There is something about taking a moment to be still. To meditate with a coffee (it’s a thing…or maybe I’ll make it a thing!). The warmth of the cup in my hands; the sweet caffeine feeding my addiction; taking time to sit and savour it. Usually it would be an opportunity to relax except I did all of this so my head didn’t explode with a stress induced eruption of frustration and bile.
The disability sector is full of great people…humans living their best lives. Unfortunately, we work within a system that often sucks. (Not eloquent I know but…). Last Thursday had the potential to be wonderful, as every day does. But it wasn’t. Bureaucratic bull won and my girl lost. Not forever…oh no. The fight will continue. It will. But I am weary. The battle is long, constant and draining. The adversary is steadfast and tied to their own rules. Did I mention that I am weary?
The next morning I picked up my weapons prepared to battle again. Instead I paused to called the one person who crossed no mans land for us and thank her. I also voiced frustration at the processes that fell apart and the person I believe dropped the ball. She listened. She agreed it was unacceptable. She worked hard to find a suitable solution. She is not the enemy but an empathetic human working within constraints set by people way above ground level. She still has faith in the scheme she is implementing so I shall try to as well.
I took a couple of days to regroup. The battle plan needed review to head into the next week fully armed but hoping for peace. It seems absurd that an war analogy is so fitting. In an ideal world we would hope our children could access the necessities of life even if we, as parents, were unable to provide them at times. This utopia would see us all looking after each other. Human dignity would be held in high esteem. Our girl has brought many fine people into our lives who aspire to all that is just and good. People who have blessed us with their friendship and generosity. So the battle continues but with the realisation that even the system is not the enemy. It is put in place to aim for fairness and hope for equality. It may not be perfect and the stress of working within in is certainly taking it’s toll but we live in a place of hope.
Funding. There, I said it. The very word can invoke nervous laughter from funding applications past. The NDIS promises a better system but the transition over to it is proving to be a quite a process. Change isn’t easy. But it’s ok, I have a solution. Santa.
Think about it. He has plenty of workers with centuries of experience, He has a fail proof delivery system that always…yes always…delivers on time. There may have to be some adjustments to the only-once-a-year thing but it’s doable. And, possibly the best bit, there would be hardly any paperwork. Simply one letter of wishes politely written with a promise to eat your veggies and tidy your room.
No more would we have to think of five year goals for our severely disabled two year old just to get a wheelchair. No longer shall we impart all but our knicker size with not so much as a coffee date first. No more forms! A carrot might be a nice incentive though…plus some cookies and milk. And painting the darkest picture of your child on their worst day to be deserving? No way. He’s a jolly old fellow. A “Santa please stop here” sign should do the trick. There would be no more wondering how long your teenager can fit in a wheelchair she’s had for four years…Santa would give a delivery date and stick to it. Oh the possibilities. New AFOs with little sleigh bells. A walker lit up with Rudolph style nose. A shower chair as soft as Santa’s hat.
So we’d better watch out, we won’t have to cry, Santa Claus is coming right now! What are you wishing for??
Imagine shoes that constrict your feet squeezing your pinky toe so it’s nail scrapes the skin of it’s neighbour. Sorry, you cant take them off at the end of a long afternoon…they must stay on until bedtime. Oh, and I forgot to mention that you will have to apply for new shoes by filling in extensive forms and be at the mercy of someone else’s decision. By the way….new shoes will be $14,000. Happy? No. Really? Are you not grateful that there is a special scheme (at the moment) so that the only outlay will be $400? Time to grab a damp cloth, wipe off the dripping sarcasm and do a happy dance in…wait for it…NEW shoes!. Well, wheels but effectively the same for a little poppet in a wheelchair. Navigating a process that began over nine months ago has been exhausting…that’s right, as long and tiring as growing a whole person!
Today was delivery day and the chicks rocked it! A little red-haired girl in an exhausted, grotty wheelchair was surrounded by a mobility expert, a rehab engineer, a physiotherapist and me (arguably a little bit of all of these). With a tussle of Allen keys (said rehab engineer could construct an Ikea village single-handed!) and a lot of hands on a tricky, wriggly girl a Mullholland GGS was adjusted to fit. Other staff popped past and the girl proudly received compliments. Apart from getting used to sitting properly again after slouching awkwardly for so long, she is happy. And so am I.
Yesterday it was as if the old chair knew it’s time was nearly over. Pushing it, and her, out of school along a flat, straight corridor was painful…for me, and her. A right hand turn involved hyperflexing my right arm and kicking a wheel with my left foot! A strange rattle came from…somewhere. When I grabbed the wheel to see if it was rubbing it moved, not round and round but sideways. Walking any faster than a snail created wobble in the front, left wheel that only resolved after coming to a complete stop then starting again. It had been quite some time between high pressure washes so to look under the chair was to risk ones lunch. Without sharing too much detail, tube feed leaks, reflux juices, fluff, dirt and long strands of red hair are not a pretty mix.
Many walks, races and four-wheel adventures on dirt tracks have been had. Countless strap downs in the car and bus, a flight and even a boat ride. It has worked hard and served her well so it is with thanks and joy that we say bye. With relief we say welcome new purple chair for no one should have to wear ill-fitting shoes for that long. So if you see us coming wave hello and you may want to get out of the way…it’s so much taller (and I may be a bit short) that with the hood on I cant actually see where we are going. Weeeeeeeeeee!