Once upon a time there was a wicked old woman who refused to do as she was told and behave nicely in the way that all good women are supposed to. Like all the wicked women in the world who refuse to behave nicely and do as they are told, she lived on the outer fringes of the community, in a little gingerbread cottage deep in the woods.

Okay — so the wicked old woman was, is, me, and the house I live in isn’t exactly a gingerbread cottage in the woods, it’s more of a gingerbread semi-detached beside an A-road where some woods used to be. I live there with four other adults, one child, one Guard Pug, who is considering biting your face off but might just content herself with giving you side-eye so bad you slink away in shame, and three rats (because nothing says degradation and squalor like the presence of rats). We are the family you do not want to be. Mine is the life you do not want to live. Or so the world will tell you. I will simply tell you what my life is like and let you make up your own mind.

But it wasn’t always this way.

‘You’re so lucky you live in a nice, normal family.’
How I laughed when one of my daughter’s little chums said this to her. But I suppose, on the surface, we did look like the archetypal, Ladybird book, Topsy and Tim, ideal family: a mum and a dad, only ever married to each other; two children, a boy and a girl; a three-bed semi with a family saloon on the drive; we even had a cat just like Postman Pat’s Jess.
Only the Alpha Mummies and Daddies on St. Thingyface’s PTFA had any inkling that things were not as plastic-perfect as they appeared: those mummies who asked us, with a look of studied concern and a patronising head tilt, ‘how are you doing?’ but behind our backs were agitating for our son’s removal from the school.
At the age of seven-and-a-half he was diagnosed with an Autistic Spectrum Disorder, and we were cast adrift with no rudder, no oars, in danger of sinking, with no help or support of any kind except what his mainstream school were able to give us. I don’t know whether to laugh or cry when I see ‘a shoutout to all those warrior autism mums’ – I would happily, merrily even, have fought tooth and nail like the harridan that I am for even the smallest bit of help for my son but there was none to be had then, not for a child with autism but no learning difficulties. No agency or service had a remit to work with families like us. We were on our own. As it turns out, he probably does have specific dyslexia-like learning difficulties, but this was missed, as was the ADHD which is now his principal diagnosis. And all the while the alpha mummies (and daddies) were circling, planning to confront me en masse at the school gate to intimidate me into removing him. I almost wish they had – I had to deal with being bullied from the day I started school until the day I left and the experience forged me into a granite-faced bitch with a tongue like a chainsaw – but the headteacher got wind of what they were planning and put a stop to it.
It gave me no small amount of pleasure to wave ‘adios m*********ers’ to the lot of them without looking back when our children went up to high school, in the knowledge that I would never have to see them again as my son was going to a faith school that their kids weren’t eligible for. No doubt they would have taken some perverse kind of pleasure from what happened next, but they never got the chance.
It’s become a running joke in my family that my husband stood up in front of a tableful of people at my 40th birthday dinner and said: ‘I’m sorry I haven’t got your present yet, but I want to give you something really special …’
What he meant was that he wanted to get a piece of jewellery made for me, something of my choosing; but the champagne had been flowing pretty freely that day and … well … look, I’m not the first woman who’s had too much to drink and found herself pregnant as a result, and I won’t be the last, but I felt a proper berk getting caught out at an age when I really ought to have known how to look after myself better.
But, once the initial shock had dissipated I started to feel something else — a strange kind of … elation … I think you might call it, at being naturally and easily pregnant at an age when a woman’s fertility is supposed to be in sharp decline. It felt like a reprieve from the ageing process. Maybe, also, this was Mother Nature’s compensation for the recurrent miscarriages I’d suffered when I was younger. I had an instinctive feeling that everything would be all right, just as I’d had when expecting my two older children. This time I dared to trust my instinct, and I was determined to enjoy every minute of my pregnancy (just as soon as I’d stopped throwing up).
There’s always got to be at least one doomsayer, though, hasn’t there? Suddenly I was surrounded by them: the medical staff were pushing, sorry, advising me most strongly to have the screening tests I’d declined with my other two, and my mother was working herself up into a state of frantic anxiety. They were all saying the same thing in roundabout ways:
‘Don’t you know what can happen when women have babies at your age? Imagine if you had one of those Down’s Syndrome babies – Oh, whatever would you do?’
I already knew what I’d do – just bloody well get on with it, that’s what. I knew I’d love the baby as soon as I saw it, heck, I already loved it, and because of that I would cope with whatever came my way. But, I agreed to a nuchal scan just to reassure everyone that there was no need to worry (or, let’s be honest, to shut them up and get them off my back so I could get on with growing my baby in peace).
The result of the nuchal scan showed that there was a 1:12 ‘risk’ that the baby would have Down’s Syndrome. That wasn’t the news that I had been expecting to hear, I’d felt so confident that everything was fine.
My husband wasn’t with me, so the consultant offered to see us as a couple the next day, at the end of her antenatal clinic, to discuss our options. She was so earnest, so genuinely concerned for us and our family as she explained the possible medical implications of Down’s Syndrome, and the other implications, the ones that don’t appear in medical textbooks, such as poor quality of life, and marital breakdown. It was obvious that the only ‘option’ she considered viable was amniocentesis followed swiftly by termination if Down’s Syndrome was confirmed. I asked the screening midwife for some information on Down’s Syndrome instead, but she said she had none to give me and recommended instead that I phone a charity called Antenatal Results and Choices. But, when I called them looking for sources of information and support to continue my pregnancy, the call handler described raising a child with Down’s Syndrome as a ‘life sentence’ and asked me whether I thought I would be able to cope with that. She did not attempt to signpost me anywhere else.

And from then on it felt like me against the world; I would never have believed that a woman in this day and age, particularly a married woman, would have to fight to be allowed to keep her baby. But that’s how it was, so strong was the pressure to terminate. Freddie was born in November 2008, on the first snowy day of the year, and his diagnosis was confirmed in the delivery room.

And now, here we are. Freddie is healthy, my husband and I are still together and looking forward to celebrating our silver wedding anniversary next year. Life has continued, moved forward, progressed – we’ve both university graduates now, in my husband’s case twice over (he has both a BA and a BSc to my one measly BA, but I did get a prize for outstanding achievement, so there). We are still incarcerated in suburbia, albeit in a bigger, more higgledy-piggledy kind of semi, one which stands, with appropriate quirkiness, back-to-back with its adjoining neighbour, side-on to the road, because that’s how we roll. There are three cars in the drive now, though, as our adult children (as well as our daughter’s partner) live with us by choice.

This is family life as NOT seen on TV.

Welcome to my imperfectly perfect world. 

3 thoughts on “About

  1. Khrystal Davis

    Thank you for the introduction to Freddie. I found you via your comment on “I’m just like you, but maybe a little more tired.” I share your view on the post. I’m glad you posted your blog there. How old is Freddie?
    I am the mother to four children, and step-mother to another. I am a special needs mother to Hunter, our youngest at 3. Hunter is also terminally ill. You can follow Hunter at http://www.facebook.com/Hope4Hunter
    I just started my Blog, Rare Words. My mission is to provide hope, support and advocacy to those with rare diseases. http://www.hunt4acure.org/rare-words-3/
    I subscribed to your blog. I look forward to learning more about Freddie, and your family life with him.


    1. kerryfender Post author

      I have three children, though the other too are much older ( I don’t usually tell anyone outside my close circle this, because he likes to decide who knows, but the eldest has Aspergers). I am sorry to hear that Hunter’s condition is terminal, but I feel sure, reading your comments, that the life he has is filled with love, joy, acceptance and compassion – and fun. I wish you all the best and will be following your journey via your blog.


    2. Khrystal Davis

      Thank you for following my blog Kerry. However, my blog is now at hunt4acure.org If you would follow there, I would greatly appreciate it, as there will be no new content on the blog that you followed. Thank you!

      Liked by 1 person


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