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!

   
 

Eyes

In my day, it was called a lazy-eye or being cross-eyed. Apparently we now call it a squint, so Audrey has a squint.

If you had told me years ago that my child would have a squint, I’d have been pretty upset about it. It wasn’t exactly a blessing as a child and I have always thought how unappealing it must have looked – people cross their eyes to make an ugly face and well, that was my face!

I have memories of being bullied about this at primary school (under 10 years old), as well as at secondary school, but at a very young age it didn’t bother me. Although I do remember one incident from when I was probably around 6, when I was at home crying to my mother because a boy had been teasing me and calling me cross-eyed. I recall my mum telling me that the children were teasing me because they were jealous of my “beautiful eyes and lovely long eyelashes” and I just thought she was deluded. Because it certainly didn’t feel like I had beautiful eyes.

After some time with glasses and a patch, I had an operation around the age of 4 to correct the lazy eye. Shortly after, my other eye decided it too couldn’t be bothered to work in conjunction with the other one and face forward, so I had another operation shortly before my 8th birthday.

I don’t remember the first operation as such, just being in a bed with my parents at my side, constantly doing crosswords or playing this join the dots game my dad always played (that was a little like noughts and crosses). Oh and I think my parents’ best friends bought me a Minnie Mouse cuddly toy back from Disneyland around that time. Other than that, no pain or scary memories.

The second time I remember more clearly. I had a private room (with a TV!), I made friends with an old lady down the corridor (most other patients were there for cataracts), people gave me presents (I got a personalised Peter Pan book, very cool) and I had a terrible reaction to the anaesthetic. I awoke and became some sort of crazy angry child, thrashing my arms, trying to rip the patch off my face, shouting I was going to be sick… no I’m not… I still remember it so vividly and how my mum said I shocked all the nurses as I had been such a lovely little girl who turned!

Anyway, funnily enough, the fact that I’ve been through the operation (twice), makes the thought of Audrey needing surgery not such a big deal, my main worry would be her being on the receiving end of any bullying.

Although my operations did much to ‘clear it up’, my eyes were (and still are), subject to the odd turn in. It was always bad in photos (and I hasten to add I have never been able to control it and was only semi-aware of it happening) and if I have to look someone in the eye from a distance, I always worry it is going to happen, even though most people who have only known me in the past 10 years or so say they have never seen it happen.

But as anyone who has lived through secondary (high) school knows, if you have an obvious “flaw” of any kind, you are screwed. And it’s difficult to forget how brutal teenagers can be. Around the age of 12 or 13, a song came out called ‘Kriss Kross’. Wow, spectacular timing. It was sung at me a lot. There was also a horrible girl who used to ask me what it was like to have “bumble bee eyes” (wtf??), her profile now sometimes pops up on Facebook as someone I should befriend, ha. 

Eventually my eyes were getting better and better and people seemed to have short memories as the bullying faded away. Luckily, shortly before turning 15, our dog bit me and I had a hideous scar on my lip as a new focus for the haters (!); but that’s another story…

Anyway, what’s odd is that I don’t think Audrey’s squint is ugly. I sometimes forget she has one (at her last eye appointment we were asked if she squinted less whilst wearing her glasses and neither my husband or I could answer the question). I’m actually surprised by how little it bothers me.

But then sometimes one of us takes a great photo of her and there is the squint… And I think; “If only her eyes were straight, that would be a lovely photo”. And I feel bad about that. Because it’s not a big deal and like my mother before me, I genuinely think Audrey has the most beautiful eyes. 

The fact is, kids are bullied even if they have no obvious things to pick on (maybe they are too pretty or too thin or too clever), so we can’t do anything to protect our little ones from the harsh realities of school life. But as I passed a noisy school playground the other day, picturing what Audrey might be like as a little girl in her uniform, I decided she will be ok no matter what life throws at her, because she is awesome and she has so much love in her life.

   
   

Love love love

I just wanted to write a post listing some things that Audrey does that I don’t want to forget… Perhaps I won’t forget, I’ll probably bore her with tales of her Hoover cuddles for years, but just in case…

I love…

Audrey’s eyes. The beautiful shape, the way they smile when she smiles, her eyelashes (that she inherited from me!).

The way she taps my should with her hand when I’m carrying her.

The way she reaches up with both arms to be picked up.

The way she dances… It’s a sight to behold! Rocking, head banging, hand wiggling… She is going to classes as soon as she can stand!

Kissing her forehead and soft hair.

When I ask her for a kiss and she cups my face with both her hands, so she can give me a full-on slobbery number.

Her sneezes. So tiny.

The way she picks up blueberries and eats them whilst maintaining eye contact with me the whole time.

The way she signs “finished” with a couple of turning fists.

Peekaboo with her own hands – it will never fail to make me proud that she figured out how to do that.

The way she claps, smiles and makes a positive “uhh” noise when she’s proud of herself (usually when we’ve praised her for drinking her water!).

The way her nose changes shape with a certain cheeky smile.

The way she giggles when she sees us putting on the sling/getting our coats on (because she knows she’s going out).

Her feet wriggling with excitement when food is coming.

The cuteness of her bottom lip before she cries.

Hoover cuddles! (Audrey is a little scared of the vacuum cleaner and clings to you like her life depends on it whilst it’s noisily on).

How she smiles and dances when I sing for her – even for the silliest made up songs.

The way she brushes her own hair, then holds the brush out to brush mine!

And many more… But that will do for now! X

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The power of love

From the age of 4 to 16, I lived next door to a family who had a son with Down’s Syndrome. I would say the overall feeling I remember when coming into contact with him (his name was Wayne), was: fear. To me, he was a giant man-baby, who had large, rough, dry, twisted hands that he would want you to touch. I did not want to spend time with Wayne. His mother, Betty, was (still is) a friendly lady with a cheerful voice and she was devoted to her family. She had two sons, (the younger was married with children), but Wayne remained at home, as intellectually he was possibly at the stage of a 2 or 3 year old and he was still in nappies (he was in his 20s/30s).

Sometimes my mum would send me next door to pay Betty some ‘catalogue money’ (she ordered things for us through her catalogues, god this was the 80s/90s, but sounds like the dark ages!). I distinctly remember that Wayne was more often than not, sat with large headphones on, listening to “his music”. As I grew older, I felt sadness for Betty. Her husband died at some point during our time there and so she was alone caring for Wayne.

My mum is a one for repeating stories, so I’ve heard 100s of times how when Wayne was born, the doctors left him on the side and told Betty he was like jelly, that he wasn’t worth her bothering with… she should call an institution to take him away… and how she held him and told them they were wrong, he was her baby and she was keeping him. She loved him instantly and unconditionally. I always thought it was amazing that she dealt with this ‘burden’ so well. I recall she had someone come for respite care – so she could go to bingo or just have time to herself and it just seemed like such a rough deal. Rough that as an old woman (old to me), she still had a ‘child’ to look after.

I also heard stories of how she had taken him out of a bad nursery because they had just dumped him in a corner and not worked on his development at all. Of how she had been advised to have a second child quickly so that Wayne would have a sibling to learn from. And how he had exceeded expectations on many fronts – because doctors had said he would never walk and also that he would die at a very young age. Wayne actually died a few years ago and he was in his 50s. I suppose it wasn’t that long after that Audrey was born. Betty was keen to meet her and I was really keen for her to, too. It’s funny how you become part of this club. Someone new joins the club and you’re so excited to welcome them, but you know from their perspective it’s not a club they wanted to join… But it won’t be long before they’ll be the ones excited to welcome a new member.

When Betty did meet Audrey, she kept saying how she was ‘high functioning’ and definitely more advanced than Wayne at that age etc. It was very sweet of her and of course I’m pleased to hear it, but I realise how it doesn’t matter. Of course I don’t want Audrey to be in nappies in her 50s and I want her to be able to hold a grown up conversation – in fact I have very high expectations for her… but…. I also know that no matter what, we will love her and be happy having her around. She is amazing and a joy to us. Just as Wayne was to Betty. I know she was happy to have had him. Her life was not the burdened one I imagined from the outside.

So the next time you see a mother or father dealing with their child with special needs, don’t feel sorry for them. Don’t think they are burdened. Just remember, there is love there and love is a very powerful thing. Huey Lewis knew it. I know it. Now you do too.

Blessed

When Audrey was a newborn, I read other parents’ accounts of having a child with Down Syndrome and, well, I thought in some cases they were lying. Or at least kidding themselves by piling on the positivity.

“Our child is a blessing” or “we wouldn’t change anything about our child” or “he/she is simply perfect”. I thought come on, you would change the Down Syndrome! And you know they’re not perfect!

But guess what? They were just further down the path than us and now I know what they know, I’m all over this positivity and “blessedness”!

But let me be clear, Audrey isn’t a blessing to us because she has DS, she just plain and simple is a blessing. She’s our daughter, we made her and ok, something “different” happened in the making and she got an extra chromosome, but that’s just part of Audrey.

When I look at her, I am overwhelmed by how much I love her and how perfect she is for us, for our family. I genuinely wouldn’t change her. Yes, I want to wipe out health issues, prejudices, difficulties… But if we took away the DS, she wouldn’t be the same baby and we love this baby, just the way she is. She’s perfect. And yes, I know that really there is no such thing as perfect… In fact, as I said, when I read other families call their child with DS “perfect”, I felt a twinge, an uncomfortable stab… Thinking, c’mon, how can you use the word perfect?!?

But I get it now. How can anyone? What is perfection? Does it even exist?

Audrey isn’t really perfect. She had terrible reflux and used to puke all over us. Sometimes she gives wonderful long kisses; covering us in snot. Sometimes she wakes up at 5am. She pulls my hair. She dribbles a lot. She has rough patches on her thumbs from over-sucking.

But she is amazing. She fits into our family and brings us so much happiness. We are deeply in love with her and wouldn’t change her for the world.

So there. Gushy positive Down’s Syndrome family believes they are blessed. Because they are.

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