The Roar Behind the Silence: Maternity Care Book review

The Roar Behind the Silence

Why kindness, compassion and respect matter in maternity care

One of the areas that writing Downs Side Up has led me into, is working with many wonderful medical professionals, including midwives. I have been invited to speak at many training events and conferences, and I'm always extremely proud to do so. You see, most of us are working towards the same aim, excellent support of women and the safety of them and their babies. These incredible, compassionate professionals are always keen to learn from the parents' experiences and build on areas that need improvement. 

Kindness   Compassion   Respect

Learn to Expect the Unexpected When You're Expecting

I firmly believe most Mums-to-be have rose-tinted expectations of what pregnancy, birth and beyond is going to be like. So what are the realities of motherhood? What did I wish I had known before our family expanded? What's it really like to have a baby...?

Being something of an eternal student, I approached my first pregnancy in much the same way as a very exciting and practical college course. Books on ovulation, conception, pregnancy, nutrition, exercise, breathing, visualisation, birth, and beyond lined my shelves. I read and devoured the facts within their pages as if memorising them would help me gain the planned top grades in the final assessment.

New Dad Talks about Life with Down Syndrome

A few months ago I recieved a beautiful email from Matt's wife Laura. It was the sort of email that makes me realise that I am not writing into a vacuum and that DSU is achieving what I set out to do, to support new parents, let them see that life with Down's syndrome will go on pretty much the same as it did before, only better, despite the health setbacks. I never share emails or comments that are sent privately, but Matt has penned this piece especially for you dear reader. Meet the Horsnells:

I’m new to this…

October is Down’s Syndrome Awareness Month in the US, and many people, some of whom I’ve got to know remotely over the past 8 or so months, have been penning excellent blogs focussing on what DS is, and what life is like for children and adults with DS, and for their friends and families.

One of these people is Hayley Goleniowska. I’ve not yet had the pleasure of meeting Hayley and her family, and the chances are that I would not have even heard of Hayley but I have. I have for two reasons.

The first is because my daughter, Ada, who was born in February this year, was diagnosed postnatally with Down’s Syndrome. Like most couples expecting their second child we were excited, fairly relaxed, and slightly anxious about the onset of life with two children under two. I was expecting a little less sleep, possibly some jealousy from our eldest having to share her mum and dad for the first time, and another couple of months of intense nappy changing.

What I wasn’t expecting was that our baby would be born with DS. Not that it is relevant, but since everyone asks (and please do stop asking parents of new babies) we did have the run-of-the-mill screening, we were considered low risk, and I should imagine like most people we didn’t think anymore of it.

I didn’t even think about it when our baby was born. The birth was incredibly smooth, labour seemed easy enough (from where I was sat!), and Ada was delivered into the world with her amniotic sack intact, something the midwife instantly told us was good luck.

Looking back now, I’m not sure if I started to suspect that something was wrong during the night or during the next day as we were waiting for the all clear to leave the hospital. Her hearing was fine and she’d had some basic tests. Then there was some scuffling by the midwives that they were waiting for someone to listen to Ada’s heart again, as there was a suspicion of a murmur.

What followed, predictable though it is as you read this, came as such a shock to us. 

We were told that our daughter in all likelihood had Down’s Syndrome.

I have never and probably will never feel again the gut wrenching, heart aching flush that took over me in that moment. I could probably tell you exactly what all the doctors, nurses and midwives were wearing, who was standing where and what was still left to pack into our hospital bag such is clarity of the moment when we were told. I won’t dwell on it here, suffice it to say that we were told it straight. It even made some sense when they said it, after all our baby had seemed a little weaker this time, she’d not latched on very well, there was some concern that her eyes were a little puffy and she became incredibly dry during the night.

Looking back, I’m not sure if it was my ignorance to the facts, or that I was suppressing something that I didn’t want to accept. Either way I have never had the earth pulled from under me so quickly as I did that day.

In the hours, days and weeks that followed I did my best to try and understand what Down’s Syndrome really is and what the realities for my daughter were. We are incredibly lucky to have a loving family who really rallied around. My sister and her husband in particular had, to my on-going pride, been very involved with Scope and Mencap for some years and so instantly knew in which direction to point us. We had soon located the very aptly named, Cambridge Baby and Children with Down Syndrome Support Group, and I’d received a second hand copy of Andrew Merriman’s A Minor Adjustment through the post, sadly it is out of print. [A Minor Adjustment has just been released on Kindle - H]

The other source of information we had during the early weeks were blogs, which leads me on to the second and true reason that we have heard of Hayley. Hayley is such a strong advocate for Down’s Syndrome and it was probably through a google search of “Down’s Syndrome Support Blog” that we found DownsSideUp.

Although I had been able to read the literature the hospital had given us, and had managed to read most of the Down Syndrome Association's website for new parents, it was Hayley's blog which instantly struck a chord with my wife Laura. 

Laura had been unable to read anything about DS in hospital until I read her Hayley’s posts. Hayley, like us has two daughters, seemed genuinely nice and was actually getting on with living. I read many of her posts to Laura and we cried out loud together, partly through realisation that we were not alone, not unique, and partly because her blog offered hope, and happy photos and stories as well as facts.

Like Hayley and many, many parents we had our initial problems. Ada had very dry cracked skin, for which we were prescribed pure sunflower oil, olive oil brought her out in a rash, yes we experimented! We had 5 weeks of feeding through a nasal-gastric tube, which was tricky at the best of times, and incredibly, arm achingly slow, but Ada was feisty and really didn’t want the tube in. So, despite being desperate to get out of the hospital after our 8 day marathon just a few days earlier, we started then what has become regular trips to Addenbrooke’s Hospital.

This an extract from an email I sent to my family at the time that sums it up well:

“Ada discharged from neonatal care, as all going well, and had put on another 100g on Wednesday (@25gms/day) so we’re up to 7.5lbs. Now responsibility of health visitor and early years support team.

Lots of appointments arranged... genetic counselling, foetal medicine counselling, counselling, physiotherapy, speech therapy, bonding and attachment therapy, portage, ophthalmologist, heart scan, hip scan, repeat thyroid, baby massage, child development team and last but not least the standard six week check next week."

Fortunately things have calmed down since then and Ada is now nearly 9 months old.

She loves going to Yoga with Mummy, and she started swimming lessons with me a month ago. She is happy and healthy and is the apple of her sister’s eye, who quite often states with pride “You is the best friend for me ever!”. Ada was fully breast fed for 6 months and is now enjoying solids too. She is sitting and just this week started to clap.

We’ve been on a family holiday and, albeit small-scale to the Norfolk Broad’s this year, we’re determined to tackle flying abroad next year if we can. We’ve been camping at a music festival and we’re just about to move house. 

I mention all this, because we nearly lost sight of it all 9 months ago. It just didn’t seem possible. How very wrong we were.

Matt Horsnell - Ada's Daddy
 @maver on twitter

Evidence in Parliamentary Disability Abortion Law Inquiry

As many of you know I was asked to give evidence in a Parliamentary Inquiry into the current Disability Abortion Law in this country.

With exactly a week’s notice I was given the important honour of being asked to speak in a multi party Parliamentary Inquirty into Abortion on the Grounds of Disability that would try to:

•      Establish and assess the intention behind the law governing abortion on the grounds of   disability.
•     Establish how the law works in practice and is interpreted by medical practitioners.
•      Determine the impact of the current law on disabled people and assess the groups representing their interests.
•      Assess the effectiveness of the information and guidance provided to families following the diagnosis of a disability and the impact that has on outcomes.
•      Examine how the law, guidance and support for practitioners and families can be developed going forward.

Very well aware that this is a highly emotive subject, I accepted and began my research. I didn’t sleep before about 3 am on several consecutive nights, reading around the law, which limits abortions to 24 weeks except in the case of Ground E abortions for babies ‘at high risk’ of ‘severe handicap’ (not defined), for whom a termination is possible ‘up to and including during birth’, and believe me, you do not want to know details of what that entails.

I found and absorbed, tried to understand and respect if possible, every conceiveable opinion from considering contraception as murder to believing in a woman’s right to choose to terminate at any stage of pregnancy and for any reason, including the baby’s sex.

I found many important ethical questions raised, such as how this difference in law constitutes disability inequality, how it must make people with disabilities feel about how they are valued in society, or how pregnant women of babies with disabilities are being singled out for a much less supportive service than those carrying a healthy baby. Even how the notion of ‘choice’ that is often used with the decision to terminate is often not so much a choice, because that is being offered as the only option and therefore parents are often not ‘choosing’, but being coerced, persuaded to go down that route which they see as the only one available.

Those whose opinions sit at either end of the scale seem to be the ones who shout the loudest and get the most media attention. This cemented my resolve to voice the experiences and thoughts of the quieter many who sit somewhere in between. My nerves grew more and more frazzled. I live in the quiet of the countryside, London is a 5 hour journey away, I’ve never even visited the Houses of Parliament as a tourist, let alone spoke on such a hot topic there.

I found out that I would have about 5 minutes to speak, that’s not a lot of time at all. So, I set about writing a piece that could contain as many real anecdotes from other families’ experiences of testing, diagnosis and support as possible, that would shout about how gloriously wonderful our children are, that would express our concerns that our children are being misunderstood and feared.

I set out on Monday morning, my speech in triplicate in different areas of my luggage in case I lost one. I printed a collage of photos of Natalia enjoying everyday activities, to hand out to the 14 MPs who might be present. After all, a picture speaks a thousand words.

The photo I handed out to the MPs, showing Natty from birth, through heart surgery and enjoying a full life.

I arrived monstrously early to clear security at Westminster, and sat down for an informative chat in the coffee shop with Sue Buckley, Head Scientist at Downs Ed.

Sadly Dr Liz Elliot was taken ill and couldn’t attend. I was yet to meet Lucy McLynn, Mum of Daniel who is Natty’s age, and an equality lawyer who would also be giving evidence, along with representatives from the Cleft Lip and Palate support group (CLAPA), Beezy Marsh, a freelance journalist with a history of research into abortion statistics and DR Kevin Fitzpatrick OBE who was to turn out to be one of the most inspirational speakers I have heard in a long time.

London was freezing, snow was in the air, the Houses of Parliament are very old and not very well heated. I had swapped my country wellies and fleeces for a serious dress and heels. That and my nerves conspired to make me shake, well, not nerves exactly, but my extreme keeness to get my point across in the little time I had.

My time came. This is approximately what I said to Fiona Bruce MP, Virendra Sharma MP, Baroness Hollins of Wimbledon, Baroness Benjamin of Buckingham, Rob Flello MP and their team, including members of the public who were present. The stenographer wrote down the exact words and the transcript will be online at www.abortionanddisability.org in just over a week. Last week’s evidence will be online in a few days. Two more sessions will follow next month including evidence from a woman with Down's Syndrome.

I believe that I typified the completely ‘average’ prospective parent before Natalia was born.  My opinions on abortion were not extreme, one way or another. I understand the need for women to have a choice, but I also have a strong sense of humanity.

I know that I speak with honesty for masses of families with loved ones with DS now. I have woven their shared stories into what follows.

When pregnant, I bandied about the universally used soundbite we all say without thinking;

 "I don’t mind what the sex is, just as long as it’s healthy…"

 (and what if it wasn’t? What is the dangerous unspoken subtext there?)

I have always been respectful of those with disabilities, but did not think it would ever affect our lives personally. Nobody does.

I call this the blissfully ignorant, arrogantly complacent time of our lives. The time before we broke through the glass ceiling, and understood what life was really all about.  The time we protected ourselves with a naiive sense of security that a healthy, clean living, woman like me would, of course, be expecting another healthy baby and that that was all that mattered. That is was the only goal in life. I think differently now of course.

I hate to think what might have happened had we known Natalia had Downs Syndrome, had we not feared the risk of the invasive tests after several miscarriages, had our midwife not wisely said it wasn’t important to know.

What if we had opted for the new early blood test, you know, "or peace of mind"? (Screens only give you peace of mind if you hear what you want to hear don’t they.)

I might have panicked, swept away on the tragic language of doctors;

the "risk of our baby having DS", their "concerns".

Being told that she had "tested positive", the ways in which she would "suffer from" the Syndrome.

I might have wanted that "afflicted" baby out of me as soon as possible, worried about the life she would struggle through, the pain she would feel, fuelled by my own fear and ignorance.  

If the medical professionals we trusted implicitly simply gave us two leaflets at point of diagnosis, one on CVS, the other Termination, and warned us gently and sympathetically not to approach any Downs Syndrome support groups because they are ‘pro life and would try to change our minds with emotional blackmail’ would we have followed their lead?

If our community midwife had rung us at home on Friday evening with the "bad news" of a "chromosomal abnormality" (or worse still popped a scribbled note, not in an envelope, through the front door for extended family to find) and straight away said there was a slot for a termination on Monday morning, would we have assumed that was our only viable option?

The answer is I don’t know what we would have done.

Perhaps I would have wanted to keep the little life that was moving inside me, and my husband not...what then?  Perhaps we would both have rallied and strengthened ourselves in time.  Perhaps we would have had a balanced and unbiased consultant who gave us all the options, they must exist. Who knows.

But approximately 92% do feel there is no other way out in a society that still stigmatises disability and with support networks ever decreasing.  

I do know parents aren’t being given balanced information in order to make informed choices and are left with little or no support or couselling during or after testing, diagnosis or termination.

A woman I met recently was sympathetically told ‘this must have been a very difficult decision for you to make’ by a midwife as she birthed a baby she was sadly miscarrying naturally. Such is the assumption that parents will terminate.

Other couples, having made the decision to continue with a pregnancy are being asked if they are “sure” at each scan and medical appointment, and reminded that a late termination can be “arranged”.

I like to hope the reasons for this are the doctor’s own ignorances, an out of date view of disability, a residue from the days of institutions.

I fear it is more a question of cost.

Natty is 6, an ambassador, a teacher and melts hearts wherever she goes. She puts back far more into society than she takes from it, as she entertains, laughs, sings, dances, jokes, brings people together, even models professionally, bringing inclusion into advertising and widening our narrow concepts of beauty.  She has taught many acceptance, understanding and patience, for inclusion is a 2 way street that I sadly missed out on growing up in the 70s.

She has made me a better person.

She intuitively watches out for the emotional needs of her friends and classmates, always there for the needy, the upset, the ones with the bumped knees, anyone who needs a quick rendition of a Mary Poppins tune to rouse them.

You see, a person's worth can never be measured in pounds coins.

Having a disability does not make you sub-human and we should therefore all be protected by the same laws. There will always be extreme exceptions needed to protect the most vulnerable women in society, but the abilities of the foetus should not be a factor.

Do I think DS a serious handicap? No.

Do I think it’s a reason to terminate on it’s own? No, although I would never judge anyone's decision. It is not an easy road.

Do I think terminations up to and including during birth should take place? No. When I told those in our community about this Inquiry, all were universally shocked that this is legal in our society.

“Barbaric”

“Archaic”

“Appalling”

“I’m stunned”

“My little one was only X weeks when she was born.”

“DS, Cleft lip, club feet? Whatever next, ginger hair?

I leave you with the words of Natty’s big sister Mia, 8. The sibling I worried would be affected negatively by her disability in the early days:

To Natty

I love you so much

and you are the best sister

in the world and so preshus to me.

You are so important to me

and if you weren't in this world

my life woudn't be the same

and that would be terrible.

So, I love you very much and you mean evrything to me

Lots and lots of love from Mia xxx

That, in a nutshell was that. Others spoke factually and brought figures and legal points to the table. We were all a different shade of the same painting. Every one equally important part of the bigger picture being created.

There followed questions on whether we thought eugenics was at work. We all had to agree it very much looked that way.

What did we feel should be done to support families. Be given balanced info of all available options, offer prospective parents a chance to meet existing families, change doctors’ loaded language to more neutral and person-centred lay terms. I am still reeling from the Mum of a little one with a cleft lip who was told during a scan that her baby had ‘a facial deformity’.

There are many incredible medical angels out there. Thank you to them. Let’s create a few more, uncover the hidden statistics and get some proper balanced support for parents, whatever their decision is at the end of the day.

Downs Side Up Uncovered

It's that time of year when we begin thinking about World Down Syndrome Day which is coming up on the 21st March. The date represents the 3 of chromosome 21 that individuals with Down's Syndrome have. 

To raise awareness it is also Lots Of Socks Day, or Different Socks Day as I prefer to think of it. For we are all unique and play an equal role in life's colourful tapestry.

We can all get involved in this, wear different funky socks, dare to be bold, get your school involved, your colleagues.

I've decided to do some fundraising for 3 major charities; our local support group, the CDSSG, the Down's Syndrome Association who help families on a national level and Down Syndrome International who work globally.

What am I going to do? Run a marathon? Cycle from Lands End to John O Groats? Sit in a bath of baked beans? Sky dive? 

No. I don't have the time or the stamina for the first two options and I'm not very keen on beans, and I did a sky dive for charity when I was at college, so...

I'm going to be taking my clothes off for a photo shoot. I'll be protecting my modesty with a multitude of differently coloured socks.  Yep, that's right, I'm getting my kit off Calendar Girls style.

Yep, that's right, I'm getting my kit off Calendar Girls style.

OR TEXT DSUU 47 £AMOUNT TO 70070 TO DONATE

How on earth did this all came about? It's is a question I have been asking myself the last couple of days as I nervously prepare for the hoto session.

It began last year at the Britmums Live Brilliance in Blogging Awards ceremony, where I met Kate @kateonthinice for the first time. Kate and I really hit it off and shared a giggle over a glass of bubbles. We are both quite different, but our personalities slotted together, and it felt like I had always known her. It was a very rare evening where we felt like women, friends, writers, not only Mums.

Kate's blog The Naked Mum is a wonderfully supportive community for Mums trying to value every aspect of their lives, whilst supporting one another. She's had an idea to ask one blogger a month to pose naked, a way of showing that we are not just mums, but women, wives and partners too.

Kate says we should try things outside our comfort zone. It's better than regretting not doing them later on in life. And after all, in writing a blog, one lays ones feelings bare every time you press the publish button.

But more than that I want to show that Mums of children with Down's Syndrome, in fact any disability, are just like everyone else. We have wobbly bits and bits we like to hide, there are the unwanted pounds, places we are proud of, bits we don't mind flaunting, bits that have been stretched beyond return but most of all our wonderful bodies have made and nourished our beautiful children, just the same as everyone else. I am yet to find the green scales replacing skin.

Natty gets her first taste of breast milk at 4 days old

I remember when Natty was born, that I felt ashamed of my body,  foolishly guilty that it had not got it quite right. I have also suffered 5 miscarriages. By getting naked for this year's WDSD I am burying that ridiculous notion and I hope it helps other women celebrate the wonder that is creating all and every life.

I also help to raise awareness for World Down Syndrome Day and raise some money for those wonderful charities. Please sponsor me.

Hayley x

Something for Special Siblings

Mia welcomes Natty home.

Mia was two years old when her Mummy became pregnant with Natty.  

There had been 3 miscarriages in between, so there was very little excitement, more apprehension and a sense of bracing for the next possible emotional upset.  (Oh, the irony!)

But the morning sickness kicked in.  A very good sign that things were going ahead.  But boy did it kick in hard.   Mia's Mummy became a useless, exhausted, humourless, mess.  

She couldn't eat or drink anything except San Pelligrino water without bringing it back.  She couldn't even cook nice meals any more, as the smell made her ill.  She lost weight and looked really terrible!   But ready meals weren't so bad, in between Daddy's great cooking.   

Little Mia would sit and worriedly watch her, rubbing her back and saying "I don't like it when you're sick Mummy."  Mummy wasn't much fun during these days, there were definitely fewer zoo trips and more CBeebies hours clocked up than she was used to.  Mia looked forward to time with Daddy and Mummy's brother Uncle Carl, who would swoop in to do wheelbarrow races in the garden, or make helicopters out of boxes.

Already, as with any first child when the second is on the way, Mia's life had begun to change irrevocably.  But she began to bond with the baby in Mummy's tummy.  She saw her on the scan photos, talked to her at story time and, amazingly, the baby would talk back, telling her to eat her greens!  

The night Natty was born, Mia went to stay with her Godmother, her first sleepover.  So spoilt, such fun, so grownup. 

On her return the next day, everyone was so sad.  Mummy and Daddy were crying.  Uncle Carl and Daddy were dismantling the baby's crib, putting it in the garage.  Where was her sister?  Grownups explained that 'Natalia' was not well.

She was taken to The Hospital, a place where they made you really scrub your hands hard with strong soap.  So desperate to see and hold her little sibling, she took a 'Little Sister' babygro gift for her. Amazingly, Natalia had a matching 'Big Sister' T Shirt gift waiting in her crib just for Mia!  It was hard for Mia to understand that they could not exchange these gifts personally because the cold she had could kill her sister if she gave her a hug.  She watched Mummy do it for her, from behind the barrier of a glass window.

Later, Mia and Uncle Carl would watch Natalia being Christened from behind that same glass.  Dressed only in a nappy and various tubes and monitors, attended only by Mummy, Daddy, Grandma and the hospital minister, but Natalia too was certainly missing the sound of that voice she heard the most while within the safety of her mother, that of her sister.

Days passed, Mummy virtually lived at the hospital, but made sure she was home to share breakfast and a meal and a game with Mia each evening.  Mia spent her days with Grandma. 

Emotionally exhausted Mummy and Daddy held Mia close between them in bed each night.  She felt like their only precious glimmer of normality in a world that had been torn apart and turned upside down.  Her health, beauty and perfection seemed too impossible to be true.

As Natalia grew stronger and Mia's cold was fought off, the two were allowed to meet.  They were treated to the use of a private side room as Mummy was spending 18 hours a day at least trying to teach Natalia to breastfeed.  Mia carefully sat in the middle of a large bed and was allowed to hold her sister on her lap.  She was unphased by the tubes.  She just looked into her sister's eyes, kissed her and chatted to her.  For the first time, Natalia opened her eyes and turned her head towards the sound of that oh so familiar voice, the one that had been missing.  In the days that followed, the only time Natalia would wake long enough to feed for more than a couple of minutes was if her sister was chattering away in the room.

The relationship between the two sisters was set in stone from this moment forward.  

In hindsight, the look of worry, of a very deep understanding is evident in little 2 year old Mia's eyes in photos of this time.  She grew up over night.

She gave her teddies diuretics.  She held the syringes high and still  as they fed her sister's milk into the naso-gastric tube.  She gently helped to wash her in their shared baths.  Despite Mummy and Daddy being terrified for the frail infant,   Mia was always allowed to hold her when she wanted a cuddle, as they knew this bond was crucial.  They kept the fact that their hearts were in their mouths well hidden.

Mummy has always been aware of how tough things can be for Mia.  Natalia has always taken a lot of time, care and patience whilst creating a lot of worry.  But her initial fears for how Natalia's existence would effect her sister have been allayed.  Mia has grown into one of the most sensitive, caring, non-judgmental and responsible 7 year olds imaginable.

Mummy has always tried to factor in special time for her.  When in hospital, sharing a camp bed at Natty's side, this was in the form of little treats and nice art activities.  During Natty's heart surgery, Grandma took Mia to the science museum in Bristol in between visits.  This way she was given special attention, but not excluded.

These days, Mia's parents acknowledge her maturity and compensate for the attention Natty demands, and so freely gets from strangers, by building in special alone time with her.  Shopping trips, meals out, little beauty treats and stay up later night.  Just watching X Factor without your little sister is great for any older sibling.

Diagnosis Down's

Mia kisses her unborn sister.

Today I heard that a friend of a friend of a friend on the other side of the world is reading my blog.  

She and her husband have just received the diagnosis that their beautiful unborn baby has Down's Syndrome. I hear they are finding strength in our photos and words and are moving forward with the pregnancy. It's hard to begin to describe how I feel about this...other than just a huge sense of responsibility, an enormous amount of love sent to this couple during this time of devastating shock and a deepened urgency to let a wider audience see the realities of Down's Syndrome today.

I think back to our pregnancy, and wonder how we would have felt and reacted had we known for sure that our second baby girl had Down's.  I know many couples who say the ante-natal diagnosis gave them time to get over the shock before meeting and bonding with their baby.  I hold these people in high regard, how strong and firm in the knowledge of their own strength they are.

I hate to think what might have happened had we known.  I might have panicked, wanted that imperfect baby out of me as soon as possible, disgusted by her imperfections.  Perhaps I would have wanted to keep the little life that was moving inside of me and my husband not...what then?  Perhaps we would both have rallied and strengthened ourselves in time.  Who knows...

But I am not, and would never be one to judge any decision that any mother makes.  We cannot understand another's path unless we have walked in their shoes, understood their circumstances and family backgrounds.  The same goes for those who feel they cannot cope with Down's Syndrome when it surprises them on birth day, and choose to offer their child up for adoption.  I say with honesty that it crossed my mind back then, and had it not been for supportive family, friends and community, who knows what fallout we would be suffering now.  A fallout that would last a lifetime.

All I can say, with a smile of pride on my face from where I stand now, is that Down's Syndrome alone is not a reason to terminate a pregnancy or give away a much wanted child.  We must not judge, but support.  We must dispel fear with love and humour.  We must enlighten the ignorant with beautiful examples of our fully rounded children leading happy integrated lives.  

Live, love, laugh, learn, eat, drink, dance, make friends, enjoy nature...what more do any of us want out of life.

But I refuse to provide a sugar-coated Disney version of Down's Syndrome.  There will be worries.  It will be hard work at times.  Some of the waters you cross with be unchartered.   You will wonder at each turn if you have taken the right routes.  Most people will be supportive but some will patronise your child.  Allow yourself time to talk to them all regardless.   

There will be illness, perhaps surgery, but you will find an inner strength to cope, the same way you would cope if your spouse  or any other child became ill.  You will meet amazing parents who have done the same along the way, and you will share a glance that instantly says "We have both broken through the glass ceiling of life, haven't we."
Others won't 'get it', but you will smile and hope they stay by your side regardless.  Your child will excel at some things and really struggle to learn others.  Just ask my husband what I am like if someone throws a ball at me, and he will tell you that we are not all good at everything!
There will be days when the stubborn behaviour makes you want to scream.  But that is just parenthood.  

A (thoughtless) pregnant mature Mum once said to me, with Natty in my arms, "I'm having all the testing because I wouldn't have time for one like that."  Well I guess if you haven't got 'time' for a child like Natty, then you haven't got time for any child.  Full stop. 

But listen - all children are different.  Some are prettier and cleverer, some are whirlwinds and others are shy, some are loners others thrive on attention.  At the end of the day, each child with Down's Syndrome reflects it's family, looks like it's parents and gives back to life what has been put into its upbringing.  A child with Down's Syndrome is more like it's family than other children with Down's Syndrome, although there will be some similarities.

I wish I had known all this when Natty was born.  And this is my simple message to those just starting on this journey.