Down’s Syndrome

Changing sides

~ Vickywoo ~ Leave a comment

Since Audrey turned 10 months I have started to find the prospect of another baby less terrifying… Still terrifying, but just not as scary a thought as it was a few months back. So as my mind turned to thoughts of baby number 2, I couldn’t help but wonder… What about the screening for DS? Ted and I discussed and decided there would be no point having the tests second time around, as it will make no difference. However, I then started to wonder about the screening… Why do we screen for Down’s Syndrome?

Is it about the serious health issues associated with DS (heart, bowel etc)? Is it about being prepared for a “different” child? I even considered the possibility that the NHS might want to guide someone down the abortion route in order to save money (would a DS baby need a lot of additional care/medication/operations?).

The fact is I’m only wondering about this now because I have a beautiful baby with DS, who escaped the heart and bowel problems and is doing well and is a joy. Rewind to this time last year and I would have thought it perfectly reasonable to screen for DS… After all, I was someone who had made the declaration that I “couldn’t cope” with a child with DS! This blog post by Hayley of Down’s Side Up explores this area… http://www.downssideup.com/2014/06/the-sugar-coated-disability-abortion-lie.html?m=1

What struck me here (other than the horrible quotes where women were treated badly after deciding to keep their DS diagnosed foetus), was explaining to our children in the future why we screen for DS… Something I thought was perfectly acceptable (to screen for), has now become… Shocking. I guess this is because we (DS parents) could never explain to expectant parents that they will love that child no matter what… It will be ok, you will cope! The coping and the loving will only really kick in when that baby is in your life.

Not sure what the answer is here, the screening is there and a foetus testing positive for DS has a slim chance of survival… All we in the DS community can do is try to spread the message that there is happiness and joy in our family life and take away some of the “fear” if we can. I definitely found huge comfort and positivity in looking at blogs such as Down Side Up and Kelle Hampton’s Enjoying the Small Things when I was coming to terms with Audrey having DS. I was literally thinking “wow, they still eat out/dress well/have fun” – because at the beginning I felt like DS = end of the world. We need to show that it’s not the end, it’s the beginning… The beginning of a different world, but still a very fun/fashionable/foodie one!

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Life changes

~ Vickywoo ~ Leave a comment

Audrey is 10 months old and as the cliche goes… They really do grown up so fast.

She’ll be at nursery 2 days a week and with Grandma 1 day, whilst I try to remember how to “work”. How on earth will I get on back in the “real” world?!

Anyway, everyone keeps saying how it’ll be good for me, that I’ll get a bit of “me” back and good for Audrey as she will get a more balanced week too (not so mummy heavy!). I am sure this is true, we will both benefit, but what I will say is, nothing will ever get me back to “me” as I’m just not that person anymore. I really don’t want this to sound negative, but I guess another part of having a baby that I wasn’t prepared for, is how much it changes you as a person. I was reading an interview with Drew Barrymore this morning and she said;

“Being a mum is incredible, but it’s hard work, all day long. It does feel like 99 per cent of your time is for the baby and one per cent is for you. And that one per cent still comes with an avalanche of guilt. You’re like, “Oh God, it’s ten o’clock at night and I’m watching bad television. Yes, she’s asleep, but is this OK?” It’s like you’re doing something you’re not supposed to be doing”.

I do believe some women can probably make the split different, but I’m definitely there with Drew and my measly 1%!

Back at work I can be safe in the knowledge she is looked after well, but I do feel odd that a 20 year old stranger (who works at the nursery) is her “key person” and is in charge of her all day, 2 days a week. It’s going ok though.

I guess I’m just looking forward to a time when each bottle/nap time/food needs to be on time and go well – I need to chill out basically and time apart should help!

On that note… Off I go to a hen weekend with Audrey spending two nights with Grandma. Our first nights apart since she was in the baby unit (and that doesn’t count!!). Yikes.

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Things Audrey has taught me…

~ Vickywoo ~ Leave a comment

It’s funny when you realise how much you can learn from a life experience. Funny because it seems like such a cheesy cliche, but hey ho…

Audrey has taught me many things by coming into our lives. I guess number 1 would be that I am stronger than I thought I was and can handle more than expected.

If someone had said “You will have a baby with DS”, I would have said “No way, I couldn’t cope!” But the reality is, life throws something unexpected at you, but you just get on with it and cope.

I knew I had a pretty great husband, but Audrey came into our lives and I realised I have an amazing husband. I never really understood the phrase “He’s my rock” until Ted became my rock. From the moment the doctors said “emergency c-section” Ted was everything I needed. He was calm and strong and by my side the whole time. Whilst our minds were filled with confusion and worry over Audrey’s DS, he quite simply said “I just love her” and was there for her from the very beginning. He stayed strong when our world was turned upside down and I it suddenly dawned on me… This is what it’s like to have a “rock”!

She’s also made me realise that perfection isn’t what you think it is… I guess perfection is much like beauty, it’s in the eye of the beholder. She is perfection to us because your baby always will be, no matter what. Ted and I actually discussed before she was born; “Do you think we’ll know if our baby is ugly?” and although I’m pretty confident anyone would agree Audrey is a beauty… I don’t think anyone would ever think their baby was ugly, even if it looked like a potato to everyone else.

The beauty of your baby is unlike anything else in the world and I feel like I know that even more so because the Down’s Syndrome that was all I could see when I first looked at her face, is now something I can barely see. When I look at her now I wonder if other people can tell… when I look at her now I just see our beautiful Audrey.