We have just (well it’s been a couple of weeks now) clawed our way out of a dark time of illness. Ugh.
Audrey and I had a flu bug, one that really hit her hard. It was difficult to imagine us getting back to ‘normal’! Lethargy, lack of appetite, coughing, snottiness… But worst of all: no smiles. For 2 weeks. But it felt like forever.
But here we are on the other side and wow, has she come out of the darkness and into the light. It’s been amazing, Audrey’s signing has really progressed and her bum shuffling has gone from accidental circling movement to definitely moving forward purpose.
The signing means we feel like we’re having proper conversations with her and the movement, well that’s just terrifying! Our flat is far from baby proof.
I’m still on the job hunt but I don’t really mind as I get to spend more time with Audrey. Easter is approaching and we will have some family time and who knows… maybe Audrey will taste a little bit of chocolate if she’s lucky.
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.
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 😦