Written Thursday 26 July

There are points in time where the immense pressure of dealing with our HeartKid’s (HK) condition and additional diagnoses (currently a rapidly growing list) is incredibly overwhelming.

I feel like I’m suffocating. It’s like I can’t take a deep breath. I can breathe, but not take a deep, lung-filling, space creating breath. I’m exhausted, frustrated and overwhelmed. And it’s not even a day of a hospital admission or cardiology check up. It’s just an everyday Thursday. It’s quite a nice day really, the sun is shining which in the middle of winter feels like a bonus. I could have gone to the beach for the day, taken a drive, taken our toddler to the playground or even Story Time at the library.

But you see this morning, I had a completely free morning so thought it would be a good chance to finally find out whether our HK is eligible for Australia’s new National Disability Insurance Scheme (NDIS). This whole program is targeted at individuals, families and kids with disability and/or complex medical needs. I don’t know if he is eligible or not, however his psychologist recommended we look into it. [Side note – she is an incredible wealth of information and support services that I wish like anything we’d known about 5 years ago - what a difference it could have made, to our whole family.] So, in a good head space after kicking a number of goals this week and wearing my brand new jumper which I’ve been eyeing off for weeks, off I trot.

Step One – I drop into our local Wellways office with my 20 month old in tow…yes, that was a stupid decision but that’s life, isn’t it? If the NDIS is to support families, they really should assume it’s going to be FAMILIES (aka people with young kids) trying to access information. I was told that Wellways is the service provider, but not the assessors. I need to go somewhere else first to see if our HK is eligible, before being able to go back to Wellways. They then coordinate his service delivery if he’s eligible. “Heads up, it’s a very long and time consuming process,” she lets me know. Great, just what I needed. Something else to occupy my time and no doubt more wads of paper to read and forms to fill out. I need to add, the lady I spoke to was lovely. I have absolutely no qualms with the people at the front end of these agencies, it’s the system where the issues lie (you’ll soon find out more about that).

Step Two – I take my toddler with me to the next office, where I’ve been told we can start talking about our HK’s eligibility and get the ball rolling. It’s all good – I’m armed with rice cakes (even chocolate coated ones to buy me extra time), dates, biscuits, dried apples, wipes and a nappy. With the 20 month old occupied with food, I’m told that as our HK is under the age of 7, we may need to contact the National Disability Insurance Agency (NDIA), not the NDIS. After the team member checks with a second person, it’s confirmed that Latrobe Community Health Service can’t actually help me as they don’t have the contract for Early Childhood Early Intervention (ECEI) services. Got your head around all of these acronyms? Good, cause I haven’t! I’m given a phone number and told I’ll need to transition our HK to LCHS if he is eligible for ECEI once he turns 7. We’ll need to go through a transition process from ECEI to NDIS at that point in time. Sounds like fun, doesn’t it?

At this point, I can literally feel the stress building inside me. It rises from down in my belly and slowly makes its way up to my throat. ‘This is why I avoid these things’ I think. ‘Why am I doing this on a good week? I should have done this on a bad week, not ruin a good one. Why does this have to be so difficult and draining? Why can’t they make it easier for parents like me who are maxed out and being challenged on so many fronts? Why is it that something which is supposed to help us, feels like it’s making things worse? Why am I doing this?’

It’s at this point when I feel like I could cry. It’s too hard. I’m not a crier, but moments like this are overwhelming and confronting. We’re no different from any other family, yet here I am trying to get my head around NDIS, NDIA and ECEI when other people are having fun at Story Time. This week, I’ve already had to arrange appointments with our HK’s cardiologist, Royal Children’s Hospital dental clinic, psychologist and behavioural optometrist, plus I’m still supposed to get a Chronic Disease Health Management Plan done with his GP. All this on top of finding out yesterday he most definitely does, in fact, have clinical anxiety and borderline clinical affective and pervasive developmental problems. That saying ‘special kids are given to special people’ is a load of rubbish. Please don’t say it to people, even when you’re trying to help. I’m just a normal person, not a special person, and this is too much.

Step Three – By this time, my 20 month old is completely over it so I head home (after grabbing a takeaway coffee and my toddler smashing a beautiful pot plant at one of our local cafés; we’re on a real winner today). With the toddler in bed for his day sleep, I call the number I was given for ECEI. "Sure, we’ll need to make an appointment for one of our team to give you a call back. You’ll need a least 30 minutes for the call but probably longer. When is a good time during the day?" Is this a joke?! ‘Yeah sure, just let me pull out my diary and see when it works around 3 kids, school and kinder drop offs, my own job, and a 20 month old who seems to cry EVERY SINGLE TIME I make a phone call,’ I think. Already on this ridiculous NDIS (or is it now ECEI?) process, I book in a call for tomorrow when, fingers crossed, my toddler will be asleep. Until then, I need to put together a list of all of our HK’s doctors, specialists and his ELC, along with their full contact details, just in case he is eligible.

Happy happy, joy joy, there goes my afternoon.