World Down’s Syndrome Day 2015

21st March is #WDAD15 (World Down’s Syndrome Day). A time to raise awareness, raise money and raise a toast to that special person with an extra chromosome who has affected your life.

A year ago, Audrey was just 8 months old when we attended a local gathering and met lots of DS families… and faced seeing older children and adults with DS; which was something that definitely scared me back then. We came away feeling good. For me, raising awareness is predominantly about showing how ‘normal’ (whatever normal is!) life can be with a child who has DS. Of course things are different, but those early panics brought forth feelings that nothing would ever be the same again… That this little baby girl would have a difficult and sad life. So I want my blogging and instagramming to show that Audrey’s life isn’t a struggle, she’s not suffering, she’s just getting on with things and she just so happens to also be incredibly beautiful and wonderful!

Mixing with other families serves to strengthen the feeling that ‘everything is going to be ok’. The surprise of a child with DS can make you feel like your world has been crushed, when in fact it’s just shifted a little. You may end up on a slightly different path to the one you planned, but isn’t that what makes life great?

People said to me that Audrey would teach us a lot and initially I thought that was just a cheesy statement that gets dug up to make you feel better. But just 20 months in and it’s so true. She has taught us so much already. Priorities shift when you have a child, but I also think I look at life differently.

Isn’t it great to have people in the world who challenge your view of beauty? And make you less judgemental? Making you appreciate the smallest things? Well that’s what Audrey has done.

I never could have imagined that I would become this enthusiastic member of the Down’s syndrome community, but here I am, sharing our story and being thankful for Audrey everyday. She is the love of our life and we are so excited to watch her grow and learn. And how amazing is it that social media lets us watch other little ones with DS grow up too? We can all be connected from all around the world, sharing our ups and downs, giving support where needed. 

Happy World Down Syndrome Day (taking out the ‘s this time for the Americans!)! 

Oh and of course, here she is… Will try to get pictures of us at the local WDSD event and post them later.



Keeping it real…

Ok, so amongst the Instagram pics of Audrey grinning up from our everyone-seems-to-have Ikea rug, what else is going on…?

Let me tell you – puke. Poop. Snot. Eye goo. Worry. Tears. Exhaustion. 

Audrey has been ill this week and I’m currently in the thick of it (well no, that was probably more 2am when she woke about 40 mins after I’d just given her cuddles and Calpol and it took me an hour to rock her to sleep…), but right now I am filled with cold, breathing through my mouth, with Audrey slumped on me asleep, covered in crusty snot, with laboured breathing and a dry pouty little mouth.  I am tired and worried and I would like nothing more than to have a good cry. But instead, I’ll keep cuddling and I’ll keep shushing and saying “Mummy’s here, it’s ok”.

You might have thought the low point of the week was Audrey projectile-vomiting porridge and blueberries all over us both and that trusty rug, but no, today is definitely lower… Because today Audrey has slept all day. At the tiny points where she’s been awake (nappy change, sip of water, doctor prodding), she’s been lethargic and whiny and her eyes are like slits. I feel so utterly helpless and just want to rewind to yesterday when she perked up and wouldn’t stop waving to the receptive young couple behind me in the cafe. This is horrible. Seriously, how do mothers do this? It’s so horrible having an ill child. I adore the extra cuddles and I love the accessibility of her tasty forehead… But I’d do anything to see my bright little monkey again. The claps, the high fives, the constant request for food (signing “more”), come back little Audrey boo, I miss you!

I also (stupidly), feel like I jinxed things. I kept telling people how losing my job wasn’t so bad – being at home with Audrey is fun. And then this happens and I feel like I’m dealing with a newborn again – not knowing what to do for the best, second guessing her needs and hoping a cuddle solves all. Meanwhile, it’s one of the sunniest weeks we’ve had and I’m glued to the sofa.

Funny how each tiny phase feels like an age… I know that by next week I’ll have those smiles back, but for now, it feels like we will be ill forever and that little Audrey has lost her spark 😦



The gap widens…

When Audrey was a newborn, we over-used the phrase “she’s just a baby”. Because at that time, her needs were not very different to those of her peers. She felt different (floppier) and she had a cannula on her face for oxygen, but aside from that… It was still all naps, boob, nappies, bottle, cuddles…

Audrey was actually the first from the NCT crew to roll from her back to her front. At that point I thought she’d probably hit all the milestones within weeks of her baby friends. I was sure we had a baby with Down’s Syndrome that would out-perform any other.

Soon they were all rolling… And then Audrey was a bit behind on sitting up and holding her bottle/feeding herself. Then they were all crawling/bum-shuffling and she’s finally mastered sitting up, but even so, she wasn’t that far behind. But before you know it, they are all walking. They are all saying words; “Mama”, “Bye bye”, “Down”, “Dog”. Their hands are very purposeful… there is a marked difference.

Of course, all of the NCT mums are great. They play down their child’s achievements; “Oh he’s still not that steady on his feet..” or “He says ‘Mama’ for everything”, but bless them, their kiddies are doing what they should be doing and these are exciting milestones. I’m pleased for all of them that they have toddlers (bizarrely I have a toddler, but she doesn’t toddle). I’m (at times) genuinely relieved I don’t have to run after a walker yet. But of course there’s a little ‘pang’ there. I’d love for Audrey to be running around with her friends. I’d love for her to purposefully grab the drum and hit it with conviction (rather than some tentative taps here and there). But at the same time, I feel… Ok. I feel… like Audrey’s slow pace and our expectations mean that every little new thing she does is so exciting.

The gap has widened and that’s a bit scary, but in many respects, it’s not as hard as I thought it would be.

Today I watched Audrey cuddle a teddy, hand it to the speech and language therapist (who would then have a cuddle and pass it back), cuddle it again and so on. I just sat there thinking “she’s so clever!”. In fact, there isn’t a day goes by where I don’t think “she’s so clever”. She amazes me everyday.

I have taken her to a music class these past two weeks and sat there, filled with pride. She just loves music so much and she dances so creatively and enthusiastically. I basically sit there wanting everyone to look at my daughter, because she is the greatest dancer.

We also go to a weekly special needs group (where she cuddled the teddy) and Audrey works on development. She achieves something new every week. She always makes me proud. This week, she finally made a choice. They always offer the kiddies two toys and make them choose – Audrey would always either shake her head and refuse or just sit there blankly. Finally, this week she selected the maracas over the sparkly stick and then boy oh boy did she shake those maracas!!

I still kind of have to pinch myself about all this… that baby that popped out as a complete surprise… all those worries… all the negative thoughts… she makes me so happy and so proud. And every day I tell her how much I love her and how clever she is. Amazing.

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Love love love

I just wanted to write a post listing some things that Audrey does that I don’t want to forget… Perhaps I won’t forget, I’ll probably bore her with tales of her Hoover cuddles for years, but just in case…

I love…

Audrey’s eyes. The beautiful shape, the way they smile when she smiles, her eyelashes (that she inherited from me!).

The way she taps my should with her hand when I’m carrying her.

The way she reaches up with both arms to be picked up.

The way she dances… It’s a sight to behold! Rocking, head banging, hand wiggling… She is going to classes as soon as she can stand!

Kissing her forehead and soft hair.

When I ask her for a kiss and she cups my face with both her hands, so she can give me a full-on slobbery number.

Her sneezes. So tiny.

The way she picks up blueberries and eats them whilst maintaining eye contact with me the whole time.

The way she signs “finished” with a couple of turning fists.

Peekaboo with her own hands – it will never fail to make me proud that she figured out how to do that.

The way she claps, smiles and makes a positive “uhh” noise when she’s proud of herself (usually when we’ve praised her for drinking her water!).

The way her nose changes shape with a certain cheeky smile.

The way she giggles when she sees us putting on the sling/getting our coats on (because she knows she’s going out).

Her feet wriggling with excitement when food is coming.

The cuteness of her bottom lip before she cries.

Hoover cuddles! (Audrey is a little scared of the vacuum cleaner and clings to you like her life depends on it whilst it’s noisily on).

How she smiles and dances when I sing for her – even for the silliest made up songs.

The way she brushes her own hair, then holds the brush out to brush mine!

And many more… But that will do for now! X

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Mummy forum rant

Mummy forums. Personally, I find them horrifying. Like the Daily Mail online comments section, but scarier.

When you throw a question out to a bunch of sleep-deprived/shell-shocked/in-need-of-adult-conversation hormonal ladies, what sort of responses do you expect to get? And yes, I do think that us mummies can provide each other with helpful advice and support, but I also think we can confuse one another with conflicting advice and viewpoints. I guess this is why I would choose to look at medical professional sites for health advice, ‘proper’ parenting websites for weaning/naps/milk etc advice and personal mummy blogs for inspiration/comfort. I would never ask a bunch of mummies in a chat room about whether or not I can give Audrey x amount of calpol or if it was weird that she was doing so-and-so.

And NEVER go there to discuss immunisations. Yikes.

The problem is, I am a member of more than one mummy group on Facebook and various things clutter my feed… Ted says; “Just leave the group or hide the posts” and of course he’s right, I should do that… But I can’t help keeping them so I can judge/get annoyed/laugh/and sometimes (rarely) get some useful advice.

I spend a lot of time saying “Don’t these women have friends?!” Or “Haven’t they heard of Google?!?” But I guess the truth is, no, some of them don’t have friends they can ask and yes, they probably could Google it, but then they wouldn’t have an interaction with other mummies and maybe they desperately need that.

I’ve been hugely lucky in that I have several friends from school who paved the way and had kids a few years ahead of me. So we got loads of clothes, a cot and things we’d never even heard of (bumbo!). Then we did NCT and met a great group of people and shared an amazing experience together. Plus Tallulah from NCT did all the reading so I didn’t have to! Then I had some semi-blind dates with friends of friends with babies. Then there’s the local T21 group, who organise pre-school meet-ups so Audrey can meet other babies with DS close to her age (or more importantly, I can meet their mummies). There were plenty of people to sit and drink coffee with (decaf whilst breastfeeding of course!) and dissect the nap routine and symptoms of this and that and developmental stuff…

But what if you didn’t have that? I can’t begrudge these women their only outlet for baby queries and support, can I? Even if they don’t know the difference between “mummy’s” and “mummies”? Even if they ask questions that could easily be answered by a quick Google or a glance at an instruction manual? Even if they start a discussion about grooming pubic hair??

I give in. If it riles me too much, I’ll block… But for now just listen out for me muttering, “F*¥#ing Google it!”.

The power of love

From the age of 4 to 16, I lived next door to a family who had a son with Down’s Syndrome. I would say the overall feeling I remember when coming into contact with him (his name was Wayne), was: fear. To me, he was a giant man-baby, who had large, rough, dry, twisted hands that he would want you to touch. I did not want to spend time with Wayne. His mother, Betty, was (still is) a friendly lady with a cheerful voice and she was devoted to her family. She had two sons, (the younger was married with children), but Wayne remained at home, as intellectually he was possibly at the stage of a 2 or 3 year old and he was still in nappies (he was in his 20s/30s).

Sometimes my mum would send me next door to pay Betty some ‘catalogue money’ (she ordered things for us through her catalogues, god this was the 80s/90s, but sounds like the dark ages!). I distinctly remember that Wayne was more often than not, sat with large headphones on, listening to “his music”. As I grew older, I felt sadness for Betty. Her husband died at some point during our time there and so she was alone caring for Wayne.

My mum is a one for repeating stories, so I’ve heard 100s of times how when Wayne was born, the doctors left him on the side and told Betty he was like jelly, that he wasn’t worth her bothering with… she should call an institution to take him away… and how she held him and told them they were wrong, he was her baby and she was keeping him. She loved him instantly and unconditionally. I always thought it was amazing that she dealt with this ‘burden’ so well. I recall she had someone come for respite care – so she could go to bingo or just have time to herself and it just seemed like such a rough deal. Rough that as an old woman (old to me), she still had a ‘child’ to look after.

I also heard stories of how she had taken him out of a bad nursery because they had just dumped him in a corner and not worked on his development at all. Of how she had been advised to have a second child quickly so that Wayne would have a sibling to learn from. And how he had exceeded expectations on many fronts – because doctors had said he would never walk and also that he would die at a very young age. Wayne actually died a few years ago and he was in his 50s. I suppose it wasn’t that long after that Audrey was born. Betty was keen to meet her and I was really keen for her to, too. It’s funny how you become part of this club. Someone new joins the club and you’re so excited to welcome them, but you know from their perspective it’s not a club they wanted to join… But it won’t be long before they’ll be the ones excited to welcome a new member.

When Betty did meet Audrey, she kept saying how she was ‘high functioning’ and definitely more advanced than Wayne at that age etc. It was very sweet of her and of course I’m pleased to hear it, but I realise how it doesn’t matter. Of course I don’t want Audrey to be in nappies in her 50s and I want her to be able to hold a grown up conversation – in fact I have very high expectations for her… but…. I also know that no matter what, we will love her and be happy having her around. She is amazing and a joy to us. Just as Wayne was to Betty. I know she was happy to have had him. Her life was not the burdened one I imagined from the outside.

So the next time you see a mother or father dealing with their child with special needs, don’t feel sorry for them. Don’t think they are burdened. Just remember, there is love there and love is a very powerful thing. Huey Lewis knew it. I know it. Now you do too.

Audrey 2

When we had Audrey, we didn’t know if we were having a boy or girl and we didn’t share our baby names with people. We were looking forward to the surprise.

Strangely, my mother, who was obsessed with us promising that we wouldn’t make a name up or have something American sounding that’s really a surname (Taylor, Page, Madison…), found Audrey to be a shock name choice.

My brother overheard her telling relatives on the phone (as she rang around to confirm Audrey’s arrival); “They chose the name Audrey as they love Audrey Hepburn and Vicky loves The Rocky Horror Picture Show so much” (!). Hilarious. Yes, she meant Little Shop of Horrors and, no that wasn’t really part of the naming process.

Anyway, this was post was drafted to announce a little “Audrey 2” in my tummy, but sadly it’s sad news instead.

A few weeks ago, at 10 weeks pregnant, we had a miscarriage. As I type that, it does feel strange to be sharing something so personal online, but the fact is, it happened and we’re ok.

When I lost my job, I was about 5 or 6 weeks pregnant and I was instantly worried about how we were going to cope financially and also how on earth I was going to apply for jobs knowing I only had 6 months worth of work before going off to have a baby. But we had to get on with things and the pregnancy was good news, so we couldn’t let redundancy overshadow this.

The timing was very similar to Audrey, her due date was 17th July, this baby’s was 2nd July. So like my pregnancy with Audrey, we planned to tell family at Christmas, with a toast to the new baby on Christmas Day. Sadly, this was not to be, but we were very lucky in that this happened to our second pregnancy, so we had Audrey around to keep us smiling. She made all the difference. And at 10 weeks, we weren’t too far along. It was devastating, we had started planning for Audrey 2, but it wasn’t quite as I had imagined. Not quite like the drama in the movies… for example, we got the bus to the hospital. Seems so silly now. The early pregnancy unit is closed on weekends, so we had to sit in A&E for an hour or so. It was… unpleasant.

We still hope to grow our family and would love for Audrey to be a big sister, but we recognise how fragile human life is and how lucky we are to already have a beautiful daughter in our lives.

Sorry for this depressing post. Belated Christmas wishes to you all and have a Happy 2015!

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Blessed

When Audrey was a newborn, I read other parents’ accounts of having a child with Down Syndrome and, well, I thought in some cases they were lying. Or at least kidding themselves by piling on the positivity.

“Our child is a blessing” or “we wouldn’t change anything about our child” or “he/she is simply perfect”. I thought come on, you would change the Down Syndrome! And you know they’re not perfect!

But guess what? They were just further down the path than us and now I know what they know, I’m all over this positivity and “blessedness”!

But let me be clear, Audrey isn’t a blessing to us because she has DS, she just plain and simple is a blessing. She’s our daughter, we made her and ok, something “different” happened in the making and she got an extra chromosome, but that’s just part of Audrey.

When I look at her, I am overwhelmed by how much I love her and how perfect she is for us, for our family. I genuinely wouldn’t change her. Yes, I want to wipe out health issues, prejudices, difficulties… But if we took away the DS, she wouldn’t be the same baby and we love this baby, just the way she is. She’s perfect. And yes, I know that really there is no such thing as perfect… In fact, as I said, when I read other families call their child with DS “perfect”, I felt a twinge, an uncomfortable stab… Thinking, c’mon, how can you use the word perfect?!?

But I get it now. How can anyone? What is perfection? Does it even exist?

Audrey isn’t really perfect. She had terrible reflux and used to puke all over us. Sometimes she gives wonderful long kisses; covering us in snot. Sometimes she wakes up at 5am. She pulls my hair. She dribbles a lot. She has rough patches on her thumbs from over-sucking.

But she is amazing. She fits into our family and brings us so much happiness. We are deeply in love with her and wouldn’t change her for the world.

So there. Gushy positive Down’s Syndrome family believes they are blessed. Because they are.

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Feminism

Feminism is trendy (or should that be trending?) right now.

I’ve read so much these passed couple of weeks; from a misogynistic Viner getting a TV series commission (and getting axed) to the internet trolls that attacked the people who commented on his misogyny… the wonderful celebs wearing the “This is what a feminist looks like” tee to the evil celebs wearing the “This is what a feminist looks like” tee (because it was made by an under-paid woman in a sweatshop).

This sort of attention on feminism interests me now more than ever because of Audrey. I consider what sort of world she will grow up in and what the future holds for her as a woman.

Historically for me, feminism was a dirty word. I always pictured Germain Greer, with a burning bra on a pitchfork, talking about banning something as harmless as page 3. I certainly never thought I would consider myself a feminist. Around the age of 15 I discovered that if you stopped wearing long skirts and DMs and switched to miniskirts and knee-high boots, boys noticed you. I am ashamed to say I played dumb in Design Technology so a boy would assist me with and thought nothing of it at the time. I purchased a wonderbra and pitched myself very much on the “feminine” not “feminist” side of the fence.

For years I thought sexism was a dated concept and that hey, we are all equal these days, so why are women still banging on about it? My first real “brush” with sexism was in a job I took in the early noughties. The MD was proper old school (paper rollerdex, a secretary made all calls for him,he returned from long lunches stinking of booze, drove home… you get the picture). I was there for around a year when someone left and we were recruiting for our office manager. As the stack of applicants arrived, the pile diminished into those requiring the lowest salary, but more significantly, women only. I was soon informed that the first thing he did for any admin jobs or in fact, the job I had, was limit to women only. They also told me to look at myself and the other females working there – were we all not quite similar? Did he have a type? For the technical jobs, he did the opposite and considered men only.

One day an error (purposely guided by the MD) occurred and I heard him apologising on the phone to the client, blaming “the girls” and dismissing it as our sloppiness. There was never any funny business with this man, but over time it became clear that he regarded the woman working there as “silly girls” and certainly respected his male colleagues much more.

So I realised there were still a few sexist dinosaurs out there, but still didn’t feel the need to rise up with my sisters and declare myself a feminist…

My interest in feminism now comes from Audrey and how she will experience life as a girl. We want her to feel equal (and let’s put aside her other struggles with equality due to DS), confident and as important as any boy.

One thing Ted and I constantly despair at, is the clothing on offer for baby girls. We have no problem with pink in moderation, but we do not think she needs to be dressed in a way that constantly screams “I’m a girl!”. The main issue we have with girls’ clothing and toys (and how is this still happening in this day and age?), is the pinkification of things to appeal to girls. They make pink versions of Superman outfits, they do a pink version of the (usually so yucky brown!) Gruffalo, girls t-shirts are littered with kittens and bows and butterflies and glitter… boys get dinosaurs and monsters and bears (much cooler), most of which escape tacky embellishments.

I’m curious as to who is in charge of the importance of girlification? Has the beast been created because that’s what the majority of buying parents want? Or is there a conspiracy to keep girls girly, flood them with pink early and they’ll never want to take the decent jobs? They’ll all want to be popstars and wags?

One thing I do know, is that I want to ensure Audrey is exposed to choices on that front. Yes, I know that in a few years she will probably be choosing the ugliest, pinkest, glitter-covered princess outfit in the shop, but isn’t that more reason not to cover her in it now? Feminism should be about choices. Women now have the choices and the opportunities to be whatever they want to be…

Let’s not forget, Audrey was a pirate (on pirates and princesses day) and a bat (on Halloween):

 

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Stuff and things 5

So, you may have seen from my last post that I recently lost my job. The company I worked for had been struggling for a while, but when it finally sank it was still a shock for those involved.

Audrey had been ill for about 3 weeks, it started with a cough and cold, progressed to sickness, the cough hung on and she was off milk and/or food most of the time. Smiles were at an all-time low. We only really felt like she came back to us just over a week ago, when the smiles and claps returned and her baby-babbles reached an all-time high. She chatters all day now.

Workmen are ripping down a balcony from the back of our building and fixing the front facade, so Audrey’s nap times are fraught with banging, drilling and men shouting!

Anyway, her being ill, my job of 8 years ending abruptly (with salary owed), men on scaffolding watching us in our dressing gowns… it’s been a rough ride recently.

Last week (thank goodness), my husband had the week off. We visited my mum and brother (Nanny and Uncle Graeme) on Sunday and Monday, then I had my hair re-brownified (in preparation for interviews and money saving). Tuesday Audrey was at nursery and Ted and I went to see Nightcrawler. How odd it was to be alone for lunch and then in the cinema all afternoon!

Wednesday my mother-in-law (Bibi) came over for lunch and Thursday was another nursery day so… Ted and I went to see Interstellar.

Friday we had lunch with NCT pals. But now the spending must stop and the job hunt must get serious…

Coffees consumed: at least 10
Burgers: 4
Milkshakes: 2
Pastries/cakey treats: 4
Fudge: too much
Beers: check with Ted
Audrey smiles: too many to record

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P.S. If anyone was paying attention when I teased Audrey having a modelling job… Sadly her photo wasn’t used in the end. But, if you’ve seen the Lidl wooden toy advert on TV this week… You’ll catch a glimpse of her friends Huxley and Zakir!