Downright Joy

Discovering joy in unexpected places – a journey into Down's syndrome, Dyspraxia & Autism


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Funny that.

Laughing boy

Did you wake up laughing today?

My daughter did, just like she did yesterday and the day before that, and the day before that too.

Did someone tell her a joke? There’s no one else in her room. Did she remember something funny she saw the day before? Perhaps. Not sure.

Maybe she was thinking about the bus journey to school and how bumpy it feels as she rides, strapped into her wheelchair. Or maybe she was thinking about the funny songs the Music Man sang to her when he came to her class; especially that one about the pirates- that’s funny. Or maybe it was the sheep on the farm she visits, or the goat that jumped on the trampoline with her one day. Whoever heard of such a thing?! Maybe it’s the strange plaster casts on both her legs that she currently has to wear. They do look kind of funny I suppose.

It’s no good asking her, she cannot give an answer. Though she is nearly eight years old, she has no words you see. And right now, only laughter.

Sometimes she is sad. Sometimes she is grumpy. Sometimes she is in pain. Sometimes she is tired.

Just like you, just like me.

A range of emotions.

But because she is non verbal she has to express them differently.

Unlike you, unlike me.

But laughter, chuckling, giggling, rib tickling, snort inducing, full on raucous belly laughter is very often her first emotion of the day.  I’d love to know what makes her laugh.

Did you wake up laughing today? Or did your thoughts turn immediately to worries?

Fears of the future perhaps, or just concerns about the day ahead. So much to do, so much to accomplish. What ifs and what abouts firing off in all directions in your head before your feet have even hit the floor.

My daughter woke up laughing.

My daughter has Down’s syndrome. Many people think her life is not worth living. They think she would be better off not being born. They called her life a ‘risk’. They said she is abnormal. They spoke as if giving birth to her was some great tragedy.

Funny that.

 

 


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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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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!