My name is Nicola. I live in Widnes, Cheshire, I’m 28 years old, and I’m a second year degree student at Liverpool Hope University. I’m pretty ordinary really. However, when I had my daughter Jessica five years ago something extraordinary happened.
On Thursday 12th February 2004 at 7.10pm Jessica entered the world and my life was thrown upside down, inside out and the roller coaster ride began. It was also the day I made a promise to change the world for my daughter who also happens to have Down’s syndrome. People say she’s special, of course she is. She is mine.
Since the day she was born, I could tell my daughter would be a drama queen and relish attention. We found out the day after she had three holes in her heart and needed heart surgery at nine weeks old. Drama number one. Then she decided she couldn’t be bothered having her milk so Jessica’s Dad had to arrange a 24 hour shift to try and convince her that feeding is a good thing.
She sailed through her surgery. Her personality started to come through and it was then we knew we were in trouble. She learnt quickly how to smile the gummiest, sincerest, widest Les Dawson smile in the whole of the North West, and that allowed her to melt hearts, and get away with murder.
Myself and Jessica’s dad aren‘t together anymore and it‘s been tough at times being a single mother after being with someone for eleven years.
Jess and I moved into our own small house and began a new chapter our lives. Jessica is so sensitive, putting her arm around me when I looked sad. Truth is, she’s always been the one who is there when I am feeling low and she’s my inspiration to get up and grab life. We have our own little laughter filled, silly world. Its an unconditional, loving world.
Continuing on the drama theme, my daughter never fails to miss an opportunity to embarrass me. She tells passers by that ‘mummy’s a bum-head’ or that I ‘smell of poo‘. Thanks Jess.
She is the local superstar and it takes us an extra half an hour to do my grocery shopping because she like to wave at people, stop to say hello, or even kiss random people given half the chance.
I remember one time I turned my back to get some beans off the shelf and when I turned around a little old lady was hugging her in her trolly seat and Jess was patting her back.
She is such a flirt too and her long eyelashes well and truly flutter when boys are on the scene. She has a main boyfriend who she will marry one day, Alex, and three boyfriends in school. Its good to keep her options open.
Starting school was a big deal for me. She goes to a mainstream school and has fitted in like a piece of the furniture. She has an entourage when she goes in through the school doors and systematically children, (and staff) line up to get their morning hug from her. She has got so much love to give.
My images were a stark contrast as to what her actual school days are like. I was torn between steering her direction to mainstream where she might not be able to cope, or do I place her into a special school where I know she’ll be safe. I always knew she had the necessary skills to cope in mainstream school, she’s sociable, friendly, intelligent, willing to learn and copy peers. But I knew she’d always be slightly behind all the other children. My main fear was, and still is, her turning around to me and asking why is she different and it making her sad.
I have always explained to Jess that she has Down’s syndrome. I talk to her about it the same way I do about people of a different race, different hair colour, different abilities, always positive and never judgemental.
But that’s not the world we live in. I don’t want the protective bubble of innocence I’ve built around her to burst, but what parent does?
When people say unhelpful things to me, nine times out of ten I’ll try and put a positive spin on it but every now and again it really hurts because they are talking about my beautiful baby girl. My whole universe.
Back to drama. She was scheduled to have a double squint operation in November 2008 and she ended up having a pacemaker fitted. That’s my Jess. Just when you least expect it she throws something else into the mix.
She really gave us all a fright this time and she very nearly died on three separate occasions. If it wasn’t for the skill and attention of all the staff on ward K2 at Alder Hey I really don’t think she would be with us now, singing to pop songs and dancing in my living room. My world would end if she was not here.
I would like to raise awareness to as many people as I can reach about the factors surrounding people with Down’s syndrome and their families by setting myself a personal challenge. I am going to be walking The Great Wall of China next April 2010 because I want to change the world for my daughter, and other daughters, sons, brothers, sisters, uncles, aunties who also happen to have DS so they will never feel sad that they are different. I will go to the ends of the earth for my little girl. She makes me so proud everyday and I want her to be proud of her mum too.
The Trek itself is an 11 day around trip with and average of 5-6 hours trekking per day. We will be staying in small hotels and farmers houses so we’ll have to walk with a big heavy bag packed with essentials. Still not sure where my straighteners are going to plug in yet! I have already paid £299 myself and I need to raise a minimum of £2950. The money will be going toward the Downs Syndrome Association and anything over this I raise I will be giving to Down Syndrome Liverpool because I have seen the direct benefit this support group has on the local community.
The wall itself stretches 6000km in a dotted line across China and it was begun in the 5th Century BC. It snakes across the beautiful mountains of north Beijing, right in the heart of remote, rural China. The challenge is physically demanding but I am looking forward to every step. When Jess was born I had a tattoo of her name placed on my right foot. It was to symbolise wherever my feet take me in this world, my Jessica will come first. In her honour I want to put my right foot forward and take the challenging yet rewarding steps to help change the world and make it a nicer place to live in, regardless of difference.
In order to raise this money I have a web page http://www.justgiving.com/greatwallofchina4jessica where you can donate on line.
I will be holding a social night (maybe even two!) So keep an eye out for details and lots of other ways of raising the profile of this exciting venture.
Mrs Nicola Williams