In one ear, out the other

If I’m honest and I’ve always vowed I would be on here, one of my biggest worries for Oscar is Speech and Language. I also vowed not to go on the internet too much and google things like “Will my child talk?” But I did… Stupidly. It says that children with Down Syndrome will typically say their first few words anywhere from 1 year old to 7 years old. On the one hand, there is valuable information out there. Yet, on occasion (like this one), I let myself be a glass half empty type of girl and focus on the negative… And that’s not good.

Sure, there’s masses we can do in regards to therapy to help our children walk, talk, learn, etc. But the hardest thing to admit is that most of it is simply up to THEIR brain and its wiring. There are no certain predictors that a child with additional needs will develop speech, be able to read, be potty-trained, or become self-sufficient. Good signs, yes. But nothing is certain. The not knowing is something I really struggle with.

In the short time Oscar has been on this planet though, I’d say he’s doing pretty well. I’ve had a couple of medical professionals say to me, the fact that he’s doing so well, is a good indicator that he’ll continue to move forward. But, there’s no certainty with anything is there? Oscar babbles just like any typical toddler does. Sometimes a lot. But of course NEVER when we see his Speech Therapist. I sit there, when she produces the “D” phonics card, willing him to start doing his usual “Dad dad dad dad”. But he doesn’t. I swear he knows what he’s doing, the little monkey. And when I’ve got my phone ready to record, to prove to said Speech Therapist that he can, of course he stops. He babbles at home… But not when anyone different comes in to the house and he babbles for Great Britain in the car. I think he’s trying to talk to the trees as they whiz past perhaps? But again, try recording on your phone AND driving. Never gonna happen.

Before you start shouting at the screen at me, I know he’s only just 20 months old, but communication is key, right? The trouble is, from an early age Oscar has been a growler. He doesn’t do it as much as he did but Oscar growled a lot in those early days. It’s very cute and is a big source of amusement when we’re in the supermarket… But it is a little odd, don’t you think? I don’t really know if this is just what children do… Do all children growl? I know one of Oscars friends quacks like a duck, and his mum thinks he’s a little cuckoo. Just for the record, it’s not a ferocious growl, more along the lines of a purring cat. I don’t want you thinking people are scared of him ;0)

We’ve always wondered why he did this and no one really knew. I’ve talked to Speech Therapists and they’ve said its a good thing, in that it’s noise, but I’m still unsure. It could be a sensory thing as perhaps he can feel it vibrating inside his head. Who knows?

When Oscar was 7 months old, I went to my first presentation given by a Speech Therapist. It was incredible to hear all her ideas and advice and so insightful but I came away that day with a heavy heart. I think it was probably one of the first times I’d really thought about the road ahead and some of the bumps we were about to encounter along the way. I guess the magnitude of it all hit me that day. I realised that speech wasn’t going to come easy for Oscar. If we wanted our little boy to do well, we were gonna have to listen and learn ourselves. Parents are the child’s primary teacher, we were told. Sure, a Speech Therapist will give you the tools, but we’d have to put them into practice. I felt sad again. Could I do this? I felt frustrated too, if I’m honest. Frustrated for Oscar that it wasn’t going to come easy. Sometimes life sucks. I listened intently, trying to digest every ounce of information she was giving us. I hadn’t realised that children with DS hear sounds differently. So we might be saying ‘ball’ but they hear ‘hall’. I hadn’t realised that the muscles around their mouths aren’t always fully developed (there’s that low muscle tone again), making it harder for them to make the shapes with their mouths. I hadn’t realised that because they are renowned for having bigger tongues, their speech isn’t always audible. And I also hadn’t realised that as many as 70% of children with DS have hearing problems, meaning that obviously it’s harder for them to take it all in and distinguish between different sounds and their clarity.

I remember around this time, I’d call Oscars name and he didn’t always turn to the sound. I’d do my own mini hearing tests for him. He’d react to my clapping or the squeak of his Sophie the giraffe but he didn’t always turn to my voice. I was told that when they’re so engrossed in something (like a toy) they’re not going to hear anything else (I guess much like my husband so maybe we can forgive Oscar for that!) Something that’s perfectly normal to us, like a washing machine on in the kitchen, can be problematical for them. They might be doing an activity where they have to listen to someone talking and all they can hear is that washing machine. Crazy! I knew at this point, I had a lot of exploration ahead.

I remember one of the other mummies who’d attended and who, I’m honoured to say is a very dear friend of mine now, texting me afterwards saying that she had to stop herself crying 3 times throughout the talk. I’m glad she’d said this as I’d felt exactly the same. Life REALLY sucks sometimes.

Now, I’ll give you a bit of back history about Oscar. After an initial hearing test when he was born, he had to go back to the hospital for a more detailed investigation. At this time, it flagged up that he had congestion in his ears (Glue Ear being the technical term) but we were told not to worry too much. We were referred for further testing and for the first few months of his life, he had regular check ups. Each time they always came back the same – that there was congestion in the ear canal. Oscar was a very snotty baby (sorry, too much information) but because of his heart condition, he was obviously more susceptible to picking up infection and during the first year of his life, he always seemed to have a cold. I use to think to myself, everyone’s hearings a bit dodgy when they have a cold right? What’s the point in testing Oscar when he’s full of it? It wasn’t until he was 15 months and we’d gone for a routine check up, that even though the hearing loss appeared moderate, the audiologist suggested we should do something about it.

We were told that we had a few options. We could either wait and see if the congestion cleared itself. But how long would that take? Would we be holding him back, as far as speech and language was concerned in the meantime? Obviously my first thought was, well let’s leave it and see if it clears up on its own… But in truth, I knew that if we did that, we wouldn’t be being fair to Oscar. Grommets were the 2nd option but we were advised that perhaps it’s best to wait til school age, as sometimes they put them in and they fall out (because our children’s ear canals are so small). They’re only allowed to do the operation 2/3 times maximum so if you do it too early, there’s more chance of it not working. And then she said it. “There’s also the option of the hearing aid”. I’m not altogether sure why I reacted the way I did to this, but I can remember thinking, Oh god, here I go again. Don’t cry, Sarah. Do not cry, you’ll look like an idiot in front of this lady. I guess the heart surgery was black and white. There was a hole, they fixed it. But with the hearing loss, I really felt upset that this could have a big impact on his development. I could have coped with glasses, I thought. If he had glasses, he’d have looked like that gorgeous kid off Jerry McGuire but a hearing aid!!!! It was, I’m ashamed to admit it, my usual shallow self doing the thinking (please refer back to my previous blogs regarding baby gap clothes and converse trainers). I didn’t want my little boy to wear a hearing aid. I didn’t want him to have Down Syndrome AND be deaf, that wasn’t fair on him. (obviously he’s not deaf but my rational side, yet again wasn’t playing ball). I’d seen children’s hearing aids before as a few of the kiddies at Oscars playgroup had had them and I knew they weren’t exactly subtle. None of this, “hearing aids are so discreet these days, no one will even notice”. No, babies hearing aids aren’t like that at all. Obviously, they can’t be too tiny for fear of them falling out and them picking them up and putting them in their mouths. The hearing aid the audiologist was talking about was on a thick cotton band.

She told me to have a chat with Chris and come back and let her know what we wanted to do. I knew we’d both be united on this. What was best for Oscar? This is our usual take on things. And getting the hearing aid was best. We felt we had to give him the chance to be able to hear things properly. What would be the point of him walking around hearing muffled sounds, when with modern technology, he could hear perfectly well with the aid. I needed to get over the vanity of it all and get on with it.

Oscar didn’t tolerate it at first. Every 2 minutes he’d remember it was on his head and whip it off. He’s getting a bit better now but he’s not the biggest fan of having things on his head, let alone a dodgy band. It doesn’t bother me as much him wearing it although I must get better at putting it on him more frequently, as a few friends of mine had never even seen him wear it. Proving just how rubbish a Mummy I am at making him wear it. I need to remember that Glue ear can not only cause deafness, but infection, pain, delayed speech development, temporary behaviour problems and poor school progress. If left untreated any of these conditions are likely to persist, possibly affecting long-term speech, language and educational development. People always say to me… awe he looks so cute with it on. He looks like a little rock star. The blue band goes with his blue eyes and bless them for trying to make me feel better. He does rock it, if I’m honest and who knows, the congestion might clear up once he’s a bit older. Here’s hoping.

Our paediatrician has been amazing at getting us all the referrals we need for Oscar. I have no complaints at all, however Speech and Language therapy is classed as the biggest area of need and the number of children on the waiting list, far out weigh the available S&L Therapists in our area. We’re currently on the list but we do have private SLT weekly which has been great. We’ve been introduced to Jolly Phonics already and Sound Cards. We have them at home now and every once in a while I’ll do them with Oz. It’s incredible to see just how much the children have started really watching the therapist when she speaks. She gives them the opportunity to choose and pick the sounds out and miraculously, they always get it right. (Maybe it’s the fact that she puts the card that she wants them to pick further forward than the other… or perhaps our children are geniuses). She also has bubbles that she blows onto their lips so the children start to move their mouths in response and anytime they even make a peep of a noise, she reacts with delight and mimics their sounds. It’s been said that with the early intervention of sound cards and phonics, some of our children go to school already reading and ahead of their mainstream peers. In your face, the 1950’s and your prehistoric attitudes!

We know that our children are visual leaders or learning through looking. They learn from watching others which is why it’s so important for Oscar to be around other children. We’re told we should use other children, “Look at what Polly’s doing, Can you do that?”

It’s important we show our children how to play, letting them copy us and promoting them to take the next step but then stepping back so that they don’t become too reliant on us as the adult. This encourages them and their independence. What we see, all too often, is that other children end up “mothering” our children. In that they copy exactly what we do. If Oscars on my lap, while all the others are sat on the floor, his friends will think he’s younger. I don’t baby him just because he has DS. I encourage him to play and explore. He might be a little bit smaller than his peers but he doesn’t get mothered by his friends and I love that.

We also know that one of the main reasons a child with Down syndrome might be a little naughty (or spirited as I like to call it), is because of the frustration they feel in not being able to communicate. I’ve already noticed it with Oscar. When he gets cross, he shouts, not necessarily making any audible sounds…. Just a very loud shout. He’s frustrated. He wants to tell me what’s up, but can’t. I guess that’s typical of any toddler but it’s more than likely that it’ll take Oscar longer to speak, therefore meaning we have a lot of frustrations ahead. We’re told that because they can’t verbalise, on occasion they might find a way of doing it physically. By coming over and pinching your leg or pulling hair, for example.

I’ve noticed with Ozzie and this is also a classic trait of a child with DS, that when his speech therapist is trying to get him to look at a phonics card, instead of looking at the card, he’ll be transfixed on her face, just smiling up at her. It’s called distraction and is his way of getting out of having to do work. He might only be 20 months old but I’ve got his number. If I sit in front of this woman and smile, I won’t have to concentrate. Or if I tilt my head to one side, I’ll look cute and she’ll forgive me. Or maybe I’ll start clapping to distract her. Classic Oscar Roberts behaviour. They have a desire to escape tasks. How can I get out of what I need to do? Basically, he’s finding it tricky, so he’s trying to get out of it.

Our biggest problem at the moment is that Oscar won’t sit still long enough to take it all in. I’m not complaining because we know how proud I am of my boy for his walking… But that’s ALL he wants to do at the moment. We’re told that children can really only concentrate on one area at a time. Oscars movement is what motivates him at the moment, not sitting and listening. I use to get frustrated thinking, we’re paying for these sessions Oz, please listen… But he’ll get there, in his own sweet time.

And that’s the point. All our children get there, just some take a little longer. So Oscar might not talk for a while yet, it’s really not that big a deal. I know for a fact he’s sitting there (ok wandering around) taking it all in. Every once in a while, there are glimmers of recognition in his face and I know he understands a lot more than I give him credit for, I must remember that. I asked Oscar if he wanted his milk earlier this week and for the first time he replied with “Mmmmm”. Obviously he wasn’t actually saying “milk” but it’s a start. Keep going, little man. I’ve realised recently, you cannot control, predict or plan all aspects of your child’s life. Time will tell. You have to accept the now and find the joy in each and every day, because life doesn’t ever stop moving. I’ll always remember a friend of mine who has a 9 year old little girl with DS, saying to me, that she used to worry about what other people might think or say about her daughter. But now, she’s so much more worried, about what SHE might say to THEM! I had to laugh! I’m sure in a few years time, I’ll be saying the same thing about Oscar… and that’s when the fun really starts. I can’t wait!!!!image image image image

One small step for mankind, one giant leap for… Oscar Roberts

If you’re a parent of a child with Down Syndrome or also like me, have worked with a child with special needs, you know that success happens a little bit, every single day. Albeit in very tiny baby steps, but it does happen. I’ve learnt that that’s true of my Oscar. That the things that wouldn’t be such a big deal when raising a typically developing child, in our house, become the biggest triumph imaginable. Tears of joy, cheers of pure delight, sighs of relief (that he’s actually mastered it), and it has been known, that I might have even done a bit of a happy dance in moments of real excitement. We clap and cheer A LOT. When Oscar puts his spoon in his yoghurt pot, appears to take a spoonful and even if we haven’t quite mastered getting it in our mouths yet (we do a lot of waving the spoon around still), we’re just super chuffed that this time last week, he hadn’t even thought about putting the spoon in there. People say children grow up too fast, but I guess Oscar really hasn’t. Developmentally he’s not doing badly, but against his peers, he’s doing everything at his own chilled pace. Just a few weeks ago on Valentines Day, at 19 months old, he walked independently. It was, in its simplicity, success in its purest and most beautiful form. In that moment, I felt like my heart might burst with pride but it had obviously taken us a while…

There is no such thing as a typical child with Down Syndrome. Our children are as different from each other as are all children. There are of course, books and information online which list when the average child with DS is likely to sit alone or stand… But I try not to look. It’s only for this blog that I googled “When does a child with DS usually walk?” And it says anywhere from 13-48 months. Insane that it’s such a wide timescale hey?

Because of certain physical characteristics, which include hypotonia (low muscle tone), ligamentous laxity (looseness of the ligaments that causes increased flexibility in the joints) and decreased strength, children with Down syndrome don’t develop motor skills in the same way that the typically-developing child does. Children with Down syndrome apparently fall into two basic categories of temperament: motor-driven and observer. Children who are motor-driven tend to be risk-takers. They like to move fast and tolerate new movements and positions. They do not want to stay in one place and dislike being stationary. This, without a shadow of doubt is Oscar. A total risk taker. Just yesterday morning, he was in his cot and Chris had been in to him to give him some toys to play with (just to buy us 20 more minutes of sleep… 20 minutes might not seem worth it but it WAS 6am) when suddenly, we heard a thud. He’d fallen out. After the initial panic, was he ok? Had he bumped his head? We stood there in disbelief. He had either climbed out or leaned out and lost his balance. Either way, this kid has far too much confidence. Surely it can’t be time for a big boys bed? However, we may have to invest in some crash mats. Later that day, we found Oscar half way up our stairs (thank god we found him). He’d never climbed the stairs before. He hadn’t even attempted it. Needless to say, yesterday afternoon involved rushing trying to buy a stair gate. Children who are observers are more cautious, careful, and want to be in control. They prefer stationary positions and are easily frightened when learning new movements.

We’re told that children who are motor-driven will take risks to take independent steps and will be undeterred by frequent falls. Observers will be more cautious and will only risk independent steps when they are sure of their balance. Understanding Oscar’s temperament and what motivates him has helped us be more effective in helping him learn those gross motor skills. We’ve known which activities he is likely to enjoy and which activities he is likely to resist. Anything that involves chasing a ball was usually a big hit. Or standing on the other side of the room waving my phone at him in temptation, usually prompted him to move quicker than a flash.

I’ve often heard of people talk about when their daughter first talked or when their son first pee’d in the potty and didn’t really pay much attention. Now it consumes me. I’m sure I’ll get over it. Oscar smiled at 6 weeks, rolled over and back again by 6 months, sat at 7 months, moved an object from one hand to the other at 8 months, bum shuffled at around a year (he never crawled), pulled to stand at 14 months and like I said, just a couple of weeks ago, at 19 months started walking. I’m guessing if you have a “typical learning” child you wouldn’t be able to quote when they did the above, right? I’m sure with Alfie, my second son, I won’t either, but with Oscar, it’s different. I’m hoping he’ll achieve everything he sets his mind to but as I said, It just might take him a little bit longer to master. I’ve told Chris to hold fire on the buying of a lift pass though, as skiing by the time he’s two, might be a little adventurous ;0)

At 5 weeks old Oscar was referred by his Paediatrician for having low muscle tone… Or a less technical term, a floppy head! Fast forward to him now, and there’s nothing wrong with this kids head…. Well, apart from that it IS pretty big… As is Alfie’s apparently, as our GP told me the other week (There they go again, the test of a turnip). I had to explain that Chris has really quite a big head and that it was probably where they get it from. Sorry, I’m digressing… Anyway, we were put in touch with Jane the Physiotherapist who has been there to show us exercises (oh wait, not exercises… we’re not allowed to call them that are we, Jane?), the “fun games” you can play with your little one, that encourage them to improve in their gross motor skills. When Oscar was first referred he always lay with his head to one side. She helped us with his side lying, with lying on his tummy moving his head side to side, pushing up, sitting up, pulling up and eventually walking. Occasionally she upsets me when she says things like “Oscar will need some special supportive boots for when he starts walking”… It makes me cross, thinking, MAYBE HE WON’T. Maybe he’ll walk early and without support but of course she knows best and the “special” boots, I have to admit, actually worked. Sometimes I just need to suck it up and stop being so superficial. So he’s not wearing the Converse trainers I so wanted him to wear just yet… he will in time.

Jane comes to our house every other week for his physiotherapy session and he has hydrotherapy in the pool, every second Wednesday. It’s been amazing. He loves his swimming. The first time I went to the pool with him though, I felt really sad. You know those clips on “Children in Need” which make you all emotional, when you see these kiddies going through such horrific things? … Well yeah I thought it was like that. I felt like an extra on a Children In Need VT. There we were. My Oscar in the pool with children who had such a wide range of complications. This wasn’t what I signed up for, I thought. (Another one of my selfish selfish “why me” moments). But in time I’ve got over it. I realised the children in the pool were actually doing just fine. Some of them, who couldn’t before, walk in with the biggest beaming smiles, that screams “Look at me. Look at what I’ve achieved”. I never feel sad anymore. If anything I feel happy. Happy seeing that along with the others, my little boy is thriving. He loves the water… and if anything, I’m very relieved we’re not paying the extortionate fees that some of my friends are paying for swimming lessons. God bless the NHS for our Bi Weekly FREE swimming classes!!

I struggled with him not crawling though. I so wanted him to do it but I could see him start to lag behind when all his friends were off. It wasn’t for want of trying. He’d lay on his tummy and his knees would come up. He’d try to push himself up but he just hadn’t got the strength. Maybe he’ll be a bottom shuffler everyone kept saying? Maybe! But I didn’t want him to be. I wanted him to crawl. Crawling helps stabilisation, says our physio. We NEED to get the crawling Ozzie, was what I was thinking. Pushy parent alert. I could feel myself losing my patience. That’s one of the qualities a parent of a child with DS is suppose to have you know – PATIENCE. I’ll have to work on that. I guess having DS, means that he can be excused if he didn’t crawl by his first birthday, if he wasn’t walking by his 2nd and talking by his 3rd. I guess it’s easier for us to be forgiven, and so very hard for a parent of a typically learning child, if they haven’t quite grasped the whole walking thing by now. Harder for them perhaps? Who knows? Being a parent is a constant worry regardless of typical or not. Milestones are there because someone’s written them down and recorded what is the “norm” but in my experience, every single child is so very different.

I’ll come back to the fact that Oscar is made up of our genetic makeup. 50% me and 50% Chris, more than he is that extra chromosome. So I guess the fact that I used to dance professionally and Chris does silly events like running across the Moroccan Desert, running 152 miles in 7 days (insane) or cycles up and down mountains for fun (weird), that he stood a pretty good chance of doing well. Chris however, hasn’t got the best concentration skills (sorry babes you’re getting a bit of a bashing in this one). He’s the type of person that if you talk to him when the TV’s on, he literally CAN NOT hear you…. So I’m not altogether sure Oscar stands much chance in the cognitive skills category. Chris’ mum told me recently, that he was on hyper calm pills when he was younger… Which again doesn’t bode well for the future with Oz. Oh dear!

Back in January 2013 I went back to work. Oscar was 6 months old. When Oscar was born, I remember saying to Chris that I was adamant that I wanted to go back to work. At no point did I want this to mean that my life became DS all encompassing. I loved my job. I needed my job. But by March 2013 I realised actually, I loved my baby more. Now I know a lot of people would say that… But Chris and I were in agreement, that knowing how important the first few years of a child’s life is anyway, that we would never forgive ourselves if we turned round in 18 years and said, we didn’t do enough at the start or that we weren’t around. For now, I needed to be with my baby boy. I still teach my one class a week, to the gorgeous PSDS kids though (Parents Supporting Children with Down Syndrome). I have thrown myself into him and making him the best he can be. Early intervention is what they say, right? Don’t get me wrong, I have my own life. It’s not all about Oscar… but in truth, for the moment, a lot of it is.

Oscar regularly attends Speech Therapy, Occupational Therapy, Music Therapy, Portage and Physiotherapy. Not because he desperately needs them all but because research says that with help and guidance from an early age, our children will grow to live a full and active life. Just last year Jimmy Jenson a 48 year old man who has Down Syndrome completed the New York Marathon. Incredible. I couldn’t even run to the end of the road at the moment so I’m very impressed. (Must.Lose.Babyweight)

The thing I’ve come to realise and I’m ashamed to say it, is that before I had Oscar and worked with the beautiful kiddies I teach, I had a picture in my mind of what a person who happened to have DS looked like. I had a sad image in my head. I pictured someone a bit older, walking through a shopping centre, holding hands with a carer. Harsh but true. I’ve realised though, that (and this is a bit of a generalisation as I’m aware that some are doing just brilliantly) these men and women I’m perhaps thinking of, were born in a time where there was little or no intervention.

I did a little reading in preparation for my blog this week, about how life would have been back in the 1950’s. I wanted to try and understand how far we really have come on. If I had left hospital with Oscar in the 1960’s, I would have left holding a piece of paper officially deeming him “uneducable”. I don’t even think that’s even a word these days!!! He would have had no right to an education at all.

I found some information on a lady who had a baby born with DS in the 50’s. She talked of the fact that no one told her she was a mongol (her words) at first, and when they did, it was when they came to take her away to an institution. She’d refused to let her go and her family turned against her as they were deeply ashamed. She brought her home against their wishes and everyone told her she was making a huge mistake. She had a friend who had a baby at the same time, but the friend would never let the children play together because she was frightened that her daughter might catch “it”. She couldn’t go to any coffee mornings or toddler groups for that very same reason. She never went to school. She stayed at home all day, every day until she was 12; when she died.

It seems absolutely unbelievable that it wasn’t until the 1971 Education Act that it was decided that no one was “uneducable” after all and children with Down Syndrome started to be entitled to any education. At that time people with learning difficulties were categorised as “educationally subnormal – medium” or “educationally subnormal – severe” and sent off to an appropriate special school. In 1981 parents were for the first time, given the opportunity to send their child to a local mainstream school, but it was unusual, there was little specialist teaching and schools were given little help. It wasn’t until 1995, that the Disability Discrimination Act entitled children with Down Syndrome to attend their local mainstream school and not until 2001 that the Special Educational Needs and Disability Act put in place a framework that would actually give the system a chance of working.

Even though the lady brought that little girl home and cared for her, it’s devastating to think that she was seen in the eyes of society as worthless. They didn’t have the intervention, like the Physiotherapy sessions we have these days and so what possible chance did she have?

When I think about the children I teach at the moment, they are all between 7-9 years old and are unique people with strengths and talents. They ride bikes, they swim, they play rugby, take dance classes… Hey, some of them even ski. The man or woman in the shopping centre, is an outdated stereotype, that isn’t a true indicator of how our children will be, living in THIS time. Oscar and his friends have been born into a world, where they are valued and given the opportunities to thrive, and my god, are we gonna help them!

Pic 1 – Oscar sitting with help
Pic 2 – Oscar practicing with his roll
Pic 3 – Waiting for Hydro
Pic 4 – Practicing walking with Auntie Nicky
Pic 5 – I’m off!!!!!

Pic 1 - Oscar sitting with help Pic 2 - Oscar practicing with his roll Pic 3 - Waiting for Hydro Pic 4 - Practicing walking with Auntie Nicky Pic 5 - I’m off!!!!!

To test or not to test… No judgement

To test or not to test?… That was the question. Probably one of the hardest decisions I’ve ever had to make in my life. It’s not my meaning here, to influence or to dissuade. A controversial and delicate subject, that I believe, is every individual’s personal choice. I hope they’ll be no judgement passed, as this is simply MY account. The test I’m talking about, is the Prenatal Screening I was offered in my 2nd pregnancy, having had Oscar.

Even before Oscar, we’d always said we’d love to have more than one child. Maybe even 3. Although we may need to take a rain check on a third, with the serious lack of sleep happening in our house at the moment. I remember thinking, very early on after having Oscar, that I didn’t want having a child with additional needs, to stop us. There are two trains of thought on the matter. I have met some parents who have a child with Down Syndrome, who want to devote all there time and energies into them. I don’t want to say having a child with DS is a lot more work than a typical child, but I suppose it comes with a few different challenges. I’m pretty sure you can do as much or as little with ANY child, it’s perhaps the wish of one child families, that their child is worth all their time, without splitting it with another sibling. A lovely thought I guess.

Chris and I were of the mindset, that Oscar would benefit greatly from having a brother or sister. To not only grow up with, but for both to learn from one other. I was very aware that after we were gone, there’d be someone around to keep an eye on Oscar. I’m not talking to care for him (I do so hope, by the time I pop my clogs, Oscar is capable of living independently) but just to look out for him. I’d never want Oscar to be a burden to a sibling, it’s not about making them a “carer” but I’d hope that they’d want to look out for their brother.

I am often asked, do I think it’s easier or harder to have a child with DS as your first born… And if the truth be told, I’m honestly not sure. Oscar was obviously our first. We knew no different. Only what we THOUGHT we wanted. Would it be easier to accept, having had a child before? Who knows?

I know that when I fell pregnant the first time, the future was full of all sorts of hopes and dreams. Such a special time. The second time was different and full of mixed emotions. So very happy that we were fortunate enough to fall pregnant again, excited, particularly for Oscar that he’d have a baby brother or sister to grow up with… But equally, it was tinged with apprehension and uncertainty. Would all be well with this baby? Would the birth be as traumatic as last time? Could I do it all over again, without the naivety and innocence I’d had before?

We were very fortunate to fall pregnant with out second son Alfie fairly quickly, so the age gap between our two boys is just 17 months (Some would say amazing… others would say very brave/silly!!!) Oscar is currently 19.5 months and Alfie will be 3 months next week. I remember telling a friend that we’d like to have another baby and them asking, quite brutally, (although I am certain it came from a good place), was I having another child to make up for any kind of failings I had felt with Oscar? As a replacement perhaps. I will admit that in those first few weeks, in the depths of feeling like I was grieving the loss of a child (ridiculous to even think now), I thought that another child might make me feel better, but by this point, I can honestly say, hand on heart, that it wasn’t the case at all. In the beginning when I had Oscar, I worried I wouldn’t love him. I didn’t feel that sudden rush of love that so many people talk about. It took me a little while to truly truly love Oscar. The ironic thing is, is that when Alfie was born, I actually worried I wouldn’t love him AS MUCH as I love Oscar. How life has a habit of coming full circle.

It saddened me recently when someone (whose currently pregnant with her 2nd and has a child with DS herself)asked me, if having had Alfie, I now feel complete. She thought she’d feel better once she could give her husband the child he’d always longed for. My heart, in that moment, broke for her. I was so upset she felt like that… I hope in time, she has peace and acceptance.

It wouldn’t have been the end of the world at all, should we have had another child with DS but for me, it was a preparation thing. I kept coming back to the same point. That last time, the biggest shock of all, was that we didn’t know. Ultimately it was my (and chris’) decision about whether we chose to have a procedure to tell us definitely if Alfie had DS. I’d love to be one of those people that was brave enough not to need to know, but I did. I am pretty sure I wouldn’t have done anything about it but if the outcome were that he had, at least I’d be prepared this time.

There are three types of Down syndrome: Trisomy 21 (nondisjunction), Translocation and Mosaicism. Oscar’s was the most common, Trisomy 21 and not passed from parent to child through the genes. Therefore there was no greater risk of having another, than the next person.

When I fell pregnant with Alfie, I was offered an appointment to see a Screening Midwife. I had decided to go back to the same hospital that i’d had Oscar at. I had mixed feelings about this. They had been fantastic with Oscar. They knew me and my background and I was familiar with them. On the flip side, would going back there bring back some pretty raw memories? Perhaps I’d feel better going somewhere completely new? But the thing I couldn’t shake, was that they hadn’t detected the Down Syndrome or indeed his heart defect. I am well aware that screening isn’t definitive, unless you have the invasive testing but I couldn’t help feeling that had they been more thorough, we might have known prior. Would I be able to put my trust in them now? As I sat and listened to the midwife, she let me know the options available to me. At this stage, I really wasn’t sure how I felt about testing. I knew the procedures could be invasive, so I wanted to hear my options and then make an informed decision.

With Oscar, at my 12 week scan we opted to take the Combined Screening. I was 33 years old at the time. The Combined Screening test measures the nuchal translucency (from scanning the baby) and two pregnancy hormones called Papp-A and HcG (taken from the mother through a blood test). This information is combined with the mother’s age and the gestation of the baby, to get a result. We were sent a letter a few days after our scan, letting us know that we were low risk (not considered likely to have a baby with DS) and that our odds were 1 in 350. You are considered high risk if you have 1 in 150 or lower chance. I remember receiving the letter and thinking that it was obviously fine if we were in this category.

The Screening Midwife had my notes in front of her from my pregnancy with Oscar. She said two things to me in that appointment, that really quite baffled/bemused me. Firstly, she circled one of my hormone levels that had come up in my bloods and said, “See, if I had seen this, I might have flagged this up, as it’s quite low”. Right, well no one flagged this up and the DS wasn’t detected, so you’re telling me that had YOU seen this, you might have suggested investigating it further? Obviously this was my inside voice again, but wow! The second thing she said, and this is no word of a lie folks is, “You ruined our record”. Unsure of what she meant by this, I looked at her confused. “Well, we hadn’t got it wrong in 4 years before you… In that we’d had women that we’d detected as being high risk of having a baby with DS. They then may or may not have had a baby with DS. But you were low risk. We hadn’t in 4 years, predicted anyone in the low risk category, only for them to go on to have a baby with DS” BRILLIANT! AND YOU’RE TELLING ME THIS WHY???? I mean seriously!!!!. Regardless of the fact that I wouldn’t change Oscar for the world but you’re telling me, I’m the only person you got it wrong for in 4 years???? I came home and told Chris and we actually laughed. I’m sure she was well meaning, perhaps trying to justify it all – but maybe she should have kept her mouth shut that day!

I was offered a CVS. A procedure that is usually carried out between week 11-14 of pregnancy and involves a needle being inserted through the abdomen. They then remove and test, a sample of cells from the placenta (the organ linking the mother’s blood supply with her unborn baby’s). I was told that I could have my 12 week scan and get my “1 in however many” number and go from there. If we felt we wanted the CVS, they would rush us up to St George’s Hospital in London.

At my 12 week scan, they were able to give me my odds there and then as I’d had a blood sample taken the week prior. With the measurement of the foetus, combined with my bloods, my odds with Alfie were 1 in 4400. Significantly better than last time.

I’ll alway remember something a friend said to me about our odds. It was a brilliant analogy. With Oscar we had a 1 in 350 chance of having a baby with DS. With Alfie, 1 in 4400. He said – You have 350 cups in front of you. One has a black dot in the bottom of the cup. Out of all the cups, you picked that cup (that was Oscar). This time you have 4400 cups in front of you and still one cup with a black dot. What are the chances of you picking THAT cup again? You’d have to be pretty unlucky… Or lucky… If I got a dot in the bottom of my cup again, I’d more than certainly start doing the lottery ;0)

At this point I should mention at both my 12 and 20 week scan with Alfie, it felt like they took more time looking at the baby. Were they being careful to cover all bases? Had I been unlucky last time with my sonographers? Were they just being thorough? Or perhaps they’d read my notes and realised that under a year previously, I’d been scanned and they hadn’t picked up any “issues”. You decide?

As it happened, a few days after my scan we were going in to the Brompton to have Oscars Heart Surgery so a CVS was literally the last thing on my mind. There was no way I could fit it in so it wasn’t up for debate. I would think about the next options…

There was also a new blood test available, only offered in 2 top London clinics. It has been discovered that a blood sample taken from the mother at any time from early pregnancy can be analysed for cell free fetal DNA, which is essentially a marker in the mother’s blood of the DNA of the baby. The result of the simple blood test, taken at 10 weeks or later, is predictive to more than 99% in Downs syndrome, 98% of Edwards syndrome and 80% of Patau’s syndrome. Something that didn’t sit right, was that it was still ONLY 99%. This wasn’t definitive and I needed it to be a certainty.

I chose to have an Amniocentesis. An Amnio is usually carried out during weeks 15-20 of pregnancy where a needle is used to extract a sample of amniotic fluid, the fluid that surrounds the foetus in the womb, to be examined and tested for a number of conditions. It’s something I don’t regret doing but I’m not altogether comfortable with admitting out loud and feel partly ashamed. I have friends who’ve gone on to have another child or are about to have one, after having a child with DS, who haven’t felt the need to test. So why did I? If I loved Oscar with every inch of my body, which I do, why would it be so terrible to have another child with DS? It wouldn’t. I actually think DS is the least of my worries when I hear about some of the other disorders a child can be born with. An amnio can’t test for all of them, so was I risking the life of my unborn child only for him to be born with a different complication? Maybe I’d find out the amnio was all clear, for my baby to be born with something they couldn’t detect. Maybe the fact that I was having the test, would mean that karma would come and bite me on the bum and when he came out, he’d be starved of oxygen and have cerebral palsy instead. All these thoughts went through my mind. I thought about friends of mine who’d struggled to get pregnant. Some that still hadn’t been able to. Some that devastatingly never would. Some that had had IVF and how they couldn’t even contemplate for one second, risking anything happening to their unborn child. I felt bad. I felt guilt. But I needed to know.

I should point out here there were obviously risks involved in having the amnio. 1 in 100 result in miscarriage. Some people are morally opposed to the screening because the test can be a catalyst for people deciding to terminate their pregnancies, should it flag up something as “wrong”. I know people that wouldn’t, under any circumstances have the procedure done and I absolutely respect their views.

Up until the morning of the amnio, I still wasn’t sure I wanted to go through with it. Chris said it was my decision and he supported me which ever route I took. I thought long and hard about my unborn child. I didn’t make the decision lightly. I had the procedure done. It wasn’t painful, just a little uncomfortable and to this day, I still feel like I betrayed Oscar.

A few days later, we were called to say all was ok. I cried when I put the phone down. Not because I was relieved, but because, sitting next to me, my little boy was smiling up at me. How could I not want another Oscar? When Alfie was born without complication, I felt guilty. An emotion I didn’t think for a second I’d feel. We’d always said we wanted more children but now I was thinking that it wasn’t fair to Oscar, that he’d have to share his Mummy and Daddy. We’re 3 months on now and I no longer feel that guilt. When I see the boys together, I see how special their relationship will be.

Friends of mine, who adore Oscar have been very open with me, in saying that if they were in the high risk category, they would proceed and have the invasive testing or blood test. They’re completely within their rights to say this. I had had the further testing after all. So why do I take this personally and feel badly for Oscar? It was in the antenatal screening waiting room a friend of mine, pregnant again, sat with her little boy, who happened to have DS. She said much like I experience with Oscar, that normally people are drawn to him, smile at him, talk to him… But this particular day was different. She said sitting in that antenatal screening waiting room, no one wanted to look at him. No one wanted to acknowledge him. If anything, they went out of their way to avoid eye contact. Because there it was. A cold hard hit of reality. They were all in that waiting room, about to find out if all was well with their baby. They shifted nervously in their seats. The truth was, they didn’t want a child like him. She understood… But it hurt.

There seems no right or wrong answer about what to do regarding further testing. Every one of us has the right to make our own decision and stand by it. I was having difficulty coming to any sort of conclusion about how to sign off the blog this week but then yesterday, I met a man, that I’m pretty sure I was meant to have met. Myself, Oscar and Alfie were in the garage getting new tyres fitted (a long story that I won’t bore you with) and Oscar was being his usual charming self, entertaining a couple of people whilst we all waited. One particular man was taking a great interest in him, asking me lots of questions about how he’s getting on, how was his heart, did he suffer with any other health problems?… I was just thinking, he knows a lot about DS when he said “my wife’s expecting in a couple of months… We know our baby also has Down syndrome”. Before I had a chance to say anything he launched into saying that they already had a son who was recently diagnosed autistic and that they figured, that with some experience of learning difficulties, they’d be the best people to have their new baby. That was it. It was like a lightbulb moment. There I’d been worrying about having another baby with potential problems and here these people were, feeling optimistic and taking it all in their stride. It was then it dawned on me… We could have coped with whatever had got thrown at us. I already knew that didn’t I. Whose to say that Alfie won’t grow up with his own issues? I heard the other day, that if our children reach 18 without going off the rails from drink and drugs, then we’ve done a good job. What I’m trying to say is, that all children, regardless of DS could come with their own set of problems. The consultant had told me that day, that around 90% of people who find out their baby has DS from having the amniocentesis, choose to abort. I was glad I met that man in the garage yesterday… One of the 10%, who didn’t appear scared. He wasn’t backing away from something he knew nothing about. He was grabbing the bull by the horns and getting on with, what was about to be, an even lovelier life.

tumblr_inline_n1nptnGQS31sybqr1 tumblr_inline_n1npu79saQ1sybqr1 tumblr_inline_n1npuod2CB1sybqr1 tumblr_inline_n1npv0zH5Y1sybqr1

My broken heart…

Nothing can describe the panic and sheer terror you experience when your baby is going in for Heart Surgery. YOUR baby, who you’re supposed to protect, is being opened up and operated on. I’m told a machine will take over the job of his heart and lungs for about 2 hours of the operation. The surgery itself from start to finish, is around 4-6 hours. A machine though? A MACHINE takes over the heart???? What if they lose power and it fails? Whose going to do the job of the heart and lungs then? (I should note here, I know they have generators in hospitals and the likelihood of this happening is very slim, but my mind at this point, is not exactly rational. If anything, I’m freakin out) I have to trust these medical professionals. They do this operation everyday right?. My baby doesn’t lie on an operating table waiting to be cut open everyday though. I’m scared. Very very scared.

Oscar was born with both an ASD and VSD heart defects or in simpler terms, holes in his heart. Around 40-60% of babies with Down Syndrome are born with some form of Congenital Heart Disease… Along with the fact that Oscar had DS, this wasn’t detected in our 20 Week Anomaly Scan either. Oscar had been monitored by his consultant fairly frequently in the months after he was born but back in March 2013 we had a joint appointment, with both our local hospital and The Royal Brompton Hospital, just as a precaution. I remember feeling pretty relaxed that day as Chris, Oscar and I arrived. I shouldn’t have let my guard down. I’ve come to learn this. The minute you do, something hits you unexpectedly. I should have known there was a problem when a whole group of Consultants and Surgeons stood staring at the screen whilst doing an ECO. Something about them taking so long and not talking, made me feel uneasy. Once it was over we were taken into the room next door to explain Oscar would need surgery imminently. Mr McGee, one of the top Cardiologists at the Brompton explained it all, but I didn’t hear a word. I’d only heard the first sentence. Oscar needs Open Heart Surgery. Tears came. He didn’t flinch, stoic and composed. How could he be so disconnected? How could he be so nonchalant about it? Because he has to be Sarah.

So yes, Heart Surgery… I’m told by everyone it will officially be the most horrific day of your life! I’m told to be prepared for lots of tubes and a heavily sedated Oscar. I’m told to be prepared for no sleep myself in the hospital. I’m told that once its done the prognosis is, that he’ll have a perfectly normal functioning heart. PLEASE God let it work.

Now I’m not deeply religious but it’s times like this, I find myself silently praying “Dear God, I know I only ever talk to you when I need something and I’m really sorry about that, but please God let it all be ok”. Shameful of me, but true.

We go in on Monday and the operation itself is scheduled for the next day. Other mummies of children who’ve been through this have said, you won’t feel like it but do not sit outside the operating theatre. Go out for lunch. Go shopping. Take your mind off things. Whatever you do, do not sit and wait.

I can remember the day we drove up to the Royal Brompton Hospital like it was yesterday. It was the second time I’d experienced real panic. The first time was around the time Oscar was born but this was an overwhelming feeling of anxiety and loss of control. My chest felt tight, I was talking, trying to remain bright and upbeat but I felt sick to my stomach. I don’t think that feeling of panic left me for a good few days after the operation.

When we arrived at the hospital, we were sent to a ward where they do all their pre observations – his saturation levels, temperature, blood pressure etc. Oscar had to have an ECO, an ECG and a Chest X-ray, three procedures we were more than use to by now so this took up the large part of the afternoon. Chris stayed was with us that whole time, but as only one of us was allowed to stay overnight on the ward at Oscar’s bedside, he had to leave us to stay in the hospital accommodation that the Brompton had provided. Around 9.30pm, when Oscar was sleeping that night, the Surgeons right hand man, who was to be operating on him the following day, came to see me. He spoke quietly so as to not wake the babies and children on the ward. “Hello Mrs Roberts sorry its so late, I’ve just come out of theatre. (Inside voice – It’s 9 flippin 30, how can you JUST have come out of theatre, you must be knackered. Are you sure you were concentrating on whoever you were operating on?) Surgeon – “I’ve come to take you through the operation and all the risks involved” (Inside Voice again – Oh bloody hell, where’s Chris when I need him, I can’t do this on my own. Keep calm Sarah. Get.it.together) Me- “Yes of course”

That’s when the magnitude of all this hit me. Sure Consultants had talked the procedure through before and I’d listened intently when other parents had told me what was to happen but it wasn’t really until that moment that I fully understood. “So in lei mans terms, we sew a patch of manmade surgical material over the hole, stopping the leaky valve” Ok right, that sounds simple enough “Only where we have to sew, is very close to a major artery that we can’t actually physically see. We know roughly where it is though” OH.MY.GOD… HE KNOWS ROUGHLY!!!! And so the conversation went on. I kept quiet. Listening and trying to digest it. The Anaesthetist had explained to us earlier that’s she’ll need to administer the General Anaesthetic carefully, as we know that babies with DS he have atlantoaxial instability (neck/spine may be poorly developed) and a small trachea (windpipe), meaning that is harder to get them to sleep, therefore could be problematical. He also told us the risks – Bleeding, Infection, Irregular Heartbeats, Damage to the Heart, Kidneys, Liver and/or Lungs. If he accidentally sews the patch in the wrong place and there’s damage to the arteries, he may need a pacemaker fitted and of course, Death. There it was. He said it. DEATH. “Mrs Roberts, we have to tell you the risks. There’s about a 3% chance that Oscar could die”. Now obviously 3% doesn’t sound that much. 3 babies in every 100 die from this procedure. Our risk of having a baby with Down syndrome was 1 in 350, and we WERE that 1… So forgive me if I’m not all that confident at this point with the whole statistics thing. He could obviously see my face and it was this next sentence that remains at the forefront of my mind that night “The hole in Oscars heart has got bigger Mrs Roberts. We can see from his ECG and ECO today that it’s got significantly bigger since March (It’s now end of May). If we don’t operate he might live till he’s 2… Best case scenario 5 years old.(Inside voice – Don’t cry. Don’t cry. Do Not cry). It was a no brainer. I signed the consent form.

It turns out the next day, the day Oscar was supposed to have his operation, it didn’t happen after all. Oscar was second on the list but they had run into complications with the 16 year old boy who went down to theatre before him, so had cancelled ours. We were devastated. We had starved our little boy of milk and food since midnight the night before. It was now 3pm. We had paced the floor with him as he got more and more unhappy with us, not understanding why he couldn’t eat or drink. By now he was lethargic and weak. I lost it. I was so upset they’d cancelled it. All that build up. All that worry. And now we were going to have to wait until tomorrow morning. That felt like a lifetime away. The surgeon had come to see us personally to explain. It made perfect sense. The 16 year olds surgery wasn’t going well and taking longer than expected. How self absorbed could I be? We gave Oscar some food and milk and within minutes he’d bounced back. That young man was down on the operating table and I was crying because I’d had a bad day pacing the wards with a hungry baby. Perspective.

So we waited another night. When morning came I actually felt, for a brief while, a perhaps unnerving sense of calm. I think I was just relieved that they had promised me that Oscar would be first down to theatre and that soon all this would be over with. Chris on the other hand was not in a great place. He’d been on his own all night. I guess he’d had a lot of time to think. I always knew Chris loved Oscar but it wasn’t until that day that I realised to what extent. As they knew that Oscar was going down first, they’d given him this drug that basically prepares him for sedation. So when Chris came onto the ward that morning, Oscar was very sleepy. Chris sat by his bed and watched him. Neither of us were talking, nothing needed to be said. I watched as tears silently rolled down Chris’ cheeks. There it was. Love. All encompassing love, mixed with complete and utter fear.
Eventually the anaesthetist came to take us down. We were allowed to be with Oscar until he went under and one of us was able to hold him until then. I always remember being in Neonatal Intensive Care with Oscar when he was first born and having this overwhelming sense of wanting to pick him up and run. Out the door, to the end of the corridor, out the hospital and run. It was before we’d had the blood test back confirming he had Down Syndrome, so in my head at that moment, if i’d ran, I would never have known or had to deal with it. Here I was now, my baby about to be operated on and I wanted to run again. Of course I knew I couldn’t but that feeling set in again. Loss of control. I will never forget the moment they put him under. The panic in his eyes, the struggle, looking up at Chris who was losing it at the other end of the room (maybe he’d wanted to run?), looking back down at my baby, his eyes wide, looking at me. “What are they doing to me mummy?” “Help me mummy” and then a gasp. The dire smelling gas had filled his lungs. He was asleep.

They’d told us they’d call my mobile when he was back up in Paediatric Intensive Care. That it could be up to 6 hours. The door closed behind us.

The next few hours passed in a blur. I know we got out of the hospital. I know we ate breakfast somewhere and wandered aimlessly around the shops. But can I remember any conversation the two of us had? I think we both went through moments of needing to talk about the most irrelevant crap known to man, to moments of silence. My phone kept beeping that morning, with messages from family and friends obviously checking we were ok and the status of what was going on. And with every beep, I jumped. I will never forget where I was when the phone actually rang 4.5 hours later and it was the hospital. Right next to the cold sesame noodles with vegetables at the deli counter in whole foods. (We were attempting to get lunch and anyone who knows my husband will know that Whole Foods presents far too much choice for him to make a quick decision). It had only been 4.5 hours… I thought it was supposed to take up to 6. Something’s happened. Something’s happened to him. I froze. “I can’t answer it, you answer it Chris”… he did. Oscar was ok. The operation was a success, he was being transferred up in PICU shortly and we were to go back to the hospital and wait in their waiting room to be called to see him. Relief. He was still in intensive care, we weren’t out of the woods yet but it had been a success. I needed to see him. I needed to be back at the hospital. I didn’t want to wait while Chris paid for his Teriyaki Beef Stir-fry. I needed to see my baby.

Obviously we made it back well before they called us in. I remember sitting in the waiting room, Chris eating his beef and seeing a team of about 8 nurses, doctors, hospital porters, pushing monitors, machines and a bed, all walking past the window… It was Oscar. He must have flashed past in about 2 seconds but I knew it was him. He was just lying there, lifeless. Obviously he wasn’t lifeless, he was still under General Anaesthetic but it hurt, it REALLY hurt my heart.
Eventually we were called in to see him and people were right, nothing can prepare you for the moment you see your baby lying there, attached to goodness knows how many machines and monitors. Eyes closed and so still. My heart felt like it was breaking at that moment. He had an Endotracheal Tube inserted through his mouth and down into his windpipe to provide an airway. He was on a respirator to help with his breathing. He had Central IV lines placed in a vein that lead to the right atrium. Their purpose was to monitor central heart pressures and give fluids and medications.

An Arterial Line, which is a small tube in an artery to measure his blood pressure and oxygen levels.

He had two Chest Tubes which are placed into the space between the chest wall and the lung, called Pleural Space. These are placed after heart surgery to prevent accumulation of body fluids. The chest tubes drain air, blood, and fluid from the chest cavity. He had a catheter inserted and was being administered oxygen through a mask. Finally, he heart was being monitored for rhythm, heart rate and respiratory rate. He looked a mess. Chris and I no matter how much we’d prepared ourselves for the moment we saw him, were not expecting him to look the way he did. Our families were obviously on tender hooks waiting to hear how the operation went, which we did, but later they said that we weren’t great at keeping them in the loop initially. Time seems to stop when you’re in hospital. You’re in this bubble, aware that things are going on around you but just so much more aware that right here, right now, is what’s paramount. We’ve never really shared photographs of Oscar in those first few hours as he looked so poorly, even with our family, as it was too distressing.

Oscar had 1 on 1 nurse care in PICU. We could not have been more grateful to the amazing team of doctors and nurses who looked after him when he was in there. They were to say the very least, incredible. They were not only attentive and caring towards Oscar but they were to us… Making sure we understood what was going on, alleviating our fears and concerns and trying so very hard to distract us with chat, as we watched on. Anyone whose had the misfortune of sitting in an ICU will know how scary it is. Machines beeping loudly, alarms going off, parents sitting silently by the bedside, just staring… For hours. Oscar was in the bed next to the 16 year old who’d had surgery the day before (he was doing well thankfully) but our baby looked so tiny in comparison. I would have done anything to swap places with him right there and then.

I find it hard to recall in the right order the events of the next few days. I know he woke up and was very upset. We were told he wouldn’t be able to feel pain but they obviously couldn’t control panic with a drug. I knew Oscar and I could see he was scared. That first evening, they took the tube opening up his airway out. Chris was with him when they did this as it was about midnight and after the emotion of the day, I was told to go back and get some sleep. This was when they saw that he was breathing on his own. I’d waited for chris to come back to the room, unable to relax. Once I knew all was well, this was the first time in days, I allowed myself to properly fall asleep.

We were there the next morning and stayed late into the evenings. Only leaving him to grab some food or get some fresh air. We sat there for days, just watching. It’s incredible how fast children fight back. I remember being allowed to give him some milk from the bottle on the second day and how proud I was of him for coping so well. Just little things like this were a step forward in getting out of there. On day three his chest drains were taken out. We thought all was well but turns out, when they did a Chest X-ray, he had a collapsed lung, or pneumothorax. When they’d taken the drains out, air had gotten in to the space around the lung. This buildup of air was putting pressure on it, so it couldn’t expand as much as it normally does, when you take a breath. A set back. It meant that we would have to stay in PICU longer as he needed to be given oxygen to help the lung. We were so gutted. We had literally been told that morning that we’d be moving to the ward later that day, but now we were to stay in Intensive Care. Obviously it was for the best and they couldn’t quite believe by this point how well Oscar was doing sitting up and smiling, when there was so much strain on his lung. He’s a fighter our boy.

So we stayed in PICU a couple more days and were eventually moved to the ward for a couple more nights. I remember being on the ward with him, thinking, we don’t have a 1:1 nurse anymore, what if something happens in the night? I’ve got to look after him. That first night on the ward I didn’t sleep, I just watched him, as he did.

After 10 long days we were discharged. The relief was immense. We’d already seen a bit of a change in Oscars energy levels but as the months passed we have been astounded by the change in him. We liken it to a Duracell bunny. Before I don’t think we realised just how much of a struggle everything was for Oscar. He just use to sit and play with toys, sometimes not turning to us if we called him. As soon as he’d recovered from the op, it seemed like he had a new set of batteries. His colour changed, he looked healthier and happier and he was off…. Bum shuffling everywhere. His breathing had always been quicker and laboured, now he seemed calm.

We cannot thank The Royal Brompton Hospital enough for the surgery and the continued care Oscar has, and is continuing to receive. He is obviously still closely monitored but after check ups 2 and 4 months after the surgery, he has now gone to 6 monthly checks. They have given him a new lease of life and I will never forget that. I have chosen to share a few photos below, of Oscar after his surgery. They are not meant to upset or be distasteful. I want to show anyone who has a son or daughter about to go through the same thing, that there is hope and that there is a happy ending. Oscar’s a bright, confident and strong little boy, and I truly believe without that surgery, he wouldn’t be. Many children with Down Syndrome in the past, were institutionalized and they were often deprived of all but the most elementary medical services. Fortunately, there have been major improvements in the health care provision during the past 20 years and we are so thankful that Oscar was born in this decade, where people with DS are given the same care as you and I. His precious life is worth everything to us.

Pic 1 – Just after Oscars Surgery
Pic 2 – Watching and Waiting
Pic 3 – First Bottle
Pic 4 – Sitting up
Pic 5 – Finally Home
Pic 6 – Oscar today

Pic 1 Just after Oscars Surgery Pic 2 - Watching and Waiting Pic 3 - First Bottle Pic 4 - Sitting up Pic 5 - Finally Home Pic 6 - Oscar today

Our redirected flight to (beautiful) Holland…

In the weeks and months that followed, I was very keen to get back to normality. I was on maternity leave from work and I wanted to do what other women on maternity leave did. That’s always been my wish. Just to be normal. So, I threw myself into life… getting to know my baby, meeting friends old and new, drinking coffee and eating far too much cake. Watching the odd episode of Jeremy Kyle (which for the record, is just dreadful) and of course, joined the obligatory “baby groups”, that we as mothers feel we should – Baby Sensory, Music, Playgroup etc. If I’m completely honest though, in those early days I found these groups difficult. I’ll explain.

Before I go on, I need to mention another piece of writing that featured very prominently around this time. It had been read out in one of our NCT Classes. We were asked if we wanted to discuss it further and understandably, the six expectant mothers, breathed a sigh of relief, as we moved on without putting too finer point on it. At the time, I dismissed it, put it to the back of my mind but now, as I lay in that hospital room with my newborn baby upstairs in NICU, it was poignant and thought provoking…. in a word, a relief. It was written by Emily Peri Kingsley, a lady who’d had a child with a disability, herself.
“Welcome to Holland”

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome To Holland”.

“Holland?!?” you say, “What do you mean “Holland”??? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills…Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes that’s where I was supposed to go. That’s what I had planned”.
And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very significant loss.
But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

I guess a major factor for me in the beginning, WAS the comparisons. The comparisons I made between a “typical” child and my child. Comparisons of what was and what could have been. The comparisons between Holland and Italy.

As I’ve mentioned them, I’ll talk first about my NCT group. Chris and I had attended the group leading up to the birth and had really looked forward to going each week. Looking back I don’t think we took them all that seriously. Sure we covered all the basics, but it was also a time for us to get to know the 5 other couples taking part. On first impressions, they all seemed very nice but as we drove away after our first class, I turned to Chris and said “They’re definitely professional types aren’t they?”. They’ll laugh when they read this. What I mean is, being a full time dance teacher at the time, they all had “proper”jobs ;0). On first meeting, if I’m brutally honest (which people keep telling me I’m being in this blog) I wasn’t sure I’d have anything in common with them? But, I can honestly say, these 5 girls have been incredible and such a massive support. I think any group of likeminded people going through the same sort of things, babies not sleeping, babies not feeding, babies with colic, babies with a cold etc etc etc, just get it. We use to email each other at ridiculous hours of the day, messages flying backwards and forwards with help and advice. I was the first to have Oscar and after being given the probable diagnosis, I was adamant that I didn’t want them knowing until after they’d all had their little ones. I didn’t want to upset them but more importantly I didn’t want them to panic about their own situations. I’m not going to lie, it crossed my mind more than once. Why us? Why did WE have the baby with DS? Some of them are definitely older than us? (Sorry girls) Seems silly now. But in those early months i remember holding on to a lot of anger. No I don’t want to celebrate the fact that your babies on solids already and that your baby can pull himself up. I remember thinking, that maybe I couldn’t face being friends with them after all. I never told them that. Their circumstances had all worked out perfectly as planned. Mine hadn’t. There were times I’d receive an email, about how amazingly well their children were doing, and I felt sad. BUT, very quickly that feeling passed. At no point were these girls trying to rub it in. If anything, I think they sometimes felt like they had to walk on eggshells, so’s not to gloat about their little ones latest achievements. So instead I celebrated with them and I clapped when their baby crawled because that’s what friends do. I stopped with the “woe is me” crap (excuse my french) and remembered just how frickin amazing every milestone is that Oscar achieves. So he was a bit later sitting up. Who cares… he did it. One thing I’ve come to realise is that these girls have celebrated every milestone of Oscars with us. And who’d have thought i’d be friends the Marketing Manager AFH Coffee and Hot Chocolate at Mondelez International hey? Very professional ;0) The 6 of us have all well and truly bonded over the love for our babies. These girls have never once looked sorry for me or made me feel like I was any less of a mummy for having a child that may have taken a little longer than their baby to roll over or clap their hands. I have only ever felt warmth from them all. And for that, I will always be grateful.

A charity that have become a massive part of our lives, is PSDS (Parents Supporting Children with Down Syndrome). They have been instrumental in showing Chris and I, that everything really will be ok. That just because you’ve had a child with DS, doesn’t mean you won’t go on holiday, won’t go on to have more children, that your baby WILL wear Baby Gap clothes and look cute (shallow, I know), that life actually, really is rather normal. Ironically, I knew of PSDS before I had Oscar, as I was working for them, teaching children drama on a Wednesday afternoon. It had always been something I loved and looked forward to every week, but after having Oscar, these classes were to have a big impact on the way I was feeling. How would I see them now? Would I look at these children differently? Would I fear for Oscars future… On the contrary, If anything it gave me hope for the future. These children were smart and brilliant individuals and I thought if he’s half as amazing as these guys I’d been teaching, I’d be the luckiest mummy in the world.

PSDS hold a weekly playgroup called Digbies. In the main hall, toys and games are set up for the babies and toddlers, Mums and Dads are served tea and coffee and can just hang out with other parents who just happen to a child with DS too. In the rooms off the main hall, they have a speech therapist, an occupational therapist, a music therapist and a teacher. All of whom offer our children the different therapies from an early age. It’s incredible to say the least. Aside from all the therapies offered, which in itself gives us the knowledge and understanding of what we can be doing for our children now, it has been the most amazing emotional support. Their mantra is that with early intervention, there is no limit to what our children can achieve. I was nervous at first thinking that it was just going to be full of really sad and depressed people with these vacant babies. How very wrong could I be? My friend had told me to go there, for the simple reason that it wasn’t like that at all. And she was right. I remember driving home from Digbies that first week and feeling this huge sense of relief. It’s been somewhere I can discuss what support their children are getting from their local boroughs, to advice on when they started potty training. What age their child first sat up, to their birth stories and how their news was delivered. It’s a chance to celebrate all the children’s achievements. To see them thrive every week and to realise that actually, life is going to be just fine. To see that these people were “normal” people, has been a breath of fresh air. It might sound like we all sit around discussing DS. We don’t. We eat cake and arrange to have meals out and drink wine. I know I have made, some life long friendships there already. Just the other day we went round to one of the families houses for dinner. I don’t think the word DS was brought up all evening. It happens to be part of our lives but it certainly doesn’t define us.

Finally, those baby groups I mentioned at the start. You’d think a constant reminder of how a typical mainstream child appears compared to my Oscar. It was at first. But very quickly I realised that Oscar was doing everything that the next child was doing. Sure in some cases it might have taken him a little bit longer to work out exactly what to do with that toy, or perhaps when the other children were able to put the instruments back in the box under the teachers instruction, Oscar wasn’t quite mobile enough to do it just yet… But mostly, there wasn’t that big a difference. He smiled like the others, he joined in like the others, he threw tantrums when the instruments were taken off him like the others (we’re still working on that). It was MY issue as I said, not Oscars or anyone’s else’s for that matter. I’d been worried about where we’d fit in, when actually we were exactly where we were meant to be. The emphasis here is that it’s so important for Oscar and children like him to be part of this. More so perhaps the other way round, for society to see and accept. I watch the children I teach at PSDS who all range from 7-9 years old who for the most part all go to mainstream schools. They mix with children of their own age group who see them no differently. We as adults, should learn from them. This is what I hope for for Oscar. An acceptance.

It’s my belief that there’s no instruction manual for parenthood, I’m pretty sure it would put us off if there was hey. It’s a guessing game and the same goes for DS. There’s a lot of written information out there but the most important thing is that Oscar is Oscar. Someone once said he happens to have an extra chromosome but he is still 50% me and 50% Chris in his genetic makeup. That extra chromosome is just a small part. In those first few months i read a lot about it. I needed to know what was ahead. Some was good and inspiring, but most made me feel sad. I worried, and still do sometimes, about the obstacles that Oscar would have to overcome – without really knowing what would be a problem for him anyway. It was far too early to tell and besides a lot of the info out there was completely outdated and without the foresight of early intervention, that we as parents, stand by. I kept thinking about his life as an adult whilst he was still this newborn, so tiny and undiscovered.

So around about this time I put the books away, I tried to limit the amount of time I googled “people with DS” on my phone and decided that I should get to know Oscar. By doing that we’d find out about DS along the way and then work out what we needed to do, to best help him.
What I do know so far, is that he knows his own mind and likes to get his own way like his Mummy. He doesn’t stop charging around and likes to be the centre of attention JUST like his daddy. He loves music or anything that makes a loud noise. And he loves to make people smile…. Which he does.

And all I can say is, we’re having a great time in Holland and it’s not really that far from Italy you know……

tumblr_inline_n0umm6pegJ1sybqr1

tumblr_inline_n0ummfwHUK1sybqr1

tumblr_inline_n0ummsq31X1sybqr1

The ridiculous things, people say…

Obviously if I was documenting the series of events that happened chronologically, logic would say, that I’d write about what happened next. However, if someone is reading this that is currently going through something similar, I’d want them to know that life now is actually pretty special, I rarely feel sad and that they needn’t worry. Of course every parent worries, but those dark few weeks that rolled into months, in hindsight, were a very small part of this journey. Yes, I went a little cuckoo, I cried most days and for some bizarre reason, felt the urge to announce to complete and utter strangers that Oscar had Down Syndrome, just so it was out there and not an “elephant in the room” type situation, but things got better, I promise. So that’s the time I’ve chosen. It may sound bleak and if so, that’s because at that point, life was.

Oscar had been in Intensive Care for 10 days. He’d had a problem with his heart (more on that later), Hyperthyroidism, a dilated tube into his kidney and was struggling to feed. Not the best outcome but my god, did our baby fight up there in NICU. They couldn’t believe the progress he made so quickly, especially with a dodgy ticker and on the 10th day, the day the hospital confirmed he did indeed have DS (yes, it took them that long to get the blood tests back!!!!!!), we took our Oscar home.
When I think back to those first few weeks, it’s all a bit of a haze. I was experiencing such a mixture of emotions – Joy, that our baby was home with us but a sick feeling, in the pit of my stomach that I just couldn’t shake. Grief.

The day we left hospital we decided to call in to the supermarket to pick something up for dinner. We stupidly walked in carrying Oscar in the car seat and quickly realised, things would be a lot easier if we actually brought the pram in, so Chris went back to get it. Spot the first time parents!!!! While I was waiting with Oscar, out of nowhere came a voice “Hi, I thought you must have had him”. My friend Catherine. She was yet to hear we’d had our baby and yet to hear THE news. In the early months as I mentioned, I felt compelled to blurt out “This is Oscar, he has Down Syndrome” almost straight away. I don’t feel the need now but with Catherine, I just needed to tell her. I remember the feeling of panic rise in me. The feeling of dread at having to say it out loud to someone.

“Well, we’ve only just got out of intensive care, we were in for 10 days, he has a hole in his heart, a problem with his thyroid, a potential problem with one of the tubes into his kidney AND… he has Down Syndrome.

There it was. I’d said it. My eyes stinging. A lump had caught in my throat. What did I want her to say? I actually don’t know. I can’t even remember what she said as a response. Probably something lovely if I know her… But Chris interrupted us and the awkwardness was broken. That was to be the first of many introductions of my little boy, and one, I will always remember.
The next day we met our neighbours at the end of the driveway while taking Oscar on his first walk. Obviously keen to have a look in the pram, I remember cringing thinking, please don’t look at him. Please don’t judge us. Ridiculous now, as if anything, I spend my time wanting people to look at Oscar. When I take him anywhere, I can honestly say hand on heart, there isn’t one bit of me that feels ashamed of him. How very different from that first meeting with the neighbours. Again I felt compelled to tell them… again, that lump in the throat forms and I choke on my words.

My mum asked me the other day, What do you actually want people to say when you tell them? What would you have said to someone before you had Oscar? And if the truth be told, I really don’t know. She reminded me that in hospital, a lady I’d met said, “It doesn’t matter, he’s still your son, you’ll love him all the same”. And I guess it is that kind of response I want. Positivity People, Positivity.

Now I don’t profess to be the next Shakespeare and there’s been more than one occasion when I’ve definitely said something ridiculous, but my goodness, people say some really stupid things.

Two days after leaving hospital with Oscar, an acquaintance(i wont call them a friend) said “perhaps it was something I did late in my pregnancy that led me to have a child with DS”. I didn’t have the strength to turn round and set her straight at that point. And how different my reaction to this would be now. Do people really think it’s something i did during my pregnancy? Did i eat too many raspberries? Wear my belt too tight? It’s times like this, i wish people didn’t open their mouths.

I remember going to see my Grandad around the time that oscar was about 10 months. Oscar was sat on the floor and grandad in the chair and they were rolling a ball between them both. Very cute. After some time Grandad stopped and looked at Oscar for a while, then turned to me and said “He doesn’t seem backwards at all, does he?”. Of course he meant no offence by this. He meant that Oscar was doing brilliantly at the game and responding to him well. but there it was. The stigma. The perception some people have of people who happen to have DS. I didn’t take offence but it’s something thats stayed with me all these months later. unfortunately Grandad passed away late last year but I am thankful that he had the chance to meet Oscar and perhaps his opinion was altered for the better. I do hope so.

When Oscar was about 5 weeks old I had to take him to the doctor for the first time. He had a bit of a cold so I decided it was best to get him checked over. Admittedly I had felt some apprehension going to the surgery, as I was still struggling with coming to terms with it all. I knew he wouldn’t have necessarily read his notes. He was quite an up beat doctor and seemed friendly enough but when he sat and read through the notes on the computer screen, he started to read out loud… “Trisomy 21, ASD/VSD Heart Problems, Hyperthyroidism… Wow, this is a medical students dream isn’t it?”. My blood boiled. It might be a medical students dream to come across all these issues, but that’s my son you’re talking about, is what I wanted to say!!! He then proceeded to ask me if I’d known about the diagnosis before Oscar was born. When I said No, he said “ Really? That’s bizarre, it’s usually picked up.” Again, do we really think this is helpful? It wasn’t.

I refer back to the moment the doctor told us she suspected Oscar had DS. “Your baby is showing signs of facial dysmorphia” Now this was an intelligent, well educated paediatrician, who I’m sure has had to deliver this kind of news before. You’d hope they’d have a softness about them. An understanding of how those parents might be feeling at this delicate time. But she didn’t and she was cold. But dysmorphia? An appropriate use of terminology? I have the utmost respect for all the medical professionals we’ve met along the way so far but something that bothers me, is that some can be so black and white. Some lack empathy. Maybe they don’t have the time? Who knows? I just think in this instance, she should have been mindful that she was talking about my baby.

“Did you have the tests?” – Numerous and I mean numerous people ask this question. Consultants, GP’s, Joe Bloggs on the street. I actually have no issue with people asking it. I have asked other parents of children with DS. What I draw issue with, is when I say we DID have the tests, it wasn’t detected and we were even considered low risk, they always say “Really? How unusual”. This is just an annoying response. First of all, of all the parents of children with DS that I’ve met recently, i’d say the majority didn’t actually know. Maybe thats because, of those that have it detected, around 90% chose to abort. Sad but true. And while we’re on the subject, It’s also very inappropriate to ask what we would have done if it was picked up. It’s personal and each and every one of us couldn’t possibly know until we’re in that situation. I know what I think I would have done. I also know for a fact, I wouldn’t change Oscar for the the world so why are we even having this conversation. YES the doctor at that first surgery visit asked me if I would have kept him, had I known at my 12 week scan. Seriously.

“I’m Sorry”. A standard response when I tell some people Oscar has DS. Don’t be sorry. There’s really nothing to be sorry about. I’m not sorry. If he was any different, he wouldn’t be Oscar, so please don’t say it.

At a party last year, a friend of a friend asked how Oscar was doing. I’d only met her a couple of times but she seemed nice enough and I knew she’d literally just had her first baby. “So, have they given you any early indications?” She said. Being unsure of exactly what she was trying to get at, I said “Sorry?” “I mean, have they given you any indications of just how mentally retarded he’ll be” Seeing my face, she quickly backtracked and changed retarded to “I mean mentally disabled”. Yep. She REALLY said that. I figure, it needs no more explanation. In this day and age, people are still using this type of language. I couldn’t actually believe it. Driving back home from the party that evening, I thought of so many quick witted responses that I wished I’d had the guts to say. I also thought how pleased I was that Oscar was given to us, as what kind of chance would he have had with her as a mother and role model. We always talk about the positives of what our children CAN do, never what they can’t. To use the phrase mentally retarded is just completely and utterly unacceptable and I bet if she spent a day with some of the incredible children I know who happen to have DS, she’d see just that.

Finally, we were in the doctors surgery the other day and a lady came over to the pram and started talking to us. At the end of the conversation she said “Can I ask you a question?” (Here we go, I thought) “Yes of course”. “Has he got a little bit of Down syndrome in him… My brothers got a little bit of Down syndrome in him too”

My polite controlled self, simply said, Yes he has Down syndrome but inwardly I found her hilarious. A little bit? Your brother either does or does not have DS. He hasn’t got a “little bit” in him. Where does she think this “little bit” is? His left toe? Some people are so very strange. You’ve got to laugh.

I’m not sure if I’m super sensitive to it or maybe just more aware of what comes out of people’s mouths these days but particularly in those early months, I was very aware of people’s reactions and what people said. I’m going to quote Tom’s article here, in that I too believe its not them being mean or heartless. Or at least I hope it’s not. It’s perhaps a lack of understanding or education on the subject.

For the most part I have been blown away by the warmth and kindness from those close to us but perhaps more touchingly so, by strangers. People seem drawn to Oscar and go out of their way to say hello, making us feel an enormous sense of pride as parents, that we are truly blessed. The people that say the silly things, are in the minority and we try not to dwell on their ignorance. Someone once told me just after having him, that we will need to look out for him now, probably forever. He will need his corner fighting for him and that is what, I wholeheartedly intend to do.

The major turning point for me though was at 6 weeks. An acceptance and a chance to get my relationship with Chris back on track. I’ve mentioned previously the utter disbelief I felt, that he could grieve for what appeared to may be about a day, then be 110% ok with it all. How was he not more upset? How could he be gardening? (yes that gardening thing). So when Oscar was 6 weeks, we decided to take a holiday and get away. The relief was immense. The escape was what I needed. So very far away from home and gave us the time we needed. Time for Chris to get to know his son. Time for me to breathe. We also had a lot of time to talk. We needed to find “us” again… because somewhere between 7th July and now, we had lost “us”. We talked long and hard. We listened. We didn’t interrupt. And it worked. We found each other and even though we’re far from perfect, (he still does the gardening at very inappropriate times ;0) we decided then that we would do everything in our power to make Oscar the best he could possibly be. We were united on that. After that holiday I came home a different girl. Don’t get me wrong I still have the odd wobble but for the most part, there’s true genuine happiness… And when people say stupid things, we try to laugh.

Leaving Hospital Baby Oscar Baby Oscar 5 Baby Oscar 4

If only I knew then, what I know now.

That moment. The moment my life changed…. “I’m sorry but we suspect your baby has Down Syndrome”. THAT was the moment I’m talking about. My world, in that instant, changed.

In hindsight not for the worse… If anything for the better. It’s taught me ALOT of things. It’s taught me, that you’ll be ok whatever gets thrown at you. You have to be. It’s taught me not to sweat the small stuff (although must remember this when someone pees me off ;0) It’s taught me an awful lot about the NHS and the medical world . But mainly it’s taught me about love. The love you feel for your baby of course but also the love you feel for your husband… who in times of your despair and heartbreak, has total and utter acceptance of your little baby and puts up with your hysteria. Maybe for one miniscule of a second he might have thought, I didn’t sign up for this, but mostly an ability to not let anything phase him. My Chris.

It wasn’t always refreshing – at first I was so cross with him. How could he be worrying about the borders in the garden, a day after we get discharged from hospital, while our world was falling apart? How could he not be crying? He cried initially but then that was it. Done. He’d cried, now he was just getting on with it. Simple.

Family – My mum and Dad, my rocks. Who allowed me to be 10 again and who held me for hours while I sobbed. At the time it didn’t occur to me but who must have been hurting hard themselves. Mum sat with me for hours. Dad coming late in the evenings to sit with me at hospital so that I wouldn’t be alone. I will never forget that. Mum said to me it took her until Christmas to come to terms with it all (6 months later). She said, a major factor for her, was that as MY mum, there was absolutely nothing she could do, to fix it all. Her little girl was hurting and she couldn’t make it better. She found that really hard and something I was completely oblivious too. Selfish of me not to realise, that our whole family were really grieving too in their different ways.

My sisters and their husbands – both so different in their approach but just kept me alive with their love for both Oscar and i, and who, from the start loved him more than I could have ever hoped for.

The inlaws – I felt i’d let everyone down. Especially my in laws. I knew my family would be accepting of me and what i thought at that point were my flaws. Oscar a flaw. Never. What a ridiculous thing to think (but I wasn’t thinking straight) but Chris’ family? Would they accept him and forgive me? I will always remember Janis, my mother inlaw, engulfing me in the tightest hug. She’d never hugged me that tightly. She told me her new grandson was perfect and that I hadn’t let anyone down at all. John, my father in law.Very quiet initially, taking it all in but who even now tells me constantly, that everything will be ok. Chris’ brother, his wife and Chris’ sister – always there. A constant in Oscars life and who just adore him.

Friends – The outpouring of love and support from them at that stage was incredible. They felt blessed to have Oscar from the start and excited to be part of his life.

The moment she uttered the words. “Your son is showing signs of facial dysmorphia” (dysmorphia? He’s beautiful). “We had a paediatrician look him over after the birth and he was quite floppy. This, combined with a few other indicators, mean that, I’m sorry, we suspect your baby has Down syndrome. But it’s late (2am) so we’ll come back at 6am and run some more tests”… THAT moment! BAM!

I remember reading an article 2 days after we had brought Oscar home. It was written by a father of a two year old boy who has DS. He wrote of how he felt the day his son was born – This article, literally could not have been better timed.

He wrote ; You weren’t expecting it, you think your lifes over. You wish for terrible things ; you pray for your newborn baby to die. People say that this is all ok to feel. You must lean on the people that love you but don’t listen too closely to what they’re saying, only you will know how you feel. The article talked about how his perception has changed and that his or your life’s not over at all. He talked of all the things he knows now, that he’d wished he’d known then.

You’re going to love this child. It won’t be an effort. It won’t be out of pity. You’ll REALLY love them. On an enormous mountains and ocean scale. It will overwhelm you.

The future is your enemy, the present is your friend. Nothing is as bad in the moment as it was in anticipation and often it’s not bad at all. In fact, nearly all of it is good. (What is it Chris always says… Fear is only your mind anticipating something, that hasn’t actually happened)
Other people are idiots –They will say things you can’t quite believe. Well meaning things but often ignorant, thoughtless and breezily prejudiced. I’m not so sure it is ignorance, more a lack of education and understanding.

They talk of people with Down Syndrome as always being so happy, so tactile, life and soul types who love to join in. People with DS differ massively. Sure some do, but equally some are just as miserable as the next person.

So don’t think your life has taken a horrific wrong turn and diverged forever from the path you wanted to take. It’s still the same path. Being Oscars mummy will still involve all the same joys as parenting any other child, just an export strength. And what’s the harm in that? Whose deathbed wish was to have lived a life of slightly lower intensity?

You’re going to meet some amazing people. They aren’t saints, they’re just supreme examples of normal humanity who feel drawn to work with children like your baby. You would never have met them if it weren’t for Oscar. You will find him a magnet for wonderful devoted souls. It will be your privilege to know them and profoundly beneficial to you to feel so much gratitude. Most people don’t get to experience that.
Other people who you should give a wide berth. The people wallowing in their own self pity. The parents of children with DS who say “My husband thinks Josh is the best thing to ever happen to him… I think it’s the worst” Or the people that make it their lives calling to become dysfunctionally over committed servants of their condition.

Trust your instincts about whose company will have a positive effect on you and your family. Cherry pick the life-enhancing friendships for a while and let the others lie shallow for a while and until you’re ready.

Negatives over – Prepare to burst with pride.You have a child that will probably not best his contemporaries in most competitive endeavours. Many people will not find him attractive… although again, they’re idiots. You’re not going to believe how beautiful he is. And while all your friends babies will zoom past him on the developmental milestones, your boy will lag farther and farther behind. If that sounds depressing, it won’t be. You’ll be as proud of him the first time he does something new as if he’d won a nobel prize.

So dry your eyes. You will be a good mother to this boy, have no fear. Set aside your own feelings of loss and lift your gaze. While your love for Oscar is still gathering pace, use the time to notice how readily everyone else adores him. The nurses in hospital, your family, your friends, even some strangers ; they all respond to him in a way you’re right to envy – with unconditional instinctive devotion.

But give it time. When your love for this boy comes on stream in all it’s might, it will make you the happiest you’ve ever been.

Tom Bickerby writes for THE TIMES NEWSPAPER (16th July 2012)… a piece of writing that at that time, literally picked me up out of my hole.

Oscar's First Days Baby Oscar Chris & Oscar Newborn Oscar