I take off your glasses and wipe away today’s pursuits.
Stratus make way for cumulus.
Your vision always so clouded, yet you look up to search my distracted eyes and smile into them.
I take off your shoes and remove the plastic orthotics that cage your hot, sweaty feet.
I remove your socks to change them and, momentarily, your feet are free.
Your mobility dependent on these devices. Always and forever.
I’d offer you a drink of water but you have not learnt to take it. So you play with the syringe plunger as I tube feed you, directly into your stomach. How remarkable a thing that is – life!
Nine and a half years of it.
Taking your weight, I lower you to the floor to change you; imagining the equipment we will one day be gifted, (for it will be a gift), to do this with dignity.
You smile.
Probably the same smile you gave the person who did this for you at school today.
Recently, my almost 12 year old asked me a question. Actually she asks me loads of questions. Most of her conversation starters begin with “ I’ve got a question”. This has been the case for a very long time. I’ve been told this can be a feature of her Autism; a kind of verbal tic even, but I’m not sure that’s helpful. I see no reason to medicalise or even analyse her every characteristic. And, whatever it is, I quite like it. It gives me a moment to prepare for whatever might come next. It’s rather charming too.
Her question was this:
Was it ok for her to still call me ‘Mummy”?
She is my firstborn. She has always called me Mummy. This is my name as far as she is concerned.
And she was concerned. She had presumably heard others at school refer to theirs as ‘Mum’. She was worried that she might be expected to make a change, to fit in with others, to appease them. To not stand out or appear babyish. And here is where her autism really does kick in. Changing my name…changing that familiar, constant, never previously questioned name was a step too far for her. Venturing into the Land of Unprecedented. A change that society seemed to want to force on her. I am her Mummy. She said.
And who am I to argue?
I am her Mummy. For many years, I thought I might never be anyone’s Mummy.
We live in an age where, increasingly, we are encouraged to identify as whoever we want to. This isn’t a blog post questioning or criticising that….far from it. If I could have identified as a Mummy when I was in my 30’s and held a baby in my arms, I would have done so – in a heartbeat. It was not in my control to do so. There was no child for a very long time to bestow that identity on me.
Eventually, after many years, M brought me that identity. I call it a privilege because it feels like one. Even now. Still. I will never get tired of hearing her call me Mummy. Or Mum, if she chooses to.
Recently, I’ve noticed a frustration creeping into the SEN/disability parenting world from parents who wish they weren’t continually referred to as ‘Mum’ by professionals in appointments or meetings. They want to be afforded the respect of being addressed by their actual name. I fully understand their reasons why, but I just don’t feel the same way for reasons I’ll try to explain. The word Mum or Mummy can often feel like a label. Slapped on carelessly at times. It can feel belittling to be in a room of professionals with all kinds of titles as well as letters after their names and be referred to as ‘Mum.‘ It’s sometimes as though before you’ve even entered the room or said a word, your opinion will not carry as much weight as theirs. You are just ‘Mum’ after all. I get it. I really do. I’ve felt that sense of inadequacy being bestowed upon me by those who believe they must know better. Thankfully only on rare occasions, but I have. But I’ve also had to recognise that, they do often know better than me on all kinds of levels. And, quite simply, being a ‘Mum’ to me is not belittling. It’s a title I love and cherish. A title that brings to the table as much as those with professional titles do. Often more so. The problem, I think, is not with the name or title – it’s with the understanding of who that name or title is.
Ultimately, this is just not a battle I am choosing to fight. I have no issue with others doing so, however. And so, although it has occasionally happened to me, and I’ve been labelled ‘Mum’ in a way that may not recognise what I bring, I’ve learnt to peel it off and reapply it as a badge of honour. A privilege. Undeserved. Something that I did not earn or study for; it was a gift out of the blue. But still mine to wear nonetheless, and a weighty one too.
I don’t think I will ever mind being called Mum. Or M’s Mummy, or Hazel’s Mummy. After years of heartache at not being one, why would I? I have many friends and acquaintances who would also give anything to have that name. Their own heartaches of baby-loss, losing a child or of infertility means that the name ‘Mum’ carries real pain and/or remains unattainable.
And, of my own two children, even after nine years, one of them has never called me Mummy. Not clearly, not properly. She is also Autistic but Non-Verbal. She sometimes forms a sound ‘Mmmmm’ when she sees me, or when she is poorly and needs me. That’s the closest she comes to using my name and it makes my heart sing when she does. So when others, even professionals, refer to me as Hazel’s Mummy, I have to admit to feeling nothing but pride. I can’t help it. It’s something I cannot ever take for granted. And I want her to hear my name used as often as possible. Who knows, perhaps one day she will say it back to me if she hears it spoken often enough.
If the role of being someone’s Mum came with the honour, respect and dignity it truly deserves in society (and not just on Mother’s Day) then perhaps other ‘Mums’ wouldn’t feel so belittled or put down. Perhaps others who find out they are going to be a Mum will feel supported and respected enough to continue their pregnancies instead of feeling that they have no other choice but to end them. Perhaps those ‘Mums’ who are told their unborn baby has Down syndrome will be honoured and respected by being offered all the help in the world to birth and care for their child. Instead they are often routinely steered in the opposite direction and told it’s for the best. Their role as a capable Mum called into question in those first few weeks and months of pregnancy and never even given a chance. Perhaps those who have suffered the pain of loss through miscarriage or losing a child in later years would be afforded the dignity and honour of being recognised as their Loved One’s Mum – always. And perhaps those who long to be a Mum but, for whatever reason have not been handed that title, would have their pain recognised and given all they need or want to help carry it.
Titled not labelled. Dignified not denigrated.
Mum. Mummy. Mom. Mama. Mam. Me.
Mum’s the word to be shouted from the rooftops, never silenced, never shamed.
They said I should grieve, the day you were born. Mourn the child I had imagined.They said it was ok. To be expected. Deep down I knew this not to be true.
The same experts
Gave me permission to end your life, before you were born. They said it was ok. To be expected. Deep down I knew this not to be true.
Other experts told me I had simply arrived at a different destination. The plane had been diverted to somewhere new. Deep down I knew this not to be true.
Each expert expertly dishing out a new sense of entitlement to add to my collection.
Gathering up our things, we left the hospital some weeks later. Your eyes wide with adoration and wonder, you carried in your arms only dependency and a total acceptance of all you met.
My eyes wide with adoration for you. Yet wide also with fear at how I might protect you or worse, fail you. I carried you, tightly, so tightly, in my arms. You weren’t that heavy. Yet you came weighted down. The scales of injustice, entitlement and expert opinions tipped heavily against you, but in reality, weighing me down, not you.
You were even given a different chart to follow in your little red book. The shock of the standard, sociallyacceptable, growth chart being ripped out in front of me – as a sticking plaster is ripped from a wound – will stay with me forever. You won’t be needing that one, the expert said.
And in this post neo-natal world that we now live, you and I; we are almost a decade on. We now have a collection of expertise and entitlements to fill a library. More recently, Pandemic life has brought out all kinds of new publications. Hospital appointments/therapist meetings, education meetings and more all take place via a computer screen. And, faster than you can say “lockdown”, I can spin around to my zoom backdrop of strategically placed books, and whip out the relevant chapter and verse to quote to whoever will listen. I can read them my rights. Your rights. We have lost so much this past year and ‘Someone’ needs to give it back. You are entitled. I am entitled. Now I’m the expert.
Pandemic life has, I think, brought out so much entitlement. Bookcases are groaning under the weight of expectation. Rights.
Yet never once have I seen this entitlement in you. It is a weight you steadfastly refuse to pick up let alone carry. You have no need for this burdensome thing. ‘Someone’ can keep it. Every day you tell me to put it down, though you never say a word.
You are the expert. You always have been. In humility. In being human. In welcoming another’s life, not mourning it. In asking nothing more than to be loved whilst you freely give of your own endless supply. In moving on to the next experience once one has ended. You were always destined to be here. Not somewhere else.
You are the expert In showing me how to live my own life. You have shown me that I do not have to carry the weight of entitlement for it is a false prophet. I have not given anything up, lost anything, been robbed or have need to mourn. None of it was mine to own in the first place.
With your extra chromosome – oh what a gift I have been given! Undeserved. Not entitled.
Gifted.
There was never any need for grief when you were born. Or any other weight placed on you or me since, for that matter. Your very being tips the scales of what is deserving and honourable. It turns the wisdom of the wise upside down. Weightlessly so.
What’s that phrase…. the one when a writer gets stuck for words? You know, when they can’t put pen to paper or find the words that, at other times, flow so readily….that. No, I can’t remember either.
Whatever the expression is I’ve got it. Had it. Still have it. I haven’t been able to put my thoughts down in print for a while now. Apart from one short article for the Down Syndrome Research Foundation, I’ve drawn a blank. Is that the word? No, no, but it’s something like that. Begins with a ‘b’, I think.
I last properlyblogged in July. By a lake. In a spacious and peaceful place.
A pause
A pause in a year that has drained me of words. And of so much more.
Oh, this isn’t a lament about how hard life has been in a pandemic. Truth is, I don’t have the words for that particular story. And, even if I did, I know there are so many others who could tell their own difficult story; families like mine, who’ve had their vital support networks pulled, whose tired faces and weary, worn out expressions say it all; dreading the prospect of schools ever being closed again should the need arise. Teachers who (for me) have been the unsung heroes of 2020, continually being asked to go above & beyond what is expected of the rest of us and yet often criticised from all sides. I haven’t even mentioned all the other frontline key workers. People who haven’t spent months at home baking cakes, crafting, doing DIY or bingeing on box sets. And I’m not having a pop at anyone who did those things, but, you know, honestly? Jealousy is something I’ve battled with this year!
No. They don’t need to read my story and neither does anyone else. I’ll keep my thoughts about the last eight months to myself, at least for the time being.
For now, I remain lost for words. Unable to adequately communicate my deepest or even shallowest of thoughts.
Like Hazel.
Hazel is my daughter. Hazel has Down’s syndrome. Hazel is the clearest communicator I know but her language is an unspoken one.
So, likeHazel, I think I’ll laugh out loud at whatever I find amusing, whenever I find it.
Like Hazel, I think I’ll stare intently at shiny things, bright things, beautiful spinning shimmery things.
I’ll stare at pictures I like, photographs I’ve taken, faces I see. I’ll smile at those.Like Hazel. She smiles at people. Often. Even if they don’t smile back (but they usually do).
Like Hazel, I think I’ll run my hands over surfaces or textures that I like; the pebbles we collected in a brightly coloured bucket on a Devon beach, one July day. Seaside stones that now form a kind of miniature sculpture on my patio. A shadow of their former glory as the surroundings have changed; but I still like them. They make me smile. They cause me to remember a very happy day spent by the sea after many not quite so happy days in lockdown.
Hazel smiles often. I think she remembers often too. More than most people, perhaps. I’m convinced she regularly deposits joy for herself in her memory bank and withdraws it on a daily basis.
Like Hazel, I will explore my surroundings. I shall reach out and feel silver sage leaves between my fingers or inhale the scent of fresh mint picked from my little herb garden. I say garden, it’s no more than a pot really, but as it exists in my garden that alone brings me joy.
Still, no words needed.
Hazel is nearby. She has a stick in her hand and fallen leaf litter at her feet. She will always choose the opposite textures to me. Sand over stones. Sticks over sage. And leaves. Leaves are her favourite. Especially if they are falling around her. I know she loves them. Once upon a time she would say so.
“Leeeeeaaves“
As I hold them above her head and let them fall.
Her face lights up, arms stiffen and hands wave.
“Leeeeeaaaves“
Now, there are no words. She has lost them. Autism, or something, has stolen them. A gradual lockdown, of sorts, in a part of her brain. Not of her making or choosing. It came without warning. No one can tell me if or when the restrictions will be lifted. It’s hard to find the words to describe how I feel about this too. There are some losses, some experiences, that cannot be put into words because words are not always what a grieving soul needs to hear.
Hazel accepts what is with a peacefulness that passes all understanding. She is truly a mystery. Marvellously so.
She still loves leaves and the leaves still fall as they’ve always done. Hazel is thrilled by that, just as she’s always been.
If Hazel feels any sense of loss, she does not show it.
Somehow, the words are not needed. At least not for now and not in these moments. For now, I will take a leaf out of her book. Literally. I’ll hold it the way she holds it. I’ll feel it, turning it over and over in my hand. I’ll marvel at it. I’ll shout with glee as the leaves fall around me.
Messy and colourful; swirling noisily around me.
Like Hazel does. Like Hazel is.
She was born in the Autumn. It was messy back then too. Hard. The Great British Bake Off was on the television screen in the NICU restroom, in only its second season. Strange, the things you remember. And I remember there were lots of leaves. A carpet of them right outside the hospital entrance. Such a beautiful swirling mess.
I’ve been spending a few days in a relaxing and isolated place, booked pre-pandemic, overlooking some fishing lakes. As I write I can see three, sometimes four, herons gliding gracefully over head. Such extraordinary looking creatures in flight. And, once on the bank they adopt sentry status, scanning the lake for fish whilst giving a masterclass in superiority. Until they call out that is. A sound akin to finger nails on a blackboard. Beautifully harsh. Something about it grates and leaves the listener uncomfortable. It jars. Profound beauty and harshness held in tension. The herons take flight and with them my breath.
My daughter’s life, her whole existence, is profoundly beautiful yet also harsh. We live, she lives, with the tension of these truths. And, as a consequence, she takes my breath away daily.
Many, even sometimes those in our own community, see the disabled life as something to be avoided. I know I did when Hazel was born. I’ve written about it before..how I hoped she would have some kind of Down syndrome light version of the condition. Not too bad, manageable, successful even. There are no limits on people with Down syndrome is how the new mantra goes. They can learn to read and write, go to school, get a job, play sports, live independently, be models, actors, politicians, get married and so on.. All true and all good, I don’t deny it for a moment. They often do.
So don’t worry, we tell new and expectant parents; It’s only an extra chromosome. Keep calm.
I disagree.
It is not only an extra chromosome.
It is a profoundly beautiful life.
Not because of any achievement or indeed any similarity to a life without an extra chromosome. It’s beauty is in its existence. It should not need to be championed or given a reason to be accepted. It is already beautiful, profoundly so.
My attempts, early on in Hazel’s life, to disguise her ‘disabledness’ (which probably isn’t even a word) thankfully and spectacularly failed. Hazel comes with an array of visual reminders of it; a feeding tube for starters, then there’s the equipment, hoists, stairlift, adaptive chair, a hospital style bed, not forgetting bifocals for very poor sight and also soon to have hearing aids. Hazel is non verbal and makes all kinds of noises that loudly announce her presence to the world wherever we are. There is no disguising Hazel! Oh, and she laughs. A lot.
Hazel has also been learning to walk. At almost 9 years old she can now walk around the house or familiar places with gusto. Stomping and lurching as she explores familiar spaces now revealing previously hidden vistas and treasures. Her achievements are tremendous and we celebrate them daily.
And yet. Remove her plastic clunky orthotic devices and her world shrinks once more, her weakened frail ankles collapse and she falls to her knees in a single step. Those unattractive plastic devices are, to me, of profound beauty and huge importance. They are enabling her to discover new and exciting things for herself, though her wheelchair is never far away.
Wheelchairs. Feared and avoided by many parents of children with Down’s syndrome, particularly in the early years. I know this..I was one of them. So much so I opted for a buggy that looked somehow more er, um… acceptable. I thought that having a wheelchair made her look more disabled. Well. Yes I suppose it does. But that is only a negative if you also hold the view that being disabled is something to be shunned. It depends on your assumptions about disability. My assumptions were so very wrong. I mean, it’s fine if you don’t need one, but it’s also fine if you do.
Is Hazel worse off because she uses a wheelchair? Is she worse off because she wears orthotics? Or is she discovering joy every single day in new places because she has them? Is she to be pitied because she is shortly to be wearing hearing aids or will people share her joy as the sounds we take for granted enter her world for the first time? And if they don’t work, if she doesn’t take to them for whatever reason, will that be seen as failure or will she be allowed to live her life in the way she feels most comfortable?
To me, her disabilities just make me more determined to travel further into her world and see it though her eyes and ears. I desire to make her pathways less fraught with obstacles and trip hazards. Where those obstacles cannot be removed I want to help her find another way over the terrain. This is what Hazel needs from our community, from those who care for her, from medical professionals, teachers, and especially Governments. Policies, medical research, social and educational opportunities that will enable her to really live her best life; whatever support systems she needs or we may need as parents to help her. What she does not need are assumptions that her life is not worth living. That she is failing or in need of pity because she looks more disabled than another. That her life is less. Neither do we need assumptions that, as her parents, we can do it all, that we don’t need a helping hand from time to time. Caring is a very precious and undervalued thing indeed. Assumptions can be devastating, checking them and challenging them can bring change to entire communities.
A friend of mine often says to diminish one of us is to diminish us all.
Just this week I was reminded of the heart-rending story of a disabled community in Japan- the Sagimahara Institute – where, on 26 July 2016, a man attacked and killed nineteen residents and injured twenty six; thirteen of them severely. His intention was to ‘obliterate’ hundreds of people who he deemed unworthy of life. A drain on their carers. He believed he was doing society a service. The tragedy became Japan’s worst mass killing since the Second World War.
An extraordinary video called Sachiko’s Story Nineteen Paper Cranes tells the story so movingly and asks the question, “Why does the world assume that a disabled life is not profoundly beautiful?”
I will not spoil the story – do watch,you’ll be glad you did – but what followed in response to the killings was truly beautiful.
Landscapes can be harsh environments to live in and journey through but at the same time profoundly beautiful. We need to adapt to their contours, their peaks and their valleys. Not circumvent them or leave them off the map. Or, worse still, destroy them altogether.
This is my daughter’s disabled life and it will always be profoundly beautiful.
I know why the caged bird sings is a book that profoundly moved me when I first read it years ago. The author, Maya Angelou, vividly recounts her childhood against a backdrop of racism, discrimination and poverty. A book filled with moments of joyous discovery weaved into and through a history lesson on brutality.
I’ve been re-reading it again recently. I say recently, but it’s taken me over a year and I still haven’t finished. Not for want of trying – I’ve quite an impressive stack of literature next to my bed; but for the fact that the moment my head hits the pillow I’m gone.
As a parent and carer to two children with a range of both complex medical needs and disabilities between them; Autism, Down’s syndrome, Dyspraxia (let’s just say the list of conditions at the top of our hospital letters takes up most of the page) – reading for leisure, in fact most kinds of leisure tend to take a back seat. Sleep is more of a priority as it can often be in short supply. Tube feeding my child every night tends to cut across most socially acceptable leisure pursuits at the best of times.
(She’s worth it of course, of that I have no doubts. They both are).
Therefore, a trip to the hairdressers every eight or nine weeks or so is something I guard jealously. A self-indulgent hour and a half that serves also as an opportunity to read.
Maya Angelou comes with me. She sits beside me in the salon. She laughs in the mirror and tells me her tales. That laugh. From her belly. Gets me every time.
My hairdresser is too polite to mention that I am still reading the same book as last time, and the time before and the time before that.
Last week, chapter twenty five was waiting for me. Three quarters of the way through. I looked forward to Friday and my appointment.
Chapter twenty five is still waiting for me. Like everyone else in the nation, no, the world pretty much….a haircut now has to wait. Appointment cancelled. Salon closed. It’s on hold.
Everything is on hold. In some way and to some degree.
And, for families like mine, it’s vital support systems that have been put on hold. Systems we have fought for, prayed for, cried for, pleaded for. Systems we have celebrated gaining access to: education, healthcare, social activities for the disabled, respite for carers and much more. Support systems gifted to us by the kindness and dedication of numerous volunteers. Families, like mine, suddenly find themselves without these vital networks. More than that, they watch in disbelief as people panic buy medical supplies such as gloves and clinical wipes – items we rely on for daily life, regardless of a pandemic, are now in short supply. Respite centres close, lifelines are cut off. And though the world moves online; excellent programmes and meetings are created and made available to those who now have lots of time on their hands, these are much lessaccessible to families like mine. These families wonder how on earth they will cope. I wonder that too.
Then I remember Maya.
I remember thankfulness. I remember beauty in hard places. I remember to live one day at a time. I remember to not worry about tomorrow for tomorrow will have enough worries of its own.
I look at my daughter who has Down’s syndrome. She is non-verbal, yet she tells me all I need to hear, loud and clear.
She tells me that there is joy to be found in the waiting, in the confusion and in the uncertainty. In the now.
She loves her life. Her school, the farm she visits, the lambs she strokes, her home, the park, the shops, her beads and ribbons, Granny & Grandad’s house….
She has no idea why she cannot go much beyond her back garden at the moment. She is confused. Sometimes she is upset. Yet she searches out joy and brings it to me in some small, gigantic way every day. Today it was in a belly laugh. A bit like Maya’s. From deep within yet at what? I have no idea.
Hardship is, well, hard, yet it does not have to be devoid of joy.
Our lives are not really on hold, even on the hardest of days when there is no respite to be found. Even then, I have found there are always reasons to be thankful, always opportunities for joy. My daughter with Down’s syndrome eloquently tells me so.
And I remember Maya. And I think I might know, a least a little bit, why the caged bird sings.
When my daughter was born with Down’s syndrome, I am ashamed to admit that, at first, I wanted to hide her away. I tried to dress her in a way that people wouldn’t notice certain features pertaining to her condition; her slightly thickened neck for instance. A well placed chunky knit cardigan dealt with that! As we struggled to come to terms with her diagnosis, though we loved her with every fibre of our beings, my husband and I spoke privately of a hope that she would have some sort of ‘Down’s syndrome light’ variety. A not too noticeable version of the condition that would be acceptable to others and also, it has to be said, to us. As for thinking about other people, especially older people with the condition, this was not something we wanted to contemplate. In our eyes, they were to be avoided. Feared even. In fact, looking at anyone else with the condition was hard to do back then, though I did try to notice the ones I deemed acceptable – just about. All in the hope that my child would be like them. Not too bad.
Our eyes were focused, not on our child, but on our prejudice.
Eight years later and laser surgery has removed that prejudice and cleared our vision. Thankfully. Or was it heart surgery? Either way it is gone.
This week, a film made about a man with Down’s syndrome, Jamie and his brother and family, appeared on social media. Radio 4 even did a feature on it. You can watch it here if you like. There was quite a reaction to it in our community. Some, like me, loved it, others including people whose lives I hugely respect, didn’t. Among other important things, they worried about how Down’s syndrome was portrayed in the film, especially to new parents or parents to be who might see it. It was absolutely not their experience and it appeared outdated, a backward step even. Some found it sad.
As the dust has settled I can see why they felt like that. I just don’t agree.
A wise person said to me that the film was like a mirror. Reflecting back so much of our own fears and, I think, our hopes too. Well I’ve been reflecting in that mirror since I saw the film and my wise friend is correct.
I’ve spent the last seven or eight years telling people, sometimes through my blog but in other ways too, that there’s nothing to be afraid of in having a child with Down’s syndrome. I’ve told them about all the things children and adults with Down’s syndrome can do now, achieve, be, aspire to; compared to in the past. And this remains all true and valid. I love how our community celebrates this change in all kinds of ways as more and more is understood about the capabilities and learning potential of people with Down’s syndrome. I hope we never stop making this known where it needs to be known. But it is not the whole picture.
So here’s my next confession…
Through my writing, I’ve told people these things, which I wholeheartedly believe and support, against the backdrop of knowing that my daughter is not like most children with Down’s syndrome. At least not most of the ones I know. She is more like Jamie. She sits how Jamie sits. She sounds how Jamie sounds. She has fewer words than Jamie has, yet she was not born forty years ago in some dark, uneducated era where early intervention for people with Down’s syndrome was largely unheard of.
No. She was born just over eight years ago in 2011. She’s had far more support and intervention in her young life than Jamie would have had in his – at least outside of his loving family – oh I loved them in the film too! Their faults, their failings but mostly their love for Jamie and each other shone through.
Could we be doing more to help her development? Always. Is she still failed by healthcare systems and Government policies towards disabled people? Yes, frequently so. But that’s not the point here.
What’s true is that she is more like Jamie than most other children I have so far met who have Down’s syndrome. That is not to diminish them or their families in any way; I hope I no-one feels that’s the case for it’s not my intention. It is simply that our experience is one that is far closer to that of Jamie’s family. His face, his life, his behaviours and reactions we recognise in our own daughter. His family in ours. Even in the words they used to speak to or about him. And our lives are not some tragedy to be hidden from view.
Unconventional? Certainly. Challenging? Definitely. More so than I have ever admitted in my writing and that, with hindsight, has perhaps not always been helpful. Even as I write, we should be elsewhere, joining in with an event that most people have no problem attending, even most of those with a child with Down’s syndrome. We are not most people.
Neither are we always looking for lots of inclusive activities to take her to. Though it’s sad there are not more. Because more often than not, even the inclusive ones are unsuitable for her. That will only change when her ‘face’ becomes an acceptable ‘face’, a face that is accepted as it is now, with all its funny ways and behaviours, noises and responses. It will change when her way of communication, as it is now, not as it might or could be, is accepted and welcomed, if not always understood, by everyone, not just a few people. Some call it her level of communication but that, to me implies critique. What I want most is for her always to be accepted, welcomed and wanted as sheis. Not because of any intervention or achievement that might somehow make her a more positive advert for her community, however helpful it may be to her or anyone else. I think most parents want that too.
Hazel brings something different to our family. I saw it in Jamie’s family too. She brings people together, to surround her and each other. She brings a kind of healing, she brings mystery. She brings dependency.
Ah, but we need our children to grow up to be independent don’t we? That is, after all, one of the aims of most parents – to help their child grow up to be fully independent and make their own way in the world.
And yet Hazel has taught me to prefer the idea of a society where we grow more dependent on each other, not less.
The reality is far from that though and I think it’s one of the reasons people reacted with concern to the film. I get that.
I don’t think it’s wrong to hope and strive for a society where dependence on each other is highly valued. If our society was like that, then many of the fears that keep parents of children/adults with Down’s syndrome or other disabilities awake at night would not exist. We could be confident that our loved ones are going to be valued, cared and wanted for who they are, regardless of their level of dependency and regardless of whether we are here to care for them or not.
A mirror should always reflect the truth and perhaps I am guilty of distorting the image of our lives in order to gain the acceptance of parents who might be considering terminating the life of their unborn baby, following a diagnosis of Down’s syndrome. Yet the truth still is that all people with Down’s syndrome, whether they are like Hazel, Jamie or whoever, have beautiful faces and can live beautiful lives, whatever their challenges. Their stories, our stories, all deserve to be told and it is a privilege to be part of a community that is dependent on each other.
Let’s not hide any one of us away.
Adam Pearson A British Actor and Campaigner and who is also diagnosed with a genetic condition said recently “The way to eliminate any kind of misconception or prejudice is to increase the exposure”
Show me your face and I will show you mine.
“Fear makes strangers of people who would be friends.” Shirley Maclaine
By rights my child should be talking by now. She’s 8 years old you see.
By rights she should be running around; climbing, jumping, falling and scraping her knee.
By rights these are skills that are just delayed.
She’ll get there in her own time, don’t fret.
Her extra chromosome is championed by those of us in the know. Though I think even we get it wrong by the examples we hold up for inspiration:
Actors, dancers, TV stars, athletes, some are even politicians. Look how much these people with their extra chromosome are contributing!
As if they need a reason to be here.
Nothing to fear they tell me; she’ll make her own way in this world like them.
By rights.
By rights my child shouldn’t even be here. Such is the overwhelming view of the world to people like her.
By rights I could have deleted her life. I should have done so, according to some and by rights for which others have fought.
My choice? My right not to do that?
Of course! But you’re on your own.
Stop. Let’s go back to the beginning, where it all seems to go so wrong.
So very wrong and not at all about rights.
My child’s very existence is a cry to be loved.
She is not to be measured on a scale.
Scales of achievement that judge her, proclaiming her worth in how much she can bring to the table.
By rights she may never measure up to societal scrutiny, or even that of her own community. Who knows when or if she will talk or run?
Truthfully, she is not here by rights – for society says she has none.
She is here by love.
It is love she is attracted to. Not achieving or being the best. She has no desire to acquire more knowledge or power or fame, or the rest.
She has a desire, a need to be loved. Let’s face it, don’t we all?
She is not here by rights, she is here as a gift.
A priceless gift of discovering that to love is not always easy, but is of greater value than anything else.
Tell me…. what gift was ever a right?
“Every child, every person needs to know that they are a source of joy; every child, every person, needs to be celebrated. Only when all of our weaknesses are accepted as part of our humanity can our negative, broken self-images be transformed.”
―Jean Vanier, Becoming Human
Sunday evenings, at least here in the U.K., may be sometimes spent watching the most extraordinary wildlife documentaries on television. Against backdrops of breathtaking scenery, coupled with state of the art photography and filming, you can be taken on amazing journeys, encountering incredible creatures and habitats. Microscopic technology takes the viewer from the comfort of their armchair on a voyage of infinite discovery. Ordinary grains of sand, for instance, taken from the beach and magnified to reveal a dazzling Aladdin’s cave effect. Stunning jewel like precision and design. Each one different, unique, whether you believe them to be created or evolved. Redefining the meaning of a close up. Jaw dropping photography.
The hardest of hearts can be moved to tears at the sight of once magnificent sea creatures now suffering a terrible injustice. Suffering because of the shameful amount of plastic we humans have disposed of in their environment. Whole movements that seek to reverse this horror have been born out of witnessing such atrocities. We care, they say. Though we didn’t used to, we do now.
Such is the power of technology; it advances our understanding of the world around us and helps us set to rights the wrongs we have committed. Technological advances being used for the good of the environment and, ultimately, all its inhabitants.
Yet it troubles me greatly that this same technology that allows us to travel further than we’ve ever travelled before and see in micro detail that which was previously unknown is so very, very limited. A technology that sees everything yet at the same time sees nothing.
Screening tests that are more advanced than ever before can now detect the possibility of Down’s syndrome in the unborn earlier than ever. (And, worryingly, it’s not always pointed out that the results can be wrong). Technology is so advanced that it won’t be long before all kinds of other genetic conditions are identified in utero. Many believe this to be a good thing. Technological advances supposedly being used for the good of society. Yet the ‘good’ these particular screening tests do is questionable, more often than not at the expense of another and largely unchallenged from an ethical standpoint.
As I write this blog, my daughter, who has Down’s syndrome is clutching a leaf.
It has held her attention for some time now. She marvels at it. Holds it between her fingers and spins it. She does not speak words, yet her voice echoes the joy she experiences from examining the leaf in her tiny grasp.
I hear her.
I hear too her newly acquired footsteps around the house. A sound that still makes my heart sing. Each footstep fought for over the last eight years. Footsteps that we wondered if we’d ever hear. Though it wouldn’t have mattered if we didn’t …not greatly anyway. We do not measure her life by whether she can walk or talk. We do not measure her life at all really. How could we? It’s impossible to measure the joy she brings us each day, even if we tried. She has redefined the meaning of close up as she enables us to see so much more of life than we ever realised was there.
Just like it’s impossible to detect much more than one extra chromosome at a screening test. A truly advanced technological breakthrough that apparently tells you so much yet actually takes you further away from the reality of what or who is really there, beneath the surface. Waiting to be discovered, waiting to be loved, waiting to be nurtured, waiting to be cared for. And yes, I still count it an absolute privilege to care for, marvel at and learn from another human being, however many challenges there may be, extra chromosome or not. Indeed, parents, advocates and of course people with Down’s syndrome themselves are increasingly fed up of being told to bow at the altar of personal choice when it comes to prenatal screening. As if a person with Down’s syndrome were just another option at the Fresher’s Fayre of parenting options. Discrimination has never been so cleverly disguised.
I wish that in every heart that is rightly moved by the plight of the cormorant trapped in plastic or the dolphins tangled in discarded nets, there would be found the same outrage towards the plight of people with Down’s syndrome. An Extinction rebellion – though of course Down’s syndrome itself can never be made extinct even though worldwide efforts to prevent live births are abhorrently successful.
A people group so targeted by technology before they are even born. Deemed unworthy of protection yet feared enough for detection.
A lens that can detect them yet does nothing to protect them.
A lens that sees everything and nothing.
It appears to me that the lens is facing the wrong way.
For more information about what it’s really like to bring up a child with Down’s syndrome go to Positive About Down’s Syndrome
My daughter did, just like she did yesterday and the day before that, and the day before that too.
Did someone tell her a joke? There’s no one else in her room. Did she remember something funny she saw the day before? Perhaps. Not sure.
Maybe she was thinking about the bus journey to school and how bumpy it feels as she rides, strapped into her wheelchair. Or maybe she was thinking about the funny songs the Music Man sang to her when he came to her class; especially that one about the pirates- that’s funny. Or maybe it was the sheep on the farm she visits, or the goat that jumped on the trampoline with her one day. Whoever heard of such a thing?! Maybe it’s the strange plaster casts on both her legs that she currently has to wear. They do look kind of funny I suppose.
It’s no good asking her, she cannot give an answer. Though she is nearly eight years old, she has no words you see. And right now, only laughter.
Sometimes she is sad. Sometimes she is grumpy. Sometimes she is in pain. Sometimes she is tired.
Just like you, just like me.
A range of emotions.
But because she is non verbal she has to express them differently.
Unlike you, unlike me.
But laughter, chuckling, giggling, rib tickling, snort inducing, full on raucous belly laughter is very often her first emotion of the day. I’d love to know what makes her laugh.
Did you wake up laughing today? Or did your thoughts turn immediately to worries?
Fears of the future perhaps, or just concerns about the day ahead. So much to do, so much to accomplish. What ifs and what abouts firing off in all directions in your head before your feet have even hit the floor.
My daughter woke up laughing.
My daughter has Down’s syndrome. Many people think her life is not worth living. They think she would be better off not being born. They called her life a ‘risk’. They said she is abnormal. They spoke as if giving birth to her was some great tragedy.
Downright Joy 