My son has Down Syndrome – read Wendy’s story
Wendy’s son has Down Syndrome and she kindly agreed to share her celebration of her life with him.
What is a human being?
NOUN
· A man, woman, or child of the species “Homo sapiens” , distinguished from other animals by superior mental development, power of articulate speech, and upright stance.
Personally, I believe there are many more qualities than this that make up the complex definition of a human being. Empathy, emotion, self-awareness to name but a few. What the above definition does not explain is exactly what is superior mental development? What is articulate speech? If you cannot stand upright are you less than human? Who, or what are we comparing ourselves to and who decides what makes us superior?
So many questions, and why do I ask?
My son has Down Syndrome
My son is three years old, comparative to his peers, he does not have superior mental development or articulate speech, but he is human and he has Down Syndrome. So is he less worthy of life? Current UK law classifies Down Syndrome as a severe disability and therefore allows termination up to 40 weeks. The termination rate following a positive diagnosis of Down syndrome is around 92%, in some countries it is 100%.
Hundreds of thousands of pounds of NHS money is spent improving prenatal testing in order to detect genetic ‘abnormalities’. I understand that they can also detect other syndromes such as Edward’s and Patua Syndrome, which are life limiting conditions and to know of any pre-existing condition can be the difference between life and death.
The problem I have is when archaic information is given at the time of diagnosis from medical professionals and the media generally have a negative view on Down Syndrome. If you are given nothing but a gloomy account of what a child with DS will bring you, how can you make an informed choice?
You may think that I exaggerate but some midwives are actually taught to tell parents ‘it’s bad news’. Some women have been booked in for terminations despite stating categorically that their baby is very much wanted.
So let me tell you a little bit about my son, and then you can decide if he is less worthy of life, and a burden on society who brings me nothing but hardship and misery.
Celebrating a little boy’s life
I’m usually woken at around 6 am with some chirruping sounds coming through the monitor, as I slowly awaken this turns to happy chatter (he’s a mini Alan Carr), and he happily plays in his room until I’m finished showering and dressing at around 7 am. When I go through, he has pulled all his cuddly toys and some books into his bed and he is enthusiastically hugging them and pretending to read to them. I am greeted by an indescribable smile of pure joy, I undo his sleeping bag and hold my arms out. He toddles over to me and flings his tiny arms around my neck, holding on for twenty, maybe thirty seconds of bliss. He hands me a book and we sit on the floor while I read (and sign) the story.
We have breakfast, he scoops yoghurt into his mouth (and everywhere else) while he watches Peppa Pig. Squealing in delight and running around the room when the excitement gets too much. He signals to me that he wants the milk from my cereal, it’s teamwork, he finishes what I would normally waste. At some point whilst I’m getting ready he will jump on my knee, covering me in yoghurt, stroking my hair and bouncing up and down.
When we go out we go swimming, horse riding or perhaps to a wildlife sanctuary where he can interact with the animals. He wants to hug everything, from ducks to donkeys to bunnies to birds of prey. As you can imagine some creatures are not so taken with the cuddles, some relinquish willingly.
My son is amazing, he has a zest for life that I have never seen in any other human, he has a determination that I could only dream of, he is happy, he is healthy and he is loved beyond words. These are the bits that the medical world don’t see, that the media don’t want to see.
Yes, he can be a pain in the bum and sometimes a total nightmare, can’t any child? We have our challenges, I’m a single parent so that is to be expected. But the joy that this tiny person brings to my life, and all those around him, surpasses any negatives or challenges that we may encounter. He is my teacher, my inspiration and my guiding star. He is a human being.
He is more worthy of life than so many, but there is no prenatal test to detect who will be a murderer or paedophile, but sadly there is a prenatal test for an extra chromosome.
So please, don’t feel sorry for me or give me pity, Be jealous, because I get to see life through the eyes of a child with Down Syndrome, I get to see life through the eyes of Elijah with wondrous excitement and awe.
Elijah, you are my world, and without you in it, I would cease to exist.
https://www.facebook.com/thisiselijahUK/
https://twitter.com/ThisisElijahUK
Thanks so much Wendy for sharing your story with us and for showing that yes your son has Down Syndrome but is very much an individual in his own right.
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Kate Davis-Holmes
Award-winning writer, blogger, social media consultant and charity campaigner. Social Media Manager for BritMums, the UK's largest parent blogging network Freelance clients include Firefly Communications and Save the Children UK. Works with brands on marketing projects. Examples include Visit Orlando, Give As You Live, Coca-Cola and Kodak. Cambridge Law graduate with many years experience working across three sectors in advice, media relations, events, training and project management. Available for hire at affordable rates.
26 Comments
Sean McCammon
This whole issue of termination and down syndrome really does get me in a defensive mode. It ‘P’s me off , really , how they can allow termination just because a child may have down syndrome, and what goes me more is the percentage of people that do. What really makes them different from any other life that will be growing in the womb?
These people feel issue that there their child is not perfect? We always said that regardless of if our children had been diagnosed with down syndrome or anything else, we would never have terminated. They are little humans which are so full of joy and love.
Our son was diagnosed with ASD and learning disability. He doesn’t speak but he is full of joy and love and certainly lets us know what he wants – such as ‘Get Up Daddy’ by jumping on the bed and pulling at me.
They should really look at this and change the rules. This is a good informative post by the way.
Wendy
Thank you, I wish there were more people in the world like you!
Imperfect Mum
This was so beautiful! I get to see the world through the eyes of my autistic son and he taught me so much too. I recognise a lot of this. There is no test for autism yet but I wonder if it will come. Thank you for linking up to #ablogginggoodtime brilliant post and series
Wendy
Thank you, our children are the best teachers, the teach without prejudice or hate, there’s a lot that could learn from them.
Becky Willoughby
What a beautiful post and definitely full of reasons to be cheerful!
Wendy
He is definitely my reason to be cheerful, his smile brightens the darkest of days.
Lisa (Mumdadplus4)
What a beautiful post, I hate it when people judge and have ill informed thoughts and ideas, I have a friend with a DS child and she is pure joy to be around. #KCACOLS
Wendy
The joy these children bring is incomparable to anything I have ever seen. x
Kelly-Anne | Mimi Rose and Me
What a beautiful post. Some many are so quick to judge and have opinion without knowing everything they need to. Our friend Scott, has downs and he is just wonderful. Always cracks the funniest jokes, we are always laughing when we are around him. He’s away at college at the most, but when he’s home it’s just lovely.
Wendy
Away at college…music to my ears, more than I ever managed!!
Katy (What Katy Said)
Oh wow I didn’t know they allowed termination up to 40 weeks. I am shocked to the core. My great uncle had Down Syndrome and was the most gentle of souls. He lived until he was 65 and brought so much joy to the world. Such a lovely post, Elijah sounds wonderful. Thank you so much for joining in #HappyDaysLinky xx
Wendy
It’s so sad that parents feel like they have no choice but to terminate, I can only imagine what such a late termination would do to a person, not to mention the poor baby.
Elijah is about as wonderful as they come, and like your uncle, an incredibly gentle soul (with the determination of an ox!!) xx
Ruth - Mummy and the Mexicans
Elijah sounds like the sweetest little boy! I think there is still too much prejudice and too many outdated negative ideas surrounding Downs syndrome. I hope your post will go some way to changing some of these ideas and spreading more positive ones. #kcacols
Wendy
You are correct! Elijah is the loveliest little man I could ever have wished for, and prejudices are outdated and hopelessly cruel. I wouldn’t change Elijah for the world, but I wish I could change the world for him x
Peachy and her Mommy
I used to be one of those people who figured that if there was something wrong with my pregnancy I would terminate it. I felt this way all the way up until the ultrasound. I expected to see a clump of cells and maybe a heartbeat. What I saw were hands, feet, and a face. This was a person and I knew then that terminating the pregnancy would not be an option no matter what result the tests yielded. Thanks so much for linking up at #KCACOLS. Hope you come back again next time.
Wendy
Peachy is very lucky to have you as a Momma, and yes I would have been the same. I never dreamt in a million years that I would be able to cope as an additional needs parent – in reality, he is the most perfect little boy and I couldn’t have wished for anything more x
Cheshire SEN tutor
Beautifully written! This is what they should show people who are expecting a baby with Down Syndrome. Your statistic of 40week termination is shocking.
#dreamteam
Oldhouseintheshires
Beautiful post and what a lovely little boy. #dreamteam
Emma: Ettie and Me
What an amazing and inspiring post. I had absolutely no idea you could still terminate at 40 weeks for DS that actually gives me cold shivvers. Unfortunately our society has this archaic perception of DS which causes fear, that its something that is wrong – or like you say ‘bad news’. If only more posts like these could become mainstream so people can all realise DS isnt something to be scared of. Im so glad I stopped by to read. Your son sounds like an absolute star, nothing beats a good cuddle xxxx
Mrs Lighty
Oh Elijah is gorgeous, isn’t he?! I love that he finishes the cereal milk that would normally go to waste! Sounds very much like a fun loving, happy toddler to me. Lovely boy! Thank you for linking this to #DreamTeam.
Kel @ School Runs & Shopping Trolleys
Elijah sounds like a joy, and, I’m sure he has his ‘off’ moments too, just like any child! My best friend’s daughter has DS and I know life isn’t always sunshine and roses, but that’s parenting, isn’t it? Our life with our autistic daughter is hard, but she’s amazing, and so happy and a joy to be with – I can’t imagine what it’s like having to make a decision as to whether to terminate her or not! A beautiful piece, thanks for sharing with #TheMMLinky
Steph Curtis
Totally agree with you on all this – makes me sad to think about those terminations which are allowed of gorgeous happy babies. Your happy life shines through! Thanks for linking up #TheMMLinky
Crummy Mummy
Those statistics are really shocking – I didn’t realise they were so high. We made the decision with each of our three that if it looked likely they may have a chromosonal problem we would still carry on – life is life & we created it. But I realise that’s easy to say when it hasn’t happened to you #twinklytuesday
Rhyming with Wine
What a gorgeous little boy! I absolutely love this post and we need these real life stories and experiences to break down the archaic and narrow minded opinions of those that cannot see beyond a diagnosis. Elijah sounds like such a joy and this post made me so happy to read. Thanks for linking up lovely x #DreamTeam
carolyn
Up to 40 weeks?Oh my word I didn’t know this. I think that is a disgrace. How could anyone terminate at almost full term
loopyloulaura
Elijah is such a beautiful little boy. I think fear and lack of awareness are to blame for society’s attitude to DS. Thanks for linking up with #stayclassymama