There’s nothing to be sorry about, it’s just a different journey

To read on Mencap website:

To the doctor who told us, ‘I’m sorry’

Jodi Parry    06/03/2016
The day our twin girls were diagnosed with Down’s syndrome it felt like a life sentence. That day, I didn’t feel like a mother. I just felt lost and confused. I had bleak visions of the future. I thought we’d be carers until we dropped dead.

How different our world looks now. I’m looking forward to spending Mother’s Day this year with my beautiful children – I won’t be relaxing, but that’s life when you have three little ones! I’m happy to be able to celebrate the day as an extremely proud mum of our seven year old son, Finlay, and our twin four year olds, Abigail and Isobel. I still vividly remember a time, though, when I thought motherhood could never be this way for me.

The doctor took us off the ward, into a bare, clinical side room with three chairs and then uttered the words that have remained stamped on my memory: ‘I’m sorry.’

Everything else he said that day is a blur, that ‘I’m sorry’, the first words that came out of his mouth, is the thing that stayed with us. We had so many questions. Would the girls walk? Would they talk? We knew nothing about Down’s syndrome and left the hospital with no answers, no information, just fear and dread.

Other families that we meet, and families that contact Mencap, often talk about the negative experience of their child being diagnosed. Even though the first years of a child’s life are so important to their development, many families with a child who has a learning disability struggle to get the right support at the right time. We know this is true from our own experience. Luckily we met a wonderful health visitor, Barbara, our rock, who finally gave us some honest answers and encouragement. Without her, if that diagnosis was all we had, we would have had to pick up the pieces of our world on our own.

Having twins with Down’s syndrome is very rare – about two million to one! But having a child with any learning disability is much more common. There are 1.4 million people with a learning disability currently living in the UK.

I dread to think how many other parents have had a diagnosis sprung upon them like a death sentence. I dread to think how many others have returned home from the hospital with no information on their child’s disability, and no preparation for what their life might be like.

I know now that Mencap and other organisations have information and support for parents, which would have been so helpful and comforting to us in those early months. And how great it would have been if we could have just talked to another parent, someone a bit further down the line with an older child, who could offer us reassurance and encouragement.

The doctors are phenomenal at what they do, but we found the hospital environment very clinical. If there had been a bit more understanding and listening to us as parents, then perhaps our distress would have been heard and someone could have directed us to information that told us what to expect for our daughters’ futures, not just scientific jargon about extra chromosomes!

To this day, I would love to ask that doctor, ‘what are you sorry for?’ There’s nothing to be sorry about, it’s just a different journey. Our girls bring us so much joy and in September they started at the same mainstream school as their big brother Finlay. Our family feels happy and healthy. So now, four years down the line, if this is our journey then we wouldn’t swap our tour guides for the world.

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