The day you were born, 29th January 2015 was such a big day. Dad phoned and told me that you arrived at 7.05 in the morning.I woke everyone else up to tell them the news, Elsa was fast asleep in her moses basket and was none the wiser that you were here.
At this point you were just a tiny little man laying in a hospital bassinet, we had no idea where the next couple of weeks would take us. You were alright but then you got poorly. You went to NICU but you were too poorly for this hospital and they decided it was best to move you to N&N hospital. They were sure they would care for you better and find out why you, our little Rory was so ill.
We waited, you turned 3 days old and were still in hospital. I sat at mum and dads with Rosie, Ryan, Reilly, Jonny and Elsa watching telly and trying to pass the time and take all their minds off the fact that you were down in theatre. You were there 8 long hours. I waited by my phone for all that time. Waiting for that phone call to say that you were alright that you had come out of recovery. My phone rang and we got the call we wanted. It was Hirschsprung’s Disease. 8 hours to give you a stoma. A colostomy bag.
You, my delicate baby brother, had a colostomy bag. Instead of messy nappies you had a bag. Instead of wipes, mum had a medical supply bag she had to carry round. I say had because 7 months later they reversed your stoma but after your first operation to have the stoma you stayed in hospital for a little while, just under 5 weeks. I collected Rosie and Reilly from school and we walked home. They were so unaware that not long after we got home, so would you. Apart from the odd hospital stay, you have been home ever since. You will be 2 on Sunday and what a 2 years this had been and all because of you!
The things we have achieved, the places we have been and the milestones we have hit. People will say you having Down Syndrome is a bad thing. But it makes you, you. The first 6 weeks of your life have made our entire life stronger. I am different person because of you, we all are. The best thing about this? You are completely unaware of your impact on me, on us.
Rory, people may not realise but it wont take them long to see it but people like you, people with Down Syndrome make everyone else change. Some people don’t like change and that is what they are afraid of. It’s not you having Down Syndrome that they don’t like, It’s that they don’t want such a little man to change their whole concept of life.
To look at you, how tiny you are, you would never think you have achieved so much. We have been to London for ‘Don’t screen us out’, your photos have been shared all over the internet to raise awareness of DS but the one thing we are most proud of is that you went nationwide by being on the front cover of ‘Woman’ magazine as well as an article about you inside. We couldn’t be prouder of you Rory.
I am writing this and watching you walk around the furniture but I am wondering if you will ever read this or will you think I am just your stupid big sister. Either way I am sure I can find a way to embarrass you one way or another!
Written by Rebecca Fisher for her blog, thecoastalmummy.