Showing posts with label Hayley Goleniowksa. Show all posts
Showing posts with label Hayley Goleniowksa. Show all posts

Reader's Guest Post by my birth companion Katinka Soetens


This guest post is so very dear to me. It is written by someone I respect enormously. Katinka is the most beautiful woman who Bob and I were blessed to have been able to invite to be present at the births of both Mia and Natalia. 


Both births had their surprises; Mia was an undiagnosed breech until the last moment that we had no choice but to deliver naturally and Natty was born at home in a calm, planned way. Of course she brought with her her own surprises, her blue stillness being what I recall most vividly.
I have asked Katinka over the years to tell me what she can about that day. How she helped us through the shock, I always wondered what she knew and witnessed in the lead up to Natty's diagnosis being delivered many hours later in the hospital.

Here she writes so lovingly about that time. I cannot read this without crying, and we thank her for helping to put us on the right path in those early few hours. H x



Sometimes life brings you the opportunity to really feel what it is to surrender and trust.
Not from a place of fear, but from a deep knowing that the perfection of the soul’s journey in this life follows a greater plan then our day to day perception usually gives us the view of. Once felt and experienced, it becomes obvious that all there is to do, is to be fully present. To trust and to let go of attachment to outcome, so that we act as is needed in each moment, in flow with this greater plan.

Natalia’s birth was one of these magic opportunities for me.
We as people are all so lucky to have the ability to experience being a part of a community, part of a wider “family”, sometimes brought together by what seems like chance, but which, when it really matters in the moments when life is about as real as it gets, gives unquestionable support and opens in us all the chance to grow as human beings.

Hayley had asked me to be her doula for the birth of her second baby, a planned home birth, after having been with her and Bob at the birth of their first beautiful daughter Mia. I was delighted and honoured to do so. Over the last months of pregnancy we’d worked in birth preparation classes, held in the homes of the small group of women seeking natural birth awareness and preparation, and a close bond had begun to form between us all. We’d shared fears and joys, breathing and stretching exercises, helped each other to relax and drop into the deeper listening to the body that is part of this women’s work. Hayley and myself had been in regular communication in the weeks leading up to the birth, all midwife checks were fine and all seemed well.

So it was that the call came, that 5th December night, (St. Nicolas’, patron saint of children, and evening of gifts for all Dutch people) a new life was about to come into the world, as Hayley was in labour.

As Doula and Natural Active Birth teacher I had been in the very fortunate position for many years to witness and hold space for the sacred process that is giving birth.
Not only is the natural physiological and emotional process of labour an opening to life manifesting through us into being, a place where we get to remember our essence as the force of nature and creation, but it offers the change to experience how, in the depth of our greatest vulnerability we also get to touch our greatest power. The illusion of the separation or dualism between the two can fall away. Helpless as we may feel to alter the flow of the birth process, despite all best laid plans and preparation, when the inevitable ‘it bit’ moment of labour comes, most woman, especially when well supported, find a surrender to what is happening and the trust to go within and be the power of life itself. It is both humbling and empowering in equal measures.

Part of my preparation for attending birth would be to pray to Goddess to guide me and protect mother and baby, and call into myself that part of me which is ‘midwife’, ‘wise woman who is with’. As usual, I felt her arrive in my body, in my hands, as the voice which knows what to do or say, while I was driving over to Hayley and Bob’s home that evening.

There was a fine flow to the birth dance, the house warm and nest like, Bob caring and looking after us, different birth spaces prepared and family and midwife on standby. At one stage Hayley was restless, a disquiet as if something needed to happen or was not right. Not knowing what to do in that moment, I prayed and the message I got was that all was as it should be and all that was needed from me was to hold and love Hayley.

So when Natalia was born a few hours later in the bathroom, blue and beautiful, and it was obvious that all was not as we had hoped, this was all there was to do for the Doula: to love and hold, to trust the unfolding journey. To hold for Bob, somehow, bravely, out in the cold early morning light in shorts and t-shirt, waiting to guide the ambulance into the drive. For the panicking midwife trying to get that baby going, who needed the support of the not yet arrived 2nd midwife. For Hayley, courageous amazing woman, on the threshold of a life-change none of us had quite fathomed yet, and for this new baby, fighting to be in that little body. How do you help, love or hold in a situation like that?

Tuning in to you, little Natalia, in that moment when you were still between the worlds, you felt so calm, sure of your path, so strong, so perfect, and I knew that all would be well that day, despite the birth-scene we were all a part of in that moment. You gave me a sense of peace that I was able to hold in my body and for those around me.

Later, when the 2nd midwife, who was a friend of mine having been my own midwife at the birth of my children, exchanged glances with me on the way down to the cars and ambulances, I knew she too suspected the truth behind Natalia’s blue arrival into the world, and she too knew that all there was to do was to love and hold, to surrender to the perfection of this family’s story.

And later still, when, after what felt like waiting for an unnecessary age in Treliske hospital, the clumsy  doctor gave the news we were all by now expecting: Natalia was born with Down’s syndrome, the almost unbearable privilege of being allowed to be present to the deep soul journey into love this news initiated in both Hayley and Bob. What a gift you were from the beginning Natalia!

If you are asked to be a part of the life journey of someone when it matters, especially around the times of initiation, which birth and death are the most prominent of, don’t shy away, don’t allow your own fear to deprive you of a perfect opportunity. You do not have to know what to do or say, as long as you are authentic in your expression of that not knowing.  All you really need is the commitment to surrender, and be with, to stay present and to love, no matter what. No need for clever planned programs or road maps, anything can and will happen along the way. You may feel lost, it will feel too big, and yes, yes! You can do this in your own unique way. And what amazing treasure and lessons the gifts of taking the journey are. You will be changed for ever!

The rest of the story is history as they say. Throughout it all Natalia and her family have given me such unbelievable teachings on living love and surrendering to the perfection of our soul’s journey, I am for ever grateful for the gift of knowing them.
Thank you Hayley and Bob, Natalia and Mia, for asking me to be part of your special birth journey, part of our lives entwining. Thank you for all the love you make shine in the word and for changing perceptions of what perfection might be or look like where ever you go.

Love and Blessings
Katinka

Downs Side Up: A Rubbish Blogger?

I have just worked out that I am a 'rubbish' blogger.

To be honest I didn't know what a blog was when I started Downs Side Up just over a year ago and so I had no bench mark, nothing to compare myself to. I honestly didn't know what I was trying to be, so I just became what I had wanted to see and read when Natty was born. That has always been my only motive.

I found that putting on blinkers (ie not reading other similar blogs) was the only way to find my own voice, say my own thing in my own way, and this often leads me to not read or comment on others' blogs as often as I should. I hope they forgive me.

I probably work in a slightly artistic way: late into the night, I'm fluffy about deadlines and rather disorganised in my email inbox. I work from the heart, the gut feeling, the muse, the tiniest of motivations, a heart-stopping photo. I actually enjoy talking to people on Twitter, possibly a bit too much, but never for gain of followers.

I might promise you an article, and it'll be great, but you might have to remind me to finish it. You might ask me to review a product. I'll turn you down unless I think my readers would actually like it. Money doesn't ever feature for me, although it might make me remember to write your article ;) And actually, when one spends 10 hours a day on one's blog, a little recompense, just to cover one's costs might be prudent in the long run.

But as my blogging journey progressed, I got distracted. Writing sweet, inspirational, informative, powerful blog posts became the skeleton upon which speaking to doctors, teachers, students, parents, training, campaigning in parliament, taking ones clothes off for charity and to celebrate mummy bodies and pushing companies to include models with disabilities became the flesh. Parents told me I was changing their lives and that became the focus.

I have always counted this as being part of blogging properly. I mean blogging is always at the core of something more, right? But still I am a novice blogger. My site is not glossy and I still think SEO is someone in charge of a large company.

Then, along came the awards ceremonies, well the first of the year, the MADS. I was nominated in the MADS and BRITS last year which is a wonderful boost for any writer. Lots of my gavourite bloggers won these awards, others I didn't know before are now an inspiration to me.

But far too distracted by sitting throught the night researching disability abortion law before facing a panel of MPs to read the MADS page I assumed 'nominations' meant just that, and that voting would come later. I sat and proudly smiled at being nominated.... and missed the voting boat.

Should I have been filling my blog with requests for them? I didn't. I actually don't like touting, but I might have asked my Mum and friends to put in a word, you know, to save face :)

@HerMelness recently wrote The Mad World of Blogging Awards, a post about how important it is to celebrate what you have achieved outside of and in addition to these official awards. I won't lie, it would have been nice to go through to the shortlist, to further spread our word and awareness of DS, but I will focus on other personal achievements. Thank you Mel for keeping us on the straight and narrow in Blogland.

Then, suddenly, I heard that there was a new category for the blogger who has made an outstanding contribution and that I had been nominated by parenting expert Sue Atkins. (I've since learnt others have nominated DSU too). I was utterly overwhelmed and very emotional. I am so very very proud to be considered in that light and yes, you can vote (it's confusingly called nominating) and yes, I will put the link here, if only to show you I am not a rubbish, disorganised blogger all the time ;)


CLICK THIS BADGE TO VOTE!
MY URL IS HTTP://WWW.DOWNSSIDEUP.COM

                                                              MAD Blog Awards

THANK YOU X
 :)



Reader's Story - Caroline Playle

This truthful story of shock, mourning and the subsequent love and pride was sent in from Caroline Playle, Mum of Seb.


It was a small, musty room where the news was delivered to us that Seb had Down’s Syndrome. Five days after his birth, the fumbling paediatrician, ironically called Dr Downie, left the room to allow us some time to 'take it all in'. I distinctly remember how the room had no windows. He had us captive. 

He returned suspiciously swiftly with a handful of leaflets and I remember so vividly the hot flush in my cheeks, the palpitations in my chest and the knots in the pit of my stomach as I caught a glimpse of the cover photos. No way. This is not happening to me. To us. This is for someone else. 

I don’t know if it’s a mothers instinct, but after the barbaric labour I’d endured, the absence of a cry and the fact that Seb wasn’t given straight to me, I was waiting to be told that something was wrong. He didn’t look quite how I’d imagined, but then most newborns look a bit alien – don’t they? I kept staring at his fingers and counting them. They were so fat and blue and I couldn’t quite believe there were only five on each hand. The staff left us to it so I presumed we were out of the woods. I’m always a worrier.

24 hours later, after problems with feeding, a midwife told us she had concerns of a 'chromosomal abnormality' (whatever that was) and had asked for someone to come and see us urgently. 

A very long and uncomfortable two hours later the paediatrician arrived and, with very little eye contact, did some routine examinations. He mainly talked in riddles, but he said something about possible heart problems and muscle tone. It didn’t sound too serious. It certainly sounded redeemable. The nurse took some blood from Seb’s teeny tiny hand with what looked by comparison, like an enormous needle and organised heart and blood pressure tests. 

That evening, all alone, I decided to read through Seb’s precious little red book. 'Sandal gap', 'slanting eyes', 'mild hypotonia', ‘concerns of chromosomal abnormality’. Still feeling brave and looking for peace of mind, I decided to google it…….. 

Down's Syndrome. 
Down's Syndrome. 
Down’s Syndrome.
DOWN'S SYNDROME?!!!!!

OH. MY. GOD. 

So, back to the musty room with no windows, the confirmed results of the blood test, Dr Downie and the pudding bowl haircuts. That was the day that someone drew a thick, black, heavy, vertical line right through the middle of my life. The day my heart was so heavy I could practically feel its weight in my shoe. 

We gathered our things together, including our tiny baby with his shiny new label, and nervously knocked over our cups of water. We burst out laughing. Nothing about it was funny though. 

We walked to the car. A stranger peered into the car seat and congratulated us. I forced a feeble, fake smile whilst feeling absolutely gripped with fear and dizziness. She had no idea. It should have been the happiest day of my life. It was the worst. We drove home and I remember thinking that the streets somehow looked different. Everything seemed calm and people were carrying on as normal. 

The house was full to bursting with messages of congratulations, presents, flowers, balloons, cards, gorgeous baby clothes and the nursery that had been put together with excitement just weeks before. Everything was perfect, just how I had wanted it, except for one thing…

Caroline and Seb in the early days


In a blur and on a mission, we frantically threw ourselves into research mode reading books and websites, and getting in touch with speech therapists, physiotherapists and other experts. I would wake up and for a split second it wasn’t real. There were tears, so many tears. Hysterical tears. Every single time I looked at my new baby I saw Down’s Syndrome. I felt a huge depth of love for him. He seemed exceptionally vulnerable and I felt guilty for feeling so cheated. It was a very confusing time.

Bit by bit, day by day, the hurt started to lift as I grieved for the baby I thought I was having and I fell in love with our Seb. He was a baby first and foremost, not just a syndrome. He cried, he smiled, he rolled over, he sat, he crawled. He learnt to walk, he learnt to eat. In fact he did everything you would expect a baby to do, just at his own pace.

Last month was his 3rd birthday and the only aching in my heart was pride which was literally bursting out. Every single day he makes me laugh. Every single day he makes me mad. He is charming, witty and bright and he knows how to have a meltdown like the rest of them. He is starting to speak, he’s learnt 100s of makaton signs (think Mr Tumble), he’s off to mainstream nursery in September and he’s even starting to learn to read. His favourite word is ‘cake’ and he is obsessed with diggers. He hates having his hair washed, he loves ice cream and he calls his brother ‘babydom’. He doesn’t have a pudding bowl haircut and his little face is full of magic and mischief. 

In truth, I wouldn’t change a single hair on his body, let alone a chromosome. He is honestly the best thing that has ever happened to me and he has taught me so much in 3 short years. 

96-98% of positive screenings during pregnancy end in termination. I would never judge anyone for taking this decision and I understand the reasons. This is exactly why my plight is so heartfelt. Before Seb, I was ignorant too. I had never known anyone with Down’s Syndrome. I was guilty of being in the ‘they’re so loving’ brigade and I have a pretty good idea how this story may have ended, or never really have started, had I known about that extra chromosome when I was pregnant. I feel so ashamed of that. Seb has brought joy to so many people in such a small amount of time and he contributes far more to me than I ever could give to him. He deserves to be here. I just wish that in those initial hours, days and months of his life I had not been so gripped with fear of the unknown and had just realised, as I do now, that he is a child (person) with likes and dislikes, just like anyone else. He just happens to have one extra chromosome.

World Down Syndrome Day Fundraiser



Watch our film to see how and why 

DOWNS SIDE UP UNCOVERED came about.


            


JustGiving - Sponsor me now!
You can give online here


Here are a few behind the scenes shots to give a little flavour of the day. The nerves, the excitement, the giggles...



You can also text DSUU47 £AMOUNT to 70070





Downs Side Up Uncovered - the Shoot

After Kate @kateonthinice who writes the Naked Mum blog persuaded me to join her one naked mum a month drive to celebrate our mummy bodies, I decided to tie it in with World Down Syndrome Day on 21st March, the theme being LOTS OF SOCKS or different socks as we are calling it in our house, for everyone is different.

While I was at it I thought I might as well raise funds as well as awareness, so I am collecting monies for the vital work of Down Syndrome International, the Down's Syndrome Association and the Cornwall Downs Syndrome Support Group.

And so the wheels were set in motion. These things are always organic, I never have an end plan, I just follow my nose. 

The wife of a former employer is a supremely talented and professional photographer Maryna Halton of Photograph by Maryna, who happens to specialise in boudoir photography. Although not the natural Mummy look we were trying to achieve, she was used to snapping naked bodies, putting semi clad women at ease and had 'seen it all before' so to speak. She very kindly offered her skills for free. 

So too did her partner Julie Wieczorek of Angel Face, expert mineral make-up artists on Miss World.

Julie applies make-up to a trembling Hayley

A local film maker also offered his services, and Geoff's video clip of the preparations and why I did it is at the bottom of this page.

Suddenly there was a team involved in Downs Side Up Uncovered. The sponsorship started rolling in and there was no going back. Gulp

As the day dawned and the props had been gathered, the nerves increased. I'd made my reasons for doing the shoot clear in Downs Side Up Uncovered, showing the bodies of mums of children with disabilities are like any other, that I lay my feelings bare in the blog, that I am not just a campaigner and Mum but a woman and wife as well.

The day began, the nerves soon abated, but I was astonished at how emotional I found moments of the day. Tears welled in my eyes. What I hadn't foreseen were the stories of those helping out, the reasons behind why they wanted to help.

I hadn't twigged either, that the last time I had been naked in front of near strangers was at the birth of darling Natalia. My body was remembering. I thought too about the families we support and what the day was all about and the tears pricked more, a kind of pride too I guess.

Then of course there are the emotions associated with getting older. The last time I took a really good look at myself naked was probably about 10 years ago and I didn't have to suck my tummy in then. Now, at 43 years one has to work a bit harder to look effortlessly natural, or maybe it just doesn't matter as much what you look like. Priorities have shifted significantly.

Hayley clings to her trusty dressing gown

And so, we did it. We spent 5 hours, doing different poses and locations. We all felt washed out at the end, nervous to get it right, not offend anyone, to produce artistic, tasteful images that portray the real woman. I haven't seen the pictures yet, Maryna is looking through them now. We'll choose the best and  send one over to Kate for her blog next month. Perhaps we'll reveal the others slowly as the charity funds mount up in the pot. Maybe a newspaper would like to feature one and champion our cause. Who knows. 

For now, here is the first of the behind the scenes pictures of the naked mum that is Hayley Goleniowska.





TO DONATE PLEASE TEXT DSUU47 £AMOUNT TO 70070

OR VISIT MY JUST GIVING SITE  HERE.


WATCH OUR VIDEO CLIP ABOUT HOW THIS PROJECT CAME ABOUT AND MY REASONS FOR DOING IT HERE: 


 






Can't Care, Won't Care - Lloyd Page

Last year I was honoured to meet campaigner, speaker, writer and journalist Lloyd Page at the British Institute of Learning Disabilities Annual Conference. 

Lloyd is a wonderfully warm man, who helped me greatly with my nerves as I prepared to deliver my keynote speech. He also happens to have a learning disability himself. The experience of meeting Lloyd and other movers and shakers was so life changing and inspirational that I wrote about it here in Innovation, Imagination, Inspiration


Lloyd rang me this morning to let me know that he has an article  published on the Channel 4 blog. It is called Can't Care, Won't Care: Has the NHS really changed? And tackles the subject of Death by Indifference. The startling reality that people with learning disabilities are actually dying in our hospitals simply because their needs are not being understood.

This is a subject I am passionate about, but Lloyd writes about it in the most powerful way imaginable. Please read and share.

Our little film: What to Say When a Baby is Born with Down's Syndrome

To mark Downs Side Up's first anniversary last week, I recorded a reading of the most popular blog post of the year; What to Say When a Baby is Born with Down's Syndrome.

It was written as advice for friends and family predominently, but it turns out that it is useful for anyone and everyone who knows someone whose baby is born with a disability, illness or prematurely. It has fairly universal appeal therefore.

It's the post I read at Britmums Live this year, causing 500 women and a few men to blub uncontrollably into their glasses of Chardonnay. Most kindly, they gave me a standing ovation for upsetting them.

Anyway, here it is. I hope you enjoy it. Brew a cuppa first, it's 20 minutes long, but it might just change your life...