I’m writing this honestly not knowing if I’ll ever have the guts to post it, I know there’ll be some that disagree with it.
**I’m editing to add this here, because as expected this post has rubbed some people the wrong way. – I have never tried to change Ella, nor would I ever try to change her. I fully accept her and love her for who she is, and I know that can’t be changed. This post was born out of frustration, wishing her life was easier for her.
There’s a saying that special needs parents say all the time –
‘I wouldn’t change them for the world’
and that’s great for them, if it’s true.
But for me, I would change things for her, in a second, if I could!
I know that makes me sound like a horrible person But let me try to explain.
Keep in mind I’m writing this of the back a bad week.
Ella has been sick. It’s just a common cold, but of course nothing is common with Ella and cri du chat! 3 times she woke up and vomited all through her bed. When Ella’s got a chesty cough, she can’t cough very well and it causes her to vomit. Often. And if it’s not vomit, it’s snot. All through her hair, which is a nightmare because she hates getting her hair washed, or brushed.
Seeing your 7 year old so miserable, and crying because she doesn’t understand why she feels miserable. Not knowing what she wants or how to feel better. Not eating. I say it’s not too bad but sometimes it’s horrible. She cried for 45 minutes because she signed to have a bath but when I ran it for her she had a meltdown. I still don’t know why, she got in eventually and was fine. I’m sure there was something I was missing but with communication being so hard for Ella I’ll never know. And not knowing how or being able to help her is horrible.
Plus today we had an appointment that was an hour’s drive away that was cancelled, and they didn’t let me know. So that’s 2 hours in a car, with 2 sick kids, for no reason! So I’m completely fed up.
But I digress.
The point is our life isn’t easy, during pregnancy the most common thing a woman says is as long as it’s healthy, and why not? Who doesn’t want their baby to be healthy, who would choose for things to be harder.
This doesn’t mean I don’t love Ella just as she is, of course I do!
I love Ella more than myself. She is amazing, determined, cheeky, funny, strong and she makes me laugh every single day.
I would do anything, sacrifice anything for her, and I would do everything in my power to help her to be her best self.
But Ella’s life hasn’t been easy either. From a tiny baby being pricked and prodded for blood tests and not being able to drink from me or a bottle. As she’s grown, Nothing has come easily for her, she had to work so hard to achieve everything. There’s been tears, tantrums, pain, fear, medical procedures, surgery all at an age where she doesn’t understand why it’s happening.
And now that she’s older, I can see she’s starting to realise she’s different, I see the look of confusion on her face around her peers sometimes and it’s only going to get worse.
It breaks my heart to think one day she won’t like herself, or who she is, because she’s different. I don’t want that for her.
Not to mention the ways she’s been treated by her peers, by younger kids and even by adults. The ways she’s been dismissed or ignored. Her perfect face dropping when children run away from her – And again, that will continue as she gets older, possibly even get worse.
So yes, I would take all that away for her in a heartbeat if I could.
And really, what parent wouldn’t want their kid to have a happy, easy life? What parent wouldn’t want to take away anything that causes their kid heartache or pain?
At the end of the day, I know I can’t change her, and I accept her for the amazing person she is. Instead, I’m trying to my part to change the world, to shed light on how people can make things easier for her and people like her.