Every child has their own story, but little Emily Sayers’ story is particularly special. Here, Emily’s mother Claire shares her experiences raising her daughter and explains why her family needs the help of North Shore Mums now more than ever.
I’m a mum and I have a beautiful baby girl. Actually she’s not a baby any more, really, at 18 months. Her name is Emily.
When we meet people they usually first comment on Emily’s beauty or eyelashes and that’s not me being a proud mum – although of course I am – it’s me being honest, because she has large eyes and luscious lips and pale skin and blue eyes. She looks like a doll.
But then you can tell the subconscious is kicking in. The stranger has realised she isn’t engaging with them in the normal sense, smiling up adoringly, wanting their attention and making eye contact. She has barely moved her arms or hands and what little movement she has made is slight and a bit repetitive. It’s amazing what people’s minds can take in in mere seconds.
So I often jump in and first state ‘Em has some medical conditions’, ‘She can’t see well, but she can hear you’, or ‘Her eyesight’s not so good, but she does well despite it’. Sometimes I’ll even go straight into it and say ‘she has cerebral palsy’ or use the layman’s term, ‘brain damage’.
Why do I do this? Why not let them ask? Or not? Because I want people to know. I want to be an advocate for disability and specifically, cerebral palsy. God knows, I had no understanding before Emily, and I am still learning. Because no two kids with brain damage are the same. Even if the MRI looks the same one could be a quadriplegic with uncontrolled seizures, vision impairment, failure to thrive and feeding and sleeping difficulties like my beautiful girl – and another child might have weakness and difficulties but manage to sit, talk and walk. It’s an unknown.
The other reason is to protect myself, but mostly to protect Emily. From hearing, ‘What’s wrong with her?’ Or ‘How come she doesn’t…?’ Because although these questions are asked with no malice, I am conscious that while Em may never be verbal, she understands and comprehends more then even I can even presume. I don’t want her to associate herself with words like ‘wrong’. She knows she has challenges–multiple seizures a day give you a quick insight that life isn’t easy. But she has such grace and optimism in her beautiful little personality and perseveres and doesn’t complain (much) and I want to nurture and protect that.
I also want the best for her – because, let’s be honest, most people can either see, or sign or speak. Emily may not do any of these for certain, and although as her mother I will of course know her little idiosyncrasies and her sounds, her moods and just know her. Others won’t, and because I won’t be around 24/7 forever, there will be times when she will be left in the care of others and I want to dare to hope that she might even care for herself… however unlikely.
So we continue not to try and ‘fix’ Emily in the sense of changing who she is, because she is now just Emily, beautiful, strong, gentle little Emily. But to give her the best possible future by helping her to try and achieve things which will enable her to interact and achieve in the everyday world. To limit her pain and multiple medical issues and keep her quality of life at an optimum, including her interaction with others.
Thanks for taking the time to learn about our Emily – I think she is a little bit amazing. We have been fortunate to have an amazing network who have already embraced our Emily, supported her (and us) and love her unconditionally. Yes, we are lucky, but we still need to ask for help to aid Emily achieve all we have told you.
A fundraising ball will be held in Emily’s honour at Darling Harbour on Saturday 7 May, 2016 with the wonderful Jonesy & Amanda from WSFM as MC’s on the night. The aim is to raise a minimum $100,000 to support Emily through her first years. Click here to book tickets.