Do you have any idea what you’re doing? I mean really, any idea? When Ella first became a participant if NDIS I admit, I thought it was great! I was the first to say how lucky we are to be able to get funding for Ella to have her therapies. So what happened?You slashed her… Continue reading An Open Letter to the NDIA
My sweet girl, you are growing in front of my eyes.and I'm scared. I'm so bloody scared.I'm not scared of the things that most parents worry about, I'm not scared of first dates or moving out.I'm not worried about whether you'll make good choices or get a good job.I'm not afraid of if you'll get… Continue reading Fear
I felt for her, I felt every word she said I felt it. The crushing loneliness, the feeling that no one understood, hiding bruises and bite marks from the latest meltdown. The isolation, not being able to go the the park and just sit and watch like other mothers do. Tiny things building up and getting on her nerves - like still brushing the teeth of an 14 year old, and most of all the fear of the future. Who is going to look after my child when she's gone. Who is going to understand how to handle these outbursts. In the end she did the unspeakable - the unthinkable. I put the book down and cried my eyes out. What an utterly horrible and heart-breaking story to read.
It was my birthday, 12/12 - BIG 35! I told joel I want a special birthday this year, a full day to myself to relax, drink wine, bake, have a bath, watch movies. I was going to jam pack that day with ME TIME!
10am - I was baking scones when the phone rang. Ella's school number popped up on the screen. I hate to admit it but inwardly I groaned... I had a full day planned!!
"Ella's had a fall and chipped a tooth"
I told Joel I'd be back in an hour (Ella's school is 40ks away, about half hours drive) gave Reece a wave and off I went on what would turn out to be one of the worst days ever.
But there I was in that room, at 3:30am, instead of sleeping I sat next to Ella in that very same spot and marveled.
I marveled at the room I was in, the same walls I stared at blankly for hours on end while my mind raced just 8 years ago.
and I thought about when I was here last. And who I was then.
The girl that doesn't exist
And now, as I sit to write this down, they've finished their snack and are happily playing. Reece quietly doing the shape sorter that Ella still struggles with, and Ella, playing with a stuffed toy and a car thing that Reece has grown out of and it clicks.
"She's so far behind"
Ella is turning 8, and today I had an epiphany I wanted to share. Most parents have a certain sadness about their children growing up, it just happens so fast! almost like you turn around and another year has past, you look back on photos and realise your baby, is a baby no more -… Continue reading Growing Older, Not Up
I looked at her perfectly round face, and her beautiful nose, with its wide bridge, her eyes, set wider apart. I looked closer at the folds in the corners of her eyes, and I looked at her cute little ear tag, I noticed her tightly held fists. I thought about all the people that commented on her cry, the woman that poked her head into Ella's pram when she was just new baby exclaiming "oh, it sounds like you have a cat in there!" Genuinely surprised to see it was my baby instead. All the jokes about how I spent too much time with my cat while I was pregnant because Ella sounds like him.
This medical book, written long before Ella was born, was describing her features perfectly. The book feeling like it weighs a million tonnes on my lap, to mach the weight I felt in my heart.
I don't have time for a breakdown right now, But I can feel it creeping up. We've had a rough couple of weeks, Ella's behaviour has been horrible. Full meltdowns at seemingly at everything for seemingly no reason. Toilet time? Meltdown Dinner? Meltdown Time to get dressed? Meltdown Breakfast? Meltdown It gets worse - She… Continue reading Keeping it Real
We almost made it.
2 weeks of school holidays, a week and a half in and it's been great!
Joel has been working long hours, and looking after the 2 kids has been hard on my own. I can't leave them alone together because Ella is rough with Reece still, so trips to the toilet have been a family occasion, and showering is out of the question until Joel gets home because Ella freaks out when I shower, and there's been a few moments but all in all its been good!
We've had beautiful weather, Ella has loved playing outside. I Even put together a playpen for Reece so I could weed the garden and hang out washing without worrying about Reece chasing the dog.
Ella didn't complain about me putting sunscreen on her (which can sometimes be a challenge), or meltdown when it was time to come in.
We went and fed the ducks near our house a couple of times, and even though Ella was scared of them, she took it like a champ and kept going back which is huge for her to overcome a fear like that!
A few appointments as always but they went off without a hitch.
I had a lovely visit from my grandma, who I don't get to see nearly often enough, and Ella was on her best behaviour.
We had A couple of visits from the neighbour and her young son played with Ella, which went so well, Ella was so happy afterwards.
And then today happened.
Today it all came crashing down.
We almost made it 2 weeks and I expected it, and I'm sure parents of 'typical' children have these days but I can't help but feel so disappointed.
I'm worn out, deflated and just done.
It was raining today, so I thought I'd let Ella run around in the rain, it was warm enough and I have let her before and she's always loved the experience!
But Not today
Complete and utter meltdown after less than 5 minutes because her clothes got wet, (I think) then she wouldn't get changed and the day went downhill from there.
She bit herself so hard it left a huge welts on her arm.
I had to keep her and Reece completely seperate all day because she just kept lashing out at him, trying to pinch, push, grab, hit.
She's been violent and lashed out towards me, Ive been slapped, pinched, my hair ripped out while trying to calm her, or stop her from hurting herself.
She's refused pretty much all food, all day.
I've watched my usually well natured girl throw things, bang her head on things, self harm, throw herself on the ground and just be violent and destructive -
And that's it. No well written, long-winded thought out post. Just this.
Word vomit, written on my phone while sitting on the toilet with the shower running. This is my life.
Hopefully tomorrow is a better day, we're off to Wangaratta to meet a new physio.
Now Ellas finally calmed down for a while with her iPad before bed, and I'm off to cry in the shower and wonder what the hell I could have done differently today.
Ugh. We almost bloody made it.