Tag Archives: family

Sunday Ramblings: Jumping Back In

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As I start writing this blog, it is 6pm on Sunday, 2 November, and it is dark outside. I hate this time of year. I honestly think I might have a touch of that SAD [Seasonal Affective Disorder], since I’ve been sluggish all weekend. Perhaps I’m just tired. It’s been two weeks since I got the pain injection into the shambles I call my hip. And while I’m not quite back walking full time yet, there have been some marked changes in my life. This afternoon, I took a painkiller for the first time in two weeks. Not because my hip was at me, but because I had a headache above my eyes, possibly from too much screentime. This afternoon, I cooked a delicious (if I say so myself!) steak dinner, complete with roasties and veg, and cleaned up afterwards. In fact, I’ve done a lot of cooking, with or without assistance, these last two weeks.

On Thursday, I went to a local disability meeting, with a group with whom I was heavily involved in prior to Covid. Everyone was shocked to see me. I think that they thought I was dead!

I’ve also managed at least half an hour on the exercise bike every day since last Sunday. I find that it’s taking me less time to cycle the same distance. And, if you’re reading this, this is the third blog I’ve written in the space of two weeks. I could get used to this level of productivity – it feels fantastic!

I need to hold onto this buzz I’m feeling, because I’m not able to go back in time. The truth is, whether I like it or not, I’ve lost so much time because of pain and exhaustion. When I finished the Disability Studies course in 2019, my plan was to do the “Train the Trainer” course, which (I think, but am open to correction on this) would enable me to give my own courses. Not only could I deliver Creative Writing Courses, but Disability Equality Training as well. Earn money, get a paycheck!

Or I’d like to do another oral history project, something like Conversations about Activism and Change. I typed out every word of those audio recordings, before editing them down. Damien Walshe and Des Kenny taught me useful lessons as I compiled and edited that collection, lessons that I’d love to apply elsewhere. Maybe I could do a collection of voices of up-and-coming activists? Without the heavy mantel of fatigue, my brain is swirling with ideas.

There are probably a number of reasons why I am reevaluating things at this moment. One is that I turned the big four-oh last year, and my original plan was to have my novel finished by then. Ironically, the first line of this, as yet, unfinished draft is “There are milestones one is meant to have reached by the time they turn forty.” This was me setting a deadline for myself, one that I’ve now missed. I would like to complete Rachel’s story, as I think many would relate to her internal (and external) struggles. She’s a hot mess, and often I want to strangle and hug her in equal measure!

Alison will turn fourteen in February. God willing, she will be going to college, an apprenticeship or a job when she’s finished the Leaving Cert, and as a stay-at-home mum, I suddenly find myself at a loose end. Where once I filled my days playing Lego, setting up Sylvanian houses or doing elaborate art projects, I now find all the time I once spent one-to-one with her spreading out in front of me like an overflowing lake. Don’t get me wrong – I’m still needed. For example, I was awake until one this morning applying tea-stains to her costume for the upcoming Addams Family Musical, as she is playing an ancestor. Apart from these moments, she’d much rather hang out with friends than her mum, which is a normal part of her push for independence. But I don’t really know what to do with myself.

I’m still available for proofreading work, but anecdotal evidence suggests that my opportunities in this area are fast diminishing in favour of AI. This is part of the reason why I didn’t feel motivated to complete that editing course that I started two years ago. If I think too deeply about it all, I start panicking. There’s nothing quite as sobering as scrolling through jobs.ie, and seeing that I am qualified for nothing relevant, nor have I the skills for local jobs. Waitressing, working on the shop floor, even factory work all seem beyond my realm of possibility. Of course, I apply anyway, because you never know. Dear reader, I don’t know if you’ve ever been to a job club. I have, and it was one of the most humiliating experiences of my life. I did this online career quiz and the top result was “Interpreter”. When the facilitator asked why I was laughing, I said “I can’t be an interpreter. I need one!” Awkwardness rippled around the room as my fellow jobseekers couldn’t decipher whether I was serious or messing.

So that’s where I am now, wondering what I should do next. All offers and suggestions welcome. In the meantime, I’ll be attacking my novel yet again while drinking the tears I’ve sobbed because of it.

Tuesday Thoughts: The Baby Book

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Even though I have my own swanky writing office, I’m currently sitting in my kitchen typing this, the back door open so that the breeze on my face keeps me awake, and so that the dogs can potter in and out without scratching at the door every five minutes. In front of me, on the wall over this dining table, are two black frames full of baby pictures of Alison with her aunties, her uncle, her grandad. It seems as though my love for her is splashed across the walls of our house. Her playschool graduation photos hang in the hall; her communion photos are in the sitting room. 

I’ve always loved photos. When I moved to college, the inside of my tiny wardrobe was covered in photos of family and friends. Until I got my first camera phone, I would bring these photos with me to remind myself that I was part of something bigger.

I didn’t own a camera phone in 2012, when our daughter was born. I didn’t have a whole lot, in fact. But life goes on, and incidentally, people who try to tell you that you should wait until you can financially support a child are talking nonsense. You will never be financially ready, or ready full stop. We were both working part-time, and juggling childcare between us, and a lovely lady called Sharon. And because we were both working, neither of us had medical cards. When Alison was diagnosed with cow’s milk allergy in June 2012, she was prescribed Nutramigen, which was €12.33 a tin at the time, so three tins was nearly €40. Camera phones were the last thing on my shopping list.

When I look back now, I wonder if I should have tried to savour it all a bit more. It wasn’t as though I wasn’t warned about this. People warned me that the days would drag but the years would fly. Advised me to treasure every moment, because she’d be gone before I knew it. To really make the most of it. And to be honest, now that Alison is entering her teen years and I’m trying to figure out what my new role is, I feel awful for having taken it for granted. 

As Alison and I enter a new and trickier phase in our mother-daughter relationship, once again I’ve found myself questioning my parenting ability. I know my parenting was scrutinised by professionals in the early days, but these days I find myself to be a harsher critic than any nurse, doctor or social worker. I need to be more delicate. No, more direct. No, more lenient. No, stricter. I give her too much independence. I need to let go more. Come nine o’clock, I will have a pain in my head, as I’m sure all parents of teenagers do. And this is without the traditional worries of sex, drugs and rock’n’roll, which I know are only around the corner.

And I see now that I should’ve captured her a bit better. I didn’t keep the first lock of hair that was cut. Nor did I keep any of her teeth. I have videos of school concerts, blurry ones that were taken by my shaky hand. I have incoherent handprints, futile efforts to capture her at a certain age. I didn’t mark the wall every year as she grew taller – this is the one that I regret most. I haven’t even made a baby book. A book recording her first words, the first time she crawled, her first steps. I don’t have the hair from her first haircut. These things weren’t priorities at the time. My main focus was on surviving and giving her as much of myself as possible.

Yet, I have such lovely memories that are mine alone and I don’t need to share with anybody.

Memories of teddy bear cinemas on Sunday mornings. Of tea parties and picnics on the kitchen floor. Of doing all the things I’d swore I’d never allow my child to do; Play-doh, sandboxes, art involving glitter and paint. I remember midterm breaks that involved me bringing her to Mr. Price to buy a few bits for a Pinterest-inspired art project, especially around Easter, Halloween or Christmas. Clay figurines, lollipop stick houses. It was a joy to watch, as she got older, the improvement in her colouring or the increasing time she’d give to painting decorations. She would design our Christmas cards and handmake birthday cards for family and friends, projects that were thinly disguised activities to get us both from one day to another on days where I struggled to hold everything together. 

Or we’d walk down the canal and pick flowers (weeds), again killing time while she looked for “rare” flowers. I used to love these walks. We’d find conkers and helicopters, all of which were pocketed of course, then caused problems in the washing machine when they were undiscovered. I remember the long days we spent in the town park, chasing birds or looking for butterflies or ladybirds.

I remember teaching her how to read, making cards with words like “table”, “chair”, and “fridge”, and watching in awe as she stuck them to the correct objects around the house. I remember the first book she “read” on her own: Angelica Sprocket’s Pockets by Quentin Blake. I remember her first day of school, how lost she looked in her uniform, yet how enthusiastic she was. In fact, until last year, Alison rarely missed a day of school, such was her love of learning.

On the sad day when she decides to fly the nest, I will have copious amounts of artwork, stories and photos to look back on. But the most precious will always be my memories, of a happy, intelligent and truly unique child, which will live in my psyche until I take my last breath. I know that I did my best. And I have a loveable girl to show for it.

Our Fallen Comrades

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(In tribute to Selina Bonnie)

“…and those who once paved the way for us

Are dying, one by one…”

This is a quote from my own poem, Fight, Fight, Fight, which I wrote in November 2017. John Doyle had just passed away, and I was upset and extremely pissed off. Bereavement and death is a fact of life; we all deal with it at some point. Many of us spend our lives grieving a grandparent, parent, friend or, unthinkably, a child. Death is a natural part of life; yet it doesn’t feel right to say that I can list, off the top of my head, at least thirty people who have died in the last ten years. Perhaps more than thirty. Disabled people, that is. Peers. Companions. Life-long friends. And no matter how many times we lose a friend, the sting is always acute.

I have been trying for the last ten years to understand the unique bond that holds disabled people together. It may be that organisations such as Independent Living Movement Ireland and the Irish Wheelchair Association created spaces over the years for disabled people to come together. Maybe it’s because only we, with our wealth of lived experience, can truly understand the exclusion and discrimination that we face on a daily basis.  When we share our experiences, we come to understand that it’s not “just us” and, over time, we realise that we are not the “problem”. And when one of us decides to challenge the system, we all do. As difficult as it can be, we understand that our personal must become political, in order to help those coming behind us. Of course this isn’t fair, but knowing that you’re supported by a unique movement, motivated by a genuine thirst for social justice and a desire to make life easier for everyone, makes the life of activism a lot more bearable. People who look out for you and genuinely care about you.

When we were born, our parents were told not to have high expectations. That we would never amount to anything. And that we wouldn’t live long. That speech seemed to have been given to parents of disabled children everywhere; I have heard and read those exact words, verbatim, so many times in my life. Thereafter comes the next part of the story: we proved them wrong. We earned our place in the mainstream. We progressed in life, despite the low expectations. Then we became examples, beacons of hope for the generations coming behind us. And as disabled people, we bonded through our victories and shared disappointments and became stronger. We became family. A modern-day family, with favourite brothers and sisters, and pains-in-our-arses that we begrudgingly admire, sometimes even partners and soulmates.

Very often, disabled people came together for a common cause, but as we began to open up to one another, we realised that our commonalities went much deeper. We shared the trauma of overmedicalised childhoods, and as we became more comfortable with each other, we started to wonder if we could, in fact, have a better quality of life. With our peers behind us, we felt emboldened to take risks, to reject the pity of strangers in search of equal rights. As children, or newly disabled people, no-one told us that we didn’t have to put up with injustice. Through getting to know our peers, we figured that out for ourselves.

That’s why it’s always such a bitter pill to swallow when one of our precious family members is taken from us, far too quickly. As a collective, we have broken through so many glass ceilings, but in a personal sense, disabled people have become my closest friends, the people I trust most. If I need advice on parenting, on adjusting to life with chronic pain, or even on what kind of dress would suit me, it just so happens, without me thinking twice about it, that I will seek out a fellow disabled person. I have bonded with people over finding the right Personal Assistant, the pros and cons of working freelance, how to pace myself during pain flares, how to eat a healthy diet on a budget and with minimal effort – all things that, with the greatest of respect, a non-disabled person may never have to think about. I have friends who’ve taught me parenting tips; how to maintain my wheelchair; how to apply for benefits and council housing. Sometimes, after writing a disability-related blog, a friend will share it with an organisation or a new group of people, and I in turn return that favour. We’re not all happy-clappy all the time, but we do help each other, and we know we have only to ask.

It sounds terrible, but I’ve developed a sort of “death fatigue”. I’m so tired of bad news, of funerals, of grief. This thought floods my mind as I try to comprehend the loss of Selina Bonnie, who was one of Ireland’s fiercest activists. It still feels wrong to speak of her in the past tense. Not only did Selina fiercely believe in the importance of accessibility, so much so that she worked as an Access Officer in South Dublin County Council for twenty-two years, as a proud Indian-Irish woman, she embodied the meaning of intersectionality, supporting LGBTQI+ rights, as well as becoming heavily involved in campaigning for the reproductive rights of disabled people. 

In fact, she was a proud Ambassador of the (Re)al Productive Justice initiative, a project which is the brainchild of the Centre of Disability Law and Policy (CDLP) in NUI Galway. Through this project, Selina was generous in sharing the physical and attitudinal obstacles she faced in accessing fertility treatment and, subsequently, maternity care, and in doing so has made a real contribution to the advancement of reproductive rights for disabled people. I had the honour of working with her on this project, and I was floored by her boundless energy, her tireless mission to educate others on the importance of a rights-based approach, and her willingness to become vulnerable by allowing her story to be used as an educational tool.

Selina also contributed to Conversations about Activism and Change, and in recent days, I’ve felt simultaneously grateful for and awful about this. When I pitched the idea to Independent Living Movement Ireland, I stressed the importance of capturing a history of disability rights, in our own words. The unspoken insinuation was that over the years, so many stories have been left unwritten and are now lost, with many of those involved in the early days of the movement passed away. In promoting the book, Selina herself acknowledged the loss of these stories, and was adamant that we begin documenting our own history. I only hope that she was happy with how her story was captured, and that Selina’s words inspire future activists for generations to come.

The only thing left is to offer my condolences to Selina’s family and all who knew her and to offer them a virtual hug. I also extend arms around my own disabled family, who have endured too many losses over the years. May we always speak about them, may we live the lives they fought for us to have, and may we continue the fight. Selina, and indeed all the disability activists who have sadly left this world, will never be forgotten, for their activism and their friendship. 

I hate to be a burden, but…

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Anyone who knows me at all knows that the most important thing to me, apart from my family, friends and laptop, is independence.

As long as I can remember, I’ve always wanted to do things my way, to be control of my own life. I don’t ever remember my parents beating me out of the house or having to sit me down and tell me that my decisions were bad ones. And for the last twenty years, I’ve worked hard on developing this persona of being independent, capable of running my own life. Most importantly, I needed the freedom to make my own mistakes. Lord knows, I’ve made many.

When I reached my mid-teens, I realised that I never wanted to be a burden on my parents by virtue of my disability. I was raised in a country that wanted me to fit into a particular box, and when I didn’t, I was problematic. I felt that I wasn’t allowed to make mistakes, which resulted in me studying like crazy in school. By the time I was eighteen I didn’t want to be seen as a burden in any sense of the word. And I hope that I was no more a burden to my parents than my siblings

As I grow older and wiser, I learn more about the way the world works. For example, I now understand that progress isn’t linear. We as a society are in fact regressing in how we view disability. The ‘nineties marked revolution in Ireland, and people were encouraged to leave residential settings behind and embrace the big, bad world with a Personal Assistant by their side. The Independent Living Movement in Ireland brought promise of freedom and equality to disabled people. Most importantly, disabled people themselves are seen to be the experts in what they themselves need.

An important result of a disabled person having a Personal Assistance Service is that it relieves families of the ‘burden’ of ‘caring’ for their disabled relative. Language of dependence and inability becomes language of empowerment, enablement, choice.

And yet, twenty-five years on from the beginning of the Independent Living Movement, disabled people (so defined because we are disabled by society) are no closer to achieving equality in Ireland. Instead we continue to live in fear of cutbacks, in the hope that more vital services are not taken away from us. We stay quiet, hoping not to draw attention to ourselves. Our pleas and petitions to ratify the United Nations Convention of the Rights of People with Disabilities (the UNCRPD) disappear into an unknown wilderness.

In my opinion the reason why this hasn’t been ratified is not because of legislative changes that need to be addressed. It’s because we live in a country where disability has always been synonymous with charity and this enables government to continue to keep the ‘grateful cripples’ in their place. We shouldn’t need to sigh with relief when we  travel by train and there’s someone with a ramp, waiting to help us. We shouldn’t have people living in institutions whose peers are going  to Copper’s on a Thursday night. I remember the fun I had in my twenties, and the nearest I got to sitting in an institution was in the IWA’s Carmel Fallon Centre in Clontarf (even these were not sober times). Many would view my life as privileged, whereas I view it as an entitlement. One that admittedly has not come easily.

We shouldn’t need to accommodate and change our lifestyles and miss out on our true potentials, be this through education, employment or raising a family. Nor should we have to justify these choices to the HSE in order to get the proper supports we need to do these things.

Of course a single group or blogger cannot single-handedly change the current narrative of disability. We can all contribute, though. For example, the next time you throw coins absent-mindedly into a charity bucket, don’t resent disabled people or pity them; we don’t want to be objects of charity anymore, but we have been forced into this position because of government cutbacks. When you read a story about somebody with a disability in the media, look at the narrative voice: is it theirs, or someone else’s?

It seems that there are more pressing issues for the government at the moment: the US, homelessness, Brexit, the drug crisis. In the grand scheme of things, the rights of disabled people might not seem to be a priority. But if we don’t speak up, it never will be.

Because quite frankly, it’s disgusting that we live in a country that actively refuses to ensure equality for all its citizens. And none of us want to be seen as a burden.

Especially when, with a little consideration and respect, for both ourselves and our families, as well as granting us basic human rights, this burden could easily be lifted.

Grieving and healing

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‘They say time’s supposed to heal you, but I ain’t done much healing,’ are the lyrics that most struck me when I heard Adele’s new song ‘Hello’, for the first time. They certainly aptly describe how I feel about the fact that I, like so many other people across the country, didn’t manage to get tickets for her upcoming concerts in the O2 and in Belfast in spite of trying to phone Ticketmaster from 8.30am onwards on Friday 4th December (God loves a trier, right?) and reports later revealed that tickets had sold out within five minutes of going online. I won’t lie. I was gutted, but later made light of it when I offered my kidney in return for Adele tickets on Facebook (that offer’s still there, by the way. Message me here, on Facebook, on Twitter… whatever suits).

I’m just about over it now. If only real grief was so easy to deal with.

Today will be the seventh year I’ve marked mum’s birthday without her. Seven years. I’ve counted it up a few times because I still can’t believe she’s been dead for so long. She’s been dead for six and a half years. I haven’t had a proper conversation with her, touched her face or heard her voice in nearly seven years. Breaking it down like that fills me with panic, because when she first passed away I thought that I would be unable to function without her. I didn’t think I could. At the start, there were days when I would go to work in jeans and hoodies. There were other days when I couldn’t face going to work, or eating, or doing anything remotely productive. Then there were the constant thoughts. My last words to her were not ‘I love you’ or ‘Thank you’… (It annoys me that I can’t remember what they were, but I know they were nothing remarkable). If only I’d known how sick she was, I would’ve, could’ve, should’ve… What were her last thoughts, was she scared/happy/sad…? I was consumed by these pointless thoughts for nearly two years, and they nearly destroyed me. For my own wellbeing, I’ve learned to let them go.

In an attempt to ‘get my act together’, I reluctantly agreed after three months to go to the Parish Centre in Tullamore for counselling. Bless them, they were nice, but the lady I spoke to spent most of the time asking me about my disability. ‘Right, so, you feel guilty because you didn’t get to say goodbye to you mammy… here, tell me something, do you dress yourself in the morning? Aren’t you great?’ At the end of the session I lied and said that she had cured me of my grief and I didn’t need any more counselling sessions. In fairness, the bizarre experience did cheer me up for a while (purely because it was like it had happened in a parallel universe), but then I found myself facing my own feelings again, and I didn’t like that. So instead of dealing with them, or at least acknowledging that I had them, I decided it was my job to look after everyone else. (I genuinely love looking after others, don’t get me wrong). Is Laura okay? Is dad okay? Is Stephen okay? Is Alex okay? Is John Paul okay? Are the goldfish okay? I took on as much as I could in order to avoid coming face-to-face with the gut-wrenching pain that was losing my mother. This wasn’t their fault, and I was more than happy to do it, but my obsession with their well-being became a tad unhealthy to the point where I couldn’t decipher what I felt myself.

Even when it came to selling our family home, two years later, I remained steeled against falling into sentimentality. We had to sort through all of our mum’s stuff, which was the hardest thing I’ve ever done (you know, apart from losing those Adele tickets). I tried to be practical and sort everything into ‘valuable’ i.e. jewellery, handwritten books, her drawings and paintings, photos and ‘crap’ i.e. keyrings, pencilcases, receipts, empty notebooks. Us three girls did this together and Laura and Alex started reminiscing. ‘Aw, remember when mum wore this? And the day she bought that?’ I walked out on one particular occasion. I didn’t want to remember. As far as I was concerned, mum had been dead two years and grieving time was over. I had to move on with my life. I wasn’t going to get sucked into the past again. It was too painful. If I had to talk about mum in the past tense, it would mean that she was truly gone, and I wasn’t ready to acknowledge what that meant yet.

Fast-forward three years, to 2014. Much had changed. I had my own daughter. We lived in our own house. Everything was good, brilliant even, when suddenly I started to feel a grief so intense it felt like it was choking me. I’m not sure whether it was the passing of a family member in April 2014 that triggered my grief, but I felt the loss of my mother as strongly as the day she was buried. Every part of my body craved her, to see her, to hear her, to have her meet Alison. I felt lonely for her. I wanted to chat to her. This was nothing new, usually these feelings would pass as the days wore on. They didn’t this time; in fact they intensified. ‘To hell with this,’ I thought, annoyed, ‘I have a child to mind. Cop yourself on.’ But I couldn’t. Ignoring my grief wasn’t going to work, not this time. It got to a point where I could barely face getting out of bed. I forced myself to take time off work to recover and embrace these feelings. It was difficult but I learned so much about myself during this time. I learned that I tend to take on too much, that I become overwhelmed too easily, and that keeping things bottled up comes back to haunt you eventually. But equally I realised that I was stronger than I thought, that I had somehow managed to keep things together and that I would eventually regain the ability to do these things again once I took the time to take care of myself emotionally.

When I first read about the five stages of grief, I thought that the grieving process would be over once I’d entered and ‘completed’ each stage (the stages are denial, anger, bargaining, depression and acceptance). I imagined the ‘acceptance’ stage as some sort of finishing line where I would be able to think of my mother without bawling like an idiot. I thought that it would be like the ending of a Disney film – soppy and sentimental, but over. Some days I think I’ve conquered this grief, but in the last twenty-four hours I’ve heard ‘The Fairytale of New York’ twice and I’ve cried in public, twice. (Once was at an office party so hopefully my colleagues just thought I was pissed.) My mother once told me that ‘Fairytale’ was her favourite Christmas song, so every time I hear it my soul wells up with sadness that I try to suppress. Sometimes I can do it, other times I fail miserably.

I’m not an expert but from what I’ve experienced over the last six years, and from listening to others’ experiences of grief, it is a process that never ends. Although I’ve had to learn how to function without my mum, it doesn’t mean that I don’t miss her, and I still shed a tear or two at the most inappropriate times. And though it’s not convenient, it feels somehow liberating to acknowledge and embrace these feelings when they arise instead of trying to push them down all the time.

I guess what I’m trying to say is: mum, I love you. Some days I think of you more than others, and there isn’t a day that goes by that I don’t miss you. I won’t be able to contain my grief all the time, but hey, I’m only human. All I can do is try my best to make you proud every day. Happy birthday. Big hugs. I’ll have a Knickerbocker Glory in your honour (I’ll do what I have to do).

 

PS Seriously lads – those Adele tickets – all prices considered. All unnecessary organs up for grabs.

Making my own identity

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There are many things in life that shape our identity. These can be ordinary things, such as where we grow up, the education we receive and the careers we choose, or extraordinary events beyond our control, such as having a disability or illness. All of these things may define who we are, but they should not determine what we are capable of.

I have a disability which in Ireland, seems to mean that I am perceived to be an object of care. Living with Cerebral Palsy has meant that over the years, I have had to allow many medical experts into my personal space, patiently enduring their prodding and poking, their testing my muscle tones in their relentless quest to determine my abilities and disabilities.

Never in a million years did these so-called ‘experts’ expect to be lost for words when I announced that I was pregnant in June 2011. Firstly, they were intrigued and made it clear that they intended to use my pregnancy and Caesarean section as some sort of case study. Secondly, they were baffled (there are seemingly few parents with disabilities in Ireland) at how somebody, who would be traditionally perceived to be an object of care, could in turn fulfil the physical and emotional demands of a small baby.

I am a stubborn and single-minded woman, and throughout my pregnancy I arranged meetings with Primary Care Support Workers, physio- and Occupational Therapists, and even the Public Health Nurse, whose initial expectations of our parenting abilities were depressingly low. However, by the time the big day arrived on the 9th February 2012, I was confident that at least these professionals were on our side.

After my daughter Alison was born, however, it did not feel as if we were all working together. Instead, it felt like the time my husband and I had spent appeasing the ‘professionals’ had been wasted. There was concerns that I would pose a safety risk to my daughter, without substantial grounds for this. On the day that my beautiful daughter and I were meant to be discharged from hospital, I was told that the hospital would need to be satisfied that there was enough practical support at home to help me with Alison, and insinuated that I would not be allowed home until they were satisfied. They recommended the use of a wheelchair and a cloth sling for transporting Alison around the house, and I had to buy this sling before they would discharge me from hospital. Incidentally, I have never used the sling, choosing instead to push Alison around the house in a sturdy buggy. I have never let her fall.

If someone were to ask me how I define myself, I would answer an aspiring journalist, a devoted wife and a dedicated mother. However, having Alison in m y life has transformed how I perceive myself as a person. Watching her grow into a beautiful, intelligent and opinionated young lady has made me realise that a person’s identity cannot truly be defined by her appearance or by her disabilities, but instead by a willingness to continuously challenge the stereotypes forced upon them by society and to live one’s life in spite of the perceptions of others.