Wednesday, 20 January 2016

Nothing To Be Scared Of

Original Post published 21st March 2013 for World Down Syndrome Day.

For those of you who know me, you will appreciate that the last three years of our lives have had many highs and lows. You will also appreciate that we are fairly private people and don't really post much about our personal lives. However today I'd like to share with you... Three years ago I found out I was pregnant which came as a complete surprise, I wasn't ready or old enough (!) to be a mum- the thought if it was just too scary- we had plans-there were places in the world we still wanted to see, our house was one big DIY project with every room requiring a complete overhaul...

Having finally adjusted my mindset to the positives of motherhood and feeling the baby move a few weeks later, the curve balls that we were to be thrown were far from over... A routine pregnancy blood test following our last holiday abroad as a couple was to change things again. The Fetal Centre at Liverpool Women's Hospital invited us to come in to discuss the test results which had shown a high risk of chromosomal abnormality. In short, our unborn child could have and it turned out did have Down Syndrome...

Fast forward three years and last night was a usual busy evening in the Scott household- trying to get dinner at a reasonable time with a two and a half year old who would rather sing 'Wind the Bobbin Up' than eat his dinner (although dessert is no problem for him funnily enough!), who then proceeds after dinner to empty the contents of the kitchen cupboards all over the floor whilst we try and clear the dishes, put the online food shopping away and try and bake cakes for Tim's work cake sale the next day. Meanwhile our 3 month old baby wanted feeding (again!) which meant a pair of hands less to help with the bath, bottle, bed routine. Nothing unusual there (except we don't bake cakes every night) in our usual battle to maintain these routines and have everyone fed, watered and in bed at an hour that is always later than we'd like. We sound like a normal family and that's what we are- a normal family raising a child with Down Syndrome.

Jake was born in September 2010 with an extra 21st chromosome. This wasn't anyone's fault, it was not hereditary, it was just one of those things... Jake was diagnosed before birth with Down Syndrome and a congenital heart defect which would require open heart surgery before he was 6 months old to close a large hole in his heart (it was more like reconstructing his heart to function normally in reality).

We were initially advised to consider terminating the pregnancy before he was born based on the heart condition (which could be repaired) and his Down Syndrome but decided to continue despite the fact that over 90% of people choose to terminate given this kind of news, a figure which always shocks me.

Jake had a rocky start to life, spending his first week in the Neonatal Intensive Care Unit and has had several stays in Alder Hey Hospital following his heart surgery at 5 months old as he struggled to cope with common viruses as he recovered from the surgery. He is a child who has had quite a few challenges in his short life and continues to amaze us with his determination to overcome them and still keep smiling!

In the recent past, a person with Down Syndrome was considered unable be educated by law and in many cases sent to an institution to live. Today's world is a very different place and we have high hopes for Jake. He attends a normal day nursery which he loves and we hope he will attend mainstream education. So far he is keeping up well with his peers and we hope that this continues. Jake loves to play to an audience and is a popular little boy in his nursery class. We are always surprised by people's response to Jake as he charms people wherever he goes. Before he was born I was scared that people would stare at my baby but today am a very proud parent of two lovely little boys!

Today is World Down Syndrome Day. This the eighth year of this event which aims to bring awareness of Down Syndrome and the second since it was recognised by the United Nations. Jake does not 'suffer from' Down Syndrome, he has an extra 21st chromosome which gives him something special and that's nothing to be scared of.

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