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This week’s woman is the truly inspirational Hayley Goleniowska of the blog Downs Side Up. Hayley is mum to two girls, one of whom has Down’s Syndrome. Hayley’s blog speaks openly and honestly of her family life and also uses her blog and her time to help other families affected by Down’s. Prepare to fall in love with Hayley and her lovely family…

Hello! I’m Hayley Goleniowska of Downs Side Up.   I’m married to Bob, a balding music biz guy and a proud Mummy to Mia, 8, a budding composer and obsessive equestrian and Natty, 5, feisty comedian, clothing model and cake connoisseur. In a former life I was a language teacher and voice-over artist. Now I tread a very different path…

Hayley Goleniowska of Downs Side Up on www.mummyratesit.co.uk

Natty has Down’s Syndrome, which was not diagnosed until after her birth at home. When the initial turmoil and despair had melted, replaced by pride, love and admiration, I resolved to make sure that no other new families felt the same level of desperation and shock that I went through, entirely out of ignorance I might add. I wasn’t sure of the form this would take, but always jokingly talked of writing a book when both girls were in school.

When Natty started school in Sept 2011, I decided to test the water with a ‘blogette’ as it became affectionately named. The blog soon became the core from which other threads were spun, all aimed at ‘gently changing perceptions of Down’s Syndrome from within hearts’.

At this point in time Natty is a model for Frugi and Jojo Maman Bebe, I’ve written articles for journal and Natty has featured in several national papers and popular magazines. We even ended up on ITV Daybreak…  which of course was just another opportunity for Natty to steal cake, this time live on air.

Q1: Describe your typical day

Natty wakes around 5am and climbs in for a snuggle. We then doze til 7 when the day begins proper. Bob works from home when he’s not away on business and he loves to rustle up eggs for the girls and fresh coffee for the two of us in the morning, bless him. I am a night owl, so really relish this kick-start to the day. It’s not the eaiest time as Natty often resists getting dressed and washing, having her own plans, but we use a visual timetable to keep her on track and Mia is a great help and role model.

I do the school drop, staying 10 minutes to do a hand over chat with Natty’s TA. Sometimes there’s a meeting with the teacher or head teacher. We are about to start Home Ed one day a week, so close liaison is vital.

I run a few arrands, pick up necessary items in our local store, chatting with people in our community on the way. I usually get home at around 10, then demolish my breakfast; a bowl of earnest, healthy cereal that resembles chicken feed, or a fried egg sarnie on Bob’s soft white homemade bread with lashings of tomato sauce. I’m a girl of extremes

Then I tend to our 9 chickens (hilarious beasts) chatting and singing to them as I go and cast my eye over my veg patches. The rest of the day is then spent in a heady mix of housework, dinner preparation (I usually chuck a casserole, soup or pasta sauce in the slow cooker as it avoids stress in the after school hours), laundry, Tweeting, blogging, article writing, emailing people who want me to talk or write for them, talking to families with a new baby or diagnosis, or interacting with Natty’s modelling companies or our journalist friend.  A couple of times a week I make time for resource making for Natty’s learning plans and occasionally meet up with other parents with children with Downs.

Then off to school. Home for mayhem, fun, homework, games, massages, giggles, squabbles, music and dancing. Natty needs constant supervision as she is still very small and needs help with a lot of things. She also has a tendency to wander, oh, and get into unspeakably messy situations.

When the kids are in bed at around 7.30 we sit, eat, talk, then I write and do the Downs Side Up thing while he watches a spot of TV. If Bob’s away I’ll probably stay up writing until midnight or more.

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Q2: What’s the best piece of advice you’ve ever been given and have you followed it? 

When Natty was born I was afraid to love her in case she died. A wise midwife was brave enough to say, “It doesn’t matter whether that baby lives or dies, she needs your love either way. So get to the hospital and give it to her.” She was right, I was being selfish, and yes I did follow her advice.

Hayley Goleniowska of Downs Side Up with Mia and Natty on www.mummyratesit.co.uk

Q3: What do you think makes a successful woman? 
A successful woman is honest and true, doing something she believes in and she finds the results fullfilling, whatever they are. I believe to be successful at parenting/home life/work, women need to take guilt-free time for themselves once in a while as well.

Q4. What 3 things really make you happy and why

Spending time with family and friends, eating, laughing, dancing makes me happy. Knowing that my efforts with Downs Side Up have helped someone somewhere is a feeling that cannot be rivalled. Reading the amazingly honest messages that people send me still makes me cry with pride to have made a difference. Speaking at the Britmums Live conference was one of thse moments where you know you have changed people’s thinking for ever.

Seeing the goodness in people despite societies ills. Experiencing the kindness of a stranger always brings a smile to my face.

Q5: What 3 things really make you angry and why

Rudeness in any form, grumpiness, bad manners, swearing in front of kids really gets my goat. A smile costs nothing.

Websites that allow trollers to operate anonymously.

Misunderstanding of Down’s Syndrome and the general myth perpetuated by the medical profession that it is the most awful fate that could befall anyone. A 92% termination rate does not reflect a factual and unbiased imparting of information about DS at diagnosis.

Q6: How do you relax?
I relax in my garden, tending my veggies, with my chickens. Often family time is quite intense, so time alone is quite precious. I treat myself to the occasional manicure, but most of all I like to release tension by walking on a beach or dancing to cheesy pop at full volume in the kitchen with my girls, then crashing and watching ‘brain out telly’ with hubby and a glass of presocco.

Q7: What makes you laugh?
I laugh daily at our children’s antics, Natty’s funny faces, my husband’s appallingly predictive jokes I’ve heard a million times, my friends, a well-timed fart or burp, and setting up assault courses in the garden for a game of ‘chicken olympics’.

Q8: If you were given a time machine where and when would you travel to and why?

I would return to the day Natty was born. I would return with the knowledge I have now about what Down’s Syndrome really means. I would relive the day knowing the wonderful, beautiful little girl she has become, the ambassador, the teacher, the strong character she has developed. I would not feel the crushing, numbing shock. I would not think my life was over. I would not be disgusted by the sight of my baby. I would not fear for the prejudice and struggles that lay ahead of her. I would not have to be persuaded to look at her, then eventually touch her. I would immediately see our beautiful fragile daughter laying there in an incubator in NICU and accept and love her without question.
I shall be guilt-ridden to the end of my days about those lost precious moments, that Natty didn’t get the same warm welcome into the world that her sister got. That she lay there with no-one to love her, however briefly.
And that is what drives me to do what I do for other families’ sakes.

Natty Goleniowska of Downs Side Up on www.mummyratesit.co.uk

Q9: If you had £10,000 to give to charity which one would you choose and why? 

This is tricky. There are so many amazing charities out there. We support the Downs Syndrome Association, our local Downs Syndrome Support Group Great Ormaod Street, the NSPCC, our local Children’s Hospice, The Wallace and Gromit Appeal at Bristol Children’s hospital and Smile Train. But if the sum was so large I would probably give it to a charity that affects the lives of many, young and old, such as the British Heart Foundation.  Natty had keyhole surgery at the age of 2, and none of us knows when we might need the same.

Q10: If you could magically create an extra two hours in a day what would you use them for?

Hummm, 2 extra hours… could I squeeze in a phone call with a friend, quality time with my husband, and much more undisturbed sleep please!

Get in touch with Hayley:

Twitter @DownsSideUp https://twitter.com/DownsSideUp

Facebook Downs Side Up https://www.facebook.com/downssideup

More beautiful images of Natty’s achievements on Pinterest Downs Side Up

http://pinterest.com/downssideup/

If you would like to feature in 1 Woman: 10 Questions please get in touch by emailing me at michelle at mummyratesit dot co dot uk  - don’t be shy! x

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(2) Readers Comments

  1. I have read this three times now. I had heard of Hayley’s moving post – but sadly missed it – at the Britmums conference, having had to leave in the afternoon. It’s a delight to see more of her and understand her better. I love the importance she puts on time for oneself – something we could all learn from. Another lovely, strong, inspirational woman. Well done, Michelle and thank you Hayley. You really are making a difference. My children came when I was 41 and 44 and I avoided as much information as possible regarding DS, so as not to make for an even more worrisome pregnancy. I feel ashamed of that now, even though it was because it was always spoken of in such a negative way and I knew I would never terminate my babies. It just shows what a good job you’re doing and I feel you’re just at the beginning!

    • Hi Anya. Thanks for your comments. Hayley’s piece has been really popular and I imagine it is because she has spoken so honestly and openly about DS. Like she says herself, most of us know little about DS and it’s great that Hayley and her family are showing us it in a positive, informative and fun way so that others won’t have to miss out on any precious moments. x

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