Reader's Story - by Sarah Stevens

A brilliant story. You might need to grab a cuppa first.

Now I must confess that I was quite excited at the prospect of writing this guest blog. I’ve often thought that I should write things down, but have never really had the incentive – so thanks for the opportunity! I want to tell you our story in the hope that, particularly if you are just starting on this journey, it will provide some hope for the future and help you to realise that it is not the end of the world, just the start of a whole new one – welcome to Holland and all that…

Lets start at the very beginning…
I’m Sarah, now 33 years young and Mummy to George (the one with designer genes) who is almost 5, and Toby who arrived last September. I live in glorious Gloucestershire with my lovely husband and have my Mum, Dad and sister just round the corner. When not being busy on maternity leave, I teach Reception in an infant school. I got married in 2007 – the week after the floods, and with no running water, meaning I had to shower on my wedding day in bottled water from the sink – and managed to convince my other half that we should start trying for a baby straight away; I had lots of friends who, for one reason or another, just weren’t getting anywhere with this whole baby making thing, and so I was paranoid that we would be in the same boat. Imagine my surprise (and hubby’s subsequent protestations that he’d been conned) that the day after returning from a fortnight’s honeymoon in Lake Garda, I started to get inklings that we may just have been lucky first time. The test a fortnight later proved me right. And hubby reckoned he’d know if I’d been misbehaving as the baby would come out looking like one of the 118 118 blokes, as everyone around us on holiday could have come straight out of the advert.
I remember as clearly as anything (and I don’t know since if this is significant in a spooky kind of way) having a chat with my midwife at about 7 weeks gone about blood tests, amniocentesis tests etc – we had decided that we would never opt for an invasive test, because of the risk of miscarriage, and so my midwife’s advice was not to start the ball rolling by having the bloods at 12 weeks if we weren’t prepared to stop it by finding out one way or the other. I often wonder now, with the benefit of that wonderful thing called hindsight, what the numbers would have been. Would they have shown that I was high risk? Would I have wanted to find out more? A good friend of mine had a result from her first blood tests of 1 in over 4000 – so low risk that you can’t get much lower - yet went on to have a little girl with Down’s that had remained undetected. In my mind, I was only 28 – come on, what were the chances? Things like having a baby with Down’s syndrome only happened to older women who’d left it late to have their babies. Interestingly, I have found out since that 28 is the average age of a woman to have a baby with Down’s – obviously great minds thinking alike and all that….

The next nine months…
The pregnancy was a breeze – no morning sickness, no cravings, nothing. The 12 week scan showed a very wriggly little thing, and the 20 week scan showed baby bouncing round even more. Again, I can remember as if it were yesterday the sonographer complaining that the baby was in a very awkward position, making it difficult to see things and get measurements. However, it was clear that there was nothing glaringly wrong, all major organs intact, and so she happily packed us on our way clutching that precious grainy black and white image – knowing that the next time we saw our baby I would be holding it in my arms, me looking radiant and flooded with love for this little bundle, completely forgetting the agony that I had just been through…*COUGH* Looking at that picture afterwards, I had a niggling feeling that something wasn’t quite right. The baby had a huge belly, and it just didn’t look ‘right’. However, I put it to the back of my mind – I wasn’t a medical professional, they had said that everything was OK, so I needed to stop being neurotic. I dutifully turned up for all my appointments, never seeing the same midwife twice, but as long as everything was bobbing along then that didn’t seem to matter. Even when at 32 weeks I was told my fundal height measurements had dropped from being 2 weeks ahead at 28 weeks, to now 3 weeks behind, there was no need to worry – still all within normal limits.
I finished work at just short of 36 weeks and was happily looking forward to putting my feet up for the Easter holidays, and then my maternity leave starting officially when the schools went back after Easter. However, baby had other ideas and at one minute past midnight on the day I hit 37 weeks, the contractions started. Now anyone reading this that knows me professionally will know that I am generally quite an efficient person – indeed, after he arrived, it became a running joke about how punctual his arrival was, as soon as I was full term. After a couple of hours at home taking paracetamol (what frickin use is paracetamol when you are in labour?????) we ventured into hospital in the middle of the night – it was frosty, quite unusually for April, and I remember fiddling with the heating dials in the car to try and distract me from the pain. Arriving at the hospital, we were met by a very frazzled looking midwife who ushered us into a side room and then into the water birth room – brilliant, this was on my carefully typed and sub-headed birth plan, I was going to float around the birthing pool like some water-borne goddess and hum my way through the pain. I was told that I was going to be examined and then sent down to the labour ward, as, being a first time Mum, I didn’t know what labour felt like and therefore probably wasn’t in labour at all – IF THIS WASN’T LABOUR, HOW MUCH DID IT ACTUALLY HURT??? As I undressed and shifted my considerable bulk (as I saw it) onto the bed, I noticed the midwife looking me up and down very carefully.

You’re very special now…
“Has anyone commented that you have a very neat bump?” she enquired, now a very different tone in her voice. What?! Did she mean small? Was she looking past this ten ton Tessie on the bed and talking to someone else? “Er, no” “Hmmmm”. Now I have learned since that ‘hmmmmm’ in medical vocabulary means “I know something is not quite right here, but I need to buy myself some time to work out what I am going to do about it.” She quickly pulled on the old latex gloves and stuck her hand where my dignity once was, and ascertained that I was in fact 4cm dilated, actually in labour, and therefore not moving from this room without a baby. She had a feel of my tummy and said that she thought baby might be quite small. Now I was only tiny at birth, despite being 2 weeks overdue, so that combined with the fact that this baby was 3 weeks early did not alarm me at this point. She popped the monitor on my tummy, and we all listened with an ‘ah’ as we heard that little heartbeat going ten to the dozen. Then another contraction came, and in dealing with that I failed to notice that the heartbeat had stopped, before magically reappearing when the contraction was over. Much muttering followed, me complaining about the obvious poor state of repair of NHS equipment, when another contraction came and the same thing again. It soon became clear that whatever was going on in there, this baby was not coping well with being squeezed. The midwife thought it might have the cord wrapped around its neck, and suggested I shift onto my side – fortunately, that did the trick and normal ‘bum de bum de bum’ service was resumed. At this point I realised that no-one had mentioned pain relief and the contractions were getting a little eye-watering to say the least. I thought that the midwives knew best and so thought I’d wait until they offered me something – that came in the form of gas and air sometime later, which was only useful to me as something to bite down on and had no pain relieving properties whatsoever.
We meandered along for a couple of hours and I was told that the registrar would be down to break my waters, as they wanted to get baby out and check the size. So along she came, brandishing what can only be described as a crook for a doll’s house sized shepherd, and again ventured into places that you’d only willingly let someone with medical training go with an implement like that. She poked around for a bit, declared “there they go” and then stood back waiting for the flood – only it never came. Nothing. Not a drop. They knew that they hadn’t broken naturally as whatever holds it all in was completely intact. Seemingly unperturbed, she breezed out of the room, saying that she’s see me again in 4 hours. The midwife swiftly followed as someone was clearly being killed further down the corridor. Hubby decided after all this activity that he needed a wee, and disappeared into the en-suite. That was at 6.33am.
 Lying there on my own, I suddenly felt as though the entire lower half of my body was being pulled away from the top, and the urge to push was unstoppable. I screamed for someone to get the midwife, poor hubby came back into the room still fastening up his jeans and ran into the corridor shouting for someone. The midwife reappeared wondering what all the noise was about, looked between my legs and shouted “we have a head” – then ran and hit the red panic button on the wall. Love that, bit of drama – just like on One Born Every Minute. Within what seemed like seconds there were about 8 people in the room, all of them peering up me as George David entered the world, after just 2 pushes, at 6.35am. “What is it?” I enquired (since I’d had a feeling that it was a boy all the way through) “It’s a baby!” declared the midwife, seemingly making the revelation for the first time in the history of the world. I looked at her and politely asked for clarification as to whether we were team pink or team blue. And then she held him up, declaring that we had a ‘tiddler’. There he was – a bag of skin and bones, screaming his head off at the shock of his rather hasty entrance into the world. I was in complete shock – I’d gone from being 4cm dilated to giving birth in two minutes. Why were all these people here? And where was my chubby little baby?
One of the people that had been in the room was a paediatrician, who immediately whipped George off to check him over. He weighed a tiny 4lbs 2oz at birth, and literally had not an ounce of fat on him. He was firing questions at me – had I been smoking throughout my pregnancy? Had I been drinking? Certainly not on both counts. He could not maintain his body temperature (no fat to store energy reserves) and his blood sugar levels were low. They told us quite early on that he would have to go to special care to be fattened up and to stabilise him. However, he was breathing normally, and so was put on my chest under 5 blankets to try and warm him up. Special care was apparently quite busy and so we were told that, as his life was not in immediate danger, he could stay with us for a while. Cheers, thanks for that. I have no doubt that every single person in that room as I delivered – bar me and hubby – knew straight away exactly what was wrong. However, there is probably some sort of protocol as to who delivers this kind of news, and so nothing was said – we were simply told that a senior paediatrician would be along to see us once the shift changed. At that point, I didn’t even know what a paediatrician was.
Amidst all the early drama, I was also of course then required to deliver the placenta and finish the job. The midwife, along with a very nervous looking male student midwife, stood and waited patiently until it slipped out. Its eventual appearance was met with an ‘oh – that’s NOT what it’s meant to look like’ – as what came out did not resemble a healthy, dinner plate sized rump with juicy cord dangling from it. Indeed, what appeared was a shrivelled lump with what can only be described as a piece of string hanging limply from it. The cord was also attached to the placenta via a series of blood vessels, rather than the more conventional way. We discovered later that, in addition to the Down’s, I had also suffered a very rare complication with the placenta, which affects about 1 in 1000 pregnancies. Some argued it was because abnormal cells in baby equals abnormal placenta, others suggested it was simply bad luck. Either way, it had pretty much packed up weeks before I delivered, denying George the nutrition that he required to grow but luckily still delivering whatever else he needed to survive. He had eaten his own body fat away, then had the amniotic fluid, then bailed out in such dramatic style as there was simply nothing left. Well done Mother Nature – a fairly timely intervention methinks ;o)
As every new Mummy does, I spent the next couple of hours gazing intently at this little scrap in my arms. I knew something was wrong him. I knew. But never, not once despite all my staring at those squinty little eyes, did Down’s syndrome cross my mind. I don’t know what I thought it was – something to do with this placenta problem may be? Get a bit of meat on him, then take him home. Lovely.

Then we met Dr Day…
At about 9.30, after all the initial excitement had died down, we had this promised visit from a more senior doctor. Dr Alan Day (something of an institution locally) breezed into the room, followed by a large entourage of medical students – clearly they knew what was about to happen, and we, unwittingly, were about to be the guinea pigs for their first lesson in how to deliver bad news. We had some small talk about my job, the pregnancy etc., before he came and took George off my chest, and promptly dangled him upside down. Clearly, having been told what he had about this unexpected arrival, he was expecting this little thing to just flop. George, clearly naffed off at being dragged away from the warmth of Mummy’s boob, wailed loudly and did that startled baby thing, stretching his little arms and legs as far as they would go. “Oh – maybe it’s not then” I heard him utter. Sorry?? What?? Maybe it’s not what?? I think he could tell from my rather puzzled face that we knew nothing of what was about to come. He gently placed George back on my chest, looked me directly in the eye and delivered the sucker punch; “We think George may have Down’s syndrome.” Now you know in cartoons where you see a character’s stomach fall right out of their body and hit the floor? That’s what it must have looked like in that room at that point. I looked at hubby, who had gone rather pale, and then said the first thing I could think of; “well, we like a challenge.” I stared back at my baby and suddenly everything crystallised. Of course he had Down’s. Just look at his eyes. How could I not have known? Dr Day muttered something about needing to do blood tests and wait for the results to confirm it, blah, blah. All the confirmation I needed was lying right there in my arms. The next couple of hours were a bit of a blur. A cot had come free in SCBU and so one of the nurses came down to take him. Hubby went with him while I got up and showered. Having been sat in post-birth gunk for 5 hours, I needed that. I also mused that it was the longest I’d been able to go without needing a wee for the last 9 months. Trying to keep a brave face on it. I was eventually wheeled down to see him and taken into the intensive care ward. I was expecting him to be wrapped up in a nice blanket having a snooze. What I was not expecting was my baby to be in an incubator with numerous wires coming out of him, tubes going up his nose and all sorts of machines beeping around him. What had happened in that trip down the corridor? Why did he suddenly need intensive care? Hubby had gone home by this point to try and get some sleep (nice idea) and so I sat while the doctors gently explained what all the wires were for – nothing to worry about, just precautionary until they established what he needed treatment wise. Did I mind him having formula was one, I felt, of the more ridiculous things they asked. Looking at this bag of bones, food was surely the first thing he needed. So out came the high calorie stodge. I was told that he was being treated as a 32/33 week premmie because of his size, although he was breathing on his own so that was a bonus. I kept being introduced to different medical people as George’s parent. And I kept looking around the room for who they could possibly be talking to, as I was still in such a state of shock that wasn’t really taking things in. Then I asked one of the nurses for a drink of orange juice. With a double vodka in it. Or cider, I wasn’t fussy really.
The Glorious NHS
Now I know that the NHS gets a lot of stick. But we have nothing but praise for them. I was taken down to the ward, to my own private room with en-suite – past all the other wards and rooms where Mummies were enjoying those precious first few hours with their new-borns. This was, I soon discovered, so that consultants could come and talk to us privately – which many of them did. Things were still a bit surreal and I was going through the motions, answering the congratulatory texts – announcing the birth, we simply said that Mummy and baby were being ‘well looked after’. We didn’t have any family living locally at that point, and decided not to tell anyone about the possible diagnosis until it was confirmed. So I also had to try and explain away the reason that George needed special care, without giving too much away. The staff, obviously all aware of what was going on were fantastic – caring and supportive without being patronising. They were keeping a very close eye on me as my blood pressure had shot up following the birth – I swear they thought I was going to explode. It took many days of many readings, blood tests and examinations to convince them that maybe it was because I was under just a teeny bit of pressure right now? Maybe stress related? I mean, I’m no doctor…
Special people in special care…
Since George arrived, and we had our 10 days in SCBU, I’ve often thought that I’d like to go along to some NCT classes or something and talk about what it’s like to have a baby in special care. No-one tells you about that beforehand. You are taken around the unit on your hospital tour, if you are lucky – but walking through that maze of wires, beeps, machines and tiny, tiny babies must be terrifying. That week and a half was one of the most positive experiences to come out of all this. You are thrown together with a group of people who you would never normally come across in everyday life. And I am proud to say that I am still in regular contact with most of the ‘SCBU crew’ – we muchly enjoyed coffee and cake to celebrate our little babies finally starting school last September!
 It is such a high pressure environment, and there is so much at stake, yet we helped each other through it with laughter and tears in equal measure. Everyone in that room had a different story to tell, some with a heart breaking past, others that were making history there and then (1 in 13 million was it Kathie??). But we bonded. Over boobs and bottles, we whiled our days away. Those, like me, that were first time Mummies could obviously be there more than those that had others at home to look after. And it was exhausting – physically and emotionally. Which sounds ridiculous, given that you spend most of the day sat on your bum, or attached to a machine so powerful that it’s a wonder my nipples didn’t end up in a bottle. If George had a good day, then so did I. If his bloods were misbehaving, I became a gibbering wreck. I have never cried so much as I did in those first few days.
The day after I had given birth, I was summoned down from SCBU to talk to a consultant gynaecologist, Mr Hayman. (Why, after all those years of training and experience, do they have to drop the ‘Dr’ and go back to being ‘Mr’? Bit of a waste if you ask me..) I arrived at my room to see this very jolly chap, sporting a rather fetching pair of braces and a bow tie, sat on my sofa surrounded by nurses. Ah, another impromptu staff training session coming up here. “Hello, Mrs Stevens. I’m here to talk to you about future pregnancies.” I’m sorry – what? Future pregnancies?? Here I am, walking like John Wayne on a bad day, with a baby in special care that I have been told has Down’s syndrome, and he wants to talk about me having MORE BABIES? Clearly off his rocker. I just stared at him. And cried. And cried and cried and cried. Clearly uncomfortable at this outpouring, he quickly added that I needed to make an appointment to see him at my earliest convenience. Then he left. When we did eventually have that appointment with him, when George was about 8 weeks old, he turned out to be the most lovely chap who simply wanted to be able to answer any questions that we may have had. He looked after me during my second pregnancy, and remembered George – not believing that he was, by then, almost 4.

The Verdict
George was born on a Tuesday. The results from the blood tests that confirmed the doctor’s suspicions came through on the Friday. The same day that my milk came in and the normal ‘baby blues’ hit. Talk about a triple whammy. We then had to set about breaking the news to our nearest and dearest. We decided that hubby would ring both sets of parents and tell them. He rang my Mum and Dad first – both so excited about becoming Grandparents for the first time. Mum answered and her response was simply ‘bring it on’. I love my Mum. She was the only one in at the time, and so had to tell my Dad and sister when they got home. Apparently my Dad cried. Hubby then phoned his Mum. His resolve was weakening as she answered the phone, and when it came to it he was so overcome that he couldn’t speak. So I took the phone and explained what had happened. A very different personality to my Mum, she really didn’t know what to say – I think it was something about Down’s children being very loving. The age old stereotype. We asked both families to spread the news, and then we sent out a text of our own. The response was amazing. Most positive, and only a couple saying how sorry they were about our news – they really bugged me, as what was there to be sorry about? This was no-one’s fault and at the end of the day I was taking home a beautiful baby. Which is more than some people get after years of trying. I’ve read many articles about how people experience feelings of guilt, or grieve for the child that they have lost; I could never see that, no-one had died, and how was I to know what this baby would achieve – Down’s or not? I am a very rational person, and that side of me totally took over. After having probably the worst day of my life on that Friday, the day after things took something of a turn…
Onwards and Upwards
I went up to SCBU from my cosy room at the Hilton on the floor below on the Saturday morning. I walked in to where I had left George all wired up in his incubator the night before – and he wasn’t there. A surge of panic washed over me until it was gently pointed out that he had been moved to the other side of the room – and there he was, out of the incubator, into a ‘hot cot’ and with only his feeding tube left in as he was apparently being quite male and couldn’t generally be bothered to wake up for his feeds. I could now touch him, pick him up, cuddle him and clean up his projectile poo without having to navigate what seemed like the Krypton Factor first. I spent most of every day after that with him on my knee, rocking backwards and forwards, singing songs and playing with his very bendy legs. He spent almost 6 hours straight wide awake one day – and it passed so quickly I hadn’t even realised. From that day on, there were no more tears. Not even when I was allowed home from hospital and had to leave him there for another couple of days. I took his picture, a muslin that smelled of him and kept them next to my bed. We started to get visitors, and the number of presents and cards that arrived was just plain bonkers. But I refused to open any of them until he came home – they simply piled up in the lounge. I didn’t see the point in crying over what had happened – he was here and we had to now learn to love Holland, and not pine over what might have been in Italy. Never did like pizza and ice-cream that much anyway (LIE, LIE, LIE!!!)
When he was finally allowed home, we fell quite naturally into life as a family of 3. The one bonus of having a baby in SCBU is that when they do eventually come home, they are already in a nice feeding and sleeping routine, and Mummy has generally had some time to recover physically from the birth and so is in a better state to care for this little bundle. We began the seemingly endless round of hospital appointments – I did get quite scared when doctors started talking about possible heart defects and the like, as the potential health problems that children with Down’s was not something that I knew much about. Fortunately, all the prodding and poking that he had to undergo in those early days served to confirm that he was suffering from none of the major health problems, only having a dodgy thyroid and peripheral cataracts, which were simply there and not causing any problems with his vision. Fabulous. I do remember taking him for a scan on his liver; before she started, the sonographer made a real point of checking him over, before declaring that it was ‘no wonder this one slipped through the net’. Excuse me, that is my baby not some wet fish. Apparently, George does not have any of the soft markers that they generally look for on the scans – and since his heart was OK too, it was not a case that anything had been missed, simply that there was nothing there to see. The appointments soon became routine, and George started piling the weight on and growing fast.

From there on in…
We soon discovered the previously untapped social scene that goes with having a child with a disability. I was told about various groups that we could attend (and all for free – bonus!), and so I decided to take myself along and check them out. I was, however, determined that I was not going to get sucked into some miserable support group type setup, and would not be going again if that is what they turned out to be. We started at a group for disabled children at a local special school when George was 8 weeks old – and ended up going every week until he was ready to move on at the age of 2. What struck me about the other parents there was how positive they were. No moping or feeling sorry for themselves, they simply got on with it. What some of them had been through was truly harrowing. Rather than boast about what our children had reached milestone wise, we used to joke about how long it was taking them to get there. That is one thing that I found really positive – while friends around me with ‘normally developing’ children were stressing because their little darling hadn’t done this, that or the other, I sat back, quite smug in the knowledge that George would do it when he was ready, and that I had a bona fide reason why he hadn’t done it yet – ha! We made some life-long friends at this group, and George developed something of a reputation as a ladies man – indeed, one new Mum was forewarned about George and his charms by the Physio before she met him – when she asked how old this lothario was (expecting the answer to be in his mid-teens) she was quite stunned when the response came of ‘2 and a half’.
George’s arrival sparked some quite major changes in the lives of those people around him. It was quickly decided that I was only going to go back to work part-time, meaning I could keep going to the various groups that we had become established in. That then threw my planned career path right off, but never mind. My parents decided to retire and up-sticks from up north and move down here. My sister followed suit a few years later. I didn’t realise how much I needed that support until they were actually here – if only for their overnight babysitting services, so that I could get some rest. George has never been – and still isn’t – a very good sleeper. When I went back to work after a lovely year off, they did one day a week childcare for us.
As George got older, naturally the developmental gap became wider and wider. He attended the Early Years unit of another local special school from the age of 2, until last July, when he was ready to move on to mainstream. That’s when we started getting into the realms of speech therapy and all that. I stopped worrying about where he was on different assessment scales -equivalent to a so many month old child - as it became counter-productive, making me often despair at how seemingly little progress he was making. And then he would go and have a surge and prove me wrong. I couldn’t tell you now where he is developmentally. I do know that he is something of an enigma; we can’t for the life of us get him toilet trained, yet you put a reading book in front of him and he’s away. He knows all the high frequency words that ‘normal’ children should know by the end of reception. He knows every single sound (including digraphs) and name for all the letters of the alphabet. His number work and counting is astonishing. But he still struggles to hold a pencil. The school that he goes to were very accommodating, paying for him to have 1:1 even before the LEA agreed to fund it (and that’s a whole other story) – yet they have found him incredibly challenging. Not in a behaviour kind of way, but simply because his general development was so far behind the ‘norm’. I do believe that mainstream is the right place for him – with my professional background, and after doing some volunteer work in a special school, I honestly think that the potential he has is best exploited with 1:1 support in an environment with ‘normally developing’ children. For now. His Teaching Assistant is amazing – she came to the role with no experience, and therefore no preconceived ideas of what he ‘should’ be able to do. She is just going with it and learning along with him. He loves his Partridge.

Now what is ordinary?
I decided to call this blog ‘A Life Less Ordinary’ as it is only now, having had my second little boy, that I realise how different our life with George has been to what is ‘ordinary’. Since he was my first, I could not say how much we had been forced to change how we lived our lives. Appointments and the like became a part of everyday life. I do know that I have met many more wonderful people because of George and I would not change that for anything. I have also had the chance to do things professionally that I would not otherwise have experienced – to the point where I now have very itchy feet and want a real change from teaching. Better get this maternity leave over with first.
There was never any real question as to whether we would have another child. What we had been promised was that I would be monitored much more closely and have growth scans, as a big concern was as to why the size problem had been missed with George. My pregnancy with Toby was so very different, leading me to conclude that this meant that (a) this is what ‘normal’ pregnancy was like or (b) I was having a girl. I was convinced I was having a girl – to the point where I bought pink hats for my hospital bag. A lovely name was chosen. We picked Toby for a boy as this was one of George’s favourite characters from Thomas the Tank Engine, never expecting to have to use it. When he arrived, after a quite frankly excruciatingly painful eight hour labour (give me an arrival like George’s any day), the first thing I did was check whether he had boy bits. Then how many creases across his palm. Two. Thank God for that. We had chosen not to have the amnio again this time (our blood results came back as 1 in 2100), believing ‘what will be will be’. He was delivered by a midwife who had looked after me when I had George – and who was determined that I was going to have a non-dramatic, straight forward delivery the way nature intended… and that is exactly what I got.

Well done if you’re still here – sorry this has been so mammoth, but as I said I’ve often wanted to write things down. We are now almost 5 months in to being a family of 4. George adores his little brother, and the feeling is very much reciprocated. I never realised how delayed George’s development was, even as a very young baby, until I now see Toby doing things that George never did. A definite bonus is that I don’t really know what ‘normal’ milestones for babies are, so Tobes and I are just going with the flow. George is loving school, and they love him. He has already had one young lady round for tea, and is going to her house – on his own, EEEEEEEEEEEEEEEK! – after the holidays for spaghetti hoops. Oh, the romance. He has been to countless birthday parties, and it is lovely to see him being included just like any other child. I can see now how George having Down’s does disable us a family to some extent – however, it opens just as many doors. You can’t have everything. He is a bright, cheeky and loveable little scally, with whom we take things one day at a time. And keep our lives – though a little out of the ordinary – happily ticking over.

Sarah x


  1. What a fantastic blog Sarah. You have always had a way with words. You should be so proud of George and Toby of course. Emma (sat next to you in English) xxx

    1. Mrs Platt would be so proud :0)

  2. What a fantastic blog Sarah, especially the part about special care(personal to me as my son josh was in special care). Well done for writing such a detailed and inspirational account of your experience.
    X Judith, Ruth's friend x x

  3. Rock on, Sarah. What a hopping home you run! George is such a cute boy. Good luck keeping up with everyone, I'm impressed. Thank you for sharing this.

  4. WOW Freak. Lovely to read all this and find out lots of details I didn't know, it has made me cry! I'll never forget getting your such positive text to say that Geoge had downs. You and Ben are fantastic parents. George and Toby are very lucky boys. Love Freak 2 xxxxxxxxxxx

    1. What a positive and beautifully written account of your George.Like many other people, I used to find myself staring at Downs children and feeling sorry for them and their parents. In the last 30 years I have come to realise how very special these people are; their looks and behaviour are different, but there are people from all parts of the world with ‘different’ features and mannerisms. Following the birth of Laura in 1977, I suffered post-natal depression and was hospitalised. After four weeks I went to the OT sessions where I thought I would easily be able to do pottery etc.thinking ’I’m not as ill as most people here’.I met three men in wheelchairs producing exquisite pottery and macramé, they were highly articulate and talked about politics and a variety of subjects. I was not articulate, had no knowledge of politics and couldn’t produce the scrawliest of drawings. I felt angry for not appreciating the gifts I had, and discharged myself. Soon after I set up a keep fit class for mothers and toddlers (standing on street corners to invite mothers to attend).I couldn’t have done this if I hadn’t met these ‘disabled’ men.This encounter helped me back on the road to recovery.Gradually over many years I began to see disabled, and particularly Downs people as ‘another race’ and as 'Gifts from God'. On 11th August 2012, when visiting my brother in Ruislip (my husband and I live in Turkey temporarily) we attended the local Catholic church for Mass. After, I went into the repository to look for a card for a baby and as I turned to leave a young (14 or 40 yrs?)Downs girl, with small blue eyes filling with tears, a small nose and tiny pale pink-lipsticked lips, an unusually pointed face and slight double chin, all framed by long, blond, flick-ups stood right behind me.We held each others gaze gently for about a minute; I felt something incredible was happening yet unfortunately found myself turning and leaving to join my brother who was waiting in the car park to take me to Winchester.I thought of this beautiful face constantly, and wrote her a card with a beautiful fairy, telling her she was a special grace of God, and sent it to my brother to give to her the following Sunday.He tried that weekend and for the next four months to find her again, but no-one knew her. He carries the card around in his jacket in case he finds her.One day he said ''Perhaps she was an angel.'' I remarried in 2005, aged 54. My husband had never married and knew I wouldn’t be able to have children.It would mean so much to us to have a child and we would feel blessed to have a Downs child. In the town where we are living, I have only seen one man (40/50 years old) who has Downs. He sells matches and dresses in grey pinstripe suit in winter and a white t-shirt, braces and trousers in the very hot summer.I have seen hundreds of people in this country who have only one leg or arm, or partial leg or arm, or other startling disabilities. Once picknicking in the pretty parkland approaching the sea, I noticed a bundle on the ground;a mother and her four pretty daughters were eating borek and spicy bulgur. Suddenly there was movement and a beautiful dark-haired boy of about two years emerged from a blanket.His right hand a pinkish, bird-like or lobster claw; the fingers of his left hand were missing except for one thin simpering, piece of flesh. He sat up and I could see his feet were turned backwards.I don’t know whether he will ever be accepted by society; his mother hides him. In London for the Olympics I was so impressed by the courage, tenacity and achievements of Downs and so-called disabled people who,I believe, are amongst us as an expression of God’s deepest love.You and your husband,family and friends are very blessed to have George, but I think you know that. Christine


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