Hayley's Down's story: Having Natalia has made me a better person

Hayley Goleniowska is a mother to Mia, 12, and Natty, 9, who has Down's syndrome. She is also a speaker, campaigner and author of the support blog Downs Side Up. Her story below, written by Emma Mathews, tells her experience of Down's syndrome from fear, to acceptance, to joy.

We were taken to a consultant's room for the news to be revealed, solemnly and apologetically. Our baby was in an incubator on another ward as the midwife wept and we tried to process what we had been conditioned to fear.

When our daughter Natalia was born we had no idea she had Down's syndrome. Whilst I was pregnant a nuchal fold test revealed I had a one in 300 'risk' or the more preferable 'chance' of having a child with Down's syndrome. I refused more conclusive, invasive test because of the risk of miscarriage. Now I am glad I didn't know; that would have presented us with a very difficult decision to make.

I was ignorant. I thought Down's syndrome was a severe disability and I could have ended up being one of the many mothers who terminate their pregnancy if I had been coerced by a trusted medical professional. I do not judge those that choose that path, but often weep to think what we might have missed out on. I am glad I found out this way what it actually is, a mild developmental delay.

When Natalia was born she was silent and blue and the midwife had a look of panic on her face. Three weeks later, she came home and we settled into our hectic routine.

Natalia will not let anything hold her back from achieving her goals. Not even two holes in her heart, which had to be healed in keyhole surgery. She has grown into a strong girl who can swim 30 lengths, ride a horse and can make rooms full of people laugh with her dry wit. She attends mainstream school and is even in a catalogue and the first child with a disability to appear in a 'back to school campaign'.

There are challenges. Finding extra support and resources takes time and patience. We have to think about things other parents wouldn't consider, like how to ensure our nine-year-old with be able to live as independently as possible as an adult.

We need to make sure that we spend enough one-to-one time with Natalia's older sister Mia as it is easy for siblings of children with Special Educational Needs to feel left out. There are dark, worrying days and fears of surgery and illness; but I wouldn't change a single thing about my children.

Natalia has made me a better person. I have learnt to slow down and enjoy the small things in life; that I cannot plan everything and that I am strong enough to bend and adapt to what life gives us.

Of course there will always be people who do not understand, who will look and judge; but Natalia has introduced me to the wonderful community of the Special Needs world. Every child has worth and, had I known what I know now, I would not have feared having a child diagnosed with a disability.

Natalia and Hayley are featured in the documentary 'A World Without Down's Syndrome' to be screened at 9pm, on 5 October 2016, on BBC2.


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