Although my main aim of these blogs were to capture the moments of hilarity and chaos that we seem to find outselves in. I also wanted to explain when all this began. For people that don’t know me or find themselves in a similar situation I thought maybe our experiences might be helpful someone.
It was 2008, I was 24 years old and working as a mental health practionner with a fabulous community team,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 the lane! Like you could ever predict this is when George decided to make his appearance. Thankfully we got to the hospital without incident, as did my mum. He was born weighing a diddy 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 said to 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 standard! I didn’t think anymore of their checks or the buzz of professionals in and out! I was handed George and I was taken over with that unconditional love and connection that starts to wash over you.
When we were taken up to the ward, mark followed with a rediculous size bloody blue dog he had brought 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’d said 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. Floppy I said, he’s just been born surely all babies are floppy! No he said, George’s hypomucle 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 he really did get the short straw! Telling a 24 year old girl on her own 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 anymore than what I did!!
That first night with George was what made everything better! I’d only told mark as I didn’t wanted 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 text 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 in my head 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 and help other people’s emotions and provide the reassurance to them that we would be ok!
George had blood tests, scans on his heart and bowel. The tests confirmed that George was our T21 superstar!
Those early days were difficult as it is with any new born baby. 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 oz 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 that run up to George being 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!
It was at this time that I made most of my closest friends! Those friends walked my journey with me, treated us no differently. I am still friends with most of these people now and they probably have no idea how much you 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 spek 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 that you can just be you! Gone are the days you can worry about silly, trivial drama’s. 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!