Burden is a beautiful, all-consuming word. She is a gift, costly to many, priceless to me. Too heavy, too expensive for some to receive, carry, care for, Love, nurture and enjoy.
Burden is a noun as well as a verb. A load to be shared, a weight best carried when spread Across the shoulders of an entire community, Not one person or two or even three.
Burden can be known by her alter egos, Significance, Substance, Intention or Meaning. Known also as Cargo, she can be most cumbersome! Gold, real gold, weighs its worth so heavily.
Burden carries with her the full range of human emotions. Which weighs more; a tonne of feathers or a tonne of bricks? Feathers make for the softest of pillows for weary heads Bricks build on each other, mortared together to surround, shelter and support.
Burden is a beautiful, all-consuming word. And I am refined by her syllables. Thrilled when others come alongside to share in her Meaning, They add more bricks along the way, building all our belongings.
Burden (whose real name is Blessing) Has just sat down on my lap, smiling, to watch heavy rain lash against our window. Forgive me, but I’ll just have to put this down for a while and finish it later….❤️
“I sometimes hear old people, including Christian people who should know better, say, ‘I don’t want to be a burden to anyone else. I’m happy to carry on living so long as I can look after myself, but as soon as I become a burden I would rather die.’ But this is wrong. We are all designed to be a burden to others. You are designed to be a burden to me and I am designed to be a burden to you. And the life of the family, including the life of the local church family, should be one of ‘mutual burdensomeness.’ ‘Carry each other’s burdens, and in this way you will fulfill the law of Christ’ (Galatians 6:2).” John Stott The Radical Disciple
We asked for help, a year ago. It was hard to do. Pride got in the way, many times; weariness stood over us, blocking our view Of what help could mean, not just to us But more importantly, to you.
Years of thinking we should be able to cope Manage by ourselves, not admit any hint of defeat. It felt wrong, somehow, to ask just for us But we should not have been afraid to ask For you.
Help emerges, stepping very gently in on ourdaily scenes. Those tasked with listening, listened. Compassion now walks faithfully, routinely, through our front door. She rolls up her NHS sleeves, and as I back slowly away, out of sight, I glimpse her smiling, so very tenderly, at you.
We never knew, incredibly, we never knew! That help intended for us meant new independence, A new face, a new friend, a giver, Someone new, as well as and other than us to smile with, nurture and care
For you.
“You can buy two sparrows for only a copper coin, yet not even one sparrow falls from its nest without the knowledge of your Father. Aren’t you worth much more to God than many sparrows?” (Matthew 10 v 29 The Passion Translation)
I saw Sadness leave one day back in early September, It stood up and walked out through the door. Without a word of warning, it simply left your face. Not pausing to say goodbye or farewell But still, leaving me shocked to the core.
I did not notice when Sadness came into your life, This was not someone I thought you of all people knew. Yet the moment Sadness left you was also the moment I saw That for many days, weeks, months even years more than I’d realised Life had been growing harder for you.
Sadness moved in on you, on us, so very slowly, stealthily. A Master of Disguise in lives lived permanently on high alert For the next medical emergency or serious health concern. Sadness was, at first, just a virus then perhaps it was not…but if not, then what? Doctors looked for a reason why you were no longer yourself; why so inert?
The day Sadness left was the day I knew it had ever even stayed. That soft autumnal morning as I signed to you ‘the first day of school.’ After months of your outside world shrinking in ways that had broken my heart Your face looked up and THAT smile at once returned, revealing the truth You’d been sad for too long, not ill.
Christmas came in September, with gifts of friendship, Farm visits, fun and laughter at school, at home. Connections once again made with others who bring you joy. Inertia left with Sadness, scooping up Entitlement who I confess I’d invited to stay. Leaving room once more, at this particular Inn, for those who make their love for you known.
I’m thankful, this Christmas, for the Giver as much as I am for the Gift.
Happy Christmas to all who celebrate with us x
“The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.“
Words of Jesus, recorded in John 10 v 10, The Bible and my prayer for all who read this.
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.
Downright Joy 