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.
This morning I cried, quite literally, over spilled milk. Because I'm tired. And here's why that's ok.
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.