World Down Syndrome Day 2016

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Here we are again, our third World Down Syndrome Day. I feel like I’m always banging the DS awareness drum, I really hope it’s not a bore to people.

This time around we’ve got tiny Rex with us, depriving me of sleep and making me a little bit insane (well the hormones post-pregnancy are). So it’s a crazy time. But one thing Rex has done by crashing into our world and turning things upside down; is shine a light on just how wonderful his sister is. I’m not saying him being difficult makes us realise how good Audrey is… Well… I guess I am a bit… But I know he doesn’t mean to, he’s just being a demanding newborn, wanting to feed and to sleep in our arms, crying too much and pooping and weeing at the wrong time… But in amongst the stress and tiring times, we have a beautiful little girl who is unaffected by the chaos – but has the sensitivity to ask if we (mostly Rex and I, the criers!) are ok. She’s offering cuddles and (heartbreakingly), saying and signing “Mummy sad”. She is playing happily by herself, casually saying “Hi Rex” when we bring him into the room, offering him cuddles when he cries. Her emotional intelligence is incredible.

And so, on this day, I celebrate Audrey for being our daughter, someone we love now more than we ever thought possible, who happens to have Down’s Syndrome. And if you let that define her or you make a judgement about what she might be like based on this syndrome, you will be way off the mark. Because I know there are many who are having scans and taking the screening test to find out their chances of a baby with Down’s Syndrome… And some are doing this to “prepare” (they have no intention of aborting), but want to know what’s coming. But many are geared up for aborting if the chances are high – they are thinking they couldn’t handle a disabled child. They may even be worrying about all the difficulties  they’ll face. They will probably be wondering what kind of life can someone have with a learning disability? Some may even say that livng with a disability; “well that’s no life at all”. Of course I can’t guarantee things won’t be hard, that their won’t be health issues and struggles, but I can tell you about our daughter with Down’s Syndrome. I can tell you that our experience has been so amazing and that her life – wow, she loves it to the max. She’s having a great time and we love Audrey more and more each day. Now that Rex is here, we look at her as a big sister and we are so proud and excited by the prospect of them being friends forever. We are also thinking about how much she will teach him. 

Happy World Down Syndrome Day everyone! 

  

It’s just a phase (we hope!)

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So here we are. I’m a mother of 2, we’re a family of 4, Audrey is a big sister.
Such a big leap from being a tired woman with a bump and a non-toddling toddler – to being a tired woman with a newborn and non-toddling toddler! Thank goodness for paternity leave – my beloved husband has never been so needed!

So far, I feel like this time around is much harder than my experience with Audrey. I realise that it’s totally crazy sounding to say a c-section, unexpected Down’s Syndrome diagnosis and three weeks in a special care baby unit is easier than a vaginal birth and a healthy baby being at home within 48 hours. I guess it’s true what they say about childbirth fading from memory.

The main difference is that Audrey was a sleeper – I had to set alarms to feed her. Rex doesn’t have that problem. He is getting better (we’ve had a couple of 3 hour breaks between feeds – a miracle!), but unfortunately his keen feeding nature in the early days means I’m currently in cracked nipple hell! Again, something Audrey didn’t put me through…

But don’t get me wrong, Rex is delicious. I still appreciate his peach fuzz head and big baby blue eyes. He’s another perfect tiny human we made, but wow, his sister didn’t prepare us for a tricky baby! In fact, she tricked us into thinking babies were easy!

Audrey has been an absolute angel. She can say and sign Rex, she regularly says “Hi Rex!” And asks “You ok?” If he is crying (and to me too if I’m crying – like I said, I’m a hormonal wreck at the moment). She is so loving, gentle and sympathetic; she makes me cry just by being her, I’m bursting with pride and I miss her! I’m so often feeding and tending to Rex, Audrey time has diminished. But it’s a great chance for Daddy to get some Audrey time of course.

We are in the middle of a difficult stage – only 10 days in, it’s quite a shock to have a newborn in the mix. Will keep you posted, but I know things get better and I have to keep reminding myself “it’s just a phase…”

   
 

Welcome baby Rex!

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Eek, I don’t have time to write a blog post (although you could say I have more time, given my awake time hours!!).

But I have to announce the birth of Audrey’s baby brother, Rex Graeme. Born 26th February 2016, weighing 7lb 13oz.

Please excuse the still in theatre shots!

It was a long labour, but we avoided a c-section, which is the main thing.

Currently exhausted, he’s 4 days old and doesn’t like sleeping as much as his sister did at this age. Audrey has been an absolute star, she keeps asking me “You ok?”. I am an emotional, hormonal wreck and I miss my Audrey time! Daddy has been wonderful as always. 

We are a family of 4 and are working hard to get through these tough early days to the fun stuff!
   
   

40 week’s pregnant disorganised person

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It’s was my birthday yesterday at 40 weeks pregnant. Yep, birthday due date for a birth-day.

First time around Audrey got the star-prep: hypnobirthing, raspberry leaf tea, fit ball bouncing, massage; all the recommended stuff. And of course, I had no labour and a quick c-section.

Second timer gets: day 39+ 1 = first listen of hypnobirthing CD. 39+3 = reading breathing techniques. 39+6 = damn, no raspberry leaf tea in our local Sainsburys. 40 = waters break and we realise newborn clothes are in loft and need washing.

Basically I’ve slacked off because I have another child who is my entire focus (at least, that’s my excuse!).

On the plus side, I have packed a thorough hospital bag. So we (Ted) lug it across town, getting the bus so we can stop off and buy baby clothes on the way. I’m checked over and as I’m not in labour, we get sent home to wait and see what develops. Audrey is enjoying a mini break with her Bibi (Grandma), so after lunch we basically sleep. 

So here I am on week 40+1, contractions came and went in the night, so we are on our way in to be induced. The house is a mess, I’ve been last-minute cramming with my hypnobirthing book and I think maybe we’ll treat ourselves to a taxi ride to hospital today!

The little man will hopefully be with us today/tomorrow! Eek!

Here’s one I made earlier…

  

Feel the love

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Last night Audrey wouldn’t settle on her own, which is reasonably rare and after a cuddle and sing song with Daddy, the crying started again. So it was my turn to have a go. 

She cuddled me with one arm tucked around me, with her other hand on my hand, interweaving fingers. I told her we were holding hands and she whisper-giggled with me at the fun we were having in this dimly lit room. I rocked in the chair silently and we gazed at each other whilst playing with our hands. A moment of perfection. I could feel our love. Her face – just the most beautiful little girl I’ve ever seen, her gaze fully locked on my mine, looking very much like a child who is not sleepy and will not be rocked to sleep!

Yes, it crosses your mind: er, excuse me miss, we had just started a new series on Netflix, I was about to put my feet up with a glass of milk (a pregnancy heartburn must)… But at that moment I just felt such bliss at being there for her. Being her mother. 

I’m sure I bang on about this in every post, but it’s a heightened feeling when you’ve had such negative thoughts about your child and your imagined relationship in those early days. It scares me to think that a “syndrome” label made me question the love and connection I would have for my daughter, but it did.

In fact, I’ve just recently been filmed sharing thoughts and feelings after diagnosis for a short film that will hopefully help new parents. And on an email calling for more contributors, a mother with a grown up son with Down Syndrome questioned her involvement – she wouldn’t want him to see her talking negatively about his life. Which I completely understand. However, I really hope to explain to Audrey one day that the reason I’ve shared so much online (including some pretty upsetting thoughts and feelings) is that I want society to move forward and I want to take as much of the negativity away from other parents as I can. And I want her to know that it’s because of her, because of her fabulousness, that I feel so strongly about banging this drum and changing perceptions.

Of course, in an ideal world I want someone to receive the diagnosis and think; ‘Who cares?’, but I appreciate it won’t be that simple. But how about, after the initial shock/upset/confusion, you quite quickly move forward by thinking about a family you saw online…? A mother who wrote about love, beauty and fun… She showed that your life with your little one might just be how you had expected things to be pre-diagnosis; singing songs together, reading books and cuddling before bedtime, sharing in a peekaboo joke… The path is a smaller deviation from the original than you might think and the overriding fact that should help take the negativity away is: you are their parent and you will love one another no matter what life throws at you. 

I’m thinking that’s parenthood as standard though, isn’t it?

  

Seconds

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I’m writing this before our little man arrives (I suspect my blogging time might be a little reduced following his birth..?).

A second pregnancy is definitely a different beast. The first time around you can truly revel in being ‘with child’. When maternity leave hits, (all going well timing wise), you can have weeks to nap, read, chill out, enjoy decaf coffees… 

Audrey is a July baby. I had at least 5 weeks before she arrived in sunny Brighton, just enjoying some ‘me time’ and falling asleep regularly to my hypnobirthing CD.

This time around, I finished work with 4 weeks until due date, I fear he’ll be early (we’re week 38 now), but I only get 2 days a week of “me time” anyway (whilst Audrey is at nursery) so it’s really not the same. I don’t feel like I have blank weeks ahead that I can fill with baby grow folding and preparing for birth. I have our usual routine, plus tiredness, plus heartburn and I’m waking in the night for all manner of reasons (Audrey being one of those from time to time, but being uncomfortable/needing a pee/leg cramp etc etc also involved).

I have to lift Audrey a lot because, well, she can’t walk. And I have to walk around pushing her in the buggy because we don’t have a car and that’s how we get about, with a bit of bus travel thrown in. It’s not a big deal, but it definitely makes me tired. And she’s tiring because she’s a curious child who wants cuddles or books or snacks etc. Or me sat on the floor with her or her sat on the sofa with me. (She’s kinda bossy).

I have several fears this time around (last time I think I put it all off and didn’t feel like a baby was really coming, this time I can’t deny it!)…

– Exhaustion is probably number one, because I love and need sleep and I cannot see how I’m going to get enough with two kids to look after.

– Labour is also up there; I didn’t go into labour with Audrey, she stopped moving and I had an emergency C-section. I’m happily trying for a ‘natural’ birth this time (with no objections to a few drugs!), but the unknown is still strange and scary.

– Doing enough: how on earth can I breastfeed, entertain, cuddle, feed, clean, rest, leave the house… With 2?!? Eek.

– Just being a good mother and having enough love to give to a second child that is following in the footsteps of one of the most loved children on the planet.

At the same time, I know it will all be worth it to grow into a family of four. I also realise a lot of people have had two or more children and have survived to tell the tale.

But wish us luck anyway please!

    
 
  

We go together…

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Just a short crazy post about watching Grease “live” on TV today (a recording of the Broadway musical that went out live on US TV and was shown on ITV2 this afternoon).

Something so silly, so simple and yet it made me think…

Look I know this is stupid, but when I was growing Audrey in my tummy (probably even before that), I had daydreams about my daughter and the things we’d do together. Shopping for clothes, tea and cupcakes in a nice cafe, PJ nights with a girly film… And for some stupid reason when little Audrey popped out with her extra chromosome, I felt (in those early days) that all that had been ripped away. This wasn’t the daughter who would care about fashion or want to do girly things with her mummy. This was an unknown child, I wasn’t sure what she’d be capable of or would want to do, I felt completely thrown and unable to daydream about our future.

Fast forward to February 2016. Audrey is 2 and a half, she wakes from her nap and we join in on his performance of Grease just after Greased Lightning. She has just woken from a nap so is snuggled on my lap, sucking her thumb. I sing along to some of the songs, she’s gazes up at me with her beautiful eyes. When she is a bit more awake, she sits next to me on the sofa and we boogie to ‘Born to Hand Jive’, she tries to copy the moves, she sings a little. I am in heaven. My little girl and I, doing just what I always imagined we’d do together. In fact it blew me away that we shared this moment when Audrey is only 2 and half.

She continues to amaze me.

   

  

NIPT: Don’t Screen Us Out

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NIPT (non-invasive prenatal testing) is being hailed as an amazing breakthrough now available on the NHS in the UK, that will save so many babies. The theory is, women will be offered this testing and there will be no need for an amniocentesis – which carries a risk of miscarriage. No need for further testing because this non-invasive test will give you an accurate answer on whether the child you are carrying has Down’s Syndrome (or Edward’s Syndrome or Patau syndrome) and then you can be prepared for their future (aka you can abort). Ok, that’s harsh, but when you consider 9 out of 10 woman abort when finding out their child has DS through amniocentesis (generally quite far down the pregnancy time line), how many will choose to abort when having this accurate test at 12 weeks? 

This has rocked the DS community because we are basically heading towards the elimination of Down’s Syndrome altogether. Which feels like a pretty crazy concept when you actually have a child with DS. We’re part of a community that will cease to exist, but not only that, it will cease to exist because society decided that babies with Down’s Syndrome have less value than ‘typical’ babies. That their lives are so tough(?) troubled(?) unhealthy(?), that they are better off not living. How do we explain this to Audrey?

I do of course have to acknowledge that 80% of babies with Patau syndrome will die before they turn one. I do understand that some of the conditions identified early will be extreme conditions that are not the same or similar to DS, so a breakthrough like this may save heartbreak further down the line. And I don’t want to wade into this debate without acknowledging that we are screening for abnormalities and health problems. It’s just that I spend my days immersed in a world where people with Down’s Syndrome are making a difference, they are enriching lives and fulfilling a role within society. They are not something that needs to be screened out of existence.

Let’s imagine you are given power and options when you are pregnant and you can fill out a questionnaire choosing various traits and facts about your fetus – shaping them and their future. What boxes would you tick?

Would you like this child to be born disabled?

Would you like this child to wake up at 5am a lot? 

Would you like this child to be a fan of One Direction?

Would you like them to be slutty?

Would you like them to become a member of UKIP?

Let’s face it, we have little control over what that fetus will become. We can do our best to nurture a good human being. Someone fun, kind, clever… Someone who finds a perfect career and true love and happiness. Someone who looks after themselves and their family. But nothing is guaranteed. The only thing I can guarantee about having a baby, in my limited experience, is that you will love them unconditionally. They will be the best thing you ever did. The most beautiful thing you ever saw. The most valuable life to you. 

It scares me that a screening test will tell you your fetus has Down’s Syndrome and that’s what will define the baby. You’ll imagine a disabled child. You won’t know anything else about them. The screening won’t say their face will light up at the sight of yours. That they will dance like crazy to even a hint of music. They will clap and cheer and cuddle their teddy and say “They did it!” when someone wins on a gameshow. They will stroke your face and say “lovely”. When they hear you say “kitchen” they’ll do the Makaton sign for “chicken”. They will constantly crack you up, surprise you and frustrate you. Your world will revolve around their happiness and wellbeing and you’ll love it. 

The world needs diversity. Ups and downs. If we screen out conditions that cause complications and make people different, where will it end? How bland will life become if we can eventually make everyone “perfect”? It’s a sad future without more people like Audrey, that’s for sure. #dontscreenusout
 
   

  

Nursery times

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Audrey has attended nursery since she was 10 months old. When she was born and the surprise of DS popped up, it never crossed my mind that she wouldn’t go to nursery whilst I was at work. Her needs were those of a baby, it didn’t seem like a stretch for a nursery to care for her.

Anyway, it’s funny how the thought of leaving her was so tough, then suddenly it becomes natural and if you can get them in nursery and have a day off to yourself – woo hoo!

I am very pleased by our choice of nursery, it’s a beautiful building with an amazing outside area (including a pirate ship!), they have rabbits, sensory rooms, yoga space… I remember thinking on the tour, ‘she will have so much fun here, more fun than with me’!

Audrey moved up to the over 2s room in October and settled in much easier than I had thought. After all, she can’t walk and she’s still quite small, but it didn’t phase her. Within a week of being there she stopped saying “yes” and started saying “ok”! Those pesky older kids and their slang!!

We were attached to Audrey’s key worker and were really worried about her adjusting to a new person. Thankfully, we didn’t need to worry. Audrey loves Grace, there is a picture of the two of them in her nursery book and when we get home and read about her day, she points at the picture and says and signs “Grace”. It’s actually a funny thing that I was worried about this other person that Audrey would form an attachment to, but now I feel so warm and fuzzy about it all.

At the end of last year they had parents’ evening and I let Ted go because I went last time. Plus he really hasn’t had a good chance to look around inside since the initial tour and I’ve been around several times. 

Well of course she had a glowing report. She is falling within her age range for everything apart from physical development (fair enough, she can’t walk) and these are broad ranges of course, but she is ahead of her typical peers for literacy! Which is amazing. She loves books. She loves them so much she will often push a leaflet on me and make me read it to her. And all the books we read regularly, she reads along, she remembers key words and points and says/signs things on the page (like rabbit or hat). She sits alone turning pages of books chattering away, making up the story… sometimes she has her dolly, Alice, on her lap so she can read to her. It’s so lovely and is definitely something we have nurtured at home, but is supported very well at nursery.

There are a few things we hadn’t really pushed at home that nursery did the ground work on…

Counting: the first time we counted (I think it was Ted carrying her up the stairs), she joined in and we were blown away. She can count to 3 on her own, sometimes higher, but can count to ten if we are counting along. 

Letters: rather surprisingly the other day she took my address book off the coffee table (it has A to Z pictured on the cover) and she said ABC!

Nursery rhymes: we had thought we’d avoid these, but of course once I’d started taking her to music groups, I realised you can’t really avoid children’s music, it does make kids happy. But the most exciting thing was singing a nursery rhyme for the first time and seeing Audrey’s reaction, realising she knows it! It first happened ages ago with “Twinkle Twinkle” – she lit up and started signing. Then I went to a group where they sung about a turtle “Bubble, bubble, bubble… Pop!” and I had no idea what this song was, but Audrey clearly did. Since then, she has just become so good at singing and signing, we can’t help but burst into  spontaneous rounds of ‘Wind the bobbin up’, ‘Row row’ and ‘Sleeping rabbits’. 

We’ve also had lovely moments at pick up, where other parents have told us that their child talks about Audrey a lot. It used to confuse me, Audrey isn’t always that interactive with other kids (she’s getting more so as she gets older), but I would wonder why these kids would be interested in a bum shuffler that’s usually not happy about another child being loud/in her face (she can be quite delicate!). But Audrey is a good sharer, she is gentle and she loves to say hello, blow kisses and offer cuddles, so I guess actually she’s a good playmate option. I’m always so proud to collect her as I know she’ll come out thrilled to see us “Mummy!”, “Daddy!” and will say “Byeee!” to everyone and blow them kisses.

Here’s a selection of some nursery pics they sent home and a Christmas decoration and picture she made (with assistance of course);

  
Actually, this week she brought home some bread she had helped make! I love nursery.

Goodbye 2015

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And so we bid farewell to another year… A year in which Audrey learned to bum-shuffle, speak and stand (with assistance). I finally found a new job, got pregnant and we moved into a house (goodbye cold flat!). 

2016 promises much er, excitement? Is that how you describe the carnage of two children??

We celebrated NYE with friends, working to Thailand’s clock, so that we could say “Happy New Year!” with the kids and put them to bed at a reasonable time. So sensible, but perfect for parents who appreciate sleep. Ted cooked a delicious Thai curry, the kids had a boogie and it was very civilised. I’m afraid I was asleep by 10, but I don’t hanker after the old clubbing days… Let’s face it, NYE is often a let down anyway, but I’m just over it. Of course I like a drink and a dance, I’m just quite happy to be in this family zone at this point in my life (not too young, not too old – just!) and once the kids are older I will unleash my party animal side again I’m sure. I’m hopeful Audrey has my karaoke-fan genes (I’m pretty sure she does!!).

Anyway, Happy New Year to all – the drunk and disorderly, the early to bed Buck’s Fizzers, the clubbers, the snugglers… Cheers to 2016!