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

Walk the walk

As you’ll have seen, I post a lot of positive stories about Audrey. It’s hard not to. But I want to be honest about something I am finding difficult; the fact that she can’t walk.

When she was born, one of the many things we were prepped for was the difference in when a typical child walks and when a child with DS does, I was pretty confident Audrey wouldn’t be too far behind her peers. I expected she’d be up and running around 2.

Well, we’ve passed her third birthday now and she hasn’t nailed it yet and let me tell you why that sucks…

I feel like she has lost out on a period of her childhood; outdoor activities, soft play, dancing, exploring and running after friends. I know this will come, but her friends have had this kind of childhood since they were 12? 14? 16? 18? months (I’m not even 100% sure when!).

In many ways she’s an easier child for me as a non-walker (less so now we have Rex), although I don’t want her to walk to help me out. I feel like she is being robbed of a typical childhood. It makes her officially “different”. Yes I know she is different, but at this age, kids are just kids. They play with each other at mixed ages and mixed abilities, but not being able walk puts her way behind.

My husband is a bit more laid back about it and I wish I could feel the same. Ultimately I do have to be patient, I can’t let frustration take over because that’s not going to help, but her almost 6 month old brother is rolling and pivoting and getting into things… he will be crawling soon and before we know it – walking too. It seems so crazy how quickly he is getting there and how slowly Audrey is.

But, hey, as I’ve said before, it is best to focus on what your child can do, rather than what they can’t and Audrey’s communication skills have excelled beyond our expectations. She sings so many songs (from Old Macdonald to Queen’s We Are the Champions!), she “reads” so many books and she is really polite – she even says “Thank you Rex” when she has given him a toy. She’s fabulous.

I guess I’ll have to wait for the running and jumping… I’m sure once it comes I’ll be so tired out by her (and Rex), I’ll be wishing for the bum-shuffling days? We shall see.

Here she is working hard at conductive education:



 

 

Audrey 2

When we had Audrey, we didn’t know if we were having a boy or girl and we didn’t share our baby names with people. We were looking forward to the surprise.

Strangely, my mother, who was obsessed with us promising that we wouldn’t make a name up or have something American sounding that’s really a surname (Taylor, Page, Madison…), found Audrey to be a shock name choice.

My brother overheard her telling relatives on the phone (as she rang around to confirm Audrey’s arrival); “They chose the name Audrey as they love Audrey Hepburn and Vicky loves The Rocky Horror Picture Show so much” (!). Hilarious. Yes, she meant Little Shop of Horrors and, no that wasn’t really part of the naming process.

Anyway, this was post was drafted to announce a little “Audrey 2” in my tummy, but sadly it’s sad news instead.

A few weeks ago, at 10 weeks pregnant, we had a miscarriage. As I type that, it does feel strange to be sharing something so personal online, but the fact is, it happened and we’re ok.

When I lost my job, I was about 5 or 6 weeks pregnant and I was instantly worried about how we were going to cope financially and also how on earth I was going to apply for jobs knowing I only had 6 months worth of work before going off to have a baby. But we had to get on with things and the pregnancy was good news, so we couldn’t let redundancy overshadow this.

The timing was very similar to Audrey, her due date was 17th July, this baby’s was 2nd July. So like my pregnancy with Audrey, we planned to tell family at Christmas, with a toast to the new baby on Christmas Day. Sadly, this was not to be, but we were very lucky in that this happened to our second pregnancy, so we had Audrey around to keep us smiling. She made all the difference. And at 10 weeks, we weren’t too far along. It was devastating, we had started planning for Audrey 2, but it wasn’t quite as I had imagined. Not quite like the drama in the movies… for example, we got the bus to the hospital. Seems so silly now. The early pregnancy unit is closed on weekends, so we had to sit in A&E for an hour or so. It was… unpleasant.

We still hope to grow our family and would love for Audrey to be a big sister, but we recognise how fragile human life is and how lucky we are to already have a beautiful daughter in our lives.

Sorry for this depressing post. Belated Christmas wishes to you all and have a Happy 2015!

/home/wpcom/public_html/wp-content/blogs.dir/85c/64636823/files/2014/12/img_4819-0.jpg

/home/wpcom/public_html/wp-content/blogs.dir/85c/64636823/files/2014/12/img_4848-0.jpg

/home/wpcom/public_html/wp-content/blogs.dir/85c/64636823/files/2014/12/img_4852-0.jpg

Getting home

Audrey was in the baby unit for 3 weeks, as I type that now it sounds like no time at all, but back in July 2013 it felt like forever.

I was in hospital for 6 nights after the c-section, shuffling up from floor 12 to floor 14 to breastfeed Audrey. We then spent a week or so commuting in on the bus to our “part-time” baby. It was definitely not the start we imagined.

Audrey was allowed home with oxygen, so she had to wear a cannula and be plugged into a machine in our hallway or to a travel canister whilst out and about.

20140311-094851.jpg

It felt like such a huge burden to have that tube on her face… Especially as the weeks passed and the sleep studies showed she still needed it. But again, I can look back now and feel relieved that we only had to deal with it for 6 months, such a short space of time in the scheme of things. There’s still a chance she will need it again in the future, but for now we are so happy to have her free of tubes and plasters!

20140312-092110.jpg