I feel sick to my stomach and I have been dealing with waves of nausea since our pediatrician appointment. A few hours of good sleep without tossing and turning would be nothing short of amazing. Not feeling like I’m climbing a never ending mountain even more miraculous.


Today we had a meeting with an organisation about applying for the NDIS. For those not in the know, firstly, lucky you. Secondly, it’s a government scheme to empower the disabled with a yearly payment based on their needs, or more accurately, based on an annual care plan. The hour and a half appointment was basically questionnaire after questionnaire about Little Red. Oh, and signing our life away on government consent forms.

To be clear it wasn’t to actually apply to the NDIS. It was an application so that we can get approval to then apply for the NDIS. Yes you read that right. We were applying to apply. You still following?

The person we dealt with (K) was lovely, like most not for profit workers. She emailed later that afternoon, just like she said she would, advising me that we need to submit a medical test report with our application. The thing is, undertaking this particular test has been outstanding since our visit with the NICU Clinic back in March. Apparently there has been some internal “miscommunication” between departments at the local hospital and so LR has only recently got on the waiting list.

So, it’s inadvertent stress. We can’t do X because we’re waiting on Y. I have to stay on Y’s case otherwise LR will get lost in the overworked inadequacies of the public system.



Even though some of it is completely out of my control, I can’t help feeling that I’ve dropped the ball. I feel like whatever I do I’m always one step behind. Can we even get in front of this? Will it ever feel like I’ve done enough?

I’m scared the answer is no because enough can never be done for my baby girl. I can’t fix this, and, for want of a better way to say it, I can’t physically fix her. Today highlighted her ailments and potential lifelong issues. My normal optimism about all the things she can do (which is a lot) was replaced with a sad realisation of what she can’t do as well as her sibling and peers. I was forced to admit her physical struggles and all of the early intervention she has had and continues to need. When K said she was confident there would be no problem with our application, it was a mixture of relief and heartbreak. Is LR classed as disabled? (To clarify, I have nothing against people who are disabled, and it really doesn’t bother me if that is the case with my daughter. It just seems like such a strange and unfamiliar word to me today). Is she worse than what I’m letting myself believe? Am I being naive in thinking that my love for her is enough to see her through whatever it is we’re going through?

It’s pretty much been a sucker punch to the gut of a day. Like I’ve said before, we think LR is absolutely perfect and I don’t like the idea that an application seemingly to prove that she’s not is in the works. I guess logic is out the window tonight, especially while the tears flow.

K x


  1. When your head hurts because you’ve been banging it against a brick wall. Don’t give in get a f ing helmet and shoulder pads and knee protectors and rush that wall as many time as it take to knock it down. Little red depends on it. It’s good to cry, it’s good to get mad it clears the brain to help you think straight and gives you the strength to battle on. We all feel for l/red but we all have do do our best to give her as much love in her life as we can, after all she’s worth it! Love dad xxx

  2. It’s a frustrating means to an end, hopefully one that will benefit you all as a family. Anyway Katie were all disabled in some way, it just doesn’t always show. It’s just life xxx

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