I don’t remember the last word you spoke. I had no idea you had no more words to say, so I did not think it important to make a note.
I wish I could remember when you last spoke. I had no idea your speech was reaching an end and I did not notice it slip away. Your words carried off into the sky on the breeze of busyness. For a while I did not realise they had gone.
If I’d known I would have looked up sooner at the sky, the trees. I wonder if their branches would have caught your words, and held on to them….at least for a while. Giving me a chance, perhaps, to climb up and take them back for you. One by one – no phrases. In reality, only a few words anyway, now tangled high up at the top of the tree. Out of reach.
Like a child’s once preciously held balloon and now abandoned to the elements, your words disappeared. Snatched out of your hand whilst no one was looking. Taken from your lips. But unlike that child, you did not cry or alert me to your loss. How could you know what to say when what was missing was needed to say it? You let it go without a fuss.
Occasionally someone notices the balloon in the tree. In winter, no more than a dash of colour against prison grey boughs. In summer, glimpsed only from within, under the canopy. Protected by the greenest of leaves, but still there.
Oh no, they proclaim, someone has lost their balloon!
Perhaps they know the sinking feeling of watching their own child’s balloon float away. Just…. out…..of…..reach……. Momentarily, or perhaps for longer, they feel that pain.
I still notice the balloon.
I see that tree every day and I see the balloon. Your balloon.
For a long time, the lost balloon has made me sad. I have tormented myself with questions as to what more I or anyone could have done to help you hold onto it. Treasured, painful videos from back then remind me of the time you had with your balloon.
Whatever the reason, the balloon took flight and has not returned. And I can no longer see it in the tree.
You don’t even look for it. It does not matter to you. You spend no time worrying about the things you do not possess, even if they were once yours.
Instead, you notice what and who really matters in your life. With your entire being you speak eloquently and joyfully, leaving me in no doubt of what is important to you. No words required. You hear a song and your body sings it back to me. You understand melody with the best of musicians. You see someone or something you love and your hands give a speech of their own.
You also notice the tree, but simply because it is magnificent! Like you. And like those around you who never had a balloon in the first place. Some of them your classmates or friends you have made along this different path. They too are magnificent, and like you, they speak in ways too lofty for most people to hear. Maybe that’s where the balloon has gone. Higher up.
You look for what remains, for what is. Not for what has gone, though the balloon was nice whilst you had it.
And if you never speak another word in your life, love remains. Or if one day you find your voice again and never stop talking, love remains.
The balloon was desirable; so many things in life are, and I missed it when it let you go.
Yet love is far and away much easier for us both to hold onto and is tied in such a way that cannot easily come undone.
I settle back in my chair. By the window, looking out on to The Garden.
The chair I have just bought so I could look out at the garden I have just planted.
Aching legs, tired arms, calloused hands.
Weary. Content. Exhausted.
Her garden. I mean it’s mine, ours. But I have planted it for her.
Grasses that will sway, Lavender that will seduce. French, naturally.
Hustling Hostas; each one thinking they are the star of the show.
They do not realise how much they need each other.
A copper windmill, jewelled with stones of purple and red and blue. Ponderously regal. Disdainfully, it shares the stage with a water feature….a resin hand-pump masquerading as cast iron, surrounded by a family of acrylic white ducks. Yet it might as well be Royalty. To her it is a thing of great beauty. Its diminutive trickle of water elicits sounds of great joy from her. She is non verbal. My daughter.
So I love it too.
Oh and there are butter yellow Calla Lilies! Still beaming at dusk; positively shouting at dawn.
There are spaces yet to be planted. Gaps. Bare patches. Problem areas. This garden is incomplete. I hope it is never finished, for where would the joy be in that?
We will do things differently. Experiment here and there. Get things wrong. Get things right. It will be hard work, often very lonely, but it will also be rewarding. Not in Gold medals or Silver Gilts, as we are unlikely to ever meet the criteria for those; but none the less, so very rewarding. There is no competition.
And though we still live on a busy road, in a busy town, where noise, traffic and so much more disturbs our peace, where there is so much about our lives we cannot change, though we would like to…. and though passers by and those who pass us by, may have no idea even of our existence; we will be enjoying the garden.
A funny thing happened the other day…. I think I may have attended the Best Wedding Ever. Or at least, the Best Reception Ever. The actual Wedding took place two years ago but plans for a large celebration were scuppered by Covid. Thankfully, seasons change and the Bride and Groom could now be truly honoured by many more than were able to attend the original ceremony.
I’ve since been reflecting on why this celebration felt so special. Of course, all wedding celebrations are special, but this particular wedding celebration was like no other. For a start, the Bride and Groom had Down’s syndrome. How many weddings have you been to where that was the case?
It was more than a celebration. More than a just a party. A joy filled day and night of people with Down’s syndrome – and there were many – and people without Down’s syndrome, quite simply enjoying one another’s company and letting their hair down. All the usual things you might expect to find at a wedding; colourful outfits, smart suits, table favours, speeches – including the best one I’ve ever heard from a Groom, cheesy wedding songs and disco lights…. Simple extravagance. Wedding-y.
Yet also quite profound.
Alongside those who were getting married, giving speeches or playing musical instruments, living their lives to the fullest, planning and dreaming of their own special day, was my daughter who also has Down’s syndrome. And though I do not possess a crystal ball, I am realistic enough to know that she is unlikely to realise those same dreams, even if she were able to dream them in the first place. She is far less able than many with Down’s syndrome. Yet, in that wedding reception I felt a sense of love and care towards her that I’ve rarely come across anywhere else outside our own community. As she wandered around the tables of seated guests in her own autistic, non-verbal yet noisy world, present yet elsewhere; I sensed a belonging. No-one stared or looked away as they often do in these situations. They smiled. Not out of pity either, but out of love. They reached out to her without hesitation. They honoured her just as they honoured the other guests who had Down’s syndrome. We did not strive for inclusion. That was a natural given. And though I joked about ‘life goals’ when she inadvertently led the Conga from her wheelchair, itwasn’t a joke at all. Even the DJ said it was the best Conga he’d ever seen.
At breakfast the next day, I saw very few hangovers, though we had all enjoyed plenty of wine.
Instead, I saw other guests who also had Down’s syndrome, excitedly talking about when it would be their turn. Their wedding day. Even if they hadn’t actually got a partner. They were now daring to dream the same dream.
This Wedding was not a celebration. It was an Honouring Ceremony.
A safe place to be. An honouring place to be. Where the least became first.
A day when people who have Down’s syndrome were truly honoured, not routinely mocked, feared, shunned or despised. Yet, within the space of just forty-eight hours, this realisation came home to me and my family with a brutal bang.
My eldest child, just 12 years old and a young carer to her sibling who has Down’s syndrome, soon found that the Wedding Bubble had burst. Saturday’s honouring of people with Down’s syndrome, people whom she loves, turned into Monday’s mocking of them.
A fellow classmate, in their impatience over tech that wasn’t functioning correctly, directed two words at my daughter. Forcefully.
‘That computer’s got Down syndrome,”
They said it twice. Once to her, then to an adult. For laughs.
Except my daughter didn’t laugh. She cried. She left the room in shock and missed the start of a test she had been about to take. The other child was taken aside, reprimanded and shown how their words could never be funny, only hurtful. Mercifully, restorative justice meant that heartfelt apologies were made and fully accepted. The child was genuinely contrite and, they felt bad.
A lesson learned the hard way, yet there should always be room for a way back. Room for restoration.
A child used those words. As a slur, or, at best, in what they thought was an acceptable joke. Words that were their first choice. A specific, identifiable condition. Down’s syndrome. Not Learning Disabled or another condition. They targeted Down’s syndrome. And the irony of them having their own Learning Difficulty made that all the more distressing. How does a twelve year old learn to say such a thing? To target a group of people so thoughtlessly, or so heartlessly? For laughs. I can only think it is because they had heard it before. Likely many times. Something like this….
Down’s syndrome = equals stupid.
Down’s syndrome = worthless.
Or, perhaps more likely in this instance….
Down’s syndrome = funny.
A familiar portrayal that’s been on run and repeat for as long as I can remember.
And so, in response, I do the one thing I can do to alter this course.
I honour my precious Down’s syndrome child. And, before the entire community points out my language (or apostrophe use – hey I’m in the UK, it’s what we do), I used the words exactly how I meant them. My precious Down’s syndrome child. My precious child with Down’s syndrome. One and the same. Mine. Precious.
It is my honour to honour her. To serve her. To get on my knees when she needs me to. To set aside the things I might like to do so that I can be there for her, with her, alongside her or right behind her. Never in some kind of martyrdom, simply a response to what caring for another really is. A privilege.
To honour her because she exists, because she breathes, because she is.
I am all for honouring people with Down’s syndrome. Others have, and continue to set Down’s syndrome apart from the rest of society in brutal ways, both in word and deed. They do not honour people like my daughter or those at the Wedding. And as I doubt that achieving equality can ever balance the scales of this injustice, so I determine to set her apart and tip the scales in the opposite direction.
I will honour her. To honour is so much more than to celebrate. It is not dependent on any accomplishment, however noteworthy. The wedding was an honouring occasion. It was filled with love and kindness. I hope there will be many more weddings for people with Down’s syndrome, (and I really hope I’m invited to some of them too!)
I’m so done with the push for inclusion. I’m done with the push for equality if I’m honest. In all walks of life. Truly honouring someone who has been dishonoured brings restoration. And when something is restored, it means it is set right. It is no longer unequal. The scales are re-calibrated.
Honouring that comes from a loving heart can achieve so much more than any equality act or piece of legislation.
Restoring honour to those who have been the most wronged, the most dishonoured, is a good place to start.
People with Down’s syndrome are, I believe, close to, if not at the top of that list. Hierarchy takes many forms.
And there is always a way back, if we allow it. Wrongs can be righted.
The dishonoured can be honoured and restorative justice can work for the good of us all.
a system of criminal justice which focuses on the rehabilitation of offenders through reconciliation with victims and the community at large.
It’s a thing of beauty, my daughter’s favourite toy. It stands apart from the usual plastic playthings a child of her age may be drawn to. There’s a quality in the workmanship that can only be admired.
Bejewelled with rubies, sapphires, amber, amethysts and emerald ‘stones’, it spins on its wooden base with the lightest of touches. A little encouragement is all that’s required to make it dance.
Place it in the path of sunlight and it positively sings with joy.
And yet it’s fragile. Prone to tumbling off the table and clattering loudly, ungainly, disappointingly to the floor. Brushed off, knocked down, discarded.
And unless I am there to pick it up and put it back on the table, that’s where it stays. You see, my ten year old, non verbal, autistic daughter who has Down’s syndrome has never learnt that when something or someone disappears from her view, it or they are actually still there or somewhere else. Existing or existed, but now hidden. She has not learnt that her favourite toy can be experienced or even enjoyed again if only she would look for it. So she turns her back and walks away. She forgets the joy the toy brought and moves on to her next experience.
Out of sight, out of mind.
Until last week.
Last week was different. What changed, and why, I have no idea. Others more widely educated in these learning processes can explain. All I know is the toy dropped as it often does but this time she went looking for it. She bent down, she picked it up and it was she who put it on the table then continued to play with that which brought her joy. Her delight carried on as before, but her world had, in that moment, opened up and my delight was off the scale.
A first. An action I had given up on ever being possible.
This time, there was no turning away and moving on to another experience. This was the one she wanted and she took hold of it with both hands. She noticed it had gone and that now mattered enough to go looking. My assumptions about her were wrong.
Rubies, emeralds, amber and sapphire danced again in the columns of warm spring sunlight that streamed across the table.
An ordinary table in an ordinary kitchen on an extraordinary day.
A pleasure that was hers for the taking and she was finally able to seize it.
Some ten years ago, after many weeks, she came to be discharged from the neo natal unit that had been her home and our place of safety. A kindly consultant handled our departure and, sensing my unease at having to leave what we knew, told me of how much the world had changed even in a relatively short space of time. Just twenty-five years earlier her cousin had been born with Down’s syndrome and was routinely put into an institution.
Out of sight, out of mind.
The sadness in her eyes stayed with me. The if only was palpable.
She knew there were so many colours waiting for this baby. My baby.
I noticed she spoke only of her cousin in the past tense.
I hope someone walked with him and pointed out colours.
Like in a rainbow; though I imagine he noticed them first.
Last week the colours got a little sharper in our Down’s syndrome world. And now my daughter knows she can at least hold them in her own hands.
I see others similar to Hazel, they are picking up brushes and painting rainbows like I’ve never seen before. New colours coming to the fore in a shifting landscape. Emerging artists taking up residence in a world that still struggles to embrace their art form. Their Down’s syndrome.
We should not take their palettes away thinking they cannot paint. Neither should we begrudge what they find or what they are given. I have found they will share their lives, their experiences, their possessions willingly and extravagantly. They are not the ones needing lessons in humanity. From my little window on the world of Down’s syndrome Ive noticed they are often the first to show empathy to anyone who is treated differently.
When another cries in the room, my daughter cries too. Every time.
Instead I want to stand back and watch them pick up the colours that matter to them. However they pick them up, whatever their understanding or ability is. What will their world look like to them? How will they depict it, shape it, colour it? Who or what will they paint into it?
I no longer want to assume I know what’s best for my daughter or for others with Down’s syndrome, or anyone else for that matter. I do not speak for them. They are not voiceless and never have been, it’s just our world paid no attention to their voice or afforded their particular art any worth. The loss of colour to humanity must be, I have often thought, incalculable. No. Instead, I want to learn from them, from the experts, the artists. I’m convinced we can all move forward into new and more vibrant life experiences when we do.
Of course I’ll have my own opinions, and in future I’ll try harder to keep these to myself if I cannot be sure they will do someone, somewhere some good. But I do want to see a people group who, though in the past were routinely placed in institutions and are still discriminated against simply because they have Down’s syndrome, are now brought front and centre where their colours can be seen as they were always meant to be. Not because they are better than anyone else, but because they’ve spent more time than anyone else under the table.
Out of sight out of mind.
Some say diamonds are a girl’s best friend. I say it’s emeralds and rubies, and they can be friends to anyone.
You’d think after ten years of knowing you, I’d be an expert in you.
You’d think I’d have learnt so much about this thing called Down’s syndrome.
You’d think I’d have learnt so much about what makes you tick. Your likes, your dislikes. Your needs and your wants.
I am your mum after all. To some, like me, the title ‘mum‘ is badge worn with honour in all situations. To others, it’s a lazy or condescending title, used to belittle and control. Don’t call me mum they say. With feeling, with reason.
I hope they are heard.
Some say I’m supposed to be an expert in you, yet there are no letters after my name. They mean this as a compliment I think. To me it’s just a pressure. I am no expert in you. If I were, I’d know what made you cry instantly. I’d know what you were really experiencing as you bit down on your hand, making it bleed in, well I don’t know…is it pain, is it frustration, or is it fear? Help me out here will you? I’m no expert.
I ask you, every time. What’s the matter? But you cannot reply. Not in the way I wish you could. And it takes rather more than a degree or a PhD to interpret the reply you undoubtedly do give.
I try to help you learn to eat, but do you want this food? Is it to your liking? Or is it too hot or too cold? Too difficult to swallow? Too sweet? Too sharp? Shall we just give up and use your feeding tube instead? I don’t know.
And about learning to walk…how are those orthotics feeling today around your ankles? Do they hurt? Are they too tight? Is that why you fall to your knees and stay in one place, or is it because those boots are just so darn heavy?
Why have you taken your glasses off? Did they rub your nose or does the prescription need changing? Ahhh I see they need a clean. Here, let me help you with that. If only you’d said.
What would you say to me if you could?
I am no expert in understanding you. In reality, I know so very little about you. But my face is always turned towards you. My ears are attentive to your plethora of sounds. Your cry. I am sorry I don’t always give you what you need. This is not ok. I wish I could.
Sometimes I may see what it is you want but do not give it to you. This is ok. It may not be what is best, not just for you but for others around you. You are part of us and we all matter.
What matters to me most is that you are always heard, even if you are not always understood. Even if what you ask for I cannot give as it is outside of my ability to either understand or grant or it is in someway detrimental to another.
Our friend, Heidi Crowter…who really is our friend and who we have enjoyed spending time with in the past, has recently been asking for something. Unlike my daughter, she is able to say what it is she wants. Whether or not she gets what she wants is another matter, and one not for me to decide thankfully, though she has my support and my sympathies.
What matters most to me, I’ve been reflecting on, is not the outcome of her case. As others have been quick to highlight, the judge said her appeal was unlikely to succeed. They may well be right and of course, time will tell.
No. To me the most extraordinary thing of all about her journey so far – whether one agrees with her case or not – is what took place last week in the Court of Appeal in London.
Heidi Crowter: a woman with Down’s syndrome stood publicly to speak in the Court of Appeal and was not shut down, either as she spoke, or by the decision of the judges that ensued in allowing her to appeal. All of which happened on International Women’s Day of all days.
Type the words Down syndrome into Twitter, or Google and you’ll soon find, as I did just the other day, words of hatred spoken about people with Down’s syndrome. Words that seek to destroy and shut out people with Down’s syndrome – even from life itself. I even reported one such abusive tweet that referred to another child with Down’s syndrome as “an abomination to this planet ” and that they “wouldn’t consider it as human”. Twitter responded by saying this tweet had not broken any guidelines.
Twitter replied to me, but did they hear me? I’m not so sure.
Whatever happens next in the Heidi Crowter case, that historic moment in the Court of Appeal will never be taken away from her. And I’m no expert, but I am thankful to the two judges who are. They listened to and they heard Heidi. And, I believe they understood and recognised her need to be properly heard in the highest court in the land, regardless of whether her wishes can or should be granted.
I wrapped you up tightly against penetrating winds and prying eyes. I pushed your sister to and fro in the orange bucket swing. I must have fed you there too. Not by bottle or blanket covered breast but by nasogastric tube. Your soft, perfect cheek aggravated red raw by a strip of sticky tape that held the tube in place inside your tiny nose.
Gravity feeding, with one arm in the air, holding up a purple syringe. Fortified milk flowed down a tube, disappearing inside the pram. I glance around the park, fearing the double take. Afraid of what people might say, wondering if they might be cruel or insensitive, as had happened days earlier when a stranger had noticed you had Down’s syndrome and a “funny tube”. They pointed right at you and it stung.
Yet, I’m secretly hoping, wondering, if someone would walk by and say something lovely; to make what hurt sting a little less.
Always wondering, always worrying.
Afterwards, we watched the ducks busy on their little island. We did not feed them; no hands were spare for that. They took no notice of us anyway, as we had brought nothing to their table.
I took you there as a toddler.
In a pushchair.
Head to toe in snow suit, thick socks and fur lined boots. I knew your feet would be cold. Unable to warm them up by running around. You were a toddler who never toddled. Your boots always as good new. I pushed you in the orange bucket swing, your sister now at school. In reality, I wedged you in, both hands holding up your floppy body against rigid plastic as we both went to and fro, awkwardly.
I’m sure I fed you there again. Less concerned by the double takes or curious looks. Your beautiful face now healed. A thousand syringes later and with a battery-operated pump to boot, the tube by now surgically placed directly into your stomach. I worried about you getting cold as I pealed back the layers and connected you to the pump.
Picnic table not required, I sat on a bench and we watched the ducks. We did not feed them, there was no room in your bag for anything other than essentials.
I’m sure you must have wondered what they were, those funny little ducks. What did your blurred almond eyes make of them, I wondered?
We stopped visiting the park several years ago and I think our world shrank a little more. I had deemed it pointless as you could no longer access the playground. We could not enjoy it the way other families did. It was unsuitable for you; a public right of way with a caveat. And dogs. So many dogs tearing around the park with exuberance. Enthusiastically sniffing out their daily moments of freedom with no lead to restrain – though the Official Looking Sign said that, for the benefit of others, they ought not.
Silly sign, the dogs did not read it.
Today you visited the park again.
In your wheelchair.
Only this time, I wasn’t there. I have seen some photos your teacher sent me. I see you share your joy and delight at this unexpected trip. I hear your laughter. I see the spring in your step, even from the confines of your chair. A blanket has been placed lovingly over your legs to keep out the cold wind. I wonder who put it there? I’m so thankful and touched that they did; it makes me cry a little. It’s something I’d do for you.
From your chair you watched the ducks. You held a stick. You’ve always loved a stick. Your face tells me that you wondered at all you saw. You shared your wonder with your teachers and classmates. No doubt you shared it with passers-by as they did a double take at the class of wheelchair users and their carers surrounding the park’s little pond. I’m certain they would have smiled too.
And I wonderedwho was teaching who?
Today you came back to the park. Your pockets still empty, overflowing with untold riches to give away. Pockets filled with wonder. Treasures you woke up with, stored, perhaps, under your pillow? Like some sort of biblical manna, it appears each day. Ready to hand out to those you meet. You are my miniature, giant philanthropist.
I hope you visit the park many more times.
I hope you never hide away. I hope also, that you are never on parade, rather on a par. Experiencing all the park has to offer, as others do, and giving back in all the ways I know you will. Today you were all the things a person should expect to be: surrounded, included, protected, loved, invited, heard, appreciated, present. Though the world may sometimes hold up an Official or Unofficial Sign that says, for the benefitof others and your own, you ought notexperience these freedoms.
Silly sign. You cannot read it. I hope you never will.
Today you came back to the park. And, though I’ve had many sleepless nights wondering if this would ever be the case, you were all those things without me. A walk in the park may be harder for some than for others but there are always sacred spaces to be found, and shared experiences to be had.
And, perhaps in the way you do, I now wonder at it all.
Different posters adorn the walls. Antenatal Word Clouds long since replaced by Musculoskeletal Murals.
And the patients. They are different too. No longer anxiously stroking an unknown bump, nervously avoiding eye contact with others in The Waiting Room as they await their scans. These patients rest their hands on crutches. Or support their sling encased arms with a gentle hand. Waiting for their turn, for their particular trauma to be addressed. To be healed.
They smile at you. They can’t help it. You make people smile. In your pink wheelchair, with your pink hair bows. If they feel pity for you, it soon turns to joy.
You do that to people; I’ve noticed.
Which is good, because right now my stomach is churning. My heart is racing. You see, we’ve been in The Waiting Room before, you and I. And I did not expect to be here again.
That Department has moved, the receptionist said, noting my confusion. Go through those double doors and you’ll find it.
And so we sit here again, some ten years since the last time.
In The Waiting Room.
Your name is called out. You have a name. Everyone here has a name. Of course they do. It’s how the staff know who they are dealing with. It’s how they know who is next on their list to be cared for.
Last time you were here you did not have a name. Last time you were here you quickly became an it to those who spoke of you. Including me. Last time you were here you were not known.
I wonder, if I had given you your name when we last were here, if that would have made a difference?
They said they could deal with it last time you were here. When they found out you might have an extra chromosome.
Imagine if I’d told them your name. Imagine if I’d had the courage of my convictions to have named you YOU back then. I wish I had, but I admit… I was scared. I did not know you either.
Now we sit in that room and I wonder if it’s the same chair. The trolley bed is in the same position. It’s the same room I sat in over two years before you were even born, weeks after nearly losing my life and that of your unborn sister. A room that holds so much trauma for me and, presumably, countless others.
The doctor kneels at your feet. You look down at him from your wheelchair, smiling. Laughing.
He gently wraps bandages around your badly damaged ankles and feet. He speaks tenderly to you, telling you what he is doing. Casting moulds for the support you so desperately need. He says you can have colourful casts if you like. He calls you Sweetie. He also calls you by your name. He honours you. He knows you.
This is not the first time he has treated you. Nor will it be the last. He wants only to make your life better. He knows what you need. He knows because he has met you. He knows because he has cared for many people like you before.
He knows you.
Last time you were here a doctor stood over you, whilst I patted you nervously, clutching your photograph. Many photographs were being handed out to people that day and everyday. You looked a bit like a kidney bean…. I’ve kept it, you can see it one day if you like.
You would not remember. He stood over me, over us. Kindly, gently, yet devastatingly, his words brought trauma to us both. And, moments later in the room opposite which I can see from where we now sit, another kindly professional spoke trauma over us both and even death over you. I carried you, like all the other patients in The Waiting Room that day. I also carried the leaflet they handed me, that told me what they thought I might like to do – about you.
I have no ill feelings towards them now; sitting here. Those feelings have unexpectedly gone; I don’t need to hold onto them anymore.
Instead, I carry a sadness that the Doctors back then did not know what the Doctor who now kneels before you knows. I carry a sadness for every woman, every parent, who has sat anxiously in these rooms and experienced trauma; whatever decision they made, however they made it and whatever their outcome. So much fear, often but not always, of the unknown.
Fear causes stress and stress fractures.
Yet in this unexpected moment, my sadness is replaced by thankfulness. Fractures fuse as the healing process begins.
I am thankful for this room, for these other patients, for this Doctor who knows…who knows you. I am thankful that we have come to The Trauma Clinic today for it is a place not only of healing but of redemption.
A silent letter goes before you, shaping your reason, your purpose, your meaning, as you enter.
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.
We made it half way up the stairs. She is on her stairlift. I am holding down the control button.
The alarm is, well, alarming. It’s shrieking….. I’m no longer green. I’m red I’m red I’m red. And this is as far as I can gotoday.
I disagree with alarmist opinions, I always have.
Yesterday you were green. They said you were fixed. They said they couldn’t see anything majorly wrong. They looked, they tweaked, they said they did their best yesterday and indeed you were green. They hoped their remedy was permanent.
So did I; the cost is mounting and climbing higher than any stairlift could ever go.
Red, green, red, green, red, green
You, me, me, you. Today we both turned red.
I brace myself to lift her down from her predicament. Praying we do not topple. And I did actually pray.
Is this what it feels like to be rescued from a fairground ride? Stranded in mid-air whilst all around go about their business down below, busy on adventures of their own. A whole community, just down there. Out of reach.
We are high up. Hoping for help, though it does not come. Praying. Feeling very small, very alone. At least one of us is. The other not so. She has always loved fairgrounds. The lights, the colour, the spectacle, the drama. She is laughing right now. Unconcerned. All the fun of the fair is in her eyes as it always is. This is what blessing looks like.
Oh I too love the funfair, don’t get me wrong. It’s true I’m not all that keen on the Helter Skelter or those swingy things that send you hurtling through the skies at breakneck speed. And the Dodgems – well they are just plain dangerous if you ask me. But find me the Hook a Duck stand to try my luck with, or a colourful Carousel with painted horses and I’ll happily hop on and go round all day.
A fairground is a place where screams are many yet, no one hears them. They are not required to. Laughter, joy, screaming, fear, exhilaration, merge into one, giant, merry-go-round. Pleasure and pain. Pain and pleasure. Pleading to get off then getting back on for more. Fearful moments soon overcome by joyous ones, then replaced by fear….and so it goes on.
We are downstairs again, yet we need to be upstairs. She needs to sleep so we cannot stay here. Now there’s another obstacle in our way. It’s the same but different. Still alarming, still flashing and now IN OUR WAY. Reminding us of the journey we now face. A perilous one. An uphill struggle; each of my steps must now be carefully and very slowly taken for fear of us both tumbling down the stairs. The chair is not moving, no matter how hard I plead with it to work. Please just work. I scream a scream that no one hears. Not even her, thankfully. Only one of us feels the fear on this particular ride. The other knows only love and trust. This is what blessing looks like.
One day I will laugh at this too, just not today.
One day the plan will come together. A crowd will gather around us. Tradesmen and women will set to work to help her; and to help me. The stairlift will no longer be required to transport her to sleep each night. She will sleep downstairs, safe and sound in a new environment that can truly meet her needs. One with new rides to experience, buttons to press, levers to pull, hoists to take her into orbit. We will laugh with great gusto at ourselves in front of distorted fairground mirrors, knowing that our true self remains intact. Dignity will be restored. Hers and mine. This is also what blessing looks like.
Just not today.
Tonight we will dream of carousels and candy floss and all that this fairground means to us; we are certain we do not ever wish to leave.
Eighteen months ago or so, you will undoubtedly recall, hand-painted rainbows began appearing across the country of Italy, at the start of the Covid 19 Pandemic. Strung from balconies where Italian citizens resided, unable to leave their homes and now trapped in a place of fear and uncertainty. The banners were often emblazoned with the words “Andra tutto bene” which translates as “Everything will be ok.”
Some citizens began to sing from those same balconies to one another. Accordions struck up, Sopranos serenaded, Baritones bellowed. And, before long, it seemed like the whole of Italy was singing. As the New York Times put it, Italians had found “A Moment of Joy in this Moment of Anxiety”. Songs erupted from people who were clinging onto hope as well as learning to be thankful for the expertise of the medical profession that they were now so very dependent on. Something similar happened here in the UK with rainbows appearing all over as well as clapping and cheering for the NHS; though we never quite mastered the singing. That’s best left to the Italians – always.
A song, from the heart, is a precious thing indeed, and Italy will always have a very special place in my heart. Some of my family are Italian and have lived there all their lives. They too, draped a huge rainbow banner over their balcony, and sat behind it daily, looking down onto their fishing boats and nets from their centuries old home in the beautiful town of Sorrento in the Bay of Naples. A place so deeply loved by locals and tourists alike that it has a famous song of its ownTorna a Sorriento. Yet this beautiful place was now filled with fear and uncertainty. Hope was called for, fearful hearts needed a new song to sing. And as they sang, so hope spread, even inspite of their circumstances.
Ten years ago, my family GP was the first medical person to say anything positive about what life might be like with my baby who had been born and then diagnosed with Down’s syndrome. We’d just come home from two traumatic months in the hospital NICU and I was struggling to come to terms with her diagnosis. Our GP was the first person to give us hope that we would be OK. That we would be more than OK in fact. His words to me were so much more than medical and exactly what I needed to hear. He said that life with a child with Down’s syndrome would be an incredible journey and I would meet some amazing people. He did not sugar-coat or minimise the challenges we were facing; there was no need, we were already up to our necks in plenty of those, medically speaking. He simply sat on the end of my bed, metaphorically leaned across, and in one sentence, opened a new window onto a brighter view. One filled with a more colourful sky which, from that moment on, began to chase away its gloomy predecessor. A vista that slowly began to fill up with the possibilities of a life of love and of loving. His years of experience as a family Doctor told him that there was indeed still a life to be lived and loved. Hers, ours. He was not afraid to gently tell me so.
My GP has recently retired and so I took the opportunity to write to thank him and tell him how his words had made a life changing impact on me and my family. I have been told that he referenced my letter in his retirement speech, which has touched me no end. You see, somewhere over the years, the hope he gave me as a frightened and overwhelmed mum, fearful of what an unknown future might hold for my little girl with an extra chromosome and for our family, has evolved into thankfulness on my part. I felt it was important to say thank you for something so precious and transformative. For something better than any prescription, test or medical solution, helpful though those things may or may not be. I wanted him to know that I am forever thankful for his wisdom.
Wisdom – from the heart, not just a text book – is a precious thing indeed. A pearl of great price.
Facts are undeniable, but finding hope to live with them, beyond them and inspite of them is where a diagnosis can become a beginning not an ending. My sincere hope is that every parent who is fearful on getting a diagnosis of Down’s syndrome, as indeed I was, finds such a pearl. I hope they too will find continued support from those who will help them to prise it out of its shell and wear around their neck as their pride and joy.
Italians know a thing or two about life; about singing songs of hope, of love, of loss, of joy and of sorrow. Their language is rich and heavy with the beauty of these things.
And I think, though I’ve never enquired, that my GP may possibly be fluent in it.