A World Without Down’s Syndrome

Daddy holding his tiny baby daughter

When Audrey was born, my brother Googled to find out if any celebrities had a child with Down’s Syndrome… and he found Sally Phillips. It was very thoughtful of him to try and make it “acceptable” for me – appealing to my (shameful) interest in celebrities. At the time I read an interview with her talking about her son Olly and it was very positive. But I couldn’t find more than that one interview and I guess I wondered why she didn’t do more. But now I see that it’s a really big deal to “put yourself out there”. 
I have wanted to write about Sally’s documentary (“A World Without Down’s Syndrome”) for weeks, but I’ve found it incredibly hard. The lead up was a draining and consuming time. I felt anxious and stressed about being involved, about making a difference. So much positive and negative feedback, so much going on… And yet I know that this was just for those of us with an eye on the subject. For many, the film may have passed by unnoticed. 

But not me. I was watching it approach slowly, following a behind-the-scenes Facebook group that was prepping for press and publicity around it. I had planned to catch it at my convenience on iplayer, but after watching the beginning, I had to stay up and watch it. I was crying within seconds of it starting!

I was so desperate to write about it, yet my thoughts sort of ran dry. So many reviews. So many reactions. It’s been tiring processing it all. It matters to me – that people would watch it and love it, watch it and learn. But I appreciate why many thought Sally wasn’t the right person to make it – she comes from a biased perspective. However it needed to be made and it needed that positive skew. That was the point – communicating the positive side to having a child with Down’s Syndrome – balance against the negative information and medical condition list you are given at diagnosis. And also questioning a society where we actively look to rid the world of people who are different. Someone has decided that this is a wholly negative condition and therefore it’s worth screening for accurately.

If you watched the film and took it the wrong way (maybe thinking it was anti- pro chioice, judgy or preachy? Maybe thinking it sugar-coated life with a child with special needs?) please be assured that wasn’t the aim. It was a truth, it was Sally’s truth.

And just as Sally shared her truth, I share mine. Audrey hasn’t needed lots of medication or operations. She was on oxygen for the first 6 months of her life because she needed a little help breathing in deep sleep. She needs glasses because she is long sighted and (like me at her age), she has a lazy eye (aka squint). She has low muscle tone which is indeed a bugger and is making it harder for her to walk, but it also means she can practice yoga like a pro (like her Great-Grandmother, Emily, aka the Filleted Lady!). She lacks strength in some areas, but is amazing in others. She is basically a human being, perfect and flawed…yep, she is one of us.

Trying to create a world of perfect humans scares me. It also scares me that the very same brother who found Sally Phillips Googling famous people linked to DS, thinks that it’s a good thing to rid the world of the condition. Yes he said that. How can he of all people not get it? I guess it’s a common view that the world would be a better place without disability. Again, I feel I have too much to say on that subject so I’m struggling to blog about it. But clearly, a world of varied strengths and weaknesses, of light and dark; that’s a better world than one of “perfection”. I can’t even say for sure what perfection is. I had a lazy eye as a child, my sister was diagnosed with MS at the age of 40 – are we so flawed we shouldn’t have been granted life? Eek, what a debate this could be…

My hope is that people simply think about people with Down’s Syndrome as that – people. Understand that they contribute to the world we live in and bring happiness to their families. I’m not a religious pro-lifer, but I feel very blessed to have Audrey. Our lives are richer and happier for having her in it and she’s about as close to perfection as I could ever imagine.

#worldWITHdowns

 

My daughter 

I have a 3 year old daughter. She likes to play with my hair whilst she sucks her thumb.

She loves music and dancing.

She adores books.

She gives epic cuddles.

She likes watching Mr Tumble and Justin Bieber videos.

She reenacts ‘circle time’ from nursery at home with her toys.

She loves fruit.

Over-used phrases since she arrived include “I love you”, “You are so pretty”, “You are so clever”, “You make Mummy happy” and “Cuddles!”.

She is everything I ever dreamt my little girl would be and much more. As each day passes I see us together in the future; singing, shopping, scoffing popcorn at the cinema… All these simple things fill me with joy and excitement. My heart swells when I hear her call me “Mummy”.

…And I will just add that I still have to suffer the obligatory tantrums over presenting her with rice cakes instead of breadsticks or asking her to put her jacket on – it’s not all plain sailing.

But oh she is fabulous… Entertaining, amusing, cute as can be and incredibly emotionally intelligent (if she so much as sniffs a crack of upset in my voice she comes over “Y’ok Mummy?” – head tilted to one side in concern, offering a cuddle).

When we go out, I feel like I am proudly presenting her to the world; “Behold! My beautiful offspring!”.

The other night I put her to bed and laid down with my face next to her’s and said “I love you” and she stroked my face and said “I love you” right back. It was pure magic.

I fall more and more in love with her everyday.

Nothing out of the ordinary here, I assume many mums will read this and think, “Yes, sounds like a standard mother-daughter love.” And it is.

It’s just my daughter has Down’s Syndrome. So when she was born, someone gave me some news and some literature and it was like putting a sticker on her that said “This one is going to be a little bit rubbish and not meet your expectations”.

 

Thankfully that was bollocks.

This post is also on Selfish Mother; http://www.selfishmother.com/mother-daughter-love

Audrey’s Magical Powers

The other night I had half a glass of wine and cried because I love my daughter so much.

It was Friday night; Ted arrived home with fish and chips. We arrange a little portion for Audrey, stick Rex in the bumbo, get the music turned up and enjoy ourselves. After stuffing our faces we all retreat to the sofa and dance. And sing. And laugh.

In amongst this pretty fabulous (but not out of the ordinary) scene, I look at Audrey and start crying (with joy). She senses the tears immediately; “Y’ok Mummy?” she says, arms outstretched for a cuddle. “Better?” she asks, patting me on the back.

You see, I just get struck now and then by these scenes of happiness. Of our “normal” family life and the light that Audrey brings to it.

As we continue with our second parenting experience, it can feel strange to be out and about with my “typical” baby. I feel like I don’t have my “special needs mummy” badge on display, that no one knows that I have an extra special family with a different experience of how things go. How nothing should be taken for granted. Rex is 4 months old and seems so sturdy, almost ready to sit up, stand… Talk. Now I see clearly how hard Audrey has had to work at things that just happen for typical kids.
But somehow because of this extra chromosome Audrey has a magical way that just makes things special.

She does some classic sympathetic crying when other kids are upset (oh her famous bottom lip!).

She says “Thank you” when children steal toys from her.

She can get a smile out of some of the grumpiest looking people. And on that note…

She doesn’t judge. She waves and says hello to tramps, teenagers, people covered in tattoos, people who look unclean, the old, the young, the fat, the thin, men or women, black or white – Audrey just likes people and that makes me proud.

It’s also fabulous to witness how she can light up a doctor’s waiting room or bring out smiles to grumpy people on the bus or in a queue. 

Her dance moves are a sight to behold.

Her cuddles melt into your body.

She just pretended to hurt both her feet so I would kiss them better.

She has started using “one more” as a way of getting me to continue playing/feed her biscuits/extend bedtime reading.

She regularly shuffles over to help Rex reach his toys.

There’s so much to say about Audrey’s wonderful nature (and her cheeky attitude), but I’ll leave it there for now. And please know that she is still trying lots of toddler stroppy tricks on me and is getting to be quite a handful these days. Still, I predict Rex’s toddler tantrums will be a bit harder to handle…