Since Nicola’s birth, I have found that in the moments that I need the reassurance and comfort most, it comes. Usually from the strangest of places, but it comes. When we first got her diagnosis, I was sitting at my computer one night, trying not to cry as I tried to write my first introduction to the support group mailing list… and the mail icon appeared on my screen telling me that there were new items in my inbox. One of them was one of those random spam letters. Most people with email know the ones I mean… they have a random convergence of bizarre words and quotes amongst them which are supposed to get them through SPAM filters?
Well, this one appeared and the first line read; "I will love the light for it shows me the way. Yet I will endure the darkness for it shows me the stars..."
That has been something of a mantra for me since I started on this journey. I love the light, it shows me where I am going and where I have been… but in the darkness there is a beauty that you can’t see in the light. Sometimes you need to look a little harder to find it… but it’s there. Maybe it’s in the form of an unexpected friendship, or a once in a life time opportunity, or a trip, or something. It might be taken under the cloak of darkness, but there is beauty there if you look for it.
But, on the flip side… sometimes the light is just downright harsh and you find yourself wishing for the cover of darkness to shield you from the things that you don’t want to see.
Like just how unfair and how unjust this life can be sometimes.
Our most recent endeavour has been to try and source funding to buy Nicola a wheelchair and a standing frame.
Well… seriously… with how difficult it has been, you would think I have been asking to have the moon repainted to purple!
Weeks of phone calls and appointments and talking to people until I’m blue in the face… explaining the same story over and over and over, until it gets to the point that you just want to carry around a voice recording and press play.
But where I’m really starting to fail in understanding is the way that funding is allocated.
See, to me, in a utopian society, it would be simple. Funds for services/equipment/needs would be allocated on a ‘needs basis’. It would make it really simple. If you have a genuine need for a certain piece of equipment or a certain service, you would say “I need this.”
Then they would look at the justification, nod in agreement and say, “Yes, you need that. Here is the funding to cover it.”
Of course, I understand that it wouldn’t cover every need, but rather on a ‘greatest need’ basis.
Which is why I struggle so much to understand how it is that certain individuals with widely known conditions are able to get funding for items like iPads, while other individuals with differing conditions, struggle to get even basic access to funding for life essential items, like a wheelchair.
I really, simply, just don’t get it.
It’s almost like the popular kids are getting the cool stuff, while the rest of them are begging for the dregs that are left over.
I guess it’s just another way to prove that we don’t live in a utopian society, but rather a dysfunctional capitalist society. S/he who has the dollar has the power.
And this is so painfully and abundantly clear in our medical system. It truly is user pays system for anything that comes even close to resembling quality of service.
The bleached blonde barbie up the street with more dollars than sense can go book herself in for a new set of boobs or a new nose, or hell, even longer legs! She can get it done as early as next week if she pays enough for it…
All the while, sick, frail, disabled and elderly are suffering and even dying from lack of access to proper medical care. Waitlists are horrendously long, services are inaccessible and support is almost unheard of… and politicians really just don’t care. And it’s something that will never change.
So yes… sometimes the light isn’t all it’s cracked up to be. The light can make the days seem impossible to deal with… can make targets seem impossible to reach… can make everything seem that much harder to deal with, that much more isolating and that much more lonely… and makes it seem even more apparent that there are very, very few people in the disability services sector, especially those creating the red tap who possess an iota of common sense or understanding!
So that’s my whinge for the moment. But I just need to remember, that it doesn’t really matter. In the grand scheme of things, it’s just a little setback and it doesn’t really change that much. We will accomplish what we set out to achieve because we are determined and we will get what we need because we have to. That doesn’t change because a couple of politicians somewhere are idiots. Sure, it makes it harder, but it doesn’t change anything.
We will succeed because we our daughter depends on us.