When Miss Z was a baby and we first learned that she would have a life of medical challenges and special needs, I was deeply saddened because I believed she would live a life of isolation. I was afraid that no one would love her except those who ‘had to’ – in other words, QB and me, because we would love her based on maternal and paternal instinct, rather than because of who she was.
This feeling was compounded because it soon became apparent that she wasn’t going to be the kind of child with special needs that society can easily accept. If you base your opinion on what is popular with the media – including (but not limited to) social media – people are most sympathetic to kids with special needs if they are cute, cheerful or inspirational – the photo on Facebook of an adorable little girl with Down Syndrome in a cheerleading outfit or the human interest story on the news of a disabled child overcoming adversity. But Miss Z is none of these things.
She isn’t typically cute or cheerful. She is a remarkably beautiful little girl (complete strangers will come up to me and comment on her astonishingly long, dark eyelashes and big eyes), but she’s rarely seen as “cute” (at least not in the traditional, cutesie sense of the word). In fact as a baby she strongly resembled a grumpy old man. However, mostly, people don’t see her as cute for the same reason they don’t see her as cheerful – she rarely makes eye contact and even more rarely smiles. Her “social smile” (where she smiles AT someone) is reserved for only a very lucky few, and even then, only occasionally. If she encounters someone new, she won’t make eye contact or smile. And that not only makes people uncomfortable around her, but also makes her seem quite grumpy and antisocial, instead of cute and cheerful.
And, to be honest, she is grumpy. She doesn’t like not being able to move, or speak, or make her demands known. The fact her body doesn’t cooperate with her makes her grumpy.
She isn’t heroic. She doesn’t spend her day working to overcome her challenges. She spends her day trying to get her own way and do what she wants, rather than doing the beneficial, carefully designed therapy exercises that we want her to do. She doesn’t bravely accept the medical procedures forced upon her, she screams and thrashes and lets everyone know how much she hates it. Miss Z is not one who is overcoming her challenges with a brave smile on her face – instead she’s going to take everyone down screaming. And believe me, if you’re in the medical field, she wants to take you down. The last time a doctor tried to be kind to her, Miss Z pulled a blanket over her head and refused to look at her.
In other words, Miss Z will never be one of those sweet, smiling, inspirational children that so often appear on charity appeals, human interest stories or inspirational memes on Facebook. She definitely falls into the much harder, not quite sure what to do with her category.
Which is really a pity, because Miss Z is quite a character.
She is beautiful. She is hilariously funny. She has an iron will, that whilst doesn’t translate into inspirational acts of heroism in the traditional sense, it does mean that she gets her way – pretty much all the time. She knows her own mind and is very clear about her likes and dislikes. She craves human contact and gets frustrated if she’s left on her own too much – but at the same time cherishes her quiet time alone in her bed at night. She’s mischievous (just ask the dog). And she has a glare that can make the toughest person tremble in fear.
You can make her smile by patting her chest, back or bum. Tickling her feet annoys her, but tickling her cheek and lips helps soothe her (nurses always think I’m a bit odd when she’s upset because I put my hand over her mouth – it looks like I’m trying to shut her up, but in fact I’m giving her something to rub her mouth on). She enjoys when you lie down beside her on the floor and chat with her, using the same sounds and noises that she does. Her sister can cheer her up faster than anyone else, but she also gets cross that she often blocks the view of the television and gets bored being forced to watch her sister perform her latest dance routine (often in front of the tv). And she will do everything in her power to get cuddles – and to get you to hold her while she sleeps.
She likes listening to Abba, Beyonce and Katy Perry. She likes it when we all sing along to them (her included). Her favourite cartoons are Sofia the First and Doc McStuffins. Her favourite books are “Brown Bear, Brown Bear” by Eric Carle and the Slinky Malinky and Hairy Maclary series. I recently started to read her “Charlie and the Chocolate Factory” but she prefers Enid Blyton stories. She enjoys riding in the car (so long as there is music and we’re not stuck in traffic) or going for walks, but hates sitting in her stroller or carseat if she’s not moving.
She prefers the cat to the dog (yes, we bought the dog to be her companion, but that didn’t work out the way we’d planned), warm weather to cold, baths to showers, barefoot to shoes and the hanging “egg chair” to her hammock seat (yes, we also bought the hammock seat specially for her).
She has a talent for manipulating her care workers into holding her while she sleeps. In fact, she has a talent for manipulating EVERYONE into holding her while she sleeps.
She really, really likes to be held while she sleeps.
And this is only the tip of the iceberg – there is so much more to Miss Z than can be summed up in one blog post.
But most people don’t know any of this about her. She isn’t an easy child to get to know, especially if you aren’t used to being around children with special needs.
But there are a very select few who have gotten to know her – most often her carers, but also some friends, nurses, and teachers. And once they, too, love her.
Nothing brings me greater joy than to realise that someone appreciates her for who she is.
And even better, that group of people is growing.
After all, once you know her, you can’t help but love her.