Man I am stressed. I’m talking head-spinning, hand-shaking, high-pitched-hysterical-style-laughter stressed. To add to the fun I was just served a weak coffee that is basically milk! I think they introduced the coffee to the milk from a large distance away. I feel the tears welling even when I pause for breath. (Not because of the coffee, though fair call!) This kid is my sunshine…the stuff around her is my thunder and rain.
At the moment, hours every day and well into the night are dedicated to coordination of her care. The NDIS planning meeting is tomorrow. It is long awaited and now desperately needed yet I feel so anxious and unprepared. So much about the ease of outcome for Missy is due to a person I have never met who needs to “get” the girl and her substantial and complex needs in a matter of hours. A big ask and a huge task to prepare for. (The coffee is improving…maybe I’m just getting used to it).
I hope I have thought of everything. I hope the planner sees the importance of our requests. I hope she understands the complexity of someone like our girl. I hope she sees a kid who wants to live her life well, as she chooses and just wants sufficient support to do just that. I hope she understands that I want and need to be a mum and take a step back from being a carer to save my body and increasingly fragile mind. I hope she hears us.
Hope. Stress. Love. The greatest of these is love. It’s what drives me. Well that and proving people wrong…I love a bit of that action. The meeting tomorrow will probably be emotional and raw. It will definitely be exhausting. Please…please let it be worthwhile. Sigh.
Coffee is done. Not bad in the end. Now to the chemist and supermarket…yes both for her. Even when a respite carer is at home with her I’m still “on”. Still working. This is the last shift for a week as funds are so very low. Please let this new scheme work for our girl…and fast.
I scared myself yesterday. It was the first day of school after holidays and I struggled. Well, “struggled” is an understatement. My back was so painful that I doubted my ability to get Missy dressed and ready for school. I did it…but groaning and teary. Parenthood is a full time job which slowly tapers down as our children grow and become independent. Being a carer-parent though is full time…all the time…with the same level of care as a baby on a much larger person. So there is great fear around not being able to do my job….and I know I’m not on my own there.
According to Carer’s Victoria statistics, carers are 40% more likely to have a chronic health condition. One of the most common of these is back issues. As a carer of a child with severe disabilities my hope, and all that I work for, is for my child to thrive and grow. So it is a cruel irony that being successful makes my job more difficult. For me the physical strain of lifting and changing and bending to tube feed and…well, you know, all of that stuff…exacerbates an existing back condition. For many parents I know caring has created back damage.
So, what is the answer? I don’t have one. Some suggestions from therapy types would be to use a hoist to lift, to be body aware with every movement and use appropriate equipment and to take time out to rest and refresh. All great ideas. But this is my kid. I am supposed to care for her. And all of these have a cost. Equipment and disability support workers aren’t free. Access to fair and equitable funding is imperative for families continuing to care so the full implementation of the NDIS is essential. Apart from that I, and all of you fabulous carers will continue to look after our babies big and small because that’s what we do! It may involve popping a bit of pain relief every now and then and it will mean tears occasionally but I wouldn’t be doing anything else.
Information on carer support in Victoria is available here…