My Daughter Audrey and Down Syndrome

I love all the list I receive, I find other people’s stories fascinating, but only a few make me dig deep and think about my own perspective on something as much as this one.

Vicky AKA @vickywooandaudreyboo is mother of two children; Audrey (4 and a half) and Rex (2). Audrey has Down’s Syndrome, which is a “naturally occurring chromosomal arrangement”. Here Vicky talks about what it’s like to unexpectedly have a child with special needs:

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• I strongly believe that if we as a society were more inclusive and if “difference” was widely represented in the media, Down’s Syndrome could be just something that some people have, rather than something we actively “screen” for. People with Down’s Syndrome can have some developmental delays, varied health issues and a learning disability, but the spectrum is so wide and education has come such a long way, that most live very fulfilling lives.

•  Audrey’s DS was a surprise and I’m always brutally honest about this – not a welcome one. My mind went crazy with depressing thoughts of how this had ruined everything, as if we would never have fun, people would avoid us, we would suddenly be a “special needs” family and my child at that moment was a disappointment.

• My husband held her first, wrapped in a towel. I caught a peek of her eyes and I thought I saw it then… they laid her on me for skin to skin and when I looked at her face all I saw was Down’s Syndrome.

•  It’s likened to grieving; you grieve for the child you imagined you would have; you have to come to terms with the new path you are taking. But what you’ve lost is an imagined child, an imagined future – so there’s no need to grieve, nothing is actually lost. You have a baby you can embrace, you just have to realise you will love them for who they are, not who you thought they might be.

• Now I completely see her for who she is: my daughter. My Audrey. All that I dreamed of and more. A gentle, thoughtful human being who makes us laugh and makes me proud every single day. She truly inspires me.

• In many ways I do like to bang the drum about how she is “just like any other 4 year old”, she likes Disney films, she loves reading books and playing with dolls. She likes pizza and ice cream and being on the swings at the park.

• But she is not like her typical peers – she is unsteady on her feet and finds climbing a challenge. She stutters sometimes trying to get words out and she prefers interacting with adults to other children.

• We have to write a report for school explaining why she will need additional support.

• I have to sit in a room of professionals and listen to them talk of her “severe delays”. I take her for blood tests and hold her arm out whilst they rummage for a vein. She still isn’t potty trained. She didn’t walk until she was 3.

• Despite the challenges; I wouldn’t change her. It took me a little while actually. My husband was quicker to embrace it all, the good and the bad.

• I wanted to erase the Down’s Syndrome in those early days. I wanted her to have a “normal” life. As time went on, it became clear that without Down’s Syndrome, she would be a completely different child and now we love her for who she is, how could we change her? Her quirks, her glasses, her beautiful eyes – they come from her having this condition and they have made her perfect.

• And we gave her a baby brother. I have to say that having my second child (Rex), gave me a new perspective on those early feelings; it wasn’t all the shock of the Down’s Syndrome that made me feel distant, confused – that’s just having a baby. I think shell-shock is a reasonable reaction to a tiny human arriving from your body!

• Once we came out of the dark times of Rex’s newborn phase (he wasn’t the best sleeper!), well, we now find ourselves with: two walking, talking siblings!

• Full of love and support for one another as well as a load of tears and shoving and pushing over a balloon/cardboard tube/plastic cup! Hurrah! Turns out, they interact just like any other siblings do.

• To recognise World Down’s Syndrome Day, I want to leave you with this; a woman who finds out prenatally that her unborn baby has Down’s Syndrome, can terminate at up to 40 weeks…That’s right, at FULL TERM; if it is deemed the baby has a “severe disability” it’s at the “doctor’s discretion” what conditions fall under this category, I believe cleft palate is still included). 9 out of 10 woman who find out prenatally their baby has Down’s Syndrome, choose to abort.

• This is why I share our life.

• This is why we (the DS community) fight for inclusion.

• I’m pro-choice, but an informed choice. I wouldn’t want anyone to base a decision on an out-dated view of what it’s like to have a child with learning disability.

• My life is so rich and interesting and happy because of Audrey; when I first saw her face I felt so much fear, now I look at that face everyday and I see so much promise. It’s exciting. 

• I truly believe she will make a difference in this world. In fact, she already has.

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