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.
They’re a talking point, colourful, and fun to see. I’m just not too sure they are really about me.
Rename them ‘lots of socks’ if you prefer, instead of calling them odd. The thing is, I’m neither odd nor plural. There is only one of me.
Ah but socks look like Chromosomes you’re keen to explain.
Yes they do, so true, yet you also have those. Minus one of course, but otherwise you’re just the same .
You, me.
Both should rhyme with humanity.
Oh please don’t feel got at…I’ve worn mine too! I’m always up for some fun, often much more than you!
Socks.
It’s just you gave me some last year, and the year before that.
And I’ve noticed a pattern forming. A habit; one that leaves me a bit flat.
These socks keep coming, year after year. That’s nice… but there are other things I’d very much prefer.
When I’m older, I might like a job; will you help me find suitable employment? Or invite me to your parties, welcome me, enhance my enjoyment?
Include me at your meetings, give me a seat at the table. See me as your equal and perfectly able to contribute to the conversation in whatever way I can. Whatever the subject may be, especially, no –always – if the subject is me.
Support research into my health so I can live well, like you. Stand up for my rights, remove all taboo.
Help me learn new skills, give me roles to fulfill. I’m very keen to be active and not forced to sit still.
Just imagine – with nothing to do, your days spent at home; you’d get bored very quickly and feel quite alone.
Don’t stay silent when others say my life has no worth. Their influence is strong; complicit in deciding the fate of others like me, well before birth.
Champion me, not only with socks, but with all you can muster. Stand up for me, defend me, be a myth buster.
Give those who will love me all the help they may need To nurture me, teach me, help me succeed.
Don’t abandon them or leave them – at times -feeling so alone. Give them all the support you are able; help set the tone.
So wear the socks if you like; the bright colours I love and am happy to see. So long as you then take them off and walk barefoot with me.
Gratefully yours,
Hazel x
The DSRF are the UK’s only Down’ Syndrome Research Charity. Their vision is a long, healthy, happy life for people with Down’s syndrome (DS) and their families. The Foundation is a charity born out of a parent’s love and a passion for the very best evidence-based interventions. You can donate to their work if you wish here.
So many words, so many cliches. So many ways to express joy.
Sshhh! Not too loud, you’ll wake the baby!
Precisely what I needed to hear, truth be told.
Just what the doctor ordered.
Words people said when my second baby was born:
I’m so sorry
So few words. Eyes averted. Hushed conversations. So many ways to express sorrow. Shhh! Careful what you say, you might upset the mother.
Just what the doctor ordered.
But his prescription is long since out of date.
No one said congratulations when I had a baby with Down’s syndrome.
I blame no one; I carried my own prejudices, I reflected the mood around me, to an extent I permitted it.
Yet ‘Congratulations, she is beautiful’ was precisely what I needed to hear.
So to any mother who today cradles a new born baby in their arms, or sits anxiously next to their incubator in a NICU; a baby that has been born with an extra chromosome…..I pray someone will hold your hand, stare with wonder into the eyes of your precious child and tell you the truth of it:
Congratulations! Your baby is beautiful! Welcome to the world little one.
Today, on World Down Syndrome Day, I will celebrate every single glorious life, born and unborn, with an extra chromosome.
I’ve discovered a love for poetry in recent years. A passion awakened by hearing the late, extraordinary Mary Oliver read her poem ‘Wild Geese’. An experience that had a profound effect on me at the time. Now, her words, hand painted, hang from my living room wall. Words that made me gasp and caused my heart to sing. Words that still do. The power of the spoken word, especially spoken by the one who crafted it, is immense.
I’ve always imagined sharing these treasures with my children. And I’ve started to, with my eldest. I shared another poem, by the same author ‘I worried’, with her recently. Her anxious face lit up as I read. Someone else knew how she felt. It gave her confidence. It affirmed her. She was not alone. She loves words too and is beginning to discover the sheer joy of poetry. Of words used well.
My youngest child, who has Down’s syndrome, is largely non verbal. She has very few, if any words. She may not yet have the words to say to us but our words matter hugely to her. And poetry is, it seems, a powerful form of expression for her too. The spoken word. Only the other day, I found her looking at the Ipad over her sister’s shoulder, as they watched Michael Rosen perform a poem he had written. She could not repeat a single word but was utterly captivated by his expression, his story telling and his passion for the subject – Chocolate Cake. He brought words to life and enabled her to share in his delight. Unlocking a subject she knew little about in a glorious way. There’s nothing quite like the joy of hearing a non verbal child laughing like a drain!
Words, or more importantly, how we use them have the power to unlock or close down. As we approach another World Down Syndrome Day I see many people online spreading a message through their words and pictures of what life is really like to live with Down’s syndrome. Telling a story of hope, fulfillment and community. They do so for good reason.
All too often, the words offered to pregnant women and their partners when the subject of screening for Down’s syndrome comes up, are words that close down. Words that shut out possibilities. Words that paint a bleak picture. Words that may offer sympathy but that do not offer hope. There is no power in pity.
It’s time this changed. We know the reality. You see we have a passion for the subject. And we can tell these parents a different story. We can use words that can unlock their dreams and their hopes and their plans again. We have the words that can dispel the myths, whilst being able to acknowledge their fears; we were in their shoes once too. We have the words to give them confidence. The words to affirm them as parents who will be able to love and cherish their child regardless of an extra chromosome. We have the words to show them that their child is not going to be defined by a list of medical issues or learning disabilities. We can bring words to life. Real life. Their lives.
We want these parents to be given the opportunity to talk with or learn from families who are living lives that include Down’s syndrome. Living lives not of medical reference but of poetry that reflect the highs and the lows of bringing up a child with Down’s syndrome. We want to be able to unlock a subject they may know little about and invite them to discover for themselves the joy that is to be found in the life of a person with Down’s syndrome.
Poetry in motion.Lives well lived.
Sadly, here in the U.K. there are no second chances for the 90 percent of babies who are detected as having Down’s syndrome in the womb. Their prospect of life is brought to an end. Discriminated against before they even draw breath.
We need to get this right. Words need to change and the voices of those who know must be heard – especially at that most critical time of screening and diagnosis in pregnancy.
Mary Oliver is famous for many words, but perhaps, most poignantly, she asked the question,
“What is it you plan to do with your one wild and precious life?”
It’s not the only question that deserves a careful answer.
For more information on Down’s syndrome from people who really know please check out these great resources:
My daughter is, as I write, shouting at snowflakes. Loudly, as they whirl around outside, on a bitterly cold and windy March day.
Hands raised, fingers tracing the snowflakes path as they tumble to the ground. Transforming her world. Well, the garden. And, for a little girl with Down’s syndrome who, as yet, has only a few words in her vocabulary, snowflakes make her shout!
She’s not the only one who shouts at snowflakes.
Disruption, hard work, cost.
Beautiful, intricate detail. Delightful. So exciting!
Can’t get to work. Social plans cancelled. Schools shut. Wish it would go away.
Mesmerising. Wide eyed and wondering “what is this magical show taking place outside every window?” Joyfully in the moment. This moment. Now. It’s snowing. And it’s beautiful….to her. A Narnian landscape.
Snowflakes
Each one unique. Individual. Intricate designs. No two the same. Small, tiny even, yet, collectively, they transform the landscape.
Snowflake
A word now used to insult and/or define an entire group of people. A generation. We seem to be a society that is often intent on name calling, labeling, closing down the voices of those we disagree with or fear. Silencing them without ever trying to understand them. Holding fast to prejudiced views and opinions. Discriminating.
Beautiful words made ugly.
A society that says it is diverse, yet one that seeks to silence that which it fears or does not understand.
My daughter, who has Down’s syndrome, shouts at snowflakes. Not because she is angry with them but because she is captivated by them. Transfixed. They are of great value to her. She cannot take her eyes off them.
There was no snow when she was born, 6 or so years ago. Instead, the rich warmth of autumn leaves swirled around the ambulance door as nurses whisked her off into the Neo Natal Intensive care unit, her life in the balance.
Autumn colours are magnificent too. Vibrant. I wish now I had taken more time to notice them. Instead, I chose to look away and stared unblinkingly at grey skies.
Her life was fragile. Our life was disrupted. Plans cancelled. Couldn’t work. Costly. Painful.
For a while I was angry. I may have even shouted. The words Down’s syndrome were, to me, and to my shame, ugly words. I hated them. Prejudice I didn’t know I had ran so very deep. I could barely even say them.
Until, that is, a nurse came in and said just four words to me. Four words that I so badly needed to hear but that no one (other than family) had said. Words that had been said about her older sister the moment she was born.
Hazel was nearly a week old before I heard them.
“Congratulations, she is beautiful”
Words are so powerful. Transformative. Life changing. Life enriching.
Today is World Down Syndrome Day. Today, all we really want is for the outdated and discriminatory language surrounding Down’s syndrome to change. Language that breeds fear and uncertainty changed into language that brings hope and understanding. Using different words. Let’s ditch the damaging discourse on Down’s syndrome. Babies, children, young people, adults with Down’s syndrome are worthy. They are of great worth, as are you and I. They are people, not defects.They are not a ‘risk’ or a ‘problem’ or even ‘horrible’- as I recently heard of them being described by someone involved with pre-natal screening.
Change the narrative. Down’s syndrome is not something to fear. To avoid, or get rid of. A person with Down’s syndrome is so much more than a medical list of ‘problems’.
We miss out on the joy when we focus solely on the difference, the disruption to our plans, the cost. That one extra chromosome.
Cost, financial burden to the state….all words that have been tossed in the direction of people like me – parents of children with Down’s syndrome. As if these words have anything to do with a person’s worth?
I see a change in the landscape.
A group of mums, some of whom I am proud to know as friends, have caused a bit of a snow storm themselves this week. They have shown, in one short, beautiful (and now viral) video that “Down’s syndrome” are not ugly words. They are words of great and extraordinary worth. Words that speak of love and joy and a life worth living. These women and their unique and beautiful children are collectively transforming the landscape.
Downright Joy 