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But his prescription is long since out of date.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.
Just a few weeks ago we took our family to Disneyland, Paris. The culmination of years of dreaming and pleading from our eldest child, and a venture into the unknown for Hazel, who has Down’s syndrome. Our first trip abroad, lots of strange sights and sounds. We wondered how she would cope.
I’ve always thought that anticipation is as much a part of an event as the event itself. The build up. As a child, I spent weeks, if not months, getting excited about Christmas, or my birthday, or our annual family holiday. My eldest daughter is the same. I encourage her in it. Christmas decorations go up at the earliest opportunity. Surprising her the night before we were going to Disneyland was never an option. I wanted her to look forward. Anticipate. Get excited about what the future held. So we told her we were going, weeks in advance, and enjoyed her excitement as the trip came nearer.
So I’ve always felt a little sad that Hazel is not able to join in the anticipation in the same way her sister does. She has no idea that Christmas might be coming. The night before her birthday passed like any other. No staying awake for hours on end, too excited to sleep. And, on Disneyland Eve, to sleep she went and to sleep she stayed until she was woken the next morning by her sister – who was desperate to get to France as quickly as possible. After all, Aurora was waiting...though possibly still fast asleep in her fairy tale castle.
Hazel wasn’t bothered.
But I was.
Feeling sad and reflecting on what I think Hazel may be missing out on in life is a trap for me. It’s all too easy to start a pity party of regret and over-indulge at the table of if only’s or I wish’s.
And, on the journey to Disneyland, I dwelt on this particular if only and it made me sad. Whilst Hazel, not really understanding where we were going or why we were in the car for so long, just carried on looking out of the window. Happily so.
Fast forward to breakfast the next day and we were sitting in the Hotel restaurant. Eldest child unable to eat for the excitement of all she is about to experience. And Hazel…well, unable to eat full stop. Tube fed since birth and largely indifferent to food. Playing contentedly with a fork or a napkin, I forget which. No idea where she was but seemingly very happy to be there.
And then she saw him. For the first time in her life.
Giant shiny black ears, shiny black nose and the biggest hands she had ever seen in her short life….
A familiar face to millions maybe, but not to her.
Mickey Mouse.
I held my breath. Anticipating Hazel’s panic and uncertainty about this larger than life character. Sensory overload never far away. But the opposite happened. Hazel’s face lit up. Literally. It shone. Her eyes sparkled and joy spread from her face to her entire body. Hands waving furiously, body contorting with delight.
A little girl in love.
Hazel experienced joy. True and unadulterated. A joy that comes in the moment, out of the blue, from nowhere. A joy that knows no build up or anticipation. Exploding, overwhelming, joyous joy!
It blew me away. I can’t remember a moment quite like it.
One of the reasons I love Disney are the larger than life characters with their ridiculous plastic smiley faces, and colourful costumes. They need no introduction. Each one……Pinocchio, Minnie, Donald and Tigger, but especially Mickey, took their time with Hazel. Coming down to her level and gently touching her face. Not rushing on to the next person, but making her feel valued. Welcomed. Loved.
The Disney Princesses couldn’t compete. Hazel’s joy was replaced with an equally priceless look of sheer boredom whenever we met one. Total indifference. The smiles were fake and she knew it. They tried. Ariel gave it her best shot.
Snow White just gave up.
It mattered not.
Mickey and friends were the true joy givers. Unconventional, with their oversized heads, enormous hands and feet, eyes the size of dinner plates. Features that in real life may be regarded as ungainly or even unattractive. Yet these were the characteristics that brought Hazel the most joy. Spending time in their company was a delight.
And now, I wonder if knowing about the surprise in advance would have made the experience any greater for her? I doubt it.
Hazel lives in the moment. She experiences life as it happens and she is all the more joyful for it. More than anyone I know, Hazel lives one day at a time. And, because she does, the opportunities to be surprised by joy are limitless.
It’s always good to make friends with real people from all walks of life.
After all, we have a wealth of recycling facilities to hand. Colourful plastic boxes stacked up by my side gate. Cardboard, glass, plastic bottles, food waste, garden waste can all be dealt with. And, as if that wasn’t enough, a short drive takes me to a clothing bank which sits next to a shoe bank, which sits next to a paper bank.
I really need never throw anything away. Everything has its value, even rubbish.
Recycle, recycle, recycle.
Our planet depends on it. Good for the environment. Good for mankind.
Necessary to our survival.
Do it do it do it.
That’s the message that is rightly drummed into us. Into our children. A world apart from my upbringing when the only thing that was recycled were milk bottles. Oh and Corona bottles, if you could afford them. 10p back in return wasn’t it?
I have a very large bin. Because of Hazel’s medical equipment it is larger than the average family wheelie bin. I don’t always have time to sort the rubbish. I know I should but I don’t. My bin swallows it all up. Gone. In an instant. I forget about it.
Shame on me.
But I guess there will be a consequence – if not directly for me then for the planet. Further down the line. Of course there will. I try not to think about it.
In our recycling obsessed culture, I am rightly looked down on for throwing away my ‘rubbish’. That’s not rubbish, they say. That is of value. It is worthy to be kept. Not trashed. They are correct.
And yetthis same societyhas also deemed what is rubbish and what is not when it comes to people. Life.
90% of babies (found prenatally to have Down’s syndrome), foetuses, cells, call them what you like are deemed rubbish.
Not fit for purpose.
I’m sorry, they say. Just a bunch of cells they say. A foetus; and a faulty one at that. Not important. It won’t amount to much. Too costly. Bin it. Forget about it. Save yourself the trouble. It’s your right. Even if it’s just about to be born, they say, we can deal with it. (Yes really). Try again.
There is nothing more precious than life itself.
So why are so many people wanting to trash it? Chuck in the bin, forget about it, move on.
Keep Britain tidy.
It is beyond painful to acknowledge that there are many many people who would rather Hazel, and others like her, didn’t exist. They would rather she had gone in the bin. Incinerated. They say her life is of no value. Who made them judge of this?
And, with a new non-invasive pre-natal test (NIPT) now available on the NHS, bin day can come around even sooner.
But I guess there will be a consequence – if not directly for them, then for humanity. Further down the line. Of course there will. But they will not think about it.
Simple Definition of humanity
:the quality or state of being human
:the quality or state of being kind to other people or to animals
Afraid. What does the future hold? Will my children be safe?
These are questions I’ve noticed many parents are asking on social media lately. So much to be afraid of. Acts of terror creep ever closer to home. Paris. Long awaited trips to Disneyland being viewed rather more anxiously. Life just got a whole lot more scary.
Fears.
And yet for the parent of a child with additional needs these fears are already known only too well. They have loomed large since the day they were given a diagnosis.
Afraid. What does the future hold? Will my child be safe?
Like me, they stare over their sleeping child and ponder these things. Watching them breathing deeply and securely in their cot or bed. Smiling at the way they are lying or the way they are clutching onto a favourite blanket or teddy. Thoughts so quickly turn to the future.
Who will take care of her when I am gone?
Will anyone love her – really love her as I do, when I’m gone?
Will she be bullied because she is different? Because she has Down’s syndrome?
Will she be exploited? Taken advantage of?
Who will speak kindly to her when she is anxious or sad?
Who will hold her hand or give her a hug?
It’s not uncommon for many parents of children with disabilities to even wish that they outlive their child. They cannot see a future for their child without them being there to care for them.
It’s these fears that threaten to overwhelm me. Blink fast, swallow hard fears.
But they only ever threaten me.
I’m a Christian. Completely not cool.
According to the media and especially social media, I am someone to be mocked. Often laughed at, ridiculed, criticised and increasingly silenced.
I can live with that.
I can live with that because my faith is the only thing that can calm these overwhelming fears. The media can’t. Facebook can’t, neither can Twitter. Other people can’t, though of course I take huge comfort and encouragement in the words and experiences of others on a similar journey, whether or not they share my faith. I am thankful for them and value them enormously.
But, if having faith is a crutch to lean on then I am happy to keep limping. However uncool it may be.
The Bible has two particular things to say about Hazel ‘s life. They are my crutches. Whenever those fears threaten to overwhelm me once more I bring them to mind and lean heavily on them.
Firstly that God uses the weak things of this world to shame the strong.
Hazel is weak, undoubtedly.
Down’s syndrome is often seen as weakness. A flaw. Something undesirable. Something to be got rid of. Unwanted.
Not to God. And not to me. I have already seen how Hazel’s ‘weak’ life compares to the selfish, self centred lives of many ‘stronger’ or ‘wiser’ people. She has already brought more joy into our lives in four short years than some people will bring in a lifetime. She shames many. Each and every day.
Secondly, that God has plans for her life. Plans to prosper her and not to harm her.
Hazel’s life is no accident. She was planned. She has purpose. She has a future.
This doesn’t mean there won’t be problems, or challenges. This doesn’t mean she won’t face discrimination or even hate. But it does mean that her life will matter. Her life will make a difference. Her life will be cherished and she will be loved. I believe what God says. I have to. The alternative is too overwhelming for me.
Shopping lists and signing for deliveries has been the extent of my writing achievements lately.
Weeks of Hazel’s poor health and the sudden serious illness and subsequent loss of one of my dearest friends has stopped me in my tracks. And, though the words have not come so easily, I have at least had some time away to stop and reflect.
Last week we found ourselves on an almost empty beach, having arrived late in the day. The sun was casting long shadows across the beach and the sand was still warm underfoot.
Hazel loves the sand. Did I say she loves the sand? She LOVES it!
The moment we placed her down on the picnic blanket she was off. At speed.
For a child that cannot walk or even stand unaided this was a sight to behold as she bottom shuffled away across the beach. Arms raised as she went; chasing after the long shadow her tiny frame was making in the evening sun.
Have you ever seen the tracks that are made in the sand by baby turtles as they head for the sea? With all their might they propel themselves forward, their little bodies longing to be in the water where they swim freely. A trail of wavy lines in the sand; evidence of their struggle and determination to reach their destination.
Hazel left similar tracks as she crossed the sand.
Before we arrived at the beach we had been in a children’s play area.
I generally hate play areas.
Mostly because they are a reminder to me of what both my children can’t do. My eldest has her own physical struggles with hypermobility. Play equipment has been a huge challenge for her, not least because most of her friends can use it with ease. In Hazel’s case it is often simply inaccessible. Though some playgrounds are more disabled friendly than others, largely their equipment is off limits to her.
Yet here, in the sand, Hazel had freedom. She was not hindered in any way. It didn’t matter that she could not run or walk or even stand up on that beach. Hazel took enormous pleasure from what she could do, from all she could enjoy in her own unique way. She didn’t need toys. A bucket and spade was of no interest to her. The feeling of the sand in her fingers and toes was enough to keep her attention – for hours! She did not tell us how much she was enjoying herself. She can’t do that – at least not verbally. But the joy on her face and the fact she did not turn back for reassurance told us all we needed to know. Hazel was happy. She had all she needed.
Hazel does not eat food. She is tube fed. Food holds no interest for her – yet. But sand….sand would go into her mouth quite happily. And, by the time we left the beach later that evening, she was literally covered from head to foot. Almost camouflaged.
The turtles eventually reach their destination, though it is a perilous journey, full of struggle. They don’t give up. And, once there, they swim freely.
Hazel will eventually reach her destination. She will eventually walk, she will eventually eat. She will eventually talk – even this week she had made advances with this. I, on the other hand, have felt like giving up recently. Too many sadnesses and difficulties to face. I haven’t wanted to keep going. Yet Hazel, as ever, is my little joy giver. It’s hard to stay sad when she is around. And she teaches me so much about perseverance and courage. Hazel doesn’t give up. She chooses joy and is content with simple pleasures.
My dear, precious friend, Vicky, for whom I, and so many others, now grieve, made it across the sand. She reached her destination – far sooner than any of us would have wanted or expected. She knew where she was going and lived her life in the light of it; constantly urging others to make their lives count. Her faith in God permeated every part of her life. Heaven was so real to her, and, when the time came, I don’t think she was afraid to go there. The tracks she has left are permanent ones. Life changing even. I thank God for her, but I miss her so very much.
Hazel is a little further across the sand this week. And so am I.
In memory of Vicky Taylor, who made every second of her one precious life count.
Miss you so very much, but I know you’re having a ball x
Downright Joy 