Audrey turns 4!

I can hardly believe it, but I now have a 4 year old daughter!

I'm also wondering why mothers aren't always a blubbering mess on their kids' birthdays. I started reminiscing days before her birthday and it's started to blow my mind that Audrey and Rex both grew inside my body. Woah.

We had a rocky start with Audrey popping out all "extra-chromosomey" so the love we have and the way she is now is extra sweet.

Our next big hurdle is potty training, which she's been potentially ready for for someone (a year maybe!) but I've been putting off and putting off… but once we've nailed that, wow, onwards and upwards for our grown-up girl.

It's a funny time because Audrey's typical peers will be starting school in September (we have deferred her to be the oldest in her year next year), so it's strange that we aren't moving forward in that way. But Audrey needs the extra time and when I look at how far we have come since her 3rd birthday I know it's the right thing to do.

Yesterday we had a great party (a BBQ at home), it rained half the time but we were ok inside. I made a chocolate peanut butter Hey Duggee cake and Daddy cooked lots of meat and made burger buns. Audrey got lots of lovely presents and was out like a light at bedtime, exhausted by a very fun day… the same couldn't be said for Rex unfortunately, he seems to get wired, but he fell asleep eventually.

Happy birthday beautiful clever girl.

Nursery times 2

Today I went back to work after 18 months of maternity leave (well, the cold, hard fact is, I was made redundant whilst on maternity leave, but let’s ignore that). 

As I walked home (that’s right, no dodgy commute, just a meander through leafy Hove), I felt so incredibly emotional. I’m a cry baby anyway (I’m sure I’ve mentioned my tearful John Lewis advert moments/sniffles at people dying on Neighbours/sobbing to La La Land?), but this felt like such a mix of feelings. Rex spent an entire day cared for by nursery staff! – You see he’s only spent time with friends and family before, this was a big deal. 

Audrey is a nursery pro – she started at 10 months and save a few tears at pick up (when she realised we left her!), she’s always been an easy-going sort; she took to it like a rubber ducky to kids’ bath time and we never looked back.

Rex has been a bit more clingy in general and at 16 months he’s at a trickier age than she was, but, nursery settling sessions went well. So I wasn’t crazy-nervous about him starting and to be honest second time around you’re much more willing for your kids to fly or fall. But when lunchtime arrived I realised I was keen to check in and hear from nursery that he was having a good time (which he was).

Once the day came to an end I was excited to get home to see my family. It was a good feeling because it is so rare that I get to miss Rex. Audrey has been going to nursery twice a week and on those days I get very excited for her to come home… clearly every day I cannot wait for my husband to get home, but for Rex… well we just don’t get very long breaks from one another to miss each other. What a novelty. I missed him. Amazing.

In many ways I’m one of those mums that complains about how I’m always with my kids and that I have no time for me, but then doesn’t let others look after them. I fear leaving them, it’s a control thing and I’m working on it. Walking down the street alone on a mild summer evening was pretty awesome. I started daydreaming about dates with Ted, maybe going for a run; just time without kids that I haven’t “allowed” myself before.

Getting home (5 minutes before my crew), I really got the “sight for sore eyes” phrase. Wow. My beautiful children arrived home with their Daddy, full of smiles and lots of shouting “Mummy!!”, it was wonderful. Rex was very clingy, but in such a lovely way and I got lots of cuddles and kisses.

For anyone wondering if working (and this is only part time to be clear) after having children is a good idea… thinking; will you feel guilty? Will it be difficult to do something other than wipe bums and faces? Will my children suffer? Well, in my experience, working or just having a regular activity away from your children is a great idea (insert thumbs up emoji here). I just feel like I’ve had a boost and that both my children seemed lovelier because I didn’t spend the day with them! Ha. 

Check them out in pics below – Rexy got for a balloon on his first day and he loves balloons!

The Wobbles

I spend a lot of my time thinking about Audrey and how much I love her. How great she is. How she has exceeded expectations and challenged my world view and my view of people with Down’s Syndrome. But sometimes I do still have a wobble. I do let negative thoughts creep in and I do worry.

The other week I took Audrey for her thyroid blood test. It’s not a pleasant outing, I know they are going to hurt her (or at least make her uncomfortable) when they take the blood. So it’s a time when I think “it sucks that we need to do this, it sucks that Audrey has Down’s Syndrome”. And so I wobbled. I felt angry about the Down’s Syndrome. 

Whilst we were there, a lady walked by with her teenage daughter. They were both slim, well dressed and they seemed to get on really well. At the time, Audrey was arguing with me over finishing her sandwich. I felt another wobble… that we would never be those two “perfect” mother and daughter types. Such a silly, shallow thought. But I felt sad she wouldn’t be this elegant model-like teenager, making boys heads turn. And as I write this I recognise how unimportant it is that she is “pretty” by typical standards and that boys fancy her. I guess it’s sometimes more that I worry her condition robs her of certain standard life experiences. 

We filled out more forms for disability living allowance, as we can get a higher rate of Audrey isn’t walking. Initially I felt it was pointless – she is walking now. But on further discussion I realised that walking across the living room and then landing on your bum is not walking like a usual 3 and a half year old. She can’t walk down the street to the shops, she can’t walk to the car and climb into her seat. We have made a massive leap forward with the walking, but we still have far to go and that’s annoying!

Sometimes when I’m talking to other parents and the subject turns to when our kids grow up and become difficult teenagers/go to university/have kids/end up looking after us… I feel a little pang inside. I wonder if they are thinking “Yeah, but not Audrey”, I guess I worry about their negative thoughts as much as I worry about my own.

I wanted to post about this to be honest about the fact that I’m not always happy and steady on our path, sometimes I do fret about Audrey’s future. No matter how secure and content I feel about her, it doesn’t change the fact that we face challenges that typical families don’t.

I have to remind myself that nobody really knows what the future holds. No one can be truly secure in what they will become and how their/their children’s lives will pan out. It’s freeing to think that and try to “let go” and continue with the positivity – that Audrey can only get more fabulous. 

Audrey and Rex, December 2016

My daughter 

I have a 3 year old daughter. She likes to play with my hair whilst she sucks her thumb.

She loves music and dancing.

She adores books.

She gives epic cuddles.

She likes watching Mr Tumble and Justin Bieber videos.

She reenacts ‘circle time’ from nursery at home with her toys.

She loves fruit.

Over-used phrases since she arrived include “I love you”, “You are so pretty”, “You are so clever”, “You make Mummy happy” and “Cuddles!”.

She is everything I ever dreamt my little girl would be and much more. As each day passes I see us together in the future; singing, shopping, scoffing popcorn at the cinema… All these simple things fill me with joy and excitement. My heart swells when I hear her call me “Mummy”.

…And I will just add that I still have to suffer the obligatory tantrums over presenting her with rice cakes instead of breadsticks or asking her to put her jacket on – it’s not all plain sailing.

But oh she is fabulous… Entertaining, amusing, cute as can be and incredibly emotionally intelligent (if she so much as sniffs a crack of upset in my voice she comes over “Y’ok Mummy?” – head tilted to one side in concern, offering a cuddle).

When we go out, I feel like I am proudly presenting her to the world; “Behold! My beautiful offspring!”.

The other night I put her to bed and laid down with my face next to her’s and said “I love you” and she stroked my face and said “I love you” right back. It was pure magic.

I fall more and more in love with her everyday.

Nothing out of the ordinary here, I assume many mums will read this and think, “Yes, sounds like a standard mother-daughter love.” And it is.

It’s just my daughter has Down’s Syndrome. So when she was born, someone gave me some news and some literature and it was like putting a sticker on her that said “This one is going to be a little bit rubbish and not meet your expectations”.

 

Thankfully that was bollocks.

This post is also on Selfish Mother; http://www.selfishmother.com/mother-daughter-love

The Joy of Rex


Poor Rex came into this world with Audrey’s footsteps (or bum-shuffle tunnel) to follow in. 

We have been hard on him because he’s been hard on us. But at the end of the day (although the day never seems to end with him!), he’s just a baby. Granted, a more difficult one, but still…

People tell us he’s very cute. He’s a pretty boy. What a lovely baby. We say “Yeah he’s alright”.

It is hard to enjoy a baby that is unsettled and waking a lot a night. Sleep depravation has made me snappy and crazy at times. I want to adore him the way I adore Audrey, but I think that’s going to take some time.

Rex is almost 6 months old and we have come a lot way since the “sleeping on me” days, even if we haven’t quite reached the peak of happiness we are hoping for… Anyway, I can say lots of positive things about him, because in truth, he is a bonnie baby (as well as a mighty mighty sh*tbag).

1. He loves a laugh. When he has slept and fed, he is generally quite a happy soul and Rex thinks peekaboo, sneezes, bouncing balls and the door bouncer are lots of fun.

2. He adores his sister. He gazes at Audrey with love and finds her very entertaining, it’s such a lovely thing to see developing.

3. He is very curious about the world. He grabs everything and anything and he loves to explore. 

4. He has amazing hair. Like a Muppet.

5. He has excellent leg chunk.

6. He has soft milky white skin like marshmallow. 

7. He has my eyelashes (as does Audrey) – these will serve him well.

We love you Rex, you little monster! But you had better sleep better soon!

The Calm After the Storm?

Newborns: wow.

Well little Rex arrived and turned me into a hormonal exhausted mess. 

I couldn’t handle not just the level of care he required, but also the way it took me away from activities with Audrey. Suddenly I can’t cuddle her on demand or sit with her playing all afternoon. I know she won’t remember, but I find it heart wrenching. I love her so much. I love cuddling her.

Having a second child hasn’t just rocked our world in terms of how tiring/stressful it is, it’s made me realise that much of what we went through having Audrey wasn’t about her having Down’s Syndrome. We always questioned it – we couldn’t decide if at the beginning we were reeling from the shock of the c-section or of her diagnosis. We’d never had a baby, so we didn’t know what it felt like, how you bond, how you love them. Film and TV would have you believe the baby comes out and is placed on the mother to immediate love and bliss. Both parents are instantly in love.

This is not our experience. Feelings for Audrey and Rex in the first weeks were quite functional. With both I felt quite shocked just to have a human suddenly on me – it’s quite something to get your head around – bump to baby. There’s relief that they are alive and then you just sort of numbly get on with things in a fog of “what on earth has happened??”.

The love part… Well we’ve found it takes time. You get to know them, their face, their smell. The bond grows slowly and then, when they become a little person who interacts and really shows some personality, wow, the love starts to peak – it’s like you’ve fallen for them after a romance.

It’s no secret I’m not a fan of the newborn stage. They are basically still a parasite but now live outside your body. You do everything for them and what do they give back? Ok, they are cute and cuddly, but they cry a lot. And poo a lot. They puke on you. They wake you up. And if you’re really lucky they might make your nipples bleed. Lovely.

But then they smile for the first time (Rex did last week, hurrah!) and they see you more and coo and almost play… And of course (please achieve this soon Rex!), they go longer between feeds. 

So of course I know this love grows and it gets better and better, but oh how hard it is to remember that with an unsettled baby to contend with. Every week gets better, but it’s still hard. Parenting is hard work.

I still remember chatting to a friend who doesn’t have kids, about how she’d like a nanny to just do all the hard stuff – the night feeds etc. And we had Audrey and I told her she wouldn’t feel like that once she had a baby – yes it’s tough losing out on sleep, but ultimately you want to be the one feeding your baby. It’s all part of how your bond grows. Going through the tough stuff together gets you to the fun part! And now I have to remind myself of that when Rex is wide awake for over an hour at 3am or when he’s screaming in pain from wind whilst on my shoulder. I need to do all this, no one else can – what’s the point of having kids? This is my job, my journey and at the end there is a big reward. We are already reaping the benefits with Audrey. 

Just think what these two crackers will be like together as best friends!

  
    
 

Feel the love

  

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?

  

We go together…

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.

   

  

Goodbye 2015

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!

   
   

Love love love part 2

Just a list of things I love, that Audrey does.

The way she dances to police sirens, lorry reversing beeps and builders banging (basically whenever she mistakes those kind of sounds for music).

The way she obediently hands things to me when I ask her to (how long will that last??).

The way she pats you on the back with her hand when cuddling and says “Ahhh”.

The way she blows kisses with a dramatic flourish.

The way she does something she’s not supposed to (emptying a pack of baby wipes, playing with our shoes or electrical cables) and says “Noooo!” whilst doing it.

The way she sucks her toes.

When she shuffles over to my feet, looks up at me with her arms spread wide and says “Ahhhh” – her way of asking to be picked up.

The way she points in her mouth and says “teeth” to ask to have her teeth brushed.

They way she claps and says “Yeah!!!” With such enthusiasm at the end of a song at music class or after some good drumming at our drumming group.

Pretty much every word she tries to say – her speech and language is coming along so well and I’m so proud of how hard she tries with everything from “sneeze” to “fish”.

Her lion roar.

The fact that at just 2 years old, she already has a favourite book (A Bit Lost) and that I don’t mind reading it 3 times before bed.

Bless you gorgeous Audrey for making everything little thing so loveable!