Tuesday, 23 June 2015

Proud Moments - June 2015

There's a lovely little thing that happens every month in the 'Future of Downs' Facebook group. 

We celebrate our children's milestones and share what's made us proud. We do this on the 21st to represent the three copies of chromosome 21 present in Down's syndrome.And there's no such thing as an achievement too small. 
There's a whole lot of love and pride bursting from the members every month - and quite rightly! 
Proud moments happen everyday.  I'll be sharing ours on the 21st of each month. 

Earlier this month, we found out that Ella needs glasses. We've known she would end up with them one day as both Ian and I wear them. At her last eye appointment the decision was made to start her wearing them now so we've got some time to get her used to them before she starts school in September.  The glasses she's been prescribed are bi-focals which are recommended for children with Down's syndrome. She will take time to adjust to them and may be a little more clumsy while she gets used to wearing them.

I'm glad we have time for her to adjust to them as she's not exactly keen! She's wearing them little and often for now and hands them back after a few minutes with an added 'don't like it'! Nursery have been great at getting her to wear them too.

She looks super grown up and cute in them though and we will keep on going with them. I am sure by the time she starts school she will be wearing them most of the time.

In other news, her speech continues to improve and she's suddenly got her head around using you, me, yours and mine correctly. And both girls and Ian made me very proud at our friends wedding this last weekend. Ian was one of the best men and looked super smart in his Father's Day present (new suit!). And I had several lovely compliments on both girls from other wedding guests which was lovely to hear.

Sunday, 7 June 2015

Sliding Doors

These are my two babies at their 20 week scans...

Look very similar, don't they?

Both loved, wanted and unique.  However, one of them is deemed by medicine and society to be less worthy of life...

I've wanted to add my thoughts on the recent developments relating to the non-invasive pre-natal testing for Down's Syndrome.  I've just not been sure how.  There are so many well written blogs and articles on the subject and a lot of what I am thinking and feeling has already been said by somebody else.

A test that promises a 99% accuracy of detecting a chromosomal abnormality in an unborn baby with no risk of miscarriage. What's not to like about that?  

We all make decisions every single day of our lives.  What to eat for breakfast? What to watch on TV? Where to go on holiday?  On the surface, they are all small and insignificant choices we make without even thinking about it.  

But what if the next choice you make or decision you take changes your life? Choosing Marbella for your holiday instead of Rome and meeting the love of your life, choosing redundancy only to land your dream job weeks later.  There are also the choices we make or events that happen that we then don't have any control over. Missing your train or taking a wrong turn may lead you somewhere new or unexpected 

These defining events happen to all of us throughout our lives. It's usually with the benefit of hindsight that allows us to single out the choices we made or an event that led us to where we are and who we are today.  To look back and see in black and white that fork in the road - the path you chose versus the path you could have taken...

There was a decision I made, around this time 5 years ago.  I call it my 'Sliding Doors' moment. A decision I can now say altered the course of my life and our family's life. 

In a room with a midwife, about 12 weeks pregnant I was asked if I wanted the blood test that screened for Down's Syndrome.  I was 28, healthy and had no reason to think I was 'at risk' of having a baby with any problems - besides, Down's Syndrome happened to older women, right?  

I politely declined the test and didn't really think any more about it.  At the time, the test was a stand alone option where I was having my ante-natal care.  The nuchal translucency test now used in conjunction with the blood test as standard was then only offered to women over the age of 35.  There was no discussion with the midwife, she didn't explain my 'risks' or give me any further information about the testing or about any of the chromosomal abnormalities the test would look for.  With hindsight if I had been given more information about the tests, I may have decided to have them.  

And with the results of those tests, I hand on heart do not know what I would have done.  

I am so grateful now that I never had that information before Ella was born.  It is well reported how women are not being given the information and advice they need to make an informed choice after receiving a positive diagnosis during pregnancy. Data suggests that a massive 92% of women who find out their unborn child has Down's Syndrome go on to abort their pregnancies.  

A lot of the blame for this lies with the medical professionals who are 'caring' for these women and some of the blame with the way society as a whole views and portrays disability. So much more should be being done to educate staff, challenge current views and change the culture within the NHS towards women given a high risk screening result or a positive amnio/CVS result for Down's Syndrome.  There is a lack of understanding of what Down's Syndrome is, negative and false information being offered to women and very little information given as to where they can gain more support or advice in order to make an informed choice.   I also know parents who have been given a positive amnio result and been offered a slot for termination in the same sentence. 

From a purely selfish viewpoint, I am glad these more accurate, non-invasive tests have been developed.  After having Ella we were told our chance of having another child with a chromosomal abnormality was 1:100 (about ten times higher for another woman my age).  

I knew any decision I would  have to make in the future regarding pre-natal testing would be based upon how I felt at that time.  When I found myself pregnant with Lucy, I knew that I had to know one way or the other so I could feel more at ease during my pregnancy and know what to expect. I had the triple test which came back as 1:330 so decided to have an amniocentesis - with all the worry and guilt that carried with it.  It was an awful period of time and one that, thanks to these new tests I won't have to put myself or Ian through again. 

For women in my position, the development of these tests means we no longer have to put our unborn child at risk to get a definitive result. 

A small silver lining to the black storm cloud these tests have created. 

Monday, 1 June 2015

The 'Magic'

A couple of years ago, I nursed a lovely old lady. I'd not met her before and while helping her to have a wash, we got talking about her and her family. She told me about her husband, their two grown up sons and that her oldest son was born with Downs Syndrome. 

We talked a bit more and she asked me if I had any children. I told her I had a little girl called Ella who was two and that she too has Down's syndrome.

I'll never forget her reply, she took my hand, looked at me with a big smile and without hesitation said one word...


I knew exactly what she meant, but I couldn't even begin to try and define or explain it to you. It comes from a shared experience, an unspoken bond. A complete understanding without the need for words or explanations.
I met her son on several occasions during her stay with us and was inspired by their story - so many children with disabilities born in his generation were hidden away or given up at birth by their parents because that's what they were told to do. This family had never seen that as an option and their eldest son had been loved and raised by them and given the same opportunities as his younger brother.  The lady died some time later in a hospice but I still think of her and her family often and wonder how her son is getting on.

I Wish there was some way I could bottle up and sell the magic that is having Ella in our lives. So everyone had the opportunity to experience it.

There'd be a disclaimer though... With that magic, comes emotional, physical and mental turmoil on a daily basis! Well, not all the time but we've certainly had a challenging time of late.

She's pushed me to my limits over the last few weeks - frustrated me with her defiance/reluctance to do things, worried me when she was ill and she's constantly wanting my attention or supervision - I hear 'mummy' around 243,000 times a day. And night. Our sleep is disrupted and she often ends up in bed with me in the early hours. 

When she's challenging me, It makes me feel I'm not doing enough for her. My overriding fear is that I'm failing her - by not spending enough time with her, by going to work, by having to divide my attention between her and her little sister, both with different needs and expectations of me. And a million and one other reasons too. 

And then in and amongst the frustrations, tears (mostly mine) and chaos come those little moments of magic - an unexpected hug, her smile, a new word, singing 'Let it Go' with her sister in the back of the car, trying to ride her scooter...
 or just a selfie with mummy xx

This post was subsequently published on special needs site 'The Mighty' and can be read here
Related Posts Plugin for WordPress, Blogger...