As I prepared to write my first blog, my aim was to capture the moments of hilarity and chaos that we seem to find ourselves in, but I firstly I want to explain when all this began. For those who find themselves in a similar situation, hopefully our experiences will be helpful...
It was 2008, I was 24 years old and working as a mental health practitioner with a fabulous community team when I discovered that I was expecting our first baby.
We made all the usual plans that any expectant parents make! We moved in to our first house, and began to make plans for our future!
In February 2009 we were having the worst snow in 20 years!
Living in a really rural village, snow would render us unable to get out of the lane!
Thankfully we got to the hospital without incident, as did my mum. He was born weighing a tiny 6lbs 2oz, to us looking healthy and happy!
It was only really then that I noticed that during the last stages of labour our room had filled with nurses and doctors.
As soon as George was born he was taken off to the side and examined. My mum said she saw the nurse looking at George's palms. You may or may not know this is a trait of Down's syndrome, it is also a trait of fetal alcohol syndrome.
In a moment of panic I asked my mum if she thought this was because I said during labour I just wanted to be at home with a glass of wine?! She laughed and said of course not this is probably all just routine!
I was handed George and was instantly overwhelmed with that unconditional love and connection that starts to wash over you.
When we were taken up to the ward, Mark followed with a bloody ridiculous sized blue dog he had bought George! The snow was falling heavier now, and worrying that Mark wouldn't make it home I suggested he start his journey!
It was about 4pm and I was sat with George when a doctor and nurse came up to me! He asked if Mark was here and I told them he'd left because of the weather.
It was then when he sat on my bed and said they thought George had a "chromosomal abnormality".
Feeling a little surprised I asked if he meant that George had Down's syndrome? Yes, he replied and began to explain why they thought that.
'He has a low birth weight, he is floppy, he has a shortened nose bridge, and a large looking tongue, and almond eyes.'
'No' he said, 'George's hypomuscle tone is unusual'. He then asked if Mark could return so the doctor could look at him. You see the thought had crossed his head that if Mark was Chinese in ethnicity or had Chinese looking features that would explain away the 'funny eye'!
I often think back to this doctor and think that he really did get the short straw - Telling a 24 year old girl, who was on her own, that her baby has Down's syndrome could not have been fun!
However he really did make a hash of it, because he then just got up and left this poor nurse sat with me not knowing what to say any more than I did.
I'd only told Mark as I didn't want to worry family. It was just me and George getting to know each other!
Watching all the other mums spending their night up and down changing nappies, feeding milk. I realised my baby right now at this moment was no different from theirs!
Mark came back the next morning and we were ready for a day of tests and telling people our news!
I sent a text to my sister to tell her, I honestly never thought that this was a bizarre way to tell her or that she might be upset! I think because, to me it was no longer scary or unknown, I presumed others would feel the same. So when Claire called me straight back in tears, I initially thought her sniffing was because of a cold!
Our parents were told as was family and close friends! People's reactions were so different, and to be honest that for me was the hardest part, trying to manage other people's emotions and reassure them that we would be ok.
George had blood tests and scans on his heart and bowel. The tests confirmed that George was our T21 superstar!
George was suffering from jaundice and needed to feed more, however he found feeding difficult!
Due to his low muscle tone it took him an hour to take an ounce of milk, then he would be so exhausted he would fall asleep.
After taking all that time sitting with him, keeping him awake, he would so often vomit most of that feed back up again.
It was a tiring few weeks but the progress was there.
Each day he was getting bigger and started gaining weight really well.
In the run up to George turning 6 months my life wasn't too much different than my friends with their babies - we spoke about the same things, sleepless nights, smelling of sick, worrying about starting weaning!
Those friends walked my journey with me and treated us no differently. I am still friends with most of these people now and they probably have no idea how much they helped in those early days. So if you guys are reading this now thank you! Thank you for those days in mum and baby groups, thank you for those days we visited your house and you didn't mind me moving all your things to higher levels, sweeping every tiny speck from your floors as George would pick up the tiniest bits and choke on it!
My one bit of advice to anyone with difficult things going on would be to surround yourself with people who let you just be you!
Gone are the days you can worry about silly, trivial dramas.
Lovely, honest kind people will see you through anything!
I was so lucky to know these people, old friends and the new friends I meet on this journey!
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