So there I was on Sunday, spending 4 bloody hours, preparing my statement and uploading invoices to NDIS for this stupid tribunal, and all I could think was, this time could have been much better spent just being a parent to my kids. The fact that I have to go through this process, prove that Ella is ‘disabled enough’ to receive support that will benefit her and help her achieve her goals is both dehumanising for her, and stressful for me.
It blows my mind that Ella is 10! 10 years of crying at the sight of a birthday cake (but quickly cheering up when she gets to eat the cake!)10 years ago tomorrow you made me a mother, and not long after that, your diagnosis made me grow up. It was me and you against… Continue reading TEN!!
Since before he was born, I knew Reece was going to 'overtake' Ella at some point. I did kind of think it would happen all at once, but to be honest it wasn't like that at all. No lightbulb moment, just gradual things.
I had a zoom meeting with this surgeon, and if I could see her today, I would probably hug her! without much fuss at all, she has single handedly fixed so many of Ella's issues after 9 years of complaining.
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.
When you made that comment to your friend as you walked passed. "Someone needs some disclipine" I looked up and only saw your back. "SHE'S GOT SENSORY ISSUES" I wanted to shout. But didn't. I had bigger things to worry about.
This morning I cried, quite literally, over spilled milk. Because I'm tired. And here's why that's ok.
I think about the phrase the day's are long, but the years a short, and while I most certainly agree, it feels like the last 9 years have flown by! But when I really think about it... well...
Poop... not something I enjoy dealing with to be honest, and as luck would have it Ella has had poop issues for her entire life. And she also has a tendency for 'smearing'. If you don't know what it is, it could be sensory seeking or behavioural, and its basically smearing poop. Its uncomfortable. Its… Continue reading Let’s talk about poop