Downright Joy

Discovering joy in unexpected places – a journey into parenthood and Down's Syndrome


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Truth be told…

Words people said when my first baby was born:

Congratulations!

She’s beautiful

She’s got your eyes

So cute

Adorable

Aaaahhhh

So happy for you

So many wonderful adventures ahead of you

Welcome to the world little one

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But his prescription is long since out of date.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.

Each one profoundly beautiful.

Truth be told.

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Poetry in Motion

Butterfly poem

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:

Positive About Down Syndrome

Down’s Syndrome Research Foundation

Wouldn’t Change a Thing

Down’s Syndrome Association

Lose the Label

 


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The Gift

My Gift did not come wrapped in shiny paper, nor tied with a velvet bow.

My Gift was unexpected, it caught me completely off guard.

I struggled to see that this Gift was for me;

Gifts are not meant to be hard.

 

My Gift came with a label or two; one said “extra chromosome”,

The other read “handle with care”.

The second; I tore off and tied to my wrist.

The first, I hid, too afraid others would stare.

 

All around me other Gifts were being delivered,

Amongst fanfares, banners, balloons and flowers.

My Gift came amid hushed tones and frowns, with questions, fears and tears.

Concerns that had not crossed anyone’s mind at earlier baby showers.

 

How could I look after this Gift? There must be a mistake.

Surely this Gift was not intended for me; it was never in the plan.

And yet, in my Gift I saw a reflection of me so clearly staring back;

Azure blue almond shaped eyes, oh those beautiful almond shaped eyes!

 

My Gift. My Gift is, without question,

The best present I’ve ever been given.

Granted, it took me a while to appreciate; I wish I’d realised before.

My Gift has a beauty beyond understanding, my Gift is easy to adore.

 

My Gift keeps on giving and giving.

Occasionally it might be in sorrow; far more likely I find, it’s in joy!

My Gift is priceless, its worth cannot be measured.

If your Gift is labelled the same as mine, it’s a Gift you will learn to treasure.

Hazel Morley (Neonatal Intensive Care, Bristol) 300911 016

For more real life experiences from families of people with Down’s syndrome check out

www.positiveaboutdownsyndrome.co.uk

Find out more about Down’s syndrome from

Down’s Syndrome Research Foundation UK

 


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If the cap fits

mannequin-732631_1280

“But what do you do all day?” Is a question I am sometimes asked and, well, I don’t like to be impolite but, seeing as you asked (and even if you didn’t) I will try to answer it.

Today I went into battle. On the front line. I pushed back into enemy territory. My efforts were resisted but I persevered.  I took ground that was being strongly defended. I claimed it for my severely Dyspraxic child who needed a service that was being denied. Today I was brave, but I was scared.

Today I was a Soldier.

Today I changed a broken feeding tube, in an emergency.  I bathed an open wound and I administered yet another new medication. Today, as every day, I tube fed my child who cannot yet feed. I was scared, but I was brave.

Today I was a Nurse.

Today I learnt all about Proprioception and how understanding it could really help my Dyspraxic child. But first I need to learn to say it. Today was enlightening.

Today I was a Student.

Today I took my child who struggles with reading to Hogwarts. I read two entire chapters at bedtime. We found Platform 9 and 3/4, ate chocolate frogs and fought bravely against Lord Voldemort. Today was magical.

Today I was a Storyteller.

Today I gave my child a haircut at home. A trip to a hair salon too distressing for a child with sensory issues. Today my home became a salon. One with toys and television and iPads. Today I felt like I achieved the impossible.

Today I was a Hairdresser.

Today I trawled the internet. Endless articles on Down’s syndrome, on Dyspraxia, on Sensory Processing. Today I drank a lot of coffee.

Today I was a Researcher.

Today I made some gadgets and gizmos. Stress balloons filled with cornflour, spinning bottles that rattled with shiny shimmery beads and bells, ribbon twirlers, baskets brimming with tactile treasures. Today I had fun making toys that would help my children make sense of the world around them.

Today I was an Inventor.

Today I attended another appointment to discuss the needs of my children. The sixty something appointment this year. Yes, honestly. I’ve counted. Today I was early.

Today I was an Advocate.

Today I wrote a blog highlighting the discrimination faced by those with Down’s syndrome. I challenged the view held by many that my child should not even exist simply because she has an extra chromosome.  I tweeted my MP. Today I got angry.

Today I was a Campaigner.

Today I watched my anxious child find new confidence in an activity she had previously not coped with. Today was brilliant.

Today I was a Cheerleader.

Today I lost count of the phone calls I made, the emails I sent. Today I opened yet more appointment letters on behalf of my children. I cancelled plans, I turned down invitations. I had to let people down. Today I despaired.

Today I was an Administrator.

Today my glass is half empty. Yesterday, it was half full. Tomorrow is a new day.

Today I am thankful for the glass.

Today I met with Trainee Doctors and told them about life with a child with Down’s syndrome. Today I busted some myths.

Today I was a Teacher.

Today I took my child for yet another blood test. I wrapped my whole body around hers as she wriggled, kicked and generally protested about this latest injustice. Today I tried hard not to cry.

Today I was a Wrestler.

Today I cradled my child as she drifted off to sleep under anaesthetic for yet another procedure. Gratefully surrounded by skilled, caring people who only want the best for her.  Today I could not do any work.

Today I was broken.

Today I visited my child at school to watch her assembly. I saw her walk in. Slowly, gripping the hands of her teacher as she stepped tentatively into the hall. Her legs are getting stronger, her world is opening up. She is surrounded by the support, care and expertise of some incredible professionals. Today I thought my heart would burst.

Today I was the happiest woman alive.

I am a mother to two amazing children,  both of whom have disabilities and additional needs, both of whom make me incredibly proud every single day.

Today, and every day,  I have the best job in the world!