Rory’s Story

Rory’s Story

Rory’s Story by his mum Chelsea

Rory was born in 2017, when I was 23 years old. There is a misconception that children with Down Syndrome are born to older mothers! I got a lot of that in the beginning, “But you’re so young?!” Rory was my second baby. I had an older son who was just turning 2. Looking back, I remember not really feeling Rory move in the last few weeks of being pregnant. My Grandma was in hospital passing away and, at the time, I put it down to the stress of that, and that I also had a very active toddler at home. When Rory was born by C-section, at 40 weeks exactly, I remember the room being so quiet. Unlike the time before, when Oliver was born, and people saying congratulations and a buzz in the room, no one really said anything. I noticed the two doctors above my head look at each other awkwardly. I had gone in with my mum and after I asked if everything was OK, for the 3rd time, it was my mum that answered, excitedly. If you’ve ever had a C-section, you would know that there’s always a lot of people in the room, all with their own job. But when Rory was born, this number doubled. Now I know that this was to confirm a suspected diagnosis. I was still unaware of anything and was just so happy that we were both OK.

I am also grateful that Rory didn’t need any help or needed to go to the NICU, as I soon learnt was the case with many babies like ours. We were so lucky! I was told about Rory’s diagnosis at midday, 9 hours after Rory was born. I was taken off the ward to a side room with Rory, a paediatrician and a nurse. I was completely by myself. My husband, Paul, was back at home getting some rest. To be honest, I only really remember them saying, “I’m sorry, we think Rory had Down Syndrome”. When we left the room, all my stuff was put into a side room with some outdated leaflets, and then we were pretty much left to it. We were seen by a few nurses that gave us the sympathetic head tilt and the “I’m sorry” speech, and them very enthusiastically telling us how gorgeous he is (so over the top)! We were also seen by a very old-school doctor that gave us this really huge speech about how he’s sorry for us that his Down Syndrome wasn’t picked up, as something would have been done about it! He said that Rory would never walk, talk or even eat properly, and that everything was going to be a struggle.

I even found notes at the end of my bed, a few days after Rory was born, saying suspected trisomy 21, “Do not tell mummy at this time!” They all knew from the second he was born! To me, this is where they should have told me! Why was it such a huge secret?! I remember thinking, I just wanted a baby and I had got one! Why is everyone so disappointed with him? Paul actually snapped in the hospital, and said, “He hasn’t died. We still have our baby. Why is everyone so sad?” When I say everyone, I mean the staff and doctors at the hospital. This is where the negativity came from, for me. However, I would also like to say that I received fantastic care. It was just everyone’s negativity about DS that was the problem! Our family have been really supportive, and really loved Rory, right from the start. They were just so happy a new baby was born into the family, after the loss of grandma. I love them all so much for it, as I really needed them all, at that time. For us, as a family, it wasn’t really until we went to Footprints, that things started to get easier for us. (Footprints is a centre that works with parents of babies with motor or developmental delay, to help them reach their milestones, and meet other families on a similar journey). We didn’t feel so alone. It was so lovely to walk through the doors every week and see families like ours and talk to them, knowing they just ‘get it’. I love the support groups we are a part of, and I know I can ask for advice to an army of parents without judgement, and give it where I can.

I love the random nod of acknowledgement we give to strangers when we realise they also have a child with Down Syndrome (we all do it !!) like we are a part of a secret club! It wasn’t until Rory was about 6 months old when we started to realise that Down syndrome isn’t the life sentence people think. It’s truly beautiful! I am so proud to have a child with Down Syndrome and I don’t feel alone at all! I’d also like to mention the Nottingham Downs Syndrome Support Group that as always is doing an amazing job in raising awareness and always making sure that no one gets left out! Rory is now 4 years old, and has lung and heart disease. He has given us a few scares, but it’s not all bad. He’s the strongest person I know, and has just started mainstream reception. He’s the little playground celebrity. I wish I could have looked into the future, when I had him, and seen him now. I would have known that there was nothing to be so scared of! Someone asked me, once, if I could, would I take his Downs Syndrome away? But the answer will always be no! It’s one of my favourite things about him!