08/06/14

Third birthday thoughts

I debated this blog for a long time, even when I had written it, I sent it privately to someone who would be very honest in critiquing it. I hope it doesnt offend as that is definately not intentional. Heart on my sleeve and honest opinion. Thanks Matt…….

Last week was a strange week, it was a week full of a range of emotions. It started with the devastating news that the Australian couple had decided that they had the authority to decide whether a baby was worthy of their family or not, unfortunately for Gammy they discarded him, attached a label and decided he was not worthy of their love and affection.

This originally really upset me, they would have this view of my girls if ever they met them and any reaction other than this rejection would have been fake. I then got angry, how dare they “Choose”, what gave them the right to decide if another human being was worthy. As advances in medicine continue at the speed they are will a UV scan diagnose Asthma, Diabetes, etc. Would a termination be offered if the foetus IQ did not match the expectation of their parents. Where do we stop in the search for a “perfect” society.

I had to withdraw from social networks at this stage as there was every possibility of an inappropriate tweet, Facebook message etc and I knew that this would be the wrong forum to display such emotions.

Instead I came away and reflected. How on earth I got to the conclusion I will never know, but the blame does not lie at the feet of the Australian couple. It is far greater than this, and we recognised this some three years ago; far earlier than the news from Australia. We set up Twincess as we believed that the written press and societal impression was extremely negative towards Downs Syndrome. With this misguided opinion and negative stereotyping is the blame that of the couple?

For all its positives, the internet, can be an absolutely horrific engine that drives fear and anxiety towards any condition. I am sure the couples exposure to Downs Syndrome was extremely limited if any at all prior to the day, they then received the news, the ‘bomb’ regarding the diagnosis had been dropped; so what was the first thing that they would do? “Google it”.

From here the couple would be able to research the medical “Facts” regarding the condition and the terminology would be extremely negative. Would you expect anything different? Downs Syndrome is a condition that the medical world use ultrasound scans to “warn” parents of the fact that their foetus may have the condition. Why would they do this?

The pre-amble to the ultrasounds and the common opinion refer to an “increased risk” as women get older – can somebody please explain to me the word “risk”, the dictionary definition is as follows

“A situation involving exposure to danger / A person or thing regarded as a threat or likely source of danger / Exposed to harm or danger”

Anybody who has met the girls will be able to see that the only danger they create are to poor Finlay our son. They play fight with him all the time, interrupt his play and are generally a nuisance towards him. But he wouldn’t have it any other way.

When you delve further into the available resources exploring the condition it explains medical “complications caused by Downs Syndrome”. Again I have a major issue reference the term “caused”

“a person, event, or condition, that is responsible for an action or result”

Whilst I agree there is an increased ‘occurrence’ of certain conditions in people with DS, they are not “Caused” by it. For example, according to the British Thyroid Foundation 1 in 20 people in the United Kingdom have a Thyroid problem therefore Downs Syndrome cannot be the “cause”!!!

This may seem a pedantic issue to raise, however, for me, TERMINOLOGY is so incredibly important when it comes to perception and opinion. With all of this negativity placed in the hands of the Australian couple are they able to make a balanced decision? I doubt it.

If this was a court of law would the jury have been given all of the evidence? The misconceptions and naivety due to a lack of awareness create such a distorted view. In no way do I condone the decision of the couple however I think part of me has some understanding and sympathy of their rationale.

We vowed to do everything we can to educate about what life is really like and not how the textbook / internet will have you believe. We continue to do this and always will.

By the time I was interviewed live on BBC Radio Lancashire my opinion was far more balanced. I explained how a lack of support, lack of information and a lack of understanding meant that the couple will have been bombarded with negative and scary information. We have always maintained that we never judge any person when it comes to scan’s and decisions, all we want to do is educate and try and offer people an honest platform on which to base such an important decision.

Life is not as scary as is made out in media and in the written form. There are obviously issues but aren’t there with any child?

From this point on I didn’t really keep up to date with the story through fear of evoking more emotions and my head was full, I just wanted to enjoy my girls and let others discuss the morality of the decision.

I think that Abigail in particular, realised that we have had a testing week so on Thursday decided to take her first unaided steps. This put all of the anger and upset into perspective and we are back in a good place again.

I love my girls to pieces and they have made me such a better person because of their place in my life. Our life is not sugar coated in any way, shape or form and there have been struggles for one reason and another, however, I can honestly say that life is so much fun and each day I learn something new.