So wonderfully proud of all my children, Rachael, Sara and Paul Xxx

So very proud to call his man my son C x

My Sister Rachael How does one sum up a life? And to what end? That is something I have thought long and hard about over this last month and I cannot escape the fact that it is a challenge. Words are important to me. I am an English teacher and a writer; oration and written expression are my bread and butter. Surely then, as Rachael’s brother, I should be able to do justice to her 44 years; should retain the capacity to evoke her life - her spirit - for those who were touched by her journey through this world before its premature ending on the 19th June? I’m not at all convinced it’s as simple as that, though. Families are complex and, from my perspective, mine especially so. To me, a eulogy such as this should seek to evoke the best of someone we’ve lost because grief is about reconciling oneself to that loss by quantifying the life curtailed and framing it in the context of its intersections with others. Furthermore, as I wrote in the introduction to these pages, one must be mindful of the fact that Joe has been robbed of his mum and, for all the myriad, deeply loving experiences he had with her over his five years, it’s clear that it will be hard for him to retain a view of Rachael as a rounded person in the decades ahead. I have no doubt whatsoever that his sense of her as a loving force in his life will be absolute, but my wish for Joe is that he also should know Rachael as a woman; should understand her as a human being who lived and loved, worked and rested, laughed and raged, struggled and shone. So I feel my words are important. They must convey personal truth but be mindful of the limitations of a single perspective. I come from a family dominated by faith. Please don’t infer a pejorative aspect to that choice of verb, by the way. I am an atheist - and very comfortably so - but I do recognise the personal relationship with God my loved ones feel and fully acknowledge the importance of their sense that He constantly guides each of our lives to better ends. So at a time of grief, what could be more comforting when grappling with the loss of Rachael as a daughter or wife, sister or cousin, niece or friend than the sense that her life was shaped and had divine purpose? So I seek not to offer a definitive account of Rachael’s place in the world; rather I offer a singular and deeply personal view in the hope that it may further enrich the sense of his mother Joe will cling to as he grows to adulthood and beyond. I feel too that I should acknowledge the nature of grief: it is a deeply personal response which requires one to examine and contextualise raw emotion. I should state that I am not a man who struggles with his feelings. I have a strong sense of self with a clear understanding of my emotions and an ability to express those feelings in a way I consider to be both healthy and purposeful. However, I am also mindful of the fact that emotions shift and alter with time; that life moves us into new realms of self-awareness. I therefore have given serious consideration as to whether this is the right time to commit my thoughts to the page. Why should my current feelings about my sister be any more valid than those I felt last year or on the 19th June, or be more deeply held than those I’ll experience next week or on Joe’s first day at high school? In short, they’re not - but if I continue to wait for a perfect moment to express myself, it will never come. I will talk to Joe about his mum for the rest of my life, but I may never again have a truer grasp of her current place in my heart than now; ergo, I write. Inevitably one must have recourse to memory at a time of loss. Memory: that unreliable narrator with its pretence of omniscience; its vagaries, inconsistencies and convenient truths. But if not memory then what? Rachael was a great chronicler of her own story via social media, a habit I do not share and indeed find incredibly odd in its frank and unedited expurgation of daily perspective. However, I see now the raw truth of a Facebook autobiography with its contemporaneous expressions of emotion and visual record of life. Rachael’s need to express herself publicly is not one I share and yet I now realise my frame of reference for this was distorted. Fundamentally, there is no difference between catharsis online and a chat over a pint: it’s all self-expression with the goal of personal insight. However, memory is what I have and I therefore offer some edited excerpts from mine in full recognition of its limitations. The summer of 1976 is writ large in my childhood memory bank for the arrival of the worst bout of hay fever I’d yet experienced at the same time as the birth of my youngest sister Rachael. These two memories intersect in my mind at the door to a maternity ward at Clatterbridge Hospital where, with snotty nose and itchy eyes, I climbed on the kick plate of the ward entrance door in order to catch a glimpse of our new baby sister. The sense that this was a special addition to our family was palpable even before we learned of Rachael’s achondroplasia. Sara and I were just desperate to meet our new baby sister and the delight we felt when eventually able to do so was visceral. Later, the pride and pleasure I derived, as a five or six year old, in getting my baby sister up on a Saturday morning and changing her terry nappy with its huge safety pin, so my mum and dad could have a lie in is still vivid to me now. I loved that baby girl so much and I now realise - literally as I type - that my life-long love of children and commitment to their welfare and development was born in those early moments I shared with my youngest sister. Writing these words now, I feel completely overwhelmed to finally see the root of who I am in those early days of Rachael’s life. My sense self is anchored in my relationship to children: fatherhood is something I felt destined for from the earliest days of my life and remains the font of my daily purpose. Those deep-seated paternal instincts have also been given full vent throughout my twenty plus years as a secondary school teacher serving the deprived communities of Rock Ferry and Tranmere, Birkenhead and Seacombe, working to improve the lives of literally thousands of young people. To now connect the dawning of that love of children with my first memories of Rachael is a profound experience and one which will consume my thoughts for time to come until it settles eventually into the recipe of experience and emotion that makes me me. Rachael as a little girl was an absolute charmer - there really is no other way to describe her. I confess I had lost sight of that view through the many years of pain and struggle she endured as an adult, but photographs and memories on these very pages have rekindled that sense of the spirit she was. The way she would amaze people by standing straight up from a seated position - an aspect of her achondroplasia she milked repeatedly to derive acclaim from her audience - is indelibly imprinted in my mind and to see Joe do the same now, therefore, is deeply comforting. We were in the privileged position as a family of having a mum who was able to look after us full time when we were little and our lives were constantly intertwined as a result. She would often take the three of us downtown shopping, inevitably gravitating towards the Beatties cafe for a drink and occasional sweet treat. It is no exaggeration to say that we could not walk ten yards in that shop without a member of staff or fellow shopper stopping to talk to Rachael, addressing her by name. She was quite literally locally famous. These people had no idea who Sara or I were other than in relation to our sister and yet we felt no sense of jealousy or anger because we were just as charmed by her as everyone else. Again, that same feeling is vividly evoked in response to Joe now. He is his mother’s son. No doubt. Later memories of Rachael inevitably circle around disability, surgery and the hardship she endured as a result. As will surprise no-one who knows us, Rachael, Sara and I were brought up to have strong opinions and were not shy in voicing them. That can be a blessing and a curse, but regardless, it remains true. Mum and dad were vociferous in expressing Rachael’s absolute equality in the world, regardless of her disability and this took shape in many ways, not least in their successful fight to have her included in a mainstream school in the days before inclusion became a political subterfuge for the gradual underfunding of support for children with additional needs. Coincidental with Rachael’s transition to secondary school, where she joined me at Rock Ferry High as a member of only the second coeducational cohort the school had had, was the commencement of her limb-lengthening process. I recall a family trip to London when, sitting in one of the first McDonald’s restaurants in the UK (her obsession was inculcated early) and eating a burger and fries with a milkshake, mum and dad told us about the possibility of Rachael having surgery to lengthen her legs. I have to say that I recoiled. I was righteously indignant that, in my eyes, Rachael was to be changed in order to suit the world rather than vice versa - and I said as much. In retrospect, that challenge must have been hard for mum and dad (although I’ve no idea whether they even recall it), because I know their decision was rooted in their aim to equalise Rachael’s opportunities in life, impeded as they were in early 80s Britain - a time and place where there was no legal right to equality of access or provision for people with disabilities. However, I was simply unable to see past the pain and struggle implicit in years of limb-lengthening surgery; more than that though, I railed against the notion that Rachael should have to change in order to thrive. It felt so profoundly unfair to me in a way that only a child can perceive injustice. There was no nuance, no balance of arguments; just wrong. However, a prerequisite of surgery under Mike Saleh in Sheffield was Rachael’s full understanding of and agreement with what lay ahead and so, with that clearly in place, the teenage years of hospital stays and physio, pain and infection began. No doubt you can tell from my words that I still struggle with this whole issue. However, I am absolutely clear - because I asked her directly, relatively recently - that Rachael had no regrets. I do reflect though that, in combination with the five year age gap during those formative teenage years, this incredibly difficult period created a distance between us as siblings that was never fully closed and I frequently wonder what our relationship could have been given a different set of circumstances. That said, we must each play the hand we’re dealt in life and Rachael played hers with courage and determination. I cannot deny for one second her absolute pride in her “lovely long legs” when the years of surgery were finally over. That changing relationship between us took root during Rachael’s teenage years when my need to protect her from unkind teenage stares and comments on the bus or in the street, clashed with her need to assert herself. I then left home for university and the independence of adult life just at the time when Rachael was starting to become her own person, evolving from a little girl into a woman herself. In some senses, I think each of us felt it hard to leave the childhood roles of little sister and big brother behind, neither of which was suitable for an adult relationship. However, one element of that bond which remained palpably strong was the fact that throughout her life Rachael would accept words of advice or challenge from me, the details of which I won’t reveal here, which she would not take from anyone else. Whether they were of use or support is not for me to judge, but I hope that at the very least I was able to offer her other perspectives at key times in her life which led her to make choices with which she was comfortable. Other memories of Rachael I wish to mention here include the morning of my wedding when, hung over from the previous evening, she woke me up at mum and dad’s house at the crack of dawn, as she repeatedly ran to empty the contents of the previous evening’s skin full into the toilet; the day Kath and I found her waiting on our front doorstep for our return from a weekend away to portentously announce “I’ve met someone!” (Hamza, obviously - I honestly thought though that it was going to be bad news, so melodramatic was she!); her self-invitation to join Kath, Harry, Ella and I on holiday in Florida when - glossing over one hum-dinger of a row - we had a great time swimming with dolphins, enjoying the full Disney experience and eating Christmas dinner literally by a swimming pool; her wedding in Tunisia to Hamza - the happiest I’ve ever seen her in her entire life; and of course the day she brought her utterly beloved Joe into this world. On that day I think she felt a sense of absolute completeness as a human being like never before. Of course, it was in motherhood where Rachael was most herself. I suppose it is possible to have negative connotations of that word. Firstly, one could use it to interpret parental love as a uniquely female trait, something which I would utterly reject; furthermore, there are connotations of motherhood which can be used to make women feel restricted, leaving them ultimately unfilled in their lives. However, with specific reference to Rachael, being Joe’s mum was absolutely her life’s work; she saw no limitations or inhibitions in looking after her boy. All her love, determination and independence of mind and spirit led her to be the mother she was. To Rachael, motherhood was not a “what”; it was a “who”. If you could ask her now who she was in the most fundamental sense, I know she’d reply “Joseph’s mum” (she never used the diminutive for his name, of course). Joe, you were her pride, her joy, her inspiration and her goal, and that was writ large in every element of her life from the day you came into this world. What a privilege for you to have had all that love, skill and experience in the creation and service of your life, even if only for five short years. As I sit here now, I know that you will feel her absence constantly and in different ways throughout your life to come and for that I am deeply, deeply sorry. In some senses, when I mourn for my sister, I really mourn for the fact that she was denied the chance to give full rein to her ultimate self: being your mum. However, please know that she felt absolute and unconditional love for you in a way I fervently hope you can experience yourself one day, thereby better understanding her. You will see and feel the love of your wonderful dad, of course, and that is no small thing. But Rachael’s love was something palpable. I know you felt that because I saw it; I want you to remember it too though in those days when you look back with more questions than answers to this awful time of sadness and loss. I’m mindful as I draw to a close now of the ultimate paucity of language in the summation of a life. Life is the most incredible thing. It is a gift of experience we each receive to shape and direct as we see fit. Mere words then could never begin to do justice to a life like Rachael’s. However words are all we have if we seek to share our experiences of her deeds, evoke her spirit and celebrate the mark she made on the world. As an atheist, there is no God or heaven for me; what then is the point of this life? One could argue from an atheist perspective that there is no point; we are simply accidents of nature with each human life a mere fleeting moment in the history of a universe too big to comprehend. However, I believe we are more than an arrangement of atoms; we are each sentient beings with thoughts and feelings based on human interactions; fundamentally we’re social creatures who navigate a course through the time we’re given, deploying that time as we choose. The words of others on these pages have reminded me of aspects of Rachael of which I’d lost sight and also revealed elements of her character which I’d not experienced. Furthermore, they have led me to draw personal parallels with her which I’d either forgotten or overlooked. In big ways and small I hope we are alike: lovers of food and music; opinionated and driven; full of love and moral purpose. And for the possibility of such parallels, I am grateful to those who have shown me a different side to my sister than those I was able to see for myself. Ultimately then the reason I have chosen to write these words is that I hope they may help others grieve for my Rachael and know her as I knew her: a deeply loving and committed woman who struggled and strove to make life better for herself and for others. And therein lies the meaning; that’s the afterlife we all seek: Rachael lives on in our hearts and our minds because of what she did and said; because of how she lived and loved. And what an afterlife that is. Beyond that afterlife of heart and mind though, Rachael lives on in Joe. He is not his mother and nor should he feel the need to be so. However, he contains everything that made her the person she was and I rejoice at the fact that I’ll continue to recognise my sister in him. Who knows what Joe’s life will bring? However, I can say with confidence already that what I see before me in that beautiful, charming, intelligent boy makes me proud to have been Rachael’s brother. She was a remarkable woman who will be deeply missed. Paul