Tell It Right

This post has been one of the hardest to write. I’ve been tinkering with it for days. A lot of pressure to tell it right or as my friend says #keepingitreal

Some time ago I had the opportunity to help the DSA with their “tell it right” programme. Basically I went to two hospitals with other parents and explained what Down’s Syndrome means to me.

I told them our story and how we felt. I showed them the photos of our gorgeous daughter. Of how amazing she is. How she has changed our world for the better. How we weren’t supported at the time of her birth. What could have been done better.

After one session, a midwife approached me and apologised in tears. She felt that she had let me down and others like me. She hadn’t. She just didn’t know any different. She had assumed that DS was a bad thing. It’s really and truly not. She knew what to say and not say next time.

Another midwife told me that it would have been more helpful if more midwives were allowed to attend the course. The ones there, had to fight to go. And the doctors nowhere to be seen.

Given the NHS stance at events like this, where do we start?

We have to change society.
How? By education.

If we don’t share our experiences in life, then life will never improve.

I hope by participation in these courses that little by little we as parents can help to change perceptions of DS within the medical community, and thereafter society at large.

I remember reading in the new parent leaflet from the DSA that there were lots of questions that new parents may want to know. And as lovely as that leaflet tries to be, it didn’t strike me as particularly positive. For me it should shout out CONGRATULATIONS!! Any baby born is a blessing. Who cares about chromosomes? Life is a miracle.

Never say sorry when a baby is born. Never pity a new parent.
Down’s syndrome isn’t bad. It’s a little bit extra. It’s a fun ride; yes, at times frustrating and scary, but isn’t every child’s life like that?

And then there are these new tests. The non-invasive blood ones that promise to accurately give you an answer whether your unborn baby has DS.

I’ve been brooding over these tests for some time. Friends will have seen me post on Facebook about my views on aborting a baby purely because they have Down’s syndrome.

Now let me make it totally clear – I do believe in the right to choose. But I believe that any choice should be an active choice, a properly informed, totally unbiased choice. Where prospective parents get the chance to see the reality and not rhetoric and medical fear.

Massive confession time – I have always said that I am relieved that I never had the choice with Evie. That I didn’t know that she had Down’s syndrome before she was born. I AM SO INCREDIBLY THANKFUL FOR THIS.

I will always bear the shame to say, that there was a strong possibility that I would have aborted Evie 😦
It sickens me to admit this but I always tell the truth.
If I can’t tell you the truth then how can I expect people to believe me?

I would have thought that a person with Down’s Syndrome could not have a quality of life and I probably would have aborted my baby. How evil am I? Look at me now. My child with Down’s syndrome is the centre of my world. I am beyond lucky to have her. She is the most beautiful child.

Before Evie I was a nasty, selfish, self-centered, career-orientated, bitch of a woman. Now I am better. Not perfect (gosh that kills me to say) but I am better. 

I LOVE differences in people.

I LOVE how no one is the same.

I LOVE how Evie tests me to my very limits with her behaviour.

I LOVE how she changes people’s perceptions and attitudes around her.

I LOVE her extra little chromosome.

I LOVE this life.

She GAVE me this.

Her extra chromosome gave me a chance of being a better person. 

I am better and I am better because of her.

I KNOW the rhetoric says “you can better prepare” if you find that you have a positive test result. 

But the information given to parents on those occasions isn’t positive. It isn’t. It isn’t unbiased and balanced. The professionals are ill informed. The information speaks of risk….is it a risk to have a baby with Down’s syndrome? That’s a risk? 

I have lost count of how many mothers, I know of who were told to abort their babies because they have Down’s syndrome. Some were asked repeatedly to reconsider. One in particular was left alone once she made her decision to keep her baby. She was given no support or referral to DS Groups.
What is so wrong with Down’s syndrome?
Why victimise people with DS (because that’s what society does!). 
Why does society fear disability?

In my opinion for what it’s worth, there is no point in having these tests, if the tests aren’t used morally. If the tests aren’t used hand in hand with fair, honest information you may as well take your test and stick it where the sun doesn’t shine.

I do know of other cases (few and far between sadly) where a test has been undertaken by parents so they can prepare if their baby has Down’s Syndrome. So they can get the best support and research ready.

I know of other cases where parents have researched and decided that they didn’t want to keep their baby. That is their decision. I don’t know their personal circumstances. I respect that they researched, even if they decided that they couldn’t keep their baby. Even though that choice would not be mine. I am in a privileged position. I see what gifts and delights an extra chromosome can bring.

To abort my baby because of Down’s syndrome would have been the biggest mistake of my life. Thank god, thank whoever that it didn’t happen to me. 

Having lost Joshua through stillbirth, I have seen what loss is. I see what losing a beautiful baby can do. I feel his loss every single second of every single day. I cannot justify terminating a pregnancy for reasons of a genetic abnormality where the baby’s quality of life is high!

The way that these tests are being talked about seems to seek to eradicate DS. That’s wrong.
Do we seek to eradicate ginger hair (see previous blog post for my love of gingerness)?
Do we seek to eradicate the weak?
The socially infirm?

Science is occasionally way too clever for it’s own good. Just because you can do something, doesn’t mean that you should. If the tests were devised for good (diagnosis and support) then fair enough. But from where I’m standing it’s not.

I have said it before and I will say it again….Down’s syndrome rocks….who is to say that you don’t have a genetic difference? Think about it….you could be targeted next.
And finally who decides that we should all be the same? It would be a very boring place. The world is more exciting with a splash of colour…..
sock B&W

4 thoughts on “Tell It Right

  1. I too say I am extremely luckily that I didn’t find out about Baby’s DS until she was born because then I never got the choice because I don’t know what I would have done and I probably would of made the biggest mistake of my life.
    It’s nice to know I’m not the only one who felt this way. Specially and you like myself see your little girl as the beautiful gift she is. Great post x

    Liked by 1 person

  2. I found out about my baby’s disability (not Down Syndrome) before she was born. I was glad
    to know so that I could prepare. I was very wrong. I couldn’t prepare. Nothing prepares you. There are still today new challenges that I have to hop on board with. New things to research (today’s topic is sandals), new behaviours, new needs, new doctors/therapists/professionals entering her life. It’s ongoing. But for me, I’m still glad I knew, I’m just not sure why anymore. You’re not evil, you’re human and we all learn through experiencing and feeling. Just keep keeping it real xx

    Liked by 1 person

  3. I too am glad I did’t know. I too also think that these conferences are always ‘preaching to the converted’. The docs and midwives who most need to go are never there. But we will change their practices one ripple at a time. Keep up the good work.

    Liked by 2 people

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