Today I cleaned the blinds, slat by slat. Wiping away layers of dust, marked with fingerprints that have gathered stealthily. Unnoticed. Hidden until they were not.
I noticed them first thing. Shafts of early morning sunlight exposing eachtinyparticle. Each mark, each imprint. Light has a tendency to do that; expose things.
I noticed one of the blinds was broken. Not functioning as it should, no matter how much I tugged or pushed or pulled. How long has this blind been like this? I’m not sure if anyone else has noticed, perhaps just me.
Anyway, I think I’ve got away with it. A broken blind can wait, there are other jobs ahead in the queue. It’s not something I am able to fix, I don’t have the resources, time or skill. But at least cleaning it today helps take my mind off the fact that I have been unable to fix you.
You and I are good at waiting; long overdue appointments they said you badly need. Another day, another week or month, even year; I lose track as the dust continues to settle. For the present, I’ll find something else in our lives to polish, clean or mend. As it remains one of the greatest of honours in my life to do everything I can for you.
I began by naming this poem “Broken” but then I remembered: I’ve pitched my tent in the land of hope.
A silent letter goes before you, shaping your reason, your purpose, your meaning, as you enter.
Unheard.
A shaft of dust-filled light through a blackened open doorway; bathing her and me in so much warmth, and reaching only just beyond this moment. This heaviest of doors has only ever opened so far and I am grateful for all it never reveals. Today is enough.
I’ve tried to push the door open further. Take it off even. What lies beyond its hinges? Is it what I imagine? What I fear? I wonder if the words she once began to form are beyond it, waiting to return. Or are they lost forever? Silenced. Perhaps.
I don’t even know what it is I hope for anymore, let alone what I can admit to fear. I dare not go there. No matter, my arms have long since grown heavy summoning a strength that I do not possess for a day that I do not own. Today is enough.
I sink to my knees beside her hospital style bed. Her room a contented mix of teddies and tubes, socks and syringes. Devices and daydreams.
I begin where I began yesterday, and the day before that, and all the days before that. She dangles her damaged ankles and calloused, misshapen feet over the side of the bed and waits expectantly for me to put on her socks. Followed by her hard, unforgiving plastic orthotic moulds, followed by her clumsy, heavy leather boots. I hear every word she does not say. Her sounds reverberate a silent and mysterious speech. Her thoughts so profound she dare not speak them to those who have no appreciation for such mystery.
How can something so irreparably damaged be so beautiful? How can one be so silent, yet so noisy?
I have learnt that what is damaged should not always be thrown away.
I adore her damaged feet. I adore her sounds. I adore her.
I sink into the depths of this holiest of spaces, this silent, unheard place where love dwells and discovery awaits. Where deep calls to deep. Where tectonic plates of pain and despair seismically shift along plates of joy and hope. The cracks formed long ago, and because of them, not in spite of them, I am swept up by this tsunami of love I now have for her. Tsunami with a silent T.
I catch my breath that I am here at all, and so is she.
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.
Reward for anyone who has information on her whereabouts.
I wanted to give my first child the name Hope – or at least her middle name. I didn’t in the end. Husband said at the time that the name reminded him of a hospital; a kind of Mercy Mission of Hope reminiscent of his former Catholic upbringing. So we opted for something else.
(Apologies to anyone reading who is called Hope by the way – I still think it’s a lovely name.)
Hope is the reason I write this blog. I may not possess many academic qualifications in life but I do possess hope. And I think I am qualified to speak about it.
Hope is what I have been given over and over throughout my life, in so many situations. Even when there seemingly was no hope. I was given it. I didn’t create it. I didn’t fabricate it. I didn’t conjure it up. It was given to me and I took it. But I did look for it. More than I looked for anything else.
I was given it when I thought I’d never be able to have children.
I was given it when I was hours from death in Intensive Care as all my major organs were shutting down. Intensive Care is a place that, understandably, generates fear for many right now. For me, it generates hope more so.
I was given it when my daughter Hazel was born with Down’s syndrome. My GP gave it to me. He told me what I needed to hear over and above the voices of doom that had told me what a terrible thing it is to have a baby with Down’s syndrome. He gave me hope that life, although never the same, would still be worth living…and not just at some point in the future when everything was back to normal. It would never be back to normal. But it could be, would be worth living.
Hope was given to me when Hazel was so very seriously ill and we did not know if she would survive.
And here’s the thing. The hope I had was not reassurance that she would be ok, that I would be ok, or that we would be ok. We weren’t ok. Neither was she. She was very, very ill. Dangerously so, and I had been too.
The hope I was given, was that through it all, somehow, fear would not have the final word. Fear of what was happening would not define how we lived, how we responded to each other or to the situation we found ourselves in. Hope meant that the fear we were so readily inclined to feel would not have the final say in our thoughts and uncertainties we carried about the future. We knew things could get worse, we did not live in some kind of false hope that all would be well. It might not be. But life would have hope. Hope is about the here and now as much as it is about the future. If anything it matters more, here and now, than in 2, 3 or 10 or 20 years down the line. Fear is to be expected but hope is vital. Now.
And Hope is missing.
Right now, in the middle of a pandemic, hope is being looked for but it is largely being concealed by fear. Fear seems to choke the life out of hope. Fear grips like nothing else can. Fear is spread whether through word of mouth, news images, misinformation, or simply because there is danger and we are afraid. Fear is the natural response. There is real danger. People are dying and families are hurting; I do not seek to minimise anyone’s pain or suffering for a moment.
But fear does not have to be the only response.
The hope I have is that my life and the lives of those I know and love, however long or short, will not be dominated by fear. It’s the life I see my daughter who has Down’s syndrome living too. She lives a life of daily acceptance. It is a life that is permeated by hope, not fear. Yet she has had more than her fair share of difficult experiences. Still she does not fear the way most people do.
Hope has been given to me out of love. When I was so ill it was from people who lovingly did their job and saved my life. People who cared and people who knew that my fears, however well founded, were not the only thing at play. My faith too plays a part. A God given hope that can confront fear even when facing the threat of death itself – which I have – of my own and that of my children both inside the womb and out.
And perfect love drives out fear – a simple, yet profound bible verse I choose to take hold of and speak out over my own life, my own fears.
It is vital that people are given hope. Not false hope, but real hope.
Hope doesn’t necessarily mean a way out of something, such as a vaccine,(important though that is) or even a way through something. Hope is not about believing in Unicorns. Hope means being able to live in the moment without being paralysed by fear of what may or may not happen. Hope means being able to carry on when all around you are telling you to do or live otherwise. I’m not talking of being reckless here or promoting selfish behaviours. I’m just saying that there is another story to be told, another truth to take hold of. Fears may come to pass, they may not.
Hope speaks of living free from those fears.
Parents who find out the baby they are expecting may have Down’s syndrome are rarely offered hope. They are offered lots of other things – many of them good and well intentioned. Information they receive is improving. It should no longer be outdated (though often is), due to the efforts of many in our own Down’s syndrome community. Yet even we’ve convinced ourselves that is all they need. The right information in order to make the right decision for them. Yet how many women go to their prenatal scans simply looking for information? Most are also looking for hope too. If, as most parents of children with Down’s syndrome will tell you, life is still worth living and full of hope, then why is that not the first thing women are told when they find out their baby might have Down’s syndrome? Is it because fear has a stranglehold on hope? Fear has the final word. Hope is not even allowed to enter the waiting room, let alone the discussion in the scan room.
In times of crisis, personal or global, hope is needed more than ever. Rainbows have appeared in windows and balconies around the world. People are looking for hope in a world gripped by fear. Rainbows are real even if unicorns aren’t.
Perfect love drives out fear. People with Down’s syndrome are, in my experience, people who love unconditionally – often more than most. And, as a consequence, fear is driven out. It has no place in their lives in the same way that it so often has in others.
My daughter Hazel has Down’s syndrome. She brings hope as well as joy to this world. And hope is needed more than ever.
People with Down’s syndrome are needed more than ever.
I love to be surrounded by beautiful things. Not necessarily expensive things – though I like them too. Just beautiful things. Recent treasures I’ve acquired are hanging in my redecorated living room; a picture of a woman gazing out of a window, a bird cage on the table behind her. Anything with a bird cage in it is beautiful to me, there’s something deeply enchanting about them. Then there’s my framed Frida Kahlo staring strikingly out from the chimney breast. These are my latest beautiful things.
My children love treasure seeking too. Over the years my eldest has kept an assortment of valued bits and pieces she has found or been given. A diverse and eclectic mix of fascinations. Conkers happily collected on the way home from school one day, actual fairy dust in a tiny bottle, confetti from a family wedding, bits of paper from friends with “bff” scrawled on them in childish form, usually under a hand drawn princess or something fluffy and adorable.
I remember the time, as a toddler, she literally held onto one particular treasure for days. Ignoring the vast array of toys she had successfully acquired my daughter chose, as her most favoured possession, an empty margarine tub. She carried the margarine tub with her wherever she went and at all times. Her limited language skills at that point meant I never found out why the tub found such favour in her eyes. Its worth was not apparent to me, to begin with, but her love for it was. The margarine tub became important to us all.
Her younger sister also finds treasures of her own. A discarded ribbon from an unwrapped gift will please her often more than the gift itself. A chiffon scarf that can be floated in the air will delight her if she discovers one lying around. And as for autumn leaves cascading down around her on a windy day; well that’s her idea of heaven. Heart singing moments for her and for those who care for her.
Treasure for the soul. Like balm.
Where your treasure is, there will your heart be also….a biblical truth which, whether you have a faith or not is hard to deny.
Most recently, my eldest acquired a new and precious treasure which she now keeps in a glass jar. A fragment of Myrrh, another kind of balm, given to her as an Epiphany reminder by a man who has spent his life treasure hunting in the Middle East. Canon Andrew White, often referred to as the Vicar of Baghdad; a man who continually seeks out the good in those often vehemently opposed to each other, to bring reconciliation and facilitate peace where only conflict exists. A man who knows where real treasure is to be found. Found among people the world often dismisses, often fears, and often shuns.
My wealth has increased beyond measure since my daughter was born with an extra chromosome seven years ago. My Epiphany.
Hazel has Down’s syndrome. A condition, a group of people, so easily disregarded, yet who, before they are even born, are sought out more aggressively than ever through modern screening methods. Feared and shunned by a society that cannot see the treasure that is within.
Society…they are the ones whose pockets are empty. They have not found this treasure.
Virtually every day for the last month I have listened to the same song.
That’s not surprising you say…over Christmas the shops are filled with Slade or Paul McCartney endlessly singing the same festive tunes.
Not in our house.
Every day, almost without fail, Hazel, who is largely non-verbal and has very little language as yet, has been singing.
The same song. Over and over.
Happy Birthday
Actually, it’s goes something like this:
“Appy budday dooo yoooooo
Appy budday dooo yooooooooooo
Appy budday dooo Ayzool.
Appy budday dooo yooooooo.”
Every time the lights on the Christmas tree were switched on, we heard it.
Every time a candle was lit to freshen up the house after a meal, we heard it.
Every time a visitor called by to offer festive greetings, we heard it.
Even in the Doctor’s tinsel clad waiting room, poorly and struggling with yet another infection, we heard it.
Hazel has no idea what Christmas is all about. Not really. That will come in time. She did not write a list for Santa, or even hang up her own stocking. She had little interest in opening presents – finding it all too overwhelming, instead shuffling off to find a quieter space. Not even a morsel of Christmas fare passed her lips, as she happily ignored all food yet again, content to let a tube keep her alive.
But she knew it was special and that was enough for me.
Like her birthday, last September. Special. Not that she understands birthdays either. But she remembers being celebrated with a special song. Hazel understands being special. Not in the way some people use the term ‘special’ either – for all children are special. With or without an extra chromosome.
No.
She is special because she is Hazel. She is planned and purposed. She is loved and wanted – but even if she weren’t (God forbid) she would still be special. She is special because she is a human being, made in God’s image. She is special because.
Last year I, along with many others spent time and energy campaigning for the unborn – in particular those who are found pre-natally to have Down’s syndrome. We argued that their lives are worth living. That their lives are as worthy as yours or mine.
I would be dishonest if I didn’t admit that, at times I felt crushed by the campaign. I’m sure others did too. In reality, it was the attitudes I came up against that brought me low on more than one occasion. Imagine having to justify your child’s existence – I did when a journalist asked me to explain why it was better that Hazel was alive and not an abortion statistic.
I have found it difficult to even write about these things since the campaign reached its height – around the time of Sally Phillip’s excellent documentary A World Without Down’s last October.
I’ve wanted to hide away from the reality of living in a world that is so hostile to people with Down’s syndrome. I have felt it personally. I have felt the hostility and the hatred. I have felt it for my little girl. I have cried many tears for Hazel and the discrimination she faces from those who think our society would be better off without people like her.
We’ve kept our decorations up a little longer than usual – for Hazel. She loves them so much. And, as she sang Happy Birthday to herself this afternoon, she reached me.
Again.
So at the start of a New Year I want to celebrate my little girl with an extra chromosome.
She celebrates herself every day after all! So why shouldn’t I?
Why shouldn’t the world celebrate with her and all those like her? I will not hide away and stick to damage limitation. I will stand up and fight for her and for all those who have no voice. When she sings the one song she knows so well, I will not correct her and tell her it’s not her birthday (even though it isn’t!) Instead, I will sing it with her, as often as she wants to.
Happy birthday Hazel – I will celebrate your very existence and that of your equally special sister each and every day!
Afraid. What does the future hold? Will my children be safe?
These are questions I’ve noticed many parents are asking on social media lately. So much to be afraid of. Acts of terror creep ever closer to home. Paris. Long awaited trips to Disneyland being viewed rather more anxiously. Life just got a whole lot more scary.
Fears.
And yet for the parent of a child with additional needs these fears are already known only too well. They have loomed large since the day they were given a diagnosis.
Afraid. What does the future hold? Will my child be safe?
Like me, they stare over their sleeping child and ponder these things. Watching them breathing deeply and securely in their cot or bed. Smiling at the way they are lying or the way they are clutching onto a favourite blanket or teddy. Thoughts so quickly turn to the future.
Who will take care of her when I am gone?
Will anyone love her – really love her as I do, when I’m gone?
Will she be bullied because she is different? Because she has Down’s syndrome?
Will she be exploited? Taken advantage of?
Who will speak kindly to her when she is anxious or sad?
Who will hold her hand or give her a hug?
It’s not uncommon for many parents of children with disabilities to even wish that they outlive their child. They cannot see a future for their child without them being there to care for them.
It’s these fears that threaten to overwhelm me. Blink fast, swallow hard fears.
But they only ever threaten me.
I’m a Christian. Completely not cool.
According to the media and especially social media, I am someone to be mocked. Often laughed at, ridiculed, criticised and increasingly silenced.
I can live with that.
I can live with that because my faith is the only thing that can calm these overwhelming fears. The media can’t. Facebook can’t, neither can Twitter. Other people can’t, though of course I take huge comfort and encouragement in the words and experiences of others on a similar journey, whether or not they share my faith. I am thankful for them and value them enormously.
But, if having faith is a crutch to lean on then I am happy to keep limping. However uncool it may be.
The Bible has two particular things to say about Hazel ‘s life. They are my crutches. Whenever those fears threaten to overwhelm me once more I bring them to mind and lean heavily on them.
Firstly that God uses the weak things of this world to shame the strong.
Hazel is weak, undoubtedly.
Down’s syndrome is often seen as weakness. A flaw. Something undesirable. Something to be got rid of. Unwanted.
Not to God. And not to me. I have already seen how Hazel’s ‘weak’ life compares to the selfish, self centred lives of many ‘stronger’ or ‘wiser’ people. She has already brought more joy into our lives in four short years than some people will bring in a lifetime. She shames many. Each and every day.
Secondly, that God has plans for her life. Plans to prosper her and not to harm her.
Hazel’s life is no accident. She was planned. She has purpose. She has a future.
This doesn’t mean there won’t be problems, or challenges. This doesn’t mean she won’t face discrimination or even hate. But it does mean that her life will matter. Her life will make a difference. Her life will be cherished and she will be loved. I believe what God says. I have to. The alternative is too overwhelming for me.
Shopping lists and signing for deliveries has been the extent of my writing achievements lately.
Weeks of Hazel’s poor health and the sudden serious illness and subsequent loss of one of my dearest friends has stopped me in my tracks. And, though the words have not come so easily, I have at least had some time away to stop and reflect.
Last week we found ourselves on an almost empty beach, having arrived late in the day. The sun was casting long shadows across the beach and the sand was still warm underfoot.
Hazel loves the sand. Did I say she loves the sand? She LOVES it!
The moment we placed her down on the picnic blanket she was off. At speed.
For a child that cannot walk or even stand unaided this was a sight to behold as she bottom shuffled away across the beach. Arms raised as she went; chasing after the long shadow her tiny frame was making in the evening sun.
Have you ever seen the tracks that are made in the sand by baby turtles as they head for the sea? With all their might they propel themselves forward, their little bodies longing to be in the water where they swim freely. A trail of wavy lines in the sand; evidence of their struggle and determination to reach their destination.
Hazel left similar tracks as she crossed the sand.
Before we arrived at the beach we had been in a children’s play area.
I generally hate play areas.
Mostly because they are a reminder to me of what both my children can’t do. My eldest has her own physical struggles with hypermobility. Play equipment has been a huge challenge for her, not least because most of her friends can use it with ease. In Hazel’s case it is often simply inaccessible. Though some playgrounds are more disabled friendly than others, largely their equipment is off limits to her.
Yet here, in the sand, Hazel had freedom. She was not hindered in any way. It didn’t matter that she could not run or walk or even stand up on that beach. Hazel took enormous pleasure from what she could do, from all she could enjoy in her own unique way. She didn’t need toys. A bucket and spade was of no interest to her. The feeling of the sand in her fingers and toes was enough to keep her attention – for hours! She did not tell us how much she was enjoying herself. She can’t do that – at least not verbally. But the joy on her face and the fact she did not turn back for reassurance told us all we needed to know. Hazel was happy. She had all she needed.
Hazel does not eat food. She is tube fed. Food holds no interest for her – yet. But sand….sand would go into her mouth quite happily. And, by the time we left the beach later that evening, she was literally covered from head to foot. Almost camouflaged.
The turtles eventually reach their destination, though it is a perilous journey, full of struggle. They don’t give up. And, once there, they swim freely.
Hazel will eventually reach her destination. She will eventually walk, she will eventually eat. She will eventually talk – even this week she had made advances with this. I, on the other hand, have felt like giving up recently. Too many sadnesses and difficulties to face. I haven’t wanted to keep going. Yet Hazel, as ever, is my little joy giver. It’s hard to stay sad when she is around. And she teaches me so much about perseverance and courage. Hazel doesn’t give up. She chooses joy and is content with simple pleasures.
My dear, precious friend, Vicky, for whom I, and so many others, now grieve, made it across the sand. She reached her destination – far sooner than any of us would have wanted or expected. She knew where she was going and lived her life in the light of it; constantly urging others to make their lives count. Her faith in God permeated every part of her life. Heaven was so real to her, and, when the time came, I don’t think she was afraid to go there. The tracks she has left are permanent ones. Life changing even. I thank God for her, but I miss her so very much.
Hazel is a little further across the sand this week. And so am I.
In memory of Vicky Taylor, who made every second of her one precious life count.
Miss you so very much, but I know you’re having a ball x
Downright Joy 