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To My Little Brother With Down Syndrome, Who Changed My Life

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The day you were born, January 29, 2015 was such a big day. Dad phoned and told me 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.

You were just a tiny little man lying in a hospital bassinet. We had no idea where the next couple of weeks would take us. You were all right at first, but then had to go to NICU, and then they decided it was best to move you to Norfolk and Norwich University Hospital. They were sure they would care for you better and find out why you, our little Rory, were so ill. We waited; you turned 3 days old and were still in hospital. I sat at Mum and Dad’s with Rosie, Ryan, Reilly, Jonny and Elsa watching TV and trying to pass the time and take all their minds off the fact that you needed surgery.

You were there eight long hours. I waited by my phone for all that time, waiting for that phone call to say you were all right, that you had come out of recovery. My phone rang and we got the call we wanted. It was Hirschsprung’s disease. Eight hours to give you a stoma and colostomy bag.

Instead of messy nappies, you had a bag. Instead of wipes, Mum had a medical supply bag she had to carry around. I say had because seven months later they reversed your stoma, and you stayed in hospital for a little while, just under five weeks. Apart from the odd hospital stay, you have been home ever since. You will be 2 on Sunday, and what a two years this has been!

Rebecca and Rory making funny faces at the camera.
Rebecca and Rory.

The things we have achieved, the places we have been and the milestones we have hit are amazing. Some people may say you having Down syndrome is a bad thing — but it makes you, you. The first six weeks of your life have made our entire life stronger. At this point, you are completely unaware of your impact on me, on us. But I want you to know I am a different person because of you; we all are.

Rory, people may not realize but it won’t take them long to see it. People like you, people with Down syndrome make everyone else change. Some people don’t like change, and maybe that is what they are afraid of. I don’t believe it’s you having Down syndrome they don’t like; maybe 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, and your photos have been shared all over the internet to raise awareness of DS. You were also on the cover of a nationwide magazine, Woman, and had an article about you inside. We couldn’t be prouder of you, Rory.

As I am writing this and watching you walk around the furniture, I wonder if you will ever read this. I am sure that like every other annoying big sister in the world, I can find a way to embarrass you, one way or another!

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Originally published: March 10, 2017
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