very hard not to cry, stormed out of the classroom, and returning to his class. This young brother also watched some family and what they thought were friends cross the road, so they didn’t have to make conversation. This could have been through overall general embarrassment, maybe their child was ‘so-perfect’ and hitting all those milestones in life, and this little girl no matter how beautiful, just laid in her pram, not really moving. But this little girl was so loved liked any other baby in the country, she wasn’t ‘special’ just so very much loved and wanted! Over the next 45 years loving, (totally unconditional, like any other child) ‘caring’ and doing everything for their daughter, this old man’s wife/mother fought for every tiny scrap of support from the local authorities. She passed away, on that spring early morning, alone in hospital, leaving her husband to care the best he can, and still trying to grief for his huge overwhelming tragic loss. But this gentleman tried his best to keep his emotions private, and his outward grief to a minimum because he didn’t want to do this in front of his daughter, as he still wants to protect his daughter, he still wanted to remain strong, brave and of course this gentleman was from a generation where simply ‘big-boys don’t cry!’ and ‘you just got to get on with it!!’ Making the choice for asking for help with his daughter was so very hard, he felt somewhat of a total failure, letting his daughter down after all this time of caring and protecting his vulnerable daughter and he felt he was letting his late wife down too. He was an engineer by trade, and he could – fix – things, make things, work! Changing the inside of their bungalow so his daughter could move around with minimum help and maintain the little independence this lady has and was also maintaining her dignity, and confidence. This took the look, of utility and clinical looking grab handrails on every! door frame, and even a ‘Heath-Robinson’ homemade framework with cable tires, between two armchairs enabling his daughter to get up and out of her chair and even two small handrails ‘riveted!!’ (Yes riveted! As an engineer in the heavy haulage industry would do – needs to be practical and safe!!) to the side of the larder fridge, it all looked a little crazy, but it worked! And worked very well!!…. Now feelings of failure were running around this gentleman’s head, because, as a family they said they would always care for their only daughter. To have strange people in his home, looking around, poking their nose into his and the family’s private business. Questions were continuing to spin around his head like, will these people be able to care for his daughter, keep her safe, not hurt her, or ‘do things’ to her!!! “You hear about people like this you see programmes on tv about staff who abuse people like his daughter. They have cameras on their phones these days ready to take photos in bathrooms and bedrooms.... oh, my daughter isn’t safe" ... But reluctantly very reluctantly, he knew deep down in his heart this elderly gentleman needs some sort of help, and his son kept reassuring him that these stories are very few and far between. The carers that will visit will be specialist staff, trained and carefully selected that know how to care/support his sister. Any case we are not asking for much maybe just one hour in the mornings to help get his daughter up, wash and dress her and maybe just maybe help to give her breakfast, after that this elderly gentleman was sure he could just about to managed. With the sad death of his wife, this gentleman was very concerned of stories he had heard of elderly parents with “mental handicap” ‘children’. The parent dies and their ‘children’ sitting in the house and eventually dying themselves of thirst and hunger next to a decomposing body of their parent. He couldn’t bear this to happen to his daughter too. So, his son, who was grieving for the loss of his mother, begins an unbelievable journey to get a tiny amount of help for his younger sister. Most of all he remembered his promise to his mother many years ago, that he will care for his sister, it’s a promise which is now coming alive, a promise of action now! Making a phone call to a local government office of the adult social work team. Explaining he needs help for his sister who is a Person who lives with a L/D. Listing all medical information, medications and a person-centred information, in fact the same inform that the social workers would use on their own assessment forms, so giving the local office all the up-to-date necessary information for the convenience(!) of the social workers. Having an insight into the situation (this son chooses to work within the adult social care system just for this moment!) of local support he believed that getting to the right professionals would be a very simple process, especially from a County Council in the West Country who is proud (or so they say!!) to support People who ‘live’ with a learning disability… Well according to their so-called mission statement - their values of practice…... But families including the siblings don’t have time for those luxuries of “mission statements - goals – visions – values – core beliefs – and even a family charter!!” all sounds very posh and convincing. But we, as families, just Love Care and Protect our Loved Ones, today and every day, day after day and, night after night!!.. Given the facts of the situation this son believes that a few phone calls would lead to a first meeting, where care could be set up, in any case the family were not asking for a lot of care. Nothing more than only maybe just one hour in the mornings, as the father was reluctant for strange -people in his house (“you hear stories, see programmes on tv! !” as this quite honestly scared! elderly father kept reminding everyone). So the phone calls to the local authority were made……. The Journey, of asking begging, pleading, made to feel dirty, like this family had just crawled out of a disgusting gutter with the idea of feeling guilty for even phoning the adult social care team, had started. After waiting for a few days. Days and nights of constant worry, trying to support his father (with his anxieties issues about calling in a care company), and of course especially his sister, who was missing her “mum-mum” together with, dealing with the business of what comes after a death in a family. Register of the death itself and the collecting of the necessary certificates, dealing with life insurance companies, DWP and the bank etc. Dealing with all that brings and finding some quiet time to sit supporting his sister, explaining in the ways that his sister could easily understand, and without causing her too much stress, just why her “mum-mum” wasn’t coming home from hospital this time. “Mum-mum is at peace now, up there in heaven”. Using every form of communication that the brother knew his sister would understand. Keeping the stress away from his sister, keeping her happy and spirits up, making jokes to break a smile however tiny across his sister’s face. Jokes like “your brother is a pain in the bum” his little sister’s reply with a smile as such, was “oh yes bum ha ha” . All this and forgoing any feelings himself for the time being…. ‘Crying those tears of grief in that dark silent world, many other families who Loved Ones need that extra help in life would know all about’... After waiting for a few days another round of those phone calls, firstly to be told quite bluntly that the social worker who was dealing with ‘the-case' was out of the office so just leave a message, if you must!! After again a few days of waiting which really meant weeks of waiting, worrying, and the continuous sleepless nights about what could happen. Yet more phone calls are made and what had become a normal response from the local government office. Staff dealing with the situation was out on meetings and unsure of their time on return etc, on A/L (what’s an holiday?), or in a meeting. Together with refusing to deal with any questions the son may have, as ‘there’s a social worker dealing with the case’. The office did make two phone calls to the brother, they were made on Friday afternoon’s around 3.45pm, (as the brother was waiting to collect his own children off a local school bus) asking somewhat ‘strange questions’ such as which ‘special – school’ did ‘the person’ attend, over 35 years ago! The other side of the country in East Anglia. A phone call that would start with “I am very busy and can only share you a few minutes, but what medication is your sister on again, when did she move to the area?” All this information, back and forth simply because the office couldn’t find his sister on, ‘their’ system, this only shown that ‘A - System' is much more important than A Person who ‘lives’ with a learning disability, to a local authority... As constantly reminded this family have never! received any adult support from any local government office anywhere in the country, whether that was in the West Country (they returned, where the late mother was bored n bred, to settle down in their twilight years) or in East Anglia, where this now middle-aged lady was born, 45 years ago. Where this family choose that path of “taking ‘it’ home and doing the best they could do'... alone...” In a somewhat state of incredible desperation of waiting now for a few months, driving across a large rural county in the West Country, trying hard to hold both families together. More desperate phone calls of pleading and begging for help! Another week past now the frustration started to build. In a total state of desperation, the son/brother decided to phone the families GP was made. Didn’t really want to bother the busy doctors and surgery staff, but the frustration of nothing happening, the son only to see if anyone from adult services had even made contact. But of course, no such contact had been made, and it was very clear that the Adult social care team had not even bothered to make any contact with a family’s GP. It goes without saying that the family doctor was mortified to hear the story. The doctor’s tone of voice changed from a kind understanding and sadness as they knew the late mother well (the doctor was away on holiday at the time the mother passed away, and honestly explained that she simply didn’t know….), to a tone of best described as somewhat, professional anger, asking which local office was taking the phone calls and dealing with this ‘urgent situation’ .... within 20minutes a member of staff from adult social care team, phoned the family explaining in quite sheepishly and in a shy manner, that they had a doctor phoning them and they now need to see the daughter, as quickly as possible as the doctor needed some answers in why this had taken so long. The Brother explained (only to keep issues ‘transparent and on a honest factual base, working within the adult social care, the brother knew ‘they’ like things to be “Transparent”) that it was himself, who that made the phone call to his sisters’ doctors. A meeting was planned, for the very next day, after asking for some months the first meeting was finally going to happen. This amazing lady who lives with a learning disability was going to have a little bit of help. After ‘fighting’ over many phone calls many sleepless nights, moments of ‘unnecessary’ stress cause by the adult social care department of the local Authority who are charged to support People who ‘live’ with learning disabilities, in care homes/supported living homes and even in their own home with their loving family members. After speaking to the family GP, and with the backing from the family doctor, a tiny care package was put in place. Just 30mins in the mornings…. ~ A journey of outside help began ~ Unfortunately, the care provider was far from satisfactory and his sister, this daughter……this vulnerable somewhat scared lady, was ‘cared’ for by extremely hard controlling staff, who refused to understand the dynamics of ‘a Person who “lives” with a learning disability living their life, at home within a loving supporting family. The staff together with the full backing from the board of directors of this care company that the local authority fully supported and backed without question, and quite frankly covered up all concerns, would refuse to ‘listen’ to the family. Emails were answered and phone calls were made, but nothing happened, and nothing would change. On many occasions refused all offers of help from the family. The care company only had their very own agenda, and that agenda of this care company not do included supporting a Person living with a learning disability in their! Own home….. They simply denied this vulnerable middle-aged lady her basic human Rights her basic personal care needs and this does not include the families’ views and more importantly the Persons views. This lead to place this Person in a situation where she would withdraw deeply into her own shell. Imagine a stranger entering your home, because the carer was unable or unwilling the push a front doorbell. Or stand by their front door contacting their main care home to retrieve the number for the ‘key-box’ to let themselves in the house. When asked to simply ring the bell the carer would look blankly at the family member. This look clearly indicated that there was no understanding to the dignity, and the overall respect of the Person together with the fact that the house is the Persons home! At a time when this lady had attended her ‘mum-mums’ funeral, and as any daughter would be feeling a great loss. All the care staff would do each day was to get this vulnerable lady up, wash her on the toilet(!), yes, a middle-aged lady would be washed on her toilet. As after one morning a staff member, abused this lady in her shower, leading to her complete breakdown and refusal to use the family large double doored shower again, as this lady was completely terrified!! (a shower unit that this lady was totally used to using, as mentioned before, where the lady’s father fitted many grab rails and a shower seat fitted for his daughter), even with her family members helping her, this now completely scared and terrified middle-aged lady, would cry and scream out in her bathroom. The naked fear in the lady’s eyes of the shower was so very clear to see, and due to the behaviour of a care worker one morning, after this lady’s elderly father ‘told this care worker off’ for not leaving the bathroom door ‘ajar’ (as this elderly father tried to explained to a not-bothered , not listening carer, as of course they knew best because they sat a one hour course of washing and dignity, why they must leave the door slightly ajar?)……“If my daughter has a fit she could fall off the toilet and land against the door stopping me helping her!!” He added due to the level of frustration “you carers never listen!!” (this is a familiar story from families after inquests reported on the television news programmes, that ‘care companies are incapable of simply Listening to families !!) … The carers would help with breakfast quickly, so the staff could watch the families TV and play with their mobile phones and laptops. As the care package was increase, after again amount of pleading and begging, (due to the rapidly failing health of the elderly father), so the hidden controlling of this lady increased….. Being told “to wait!!” as a ‘carer’ places their hand on this lady’s chest to keep her in the armchair until the staff were ready to support this lady. Ironically due to this lady overall confidence, she moves slowly and being asked to “oh hurry up” was the words spoken to this lady, and never over this past half a century, never the word “stop and wait” was ever used!! The carer found an old ‘farmhouse’ type of large dessert spoon at the bottom of the kitchen drawer and chose to use this large old-fashioned type of tablespoons now with aged sharp edges to shovel food into this lady’s mouth. In doing so the care company staff totally ignoring and disregarded the NHS Eating and Drinking plan. This plan was written to support the care staff but more importantly the plan was written to keep the lady safe, uphold any independence and dignity the lady still had. When the family asked for this type of old spoon not to be used by the care staff, only to be told (rudely) that “I should know which spoon to use and I have been feeding-her!! for 3 months!”... this sharped edge old spoon was remove from the kitchen, and eventually locked away. Totally refusing to allow this lady to use her grab rails that her father had put up for her, instead grabbing the lady’s hands tight and pulling her from room to room. Listening in to other and somewhat private family conversations about the father failing health and his needs. After some time and many meetings, and countless emails with this large care company (building evidence of their level of care !!) and the social workers who would always support the care provider and never the Person and her family. Such as meetings that were planned as a one on one (the brother and local care manager) were actually turned out as one meeting that was extremely brutal one-sided as a 3 care staff and including a director of the care company and a social worker, they tried to bully and intimidate, the lady’s brother with threats of “there are cheaper environments for your sister to go that you are fully aware of, aren’t you!!” The continuous false public promises made to the brother that only better experience knowledgeable and overall better trained staff, would only attend the lady’s home, as the care company’s feeble excuse was simple “oh it’s a training issue” . But this company saw supporting, with dignity in the person best interests within their own family home where they remain in control of their care package either than in the “supported living house” where first and foremost the building is where staff work and not where People live! The bullying continued from the social worker and the care staff (inc the director) as the brother worked for this care company too. The manager, senior care staff and the company director tried to pass the blame on to the brother for their own lack of care and understanding of a Person living in their Own Home. But what they couldn’t and wouldn’t understand that he is only now living the heartfelt promise to his late beloved mother, all those many years ago, and he is a ‘Sibling to a Person who ‘lives’ with a learning disability!!’……..now a sibling like this is different to other siblings. A person who is able to cope with dramas that other people may buckle under the strain. From a very early age these type of siblings had to cope with situations like learning quickly how to sit (for what seemed like hours upon hours and especially on those hot sunny summer days when playing outside with friends, bike rides down country lanes, and simply playing games in the summer English countryside and gallows of fresh air would a far better way to spend the day, but oh no sitting bored and at times felt up were the order of the day), in waiting rooms of the out patients clinics at the general district hospitals. Watching his mother eyes filled with a worry that was beyond his imagination. Helping to “roll- play" with his sister so doctors and other medical professionals could observe his little sister do the simplest tasks, that any other child would complete without a second thought. Be concerned as his sister was put through physiotherapy appointments, the cries of pain as his sister were pulled and pushed to do physical exercises. ...but there was always a quick 10mins to play with special equipment himself, other siblings never got to be able to do this, he often thought to himself, that in a small way he was lucky, as he was in an area normally ‘out of bounds’ to ‘normal’ siblings. And of course there were the visits to the hospital cafe, a cheese roll (oh the NHS cheese roll – worth ‘clapping for!’ remember clapping for our NHS hero’s? some of us had been clapping since 1970), a packet of crisps and a bottle of pop made these visits more worth it. Where he would sit and quietly watch the amazing incredible nurses and other hospital staff, rushing around performing miracles or as they would put it “just doing our jobs" (and having the privilege to witness these amazing incredible miracles in that place where “Heaven – Meets – Earth” Great Ormond Street Hospital) ...and all this often starts even before the grand maturing age of 8yrs old. This ‘invisible’ training often takes the form of empathic understanding for the other, patience, perceptions of others, and a natural hold on to equality and diversity. Most siblings of a Loved One ‘living’ with a learning disability mature extremely quickly so they can support their parents. This experience builds something strong and special within the souls of siblings. With the many concerns raised with the level of care and support and respect for his sister, the brother increased his role of responsibility, and the reality of that old but very much, not forgotten promise to his mother all those years ago became ‘Real’….. As now the father’s own health was failing, and failing fast, at this point and the elderly gentleman was in need of his own social worker, and care package. With many in-patients’ visits to the local community hospitals, and the father health failing everlasting now. The social workers accused the dying father’s son of shouting at him, was the family home a safe one for the daughter? Only after the fathers own carer entered his bedroom and spoke loudly to him (so the elderly man could simply hear a cheerful ‘good afternoon’)….. The son eventually felt it somewhat necessary to call the detail of the Equality Act 2010 in another bullying meeting at the family’s home, as the adult social team were discriminating the father and son were from a different area of the UK (which for these regards is the same as stating a different country other than the UK). Where people talk in a different way to the area of the West Country where they both live now. The father passed away in the early hours in a local nursing home a few weeks later, after the family doctor stepped in and supported the family… But his daughter received no extra support about ill health of parents and the passing away of her parents, this would be down to this lady's brother to provide this, overwhelming intense sad news all over again, with no assistant from any adult social care worker. The local authority social worker and the care company were too busy supporting themselves after the evidence was before them. Evidence that was purely factual based and not opinion based about staffs personally. After the father’s funeral, the care company told the grieving family that because the brother had moved into the family bungalow, (to fundamentally keep his vulnerable middle-aged sister Safe!!), they have decided to withdraw the care package for his sister and with no notice, and this was done with the total agreement full support from the social worker. As it was very clear now that the local adult social care team only support their chosen care company. So now the family needed to enter, without any support, the somewhat different world of Direct Payments. Because the building of evidence can take time, and pure factual evidence is what is needed as Care Companies do this strange thing of passing the blame, talk about perception (you don’t like this staff cause *** or they have tattoos etc) so evidence is always required. Finally, the night came when the brother could tell his sister that the carers won’t be returning in the following morning. Together with another sibling heart to heart chat at his sister’s bedside, why her ‘mum-mum’ wasn’t coming home, and ‘mum-mum’ was ‘at peace’ and now with nanny, grandad, and some of her old friends and now together again with her Gig (her loving Dad) ….at peace, in heaven with Jesus, resting. The following morning, after her brother’s partner helped to get her washed and dressed, his sister walked into her! kitchen using her! grab rails again, looked around Her! kitchen and started to ‘sing out (la-la-la) and waving her arms' smiling as she could see that her brother was telling the truth about the previous night chat....no more controlling nasty carers are coming !! This singing and waving, in a way, upset but at the same time over-joyed (that’s siblings of Loved Ones who live with a L/D…juggling two completely opposite emotions all at the same time, that’s just another thing that makes us! Different to other siblings), because of his sisters’ reactions, he now knew that his vulnerable sister was abused, even with all the evidence, he knew his sister knew how it felt being ‘abused like this’ by this group of support workers. But she was now much happier so that means his sister understood that the carers were not good people. But now she is happy and that makes it all worth it. Since the death of the father, the brother and his amazing partner have moved into the family bungalow. His sister is now once again being supported, cared and most of all loved, by the people who know her best …. her own family, her sibling and his wonderful partner, who is a sibling herself, to a lady who ‘lives’ with (in her own words) “ A – System….with an extra bone” , something that the rest of us would call Downs Syndrome (that condition with, ‘an extra chromosome’)…… This lady is now enjoying ‘her’ life to the full again, free and most of all, safe, from controlling staff of a care company, whose parent company is a national care provider which its head office in the Home Counties employing over 7000 staff across the country. That dark place for this lady, her shower room. The place that would terrify her and the feelings of intense fear, well with the speedy assistant from the NHS occupational therapy, who now were able to listen to the family and not shut out of conversations from the care company staff as before…… a new wet room was fitted at speed after the NHS OT was informed of the whole story. This returned the lady’s dignity, and her confidence growth stronger each day, with the loving support from her family. The Lady’s favourite colour just happens to be – purple. The lady’s greying hair? Oh yes its purple now…..crazy! Even the mundane tasks of medical appointments she takes in her stride, safe in the knowledge that she-is-safe! With her family... Imagine being under general anaesthetic for over 3 hours, for oral surgery simply because the carers from this care company who refuse to listen to the family even though their own so call Family Charter states ““our pledge to families is that we will always do our best ~ listen to families, break down barriers by family involvement”” ... So, this meant the staff wouldn’t clean her teeth correctly (refusing to take guidance from the family and the NHS dental care plan!). She is now, once again an active member of her community, living her life to the full. She has return to her church, something that was never followed up by the care company, after a request from the family and something she did with her “mum-mum”. The fact remains that this lady due to the wonderful kind foresight of the Bishop of Peterborough (the Right Rev William ‘Bill’ Westward) that in the late 1990s she was Confirmed in the Christian faith. Her parish vicar at the time, said that this lady may not be able to read the Bible but she knows where and when to shout out Amen! This lady’s confidence growing again returning to her life, and she began to attend coffee mornings, in the local Salvation Army Hall, meeting her old friends that she shared with her beloved late mother, and making new friends. She like many ladies loves her shopping trips for clothes and loves BonMarché and she will, sometimes, yes sometimes maybe, tolerate her brother helping her in this shop, and enjoys her supermarket shops especially when its time to pick her favourite sweets, a bag of ‘jelly-babies’…. Day trips to London on the train with her new ‘powered-wheelchair’ to see the flowers for the late Queen. Sightseeing with her brother his amazing partner and with her sister (with, in her own words she has ‘A-System’ and that ‘extra bone’), who now after the passing of their own mother, now lives in the family bungalow too. The two sisters have become firm friends and possibly a force to be reckoned with. The sisters are now attending a local day provision a few days a week, where they continue to make lots of new friends, and enjoy some wonderful activities. Once a month they love the local Mencap disco where they meet up with their friends. Safe to enjoy their evening of music and dancing away from controlling staff. Allowed to live her life as she wants to …one of the lovely memories, was a simple to so very powerful of just feeling safe, after only a couple of weeks of getting used to her new wheelchair and going out again, a trip to the local ladies hairdressers around the corner, was planned. As she settled into her wheelchair just outside her front door her brother said that he would settle her dog and lock the door, this lady’s reply was simple “No! me and Tra-ccey (the brothers amazing incredible partner) bye!” And with this the lady started to wave at her brother left standing alone, at the door, “oh ok bye then" was the only reply that could be given.... With this the two ladies set off to the hairdressers, laughing out as they went around the corner..... well, why would you want your ‘brother’ to accompany you to the lady’s hair salon!?! Amazing! She is now safe again! And above all - Happy! Families come in different sizes and shapes, that’s the incredible amazing, beautiful world of diversity of families. Some made choices of walking the path alone, some choose to leave the hospitals to care for their child. Others banged on doors for help. Whichever path is walked this path can bring amazing incredible moments of sadness and happiness. Achievements measured in millimetres and centimetres, months of time not hours. Half a smile that may not been seen for years is like your sibling attending the University first class honours degree top of the class ceremony. Life milestones special birthdays sometimes pass without notice, or some celebrated with amounts of happiness simply because the Person is.... alive and for that moment in good health... Families and siblings continue to worry for their Loved Ones, the countless nights, of sleepless stressful nights. Even in the corridor just outside the ICU ward of the county general hospital. Due to a series of epileptic seizures, As this lady lays fitted up with the cold but necessary unavoidable machines helping to keep her alive, and only just…. The conversation had been spoken about – “do you wish your seriously disabled sister to be resuscitate” (well you know what they mean of course). Those dark cold places we cope with! Reflecting on how his parents (and many others) used to about the question, what happen to our ‘child’ when we are dead. Most other parents would wish their children, firstly definitely out live them, living a strong successful healthy and prosperous, living their dreams and desires to the full, surrounded with love and kindness……Quite a simple wish for every parent... With the continuous fear of what would happen to their ‘child’ after their own death, the dark hope is for their loved one to die before them. Not quite the same wish of other parents, but a somewhat sad filled thought. That same thought started to run through the brother’s mind as he stood in that corridor. A parent or sibling who’s loved one needs a little support in life, is face with that horrible thought and the ultimate decision to make. The constant anxiety of social workers and other ‘uneducated’ professionals trying to change their Loved Ones happy life. Even in the dark hours and days as the lady was fighting for her life in hospital the adult care team of this local authority couldn’t even be bothered to contact the family, yet a social worker choose to make contact with a small day service this lady attended for a few hours a week (within 24 hours of the lady being wheeled, in a state of unconsciousness, seriously ill, through the A&E dept doors). Asking if the lady was in good health the previous week. As they had heard she was in hospital. The adult social team did not contact the family of this serious ill lady. Even today’s social stigma, that still exists in the dark places of our horrible side of society. But we (families!) coped day in, day out, hour by hour, we simply have to! And we may still cry silent tears but now there’s hope with those tears. This story, edited (true, and in parts I’m sorry to say) but a period of the lady’s life and her family..... “it’s my sisters story…….. …….Yes I am that little boy back in the 1970s with clenched fists in that village school !!” As the brother of this story. A story of many in our life’s being a sibling to a person who lives with a learning disability is a privilege, that can be so inspirational, a gift that has and continues to mould my lifestyle. Making me the person I am. Some experiences can never be copied by siblings who don’t have our special amazing siblings. Our paths of life cannot be learned from a book or a website. But these paths make us strong. A path that may be sided with a cold darkness stigma of hate, brutal nasty name calling, years of brutal nasty bullying, sadness, and fear, fear for our siblings……… But this path is also lined with something more amazing its….. Love, Kindness, Resilience, Versatile, Courageous and Bravery for our loved ones. A beautiful path that is unique to each sibling and family…………….