Our choice we won

​I’m not sure I can watch Sally Phillips programme on #downssyndrome sure its great but the process is not something I want to relive.

The path to Kara wasn’t an easy one but even if she had the typical number of chromosomes her life wouldn’t have been easy. 
We went through process of receiving an ante natal diagnosis, internalising it, challenging it,embracing it. No easy feat. 
She is the best advert for #downssyndrome I know. And unlike the vast majority we chose to give her to the world. 

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Old fashioned common sense

​Lots about prenatal testing. I did speak to a couple on an up coming doc on bbc 2 on Wednesday. The best advice was from my gran who said look your baby will always have friends and another friend who said your child will look a bit different and take longer to learn stuff. Basically true.

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These may seem like trivial usage of words, but they are important in changing perceptions of people with Down’s Syndrome. Kara is not suffering from anything. She may be primarily nonverbal but she understands a lot and is more skilled with sign language than I am. 

http://www.downs-syndrome.org.uk/about/terminology-guide/

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Trolls…

​I ignore trolls on the Internet now but I do make formal complaints if I hear it in public. To be honest most people writing this rubbish aren’t exactly talented or charismatic individuals. Childen with DS will always have more friends hope and love than these rather sad and pitiable people

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Who rules the world…

​We were late having dinner last night and were watching a film. Kara just walked out, back in and plonked a frying pan on Sara’s lap 😂

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Brexit…

The concept of the nation state? I’m struggling with it I really am. Immigration rules everywhere class my daughters differently. That’s my definition of the nation state. Something which classifies, separates and excludes.
It’s against EVERYTHING we stood up for when we elected to keep Kara. They should have the same opportunities to achieve their potentials in life.
Now, the EU did not challenge that. France, Italy etc are as discriminatory against people with Down’s Syndrome as America, Canada etc but being in it gave us a shot at changing that. Brexit changes everything. Continue reading

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Something Special

It was two years ago this week our lives changed after the high of the 3 month scan. Kara’s been great thankfully but those 6 months between initial results and birth were horrible. Constant stream of negative information, trips to hospital, probable open heart surgery. The worst part was having to go to Leicester and be treated like lab rats. Fucking hell. Derby Hospital foetal medicine department were great it has to be said.

When we were told that results weren’t what we were hoping for – and they’re weren’t let’s be brutally honest – I was shocked and stunned, disengaged. But I had an earworm – a little tune going through my head. The theme to the kids show Something Special which shows kids having fun. I think Justin had a profound influence on me, making kids happy is what it’s about no matter what. And Kara is something special she really is xxx

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