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.

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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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