Rory -- our special boy

Looking back, I would have greatly benefited from another parent of a Down's child coming to visit me in hospital. It would have reassured me to know that it was not the end of my life but simply a different outcome to that which we had imagined.

I remember the sister on duty telling us that Down's children were lovely but a lot of work. This was probably the most accurate of all the predictions we received. Friends and family were supportive but initially as much in the dark as we were.

Looking back on those early days in the hospital, the main emotions that I recall are ones of sorrow for the child we never had, mixed with anger, panic and fear.

Any feelings of joy and elation that we would have felt towards either child were stifled and buried. I regret that those early days were not eased by the reassurance that the fear of the unknown was an understandable but unnecessary one. If I had known then what I know now those negative emotions would have been less intense.

We were offered the option of having Rory fostered, should we find it difficult to care for him in the short term. This was unthinkable, but it did make us realise that even though the future seemed bleak, it would not be faced without him as part of the family.

When we discovered that Rory had a severe heart defect, fear of losing him quickly overpowered any other emotion. During the first six months of his life he was constantly ill and on medication as we waited for the heart surgery he eventually received.

Rory, now aged seven, continues to be hard work at times, but has opened up a world we didn't know existed. We have met people we would never have met if it weren't for him. He's convinced that the world is manufactured entirely for his benefit. We could all learn from his determined, devil-may-care attitude. Nothing can be allowed to get in the way of him achieving his goals.

We love him dearly and cannot imagine life without him.