More than a feeling….

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additional needs, down syndrome, down's syndrome, equality, family, inclusion, love, pre natal, pregnancy, special needs, Uncategorized

My heart is broken right now. We’ve known about the #NIPT testing for ages and my life hasn’t changed at all. I still have my own family unit that I wouldn’t change for anything, the world is still turning and it doesn’t actually affect me one bit.

Except it has. Surprisingly so. It’s all I can think about. I feel constantly close to tears. I look into Seb’s beautiful trusting eyes and I feel an electric bolt of hurt shoot through me. I think about his lust for life, his infectious wit and sparkling drive to succeed, his wonderful school friends and I feel my heart sink.

Yesterday Seb and I went on an adventure to London. He blagged the afternoon off school and was excited at the prospect of going on the train and seeing one of mummy’s friends.

As usual, we were early. It’s one of my most annoying traits. Early for everything (and indecisive) – which induces anxiety. I knew I had to have my wits about me, eyes fixed on Seb and holding his hand at all times – he could run off at any given moment. And here we were – rocking up to the platform with an age to spare before our train was due.

We popped into the cafe to get some treats. Seb immediately spotted two ladies in the corner, animated and happy, watching something together on a phone. He bounced up to them and they welcomed him into their moment. It turned out to be a mum and her own mum watching a video of their daughter / granddaughters graduation. The girl in the video had just been awarded a Masters and was now studying for a PhD. The pride was in abundance as they explained to Seb what it was all about. They introduced themselves and asked what Sebs name was. They asked him where we were going and I felt my own pride bursting too when they remarked on what a polite little boy he was.

Just time to make the man behind the counter laugh before we dared to step out onto the platform. Seb immediately spotted a policeman and amazingly the policeman sensed his excitement. He came over and the two of them engaged in a wonderful conversation. The policeman explained how he was a Transport officer whose job is to keep people safe on the trains. He let Seb have a go on his walkie talkie and they talked about their favourite iPad games. He told Seb about his own children and asked Seb if he had been to school. And then the train arrived. Helpfully, the policeman told Seb to be a good boy for his mum and to hold my hand and not run off.

We were safe on the train and, after saying “hi” to each person we passed, in our reserved seats. I sensed a small amount of irritation from the lady opposite us. She didn’t make eye contact and I guess we shattered her hopes of a quiet trip with our clattering of stuff onto the table. Understandable really. She too was engrossed in her phone. Most of the way. Seb tried to engage with her a couple of times, but she either didn’t hear or chose not to make eye contact. After about an hour he tried again. This time she did look up and couldn’t help but answer him back.

“We’re going to London” he said, with his rather endearing stutter, “w-w-w-w-where you going?”

“I’m going to London too” she replied. And that was it, she was hooked. They chatted and she didn’t seem uncomfortable at not always understanding what he was saying and the two of them struck up quite a friendship and had quite a big goodbye when the train finally reached our destination.

I saw the effect Seb had on everyone he interacted with. Like a little whirlwind of magic and mischief. A metaphorical dusting of loveliness everywhere he went. It’s something that happens every single day, and has done for the last seven years.

But in between all this there was something else. Whilst we had been waiting for our train at the start of the journey he had wanted to sit on a bench on the platform. There was another lady already there and she kindly pointed out that one part of the bench was wet.

I am sure I probably imagined it, but I saw a flicker of panic in her face as Seb took his place. Swinging his legs excitedly, he looked up at her and said “f-f-f-ank you”. Seemingly flustered and not wanting to chat, she got up and walked towards the platform, even though there were no trains due for quite a few minutes.

As she stood I noticed she was heavily pregnant. I would say about 30 weeks – certainly in the last trimester. My heart sank. All the feelings I felt that followed were most likely unfair assumptions. I was probably being paranoid. I knew nothing of this lady or what she was thinking.

But you see, that’s what all this is doing. It’s not just the introduction of a new non-invasive test, it’s a *feeling*, paranoid or not, that makes me feel sick to my core. A feeling that Down’s syndrome is being “sold” to parents to-be as something devastating, something to be scared of, something to be screened for, something to be eliminated, something to be “dealt” with. It’s a *feeling* that my beautiful boy’s life is seen, by some, maybe most, as inferior, less value, not worthy.

My heart was racing and I was honestly fighting back tears.

I need to stress that my feelings were caused by my own insecurities and anxiety and are most likely grossly unrepresentative of this lady’s view. But THAT’s what this test and all the press and abortion statistics is doing.

And I am broken. And don’t know what to do about it.

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