Audrey Starts School!

Audrey holding a picture of me at primary school

I’ve just dropped off a piece of me in a classroom with lots of people I don’t know. The little lady has started reception at primary school.

My daughter is friendly, kind and gentle. She loves imaginative play and reading books. She likes routine. I have no doubt that she will enjoy school, I’m just not sure how much I’ll enjoy her being there!

Anyone who knows me that I will cry at TV programmes, songs that come on the radio and a fleeting thought about someone’s sad situation, so it was a huge surprise that I didn’t cry today dropping Audrey off at her first day of school.

Several factors helped – school drop off is not a romantic, sound-tracked moment.; it’s carnage! We went as a family, with a child in a buggy and one on the loose, we battled through a crowd of legs and shouting and hugging and hellos and goodbyes to get to her class. Also, Audrey was very excited. She managed to (almost) walk all the way there (major achievement) and she jumped, sang and hugged her way down the road, she was genuinely happy to be going to school. It’s tricky to feel the true emotion of a momentous occasion when you are in it. It’s actually easier for me to be tearful anticipating it or reflecting on it.

And so, here I am in a cafe. Ted and Rex are off shopping (typical boys!) and Audrey is in her school classroom, with her teachers.

Of course I can’t help but reflect on 5 years with her. 10 months of maternity leave of just us, followed by a mix of us and nursery, us bump and nursery, us Rex and nursery… and now Audrey has her own thing, she is a schoolgirl!

“They” say it goes in a blink of an eye. I don’t know if  I feel quite like that, but I do feel immensely proud of Audrey and how far we have come from tiny baby on oxygen to confident 5 year old.

As I analyse my feelings, I can see what is creeping in… I felt it during maternity leave with Rex. She had her nursery days and we went to groups but I was suddenly a different mum, I was seemingly a mum of one typical child but that was not my whole identity. She is a part of me, a part of me that I am truly proud of and it can feel very strange to be out and about without her. What a mix of emotions this brings and a new chapter for us all – I have handed in my notice at work and plan to work on freelance writing. I am very lucky to have a supportive husband allowing me to take this leap and it also means that I can be there to drop off and pick up Audrey from school.

Happy September and good luck to everyone in their “firsts”, I love autumn and I’m feeling so very happy that its crisp and sunny outside and the leaves will soon be crunchy under our feet. My favourite time of year.

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NIPT: Don’t Screen Us Out

NIPT (non-invasive prenatal testing) is being hailed as an amazing breakthrough now available on the NHS in the UK, that will save so many babies. The theory is, women will be offered this testing and there will be no need for an amniocentesis – which carries a risk of miscarriage. No need for further testing because this non-invasive test will give you an accurate answer on whether the child you are carrying has Down’s Syndrome (or Edward’s Syndrome or Patau syndrome) and then you can be prepared for their future (aka you can abort). Ok, that’s harsh, but when you consider 9 out of 10 woman abort when finding out their child has DS through amniocentesis (generally quite far down the pregnancy time line), how many will choose to abort when having this accurate test at 12 weeks? 

This has rocked the DS community because we are basically heading towards the elimination of Down’s Syndrome altogether. Which feels like a pretty crazy concept when you actually have a child with DS. We’re part of a community that will cease to exist, but not only that, it will cease to exist because society decided that babies with Down’s Syndrome have less value than ‘typical’ babies. That their lives are so tough(?) troubled(?) unhealthy(?), that they are better off not living. How do we explain this to Audrey?

I do of course have to acknowledge that 80% of babies with Patau syndrome will die before they turn one. I do understand that some of the conditions identified early will be extreme conditions that are not the same or similar to DS, so a breakthrough like this may save heartbreak further down the line. And I don’t want to wade into this debate without acknowledging that we are screening for abnormalities and health problems. It’s just that I spend my days immersed in a world where people with Down’s Syndrome are making a difference, they are enriching lives and fulfilling a role within society. They are not something that needs to be screened out of existence.

Let’s imagine you are given power and options when you are pregnant and you can fill out a questionnaire choosing various traits and facts about your fetus – shaping them and their future. What boxes would you tick?

Would you like this child to be born disabled?

Would you like this child to wake up at 5am a lot? 

Would you like this child to be a fan of One Direction?

Would you like them to be slutty?

Would you like them to become a member of UKIP?

Let’s face it, we have little control over what that fetus will become. We can do our best to nurture a good human being. Someone fun, kind, clever… Someone who finds a perfect career and true love and happiness. Someone who looks after themselves and their family. But nothing is guaranteed. The only thing I can guarantee about having a baby, in my limited experience, is that you will love them unconditionally. They will be the best thing you ever did. The most beautiful thing you ever saw. The most valuable life to you. 

It scares me that a screening test will tell you your fetus has Down’s Syndrome and that’s what will define the baby. You’ll imagine a disabled child. You won’t know anything else about them. The screening won’t say their face will light up at the sight of yours. That they will dance like crazy to even a hint of music. They will clap and cheer and cuddle their teddy and say “They did it!” when someone wins on a gameshow. They will stroke your face and say “lovely”. When they hear you say “kitchen” they’ll do the Makaton sign for “chicken”. They will constantly crack you up, surprise you and frustrate you. Your world will revolve around their happiness and wellbeing and you’ll love it. 

The world needs diversity. Ups and downs. If we screen out conditions that cause complications and make people different, where will it end? How bland will life become if we can eventually make everyone “perfect”? It’s a sad future without more people like Audrey, that’s for sure. #dontscreenusout
 
   

  

Friends and Family

I’ve read blog posts where mummies (of children with DS) have said “you certainly learn who your friends are” (after a Down’s Syndrome diagnosis), so I just wanted to write a post in praise of our friends (and family).

Because we certainly learned who our friends were… and they were exactly who we thought they were. 

Lots of worries flashed through my mind in those first weeks of Audrey’s life. And one of those worries was that some people may not want to see us anymore, because our child had been born with special needs. I feel like an idiot as I type that now, but at the time it was something I genuinely  thought. I worried people would feel awkward having to say she’s cute (when really they would be looking at a face that just screamed Down Syndrome and therefore ugly) and that they wouldn’t be that interested in visiting her. 

Shall I enlighten you as to how our friends reacted?

Well, let’s see… EVERYONE wanted to see her. They were all interested and positive and supportive and… I suspect exactly as friends are when any baby was born, but it felt like they were extra in love, extra supportive.

Maybe this is just how people are when a baby is born (I have no comparison to a “typical” baby), but with Audrey it was like we had made a little celebrity. Friends went out of their way to shower her with love.
Of course it is an unwritten rule that when you see someone’s baby you have to say they are beautiful or cute or some positive adjective, even if the baby looks like a wrinkled old man or yoda. But you don’t have to say you love them. I didn’t expect other people to love my baby, but they did. They loved her. And they were wonderful at showing it and saying it. Not just through gifts of clothes or toys (although we were well and truly showered), but through visits, texts, emails, gifts of food (for us), lots of help, support and lots of gushing about Audrey. Over compensating? It didn’t feel like that. Honestly.

And as she’s grown, people haven’t shyed away or avoided contact, they’ve thrown their arms open to give the B-W family (but mostly Audrey), a massive hug. 

Why on earth did I expect any different? 

Ted are I are both blessed with an excellent bunch of school mates who still make an effort to hang out, as well as lots of cool university friends, Brighton friends, work friends and now NCT (antenatal class) friends, all of whom have been great. 

I have so many positive friend moments that play through my mind… Becs coming with me to hold may hand through the scan that discovered Audrey wanted to get out, the tearful hushed conversation with my brother as I explained why we had struggled to confirm her name, the dreaded tearful phone calls to Claire and Mary the morning after she was born, which were met with declarations of instant love. Unconditional love. Katie and Claire standing with me when the doctor confirmed Audrey’s heart was fine and the tears flowed again… I’ll stop there as I can’t name check everyone and I don’t want anyone to feel left out!

The unconditional love is the key. No one was planning to love her only if she was cute. Or only if she could walk at 12 months. Or grow up to be a genius. 

They love Audrey because she is a little piece of us, their friends. Oh and she’s awesome.

Here’s a little dig through the archives for Audrey pictures with friends and family…