Merry Christmas 2016

Merry Christmas everyone!


We love Christmas in our household and I’m so proud to pass some of my enthusiasm onto Audrey. She can say and sign lots of Christmas words, sing and sign Christmas songs and she loves Father Christmas. We’ve watched lots of Christmas films these last few days and Audrey has picked up a Santa hat, put it on and said “Christmas hat!” enthusiastically several times. I think she’s clocked there’s more chocolate around… she can tell this is a fun time of year.

Rex obviously has no clue, but has been forced to wear festive knitwear and does enjoy a dance to Rudolph the Red Nosed Reindeer. In fact, Rex just generally likes a boogie.

What a year! Having a second child turned out world upside down and has basically left us permanently exhausted, confused, messy and shouty (“No Rex, leave that! Stop that Rex, be gentle!” Etc etc). We’ve come a long way and the little guy is 10 months old on Boxing Day! Crazy.

Merry Christmas everyone, have a lovely festive season! X

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

Stuff and things 11

As I am struggling to get time to blog, I’m just posting a quick update of what’s going on with us.

So let’s see…

Rex is nine months old. He can walk around the coffee table at an incredible pace, he loves to stand (with support) and I suspect he will be taking his first independent steps in no time. He grabs  and pinches and pulls and bashes and bangs… He is active and strong! We are really getting a varied parenting experience. His nights are… Random. Best case, he sleeps 6.45pm-4.30am, has a bottle and then goes back to seep until 7am. Worst case, he wakes at 9.30pm, midnight, 2.30am, 4.30am and wakes for the day at 5.30am. The second scenario is breaking me.

Audrey is walking more and more. I’m a little frustrated she’s not just striding down the street, but she will get there. She asks to go walking when we are sat in cafes etc and does laps around the room. Her speech is evolving at pace – she amazes every day with new words and phrases.

Rex enjoys eating and is a blueberry fan like his sister. Audrey is getting fussier and fussier (just like me as a child), so we are going to have to work on her food variety. Vegetables have to be sneaky!

I love Christmas and so the build up has began. Audrey will definitely appreciate it a bit more this year. Rex… Well maybe he’ll get it next year. At the moment I think the wrapping paper will be more of interest than the pressies.