I’ve said many a time and again I’d like to reiterate, it is was it is , Ava wouldn’t be Ava if she didn’t have CHARGE syndrome. I’d never have learnt to love her big blue eyes that can literally tell me all I need to know about what she’s feeling.
I’d never have learnt the silent language we both speak to one another that NOONE understands.
I’d never have learnt to love the noises and movements she makes and each one I can pick out and distinguish between happiness, upset, pain, and joy. I have people ask me “why is she making that noise?” And I reply “because she’s excited” and I the. get a look as if to say are you sure?! … Yes. I can read my daughters expression in her eyes and sounds like no one else can.
To be honest one thing that’s stayed with me, and to this day I still struggle to accept, is that I won’t see Ava smile at me properly. I mean she has an “Ava” smile, and it’s equally as precious as any other Childs smile, but you’ve really got to look and know what you’re looking for. After all I’ve spent every waking minute near enough for 16 months watching this little miracle live!
I knew from the moment I got to look at her in her tiny incubator the day After I gave birth that something wasn’t right with how she looked in her face. I could not pin point it and it wasn’t until she was 9 weeks old that the doctors finally listened to me when I said she has facial palsy.
Now, most with CHARGE syndrome have unilateral palsy, but Ava had it bilaterally. It was like someone reached into my stomach and yanked my heart out… You mean to tell me that after 9 months of carrying this preciois cargo, emergency forceps, tears, life support and endless medication she won’t ever smile at me…
Maybe I focus too much on what she can’t do… But, if you’re a mum and you watch CBeebies, have you ever seen the programme “same smiles”? Yeah, it irritates the crap out of me but her catch phrase is something stupid like remember we are all the same, the same smile. I just want to burst into the screen and go no, no we are not, what about the children who CANT smile? The only programme I annoyingly approve of and like is Mr Tumble. He gets it!
I have constant reminders that she is not the same, how wrong am I for even sitting with her on my lap and turning the corners of her mouth up, just to see what she would look like, just to see how it feels seeing my tiny human smiling at me.
I did that once and it made me feel sick, why was I trying to imagine it? After all it wouldn’t be Ava would it if she could smile back at me.
I worry about her a lot, not in the sense of illness or, her condition, but more what society will make of her as she grows. She has the same expression, it never changes, she’s like a precious doll frozen in time.
She doesn’t look different to you or I at the moment, but she can’t move her face or her lips, will people stare? Comment? Will they be rude? Will she be strong enough to ignore? Will she even be psychologically able to understand that she’s different?
I hope to god that people can see her true beauty. The beauty I see, I want people to get to know her the way I do.
She’s so precious.
Kiss your children, hold them tightly and kiss those beautiful smiles. You’ll never realise how much a smile means to you unless your own child can’t express their joy as you enter their room in the morning ,or when they spot you at the end of the playground waiting to pick them up and run into your arms.