Music and lyrics

Audrey first heard music (outside of the womb) in the arms of her daddy whilst mummy took a shower. We were in the room on the baby unit, where we had to spend the night to see how we got on with Audrey. A sort of transitional home from home, with nurses checking her over and weighing her (oh that obsession with her weight! So glad it’s over). We would not be allowed home unless she gained weight!

I entered the bedroom to be greeted by The Supremes singing “Baby Love”, Ted cradling Audrey in tears. She was 3 weeks old and looked like a music fan already. It was a bit of a turning point as she was no longer on the ward and seemed more like “ours”, plus a reaction to music made her that more… normal. I know that might sound ridiculous, but when your head is full of “difficulties” and “special needs”, it makes you think things won’t ever be “normal” and you worry what sort of interaction you might get from your little one. Of course I know now that those worries were pointless, but every little moment like this one served to teach me that.

We have played Audrey a lot of music since then, everything from The Beastie Boys to Blur to opera. She likes a good beat and from around 13/14 months she started dancing (rocking back and forth whilst sitting), which is amazing.

Of course Audrey loves the irritating music from a tacky, bright, light-up toy too and is getting quite adept at bashing the right places to get the music going!

Thankfully she is just as happy to listen to music we like, especially when we sing along and dance around the room. In fact, I’ve had several of those funny lyric-realisation moments that have led to tears… You know when you’re a teenager and suddenly you understand what the love songs are about? (Imagine me, 90s teen, ‘Again’ by Janet Jackson on repeat…). Well you get to experience that revelation again after having a baby.

When Stevie Wonder (one of my favourites), sings “Isn’t she lovely, made from love” I get such a warm, positive feeling. “Made from love” just gets me every time. It sums up making Audrey.

I’m also a Justin Timberlake fan and although I’m aware ‘Mirrors’ is about his wife, there was a sudden point listening to the lyrics that really struck me and now it has become an Audrey song…

I’m lookin’ right at the other half of me,
The vacancy that sat in my heart,
Is a space that you now hold.
Show me how to fight for now,
And I’ll tell you, baby it was easy
Comin’ back here to you once I figured it out,
You were right here all along.

It reminds me of when we reminisced about Audrey’s scan picture (she was pouting or sticking out her tongue) and the fact that she was such an active, kicky baby. There we were, looking at her a few weeks old, little tongue sticking out, as she kicked her legs… And then we realised there was no need to mourn the baby we thought was there – it was Audrey all along!

Here’s that cheeky tongue:

IMG_4386.JPG

Stuff and things 2

So we had a relatively quiet weekend. Ted and I are both hoarders, so we aimed to get junk out to charity shops and look at what we really “need”. Ted is also obsessed by bread baking at the moment, so a high level of bread was consumed.

On Friday I was excited to meet the latest baby with DS on the block at our monthly pre-school DS group (the one with the fab uncle who came to meet everyone at the T21 picnic). I’ve seen other mamas comment on this – that exciting feeling when someone joins your club, but you know they will be feeling very different about it… Really lovely to see gorgeous little Elena though and meet her mummy and daddy. She is a month old now and doing really well. We met again for coffee on Monday afternoon, Elena slept the whole time. Ahhh those days…

Monday dinner time Audrey gave me such a “lift” by doing the most simple yet amazing thing: she fed herself with a spoon!!! Aaaggghh! Not sure how to get the video on here… You can see it in our Instagram though (@vickywooandaudreyboo). I just love that something so small is a big step forward.

At nursery, the had a collage on the wall to celebrate the book ‘Guess How Much I Love You” and Audrey’s picture was there, showing her enjoying the book!

IMG_4344.JPG

In other excitement, Audrey has her first modelling job today! More info to follow, hoping her career takes off so she can buy us a house!!

The road ahead…

When you have a baby, you suddenly realise you are at the beginning of a very long journey. You look at this tiny bundle that is totally reliant on you and the scale of what you’ve taken on hits you – they need you for at least the next 18 years.

Now imagine that heavy realisation combined with all the preconceptions about Down’s Syndrome…

My husband has this amazing positivity that can turn anything into a good thing. When Audrey was just weeks old he was saying how lucky we would be potentially never experiencing “empty nest”! I liked his thinking, however I had always (when thinking about having children) imagined the “pay off” towards the end when they look after you!

It is natural to always be looking to the future (Where will our next holiday be? Where is my career going? etc), but Audrey is (slowly) helping me to focus on the present. Wondering and worrying about when she might crawl, when she might get teeth and what sort of adult she might be… It’s all pointless. I can’t predict these things and why do I need to know when these things will happen?! Do parents of “typical” babies fret about these things?

One of the biggest realisations after becoming a parent of a special needs child, is that life goes on and in not much of a different way to how you imagined it. However there are times where I worry we are in denial about what having DS means to Audrey and her life. Other times I’m just thankful we are positive people and that we don’t let it get on top of us.

The fact remains that Audrey’s life will be different to that of a typical child. There will be more challenges and there will be difficult times, but that doesn’t have to be our focus, we can choose to carry on as “normal”. I have certainly said many times how glad I am that we didn’t know Audrey had DS when I was pregnant. The pregnancy was so happy and we had no time to fret or form ideas about this baby growing inside me… It was relatively worry-free.

I think the best plan is to enjoy the journey and let the road unfold ahead of us like the magical mystery tour that it should be…The ups and the downs…We’ve already shown we can handle surprises…

IMG_4335.JPG

Too much information?

Instagram has become an obsession… What was once a place for my food photos has now become an Audrey micro-blog and a place where I am part of a DS community. It’s an amazing place for inspiration… Little ones walking, talking, starting school… positive images of families going about their life with an extra chromosome in the mix.

But there are downsides to following these other mummies/families… Operations, sleep studies, hospital visits, illness, delays in development, disappointment… We are all sharing our lives and this includes the downs as well as the ups… But the thing is, we are all very different. Kids with DS may share characteristics, but they are all still individuals and have varying needs.

For the most part I have avoided medical information on Down’s Syndrome. I pick up snippets of info from other people, but on the whole it’s not fun to be worrying about Audrey going back on oxygen, having an op to remove her adenoids or losing her hearing. Unfortunately, following these other T21 families has exposed me to some of the possible issues Audrey might face and have also led me down that unhealthy unhappy path… Comparison.

I’ve seen on more than one occasion this quote posted on IG:

“Comparison is the thief of joy”

And indeed it is.

It’s fine seeing Audrey’s ‘typical baby’ friends walking, talking, growing… But what about a baby with DS very close to Audrey’s age doing things Audrey can’t do? It’s tougher to be relaxed, I guess because we all have high hopes for our kids, even if from the outset they have something about them that prepares us for delays. Our expectations for Audrey are that she will be the best that she can be (and believe me, I don’t mean we’ll be pushing her and forcing her), we just expect her to be the best downsie ever! So when you’re following the progress of another little one and they are signing/crawling/holding their bottle and your child isn’t… It’s hard not to feel… Deflated.

The best advice I can give to anyone else in this situation is to focus on the positive and, as Wayne would say; “Live in the now!”.

Audrey is currently getting on just fine, with no major health issues. She sits up all day, she waves, claps, rocks to music, feeds herself finger food, attempts to hold her water cup, nods when we nod, plays peekaboo, babbles all sorts, hey, when I start to list things she can do a lot! Phew!

IMG_4148.JPG

Daddy and Audrey x

What say you?

I’ve read a few posts about the best way to react/what to say when a friend or member of your family has a baby with DS and a year down the line I feel I can add my 2 cents.

As with anything in this world we’ve found ourselves in, I often wonder what I would have been like on the other side of the fence… If a close friend rang me to say they had just had a baby and – shock – the baby had DS… Would I have said the right thing?

A couple of weeks ago we were at my brother’s 40th birthday party. Many of his friends had last seen me when I was pregnant, or even before that, none had met Audrey yet, a few had seen her via Facebook pictures and videos. Now, the drink was flowing and it must be tricky chatting to someone who’s had a child with DS – do you make reference to it or not? But two of my brother’s friends (both male) had similar conversations with myself and Ted that we discussed the following day. To be honest, we just laughed/shrugged it off, but we acknowledged it’s a shame people have this response… The general gist (and they were in no way trying to be offensive, both the complete opposite) of their chat was; how well we were “coping”, how it must have been “devastating” and what “a blow” it must have been… Even typing this I’m thinking, “oh it’s not such a bad response”, and as I’ve said, they weren’t trying to be negative, but the truth is the best responses have been those who either don’t mention it and just ask how she is, how parenthood is treating us etc. or those who ask questions about DS in a genuine ‘what does it mean’ kind of way.

Yes, at the time we probably were devastated, but that seems like such a wrong reaction now. With the knowledge we have now, I’d never describe it as devastating. I’d say we were shocked, but hey, she’s perfection now, so we’re over it. I also wanted to laugh a bit about “coping” because at the moment we are just coping with having a baby… Same as any other parent, no one would mention how a parent of a typical baby was coping so well with handling their little one.

Our friends have actually all been fantastic, we really can’t complain. Audrey has a massive fan club, a ton of love and 99% of the time people say the right thing.

But back to responding when you hear the news that someone you know has had a baby with DS:

1. Congratulate them. Please. This is by far the best response.
2. Ask the normal questions about time of birth, weight, whether the little monkey is sleeping well etc.
3. Do express concern over any health issues etc, but don’t make assumptions about what the DS means (oh you’re breastfeeding? I heard they can’t breastfeed? Does baby cry? I don’t think they really cry much do they?).
4. As time goes on, be mindful that milestones might be delayed (we are constantly asked if she is walking yet and we haven’t got to crawling yet). Perhaps just asking how the baby is doing in general is an easier question for parents to respond to. I’m very proud of Audrey’s rolling, babbling, waving, clapping, kisses… Oh I could bore a lot of people with things she’s achieved, but it’s not my favourite thing to explain we don’t know when she’ll be walking.

Just try to remember, a baby coming into the world… That’s an amazing thing that needs to be celebrated. I wish we’d have celebrated more in those first difficult days… We are certainly making up for it now!

Waving

In the last week or so Audrey’s waving has reached epic proportions! Who knew that this kind of interaction would be so amazing? We are constantly waving at her like nutters and cheering when she waves back!

It’s the best 😊. I can’t seem to add a video of her performing, so here she is just looking lovely for a birthday message for my best friend…

20140626-085349-32029126.jpg