By rights my child should be talking by now. She’s 8 years old you see.
By rights she should be running around; climbing, jumping, falling and scraping her knee.
By rights these are skills that are just delayed.
She’ll get there in her own time, don’t fret.
Her extra chromosome is championed by those of us in the know. Though I think even we get it wrong by the examples we hold up for inspiration:
Actors, dancers, TV stars, athletes, some are even politicians. Look how much these people with their extra chromosome are contributing!
As if they need a reason to be here.
Nothing to fear they tell me; she’ll make her own way in this world like them.
By rights.
By rights my child shouldn’t even be here. Such is the overwhelming view of the world to people like her.
By rights I could have deleted her life. I should have done so, according to some and by rights for which others have fought.
My choice? My right not to do that?
Of course! But you’re on your own.
Stop. Let’s go back to the beginning, where it all seems to go so wrong.
So very wrong and not at all about rights.
My child’s very existence is a cry to be loved.
She is not to be measured on a scale.
Scales of achievement that judge her, proclaiming her worth in how much she can bring to the table.
By rights she may never measure up to societal scrutiny, or even that of her own community. Who knows when or if she will talk or run?
Truthfully, she is not here by rights – for society says she has none.
She is here by love.
It is love she is attracted to. Not achieving or being the best. She has no desire to acquire more knowledge or power or fame, or the rest.
She has a desire, a need to be loved. Let’s face it, don’t we all?
She is not here by rights, she is here as a gift.
A priceless gift of discovering that to love is not always easy, but is of greater value than anything else.
Tell me…. what gift was ever a right?
“Every child, every person needs to know that they are a source of joy; every child, every person, needs to be celebrated. Only when all of our weaknesses are accepted as part of our humanity can our negative, broken self-images be transformed.”
―Jean Vanier, Becoming Human
I have a nostalgia for certain 80s & 90s American TV sitcoms. The moment I hear the opening few bars to, say, Cheers, for example, my mood lifts, however I’m feeling at the time.
Set in a bar in a Boston, the regulars and the workers all share their lives and experiences with each other. The highs, the lows; the trials, the triumphs. If, like me, you stayed the course of 11 years and 275 episodes, you got to know and love each character. The bar, the decor, the stories, the romances, the heartaches, the people. That theme song:
Sometimes you want to go
Where everybody knows your name
And they’re always glad you came…..
I felt sad the day Cheers ended. Of course it had to end. Everyone was getting older for one thing. Nothing stays the same. Life moves on. Still, I was sad.
This week, my daughter, Hazel, moves on from the only school she’s ever known. She’s been there nearly eight years; since she was two months old.
It’s her school but to us it’s so much more. It’s a place that has not only nurtured, cared for and educated her but us too. A family centred school.
It’s the place that scooped us up and surrounded us with support in those early, traumatic days when she was a poorly baby. The days when we struggled to come to terms with her diagnosis of Down’s syndrome and of what we mistakenly thought that meant for her future, for our future. I was very focused on that diagnosis back then. Unhealthily so. Hazel’s school is the place where I learnt that her diagnosis was not nearly as important as I first thought. It’s the place that helped us find, adjust to and embrace a new ‘normal’ in the midst of all the uncertainty and upheaval that we were facing. It’s the place where I found hope for a new kind of future; a joy-filled one.
A practitioner from the school came to visit us when Hazel was around nine weeks old – barely just home from the hospital NICU – to invite us to join their baby group. At that point I was still in a state of shock and unprepared to be thrust into a world of disability and special needs, let alone specialschools. I remember asking her about the other children in the group. What were their diagnoses? What did they have? What was wrong with them? And though I may not have used those exact words, it’s what I was thinking. I’m so ashamed of those questions now.
Her upbeat answer surprised me: Oh, I don’t know!
Actually, I’m sure she did know, but the children’s conditions were not foremost in her mind. Their names, however, were. She knew them by their names. Harry, Ruby, Jacob, Louise*……children. Each with a name, not a diagnosis.
This school is a place where everybody knows your name.
And they’re always glad you came.
Mainstream education, or indeed society, has much to learn from a school like this. There should really be no need for a policy on ‘inclusion’ when your starting point is the child’s name and not their disability.
This school is a place that has grown so familiar to us. It is our safe place. Our refuge in the tougher times when we’ve needed a shoulder to cry on. Our happy place when there has been so much to celebrate. A place where many new friends have been made.
So many joy-filled days.
Treasured memories.
Hazel’s happy place.
And as we now must say goodbye to this beautiful, caring, extraordinary, award winning school, we are sad; though we know it is time for Hazel to move on. We are filled with gratitude for Hazel’s teachers, therapists and support staff; past and present. Whenever I see the word excellence I think of them. People who continually go above and beyond their official duties and who are, without doubt, the reason my tube fed, disabled daughter can now walk a few steps or even eat some actual food. People who have crafted and shaped a hope-filled future for Hazel. People who care deeply about all the children in their school and who constantly look for ways to bring out their full potential.
I love how Stephen Kelly, writing about Cheers in the Guardian in 2018 puts it,
“Cheers, after all, always knew how to recover from setbacks. It was sturdy, consistent, familiar – a place where everybody knows your name.”
Thank you to every single person at Hazel’s exceptionallyspecialschool.
We’re so very glad we came.
“Every child, every person needs to know that they are a source of joy; every child, every person, needs to be celebrated. Only when all of our weaknesses are accepted as part of our humanity can our negative, broken self-images be transformed.” ― Jean Vanier, Becoming Human
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.
Downright Joy 