Christmas came early and it seems only fitting that Andrew tells the story:
The car has been at the engineering shop for 2 weeks. The lifter has landed on the roof but apparently the seat modifications aren’t completed. Like nearly everything in the disabled world; it is happening very slowly. I am getting pre-Christmas crankiness.
Andrew and I went to the shops today – in my car. The wheelchair lifting part was all good – when we’re together that’s my job and I manage it with reasonable ease. The getting in and out of the car without a fixed transfer board – slightly more tricky. Not to mention that my car is somewhat smaller in the door cavity than his – really not ideal at all.
Pickup of the car is scheduled for Wednesday. I have my fingers crossed for Wednesday. And my toes. And my legs. I’m crossing everything.
In the meantime I’ve started to stitch the wheel onto the quilt. My first attempt looked like a pizza. A blue and purple pizza but a pizza just the same.
My second attempt, I cheated. I used the wheelchair wheel and like a 3rd grader – traced it! Harder than you may think as the wheel is not perfectly flat.
Then when it came to the stitching I found that the top layer was all puffy. All those hand basting stitches to keep the batting, backing and top together weren’t holding it down enough. So, with some swearing under my breath, I set about unpicking 2mm satin stitching.
I dragged the quilt to the armchair – I may as well be comfy.
Licorice appeared. Licorice was persistent. We reached a compromise. She could sit on the piece of fabric resting on the footstool as long as I could hold on to the end I was still unpicking. Minutes later – Saffron wanted her share of the quilt. Nevermind that Licorice was already sitting on it; she just climbed up and wriggled her way in. The funny part was watching her slowly descend. It wasn’t a quilt – it was quick sand. For Saffron had decided to sit on the quilt but between the footstool and my on the armchair. Eventually I gathered up enough of the fabric and pushed her enough onto the footstool that she stopped sinking.
Of course I just had to take a photo.
The wheelchair may freak the cat out, they said. They may run from the wheelchair. It may be big and scary.
To that, codswallop say I!
Gesso is doing his usual and running away from me again. I go to pat him, approaching slowly and so he can see me coming. He runs away.
‘Hop in the wheelchair’ says Andrew.
I jump in. Gesso stops and looks.
Andrew prompts: ‘Give him the signal’.
I move the fingers on my hand like a quacking duck. (Andrew has been trying to teach Gesso that this signal means come. Teaching a deaf cat – good luck with that. A regular cat is bad enough at coming when called!)
To my surprise, this bundle of white fluff, runs back towards me. I pat his head. He is no longer terrified.
So it would seem that Andrew’s theory is right. Far from being scared of the wheelchair, as some feared he would be, he is afraid of bipeds! How strange I must seem – this tall creature that moves quickly through the house.
It’s been a tough couple of weeks catwise, what with losing chilli and now, since Tuesday, Saffron having acute cystitis. She’s been to the vet – TWICE – and is going back tomorrow. Third time lucky? She has improved ever so slightly (meaning less blood; still frequent – small – urination).
The upshot of all this is Saffron has been confined to the bathroom for the past few days. I’m sure that this freaks her out a little more, however, she is wee-ing (or at least attempting it) so frequently that I can’t trust her outside the bathroom.
Licorice is highly unimpressed as she too, has been calling the bathroom home for the past 4 days. (The girls don’t like separation and I have few other places to put a litter tray should I lock Licorice out of the bathroom). So I am left with one cat who squats frequently and one who is just plain grouchy. She lets me know of her displeasure at every possibly opportunity.
So it would seem there is one member of my furry flock left; is he grumble-free? Well, bipeds are most certainly ok with Pickle. As far as I know, his bathroom business is all in tact and he has the run of the house. So all in all, I think the ginger ninja is a happy camper. Here’s a photo I captured of him earlier this evening.
My text message conversation went something like this:
Me: “I refused some of my pay today.”
Andrew: “What??? Have you gone soft in the head?”
Me: “No. I’ve just seen the end of year forecast for work. We are facing a massive shortfall. We have over 300 deaf kids to help and I’ve just seen a letter from the state government saying we are only funded for 45.”
Andrew: “Oh. Got it now. Not soft in the head at all. As you were.”
This news comes around the same time that Andrew and I finally get to drop off the car to have the wheelchair lifter fitted. 6 months ago, I rang charities asking for help to fundraise for this vital equipment. One charity said if we could prove Andrew had his neuro-muscular condition before he was 18 then they could help… but there was a 2 year waiting list. Another told me how hard it was to get funding and then sent me information about a government scheme. The scheme was only for families and even if we had been eligible, it was a drop in the ocean compared to the real cost. I rang another charity – yes, we help with making vehicles accessible for wheelchairs – but only for children!
Despairing that our need didn’t seem to fit into anyone’s criteria, I didn’t know where to turn. I told my boss and my colleagues what was happening. They didn’t blink.
In the coming weeks, friends, colleagues and people who were brand new to the Organisation, and didn’t know me from a bar of soap rallied around. People gave up time after work and on the weekend. Some donated goods for the garage sale; others came to the fundraising dinner; a group of ‘cake bakers’ sprung into action; a sausage sizzle was organised along with a cheese stand. Many gave private donations. I was absolutely blown away.
Today, someone asked me how the Shepherd Centre was different to other services. It’s hard to answer – not being an employee, a recipient, or an observer of those other services. But I felt I could say one thing with confidence: it’s not in the Shepherd Centre spirit to turn people away. If help is desperately needed, help is given. The things people did for Andrew and I – on their own time – was consistent with what they do for our families. I admire their passion and dedication and think myself lucky to work with such a fantastic group of people.
My friends and colleagues at The Shepherd Centre supported Andrew and I in ways for which I can never thank them enough. Giving up a little of my pay was the least I could do right now.
If you are thinking about giving a donation to a charity this Christmas, please consider The Shepherd Centre. For more information see the following article:
Disclaimer: the above is my own personal opinion. I would also like to stress that all assistance provided to Andrew and myself was on people’s own time and independent of the Organisation.
How fitting that the Weekly Photo Challenge is ‘Thankful’. It’s been playing on my mind all week. What I am thankful for won’t be a surprise to many of you. It’s for 2 rather expensive pieces of metal! (For anyone who is new to my blog you can find the full story here).
Of course, I love these pieces of metal not for what they are but for what they will enable Andrew to do. The first arrived a little while ago – a wheelchair that was ‘lifter friendly’. (The only lifter that suited Andrew’s present chair was $14,000 by itself, so we opted for a new chair and a different lifter which combined was slightly less expensive).
This folding chair is also in colours matching the cats. Gesso white and Pickle orange. This was not deliberate. Indeed Andrew seemed quite miffed when I pointed it out.
The second hunk of metal – a wymo wheelchair lifter – is booked for fitting to the car on Friday. After 5 long months, it can’t come a moment too soon. More and more Andrew has been struggling to leave the house without a wheelchair assistant at either end. In the afternoons when he’s used up a lot of the energy he has, it’s much tougher and by evening it’s impossible.
But I don’t want this post to be about how hard it is. Rather, it should be a ‘hats off’, ‘glasses raised’ and overwhelmingly tight hug to all of you who helped us to raise the funds for the equipment. When I think about the generosity you have shown Andrew and I, well… I still get very teary. Help came from family, friends, colleagues and strangers. You sent messages of support that made us feel like this was achievable – and achieve it we all did. For that, I will always be thankful.
I can’t understand it! They both live in Redfern. They both frequent the park. They both have little bellies. Could it be the pig has more hair? The pig is more handsome?
I’m calling on all my friends to help end this injustice right now and like the Wheels on Wheels Project Page. At least help Andrew make it to triple figures and avoid the shame of being far less popular than a pig.
Can you imagine watching the person you love lose their ability to be independent?
I know some of you absolutely know what this is like.
After working in the disability sector for a while I know that much is done to show what people with disabilities can do. Slogans such as ‘don’t ‘dis’ my ability’ being a perfect example. People I know who have a disability often inspire me with their resilence, persistence and ingenuity.
Yet, some days there’s no pretty side. It’s just bloody hard.
Regular readers of my blog will know I’ve been dating Andrew for a couple of years now. Over the last couple of years I’ve watched as Andrew’s muscles have further wasted away. Things he could do two years ago, he absolutely can’t today. I remember about 18 months ago, Andrew and I attempted to ‘slow dance’. Looking back on it, how ridiculous were we? A guy who couldn’t walk unaided, cannot lift his feet properly, trying to slow dance. Andrew got himself to vertical. He held on to a table with one arm and to me with the other. We had the music on – candles too – but we didn’t actually move!
While slow dancing is clearly history, I’m not ready to let go of Andrew leaving the house independently just yet.
It’s hard to describe what Andrew goes through to get in and out of the car, so we took a video. Lately, it’s been getting harder and harder. Some days, Andrew just physically does not have the muscle strength to lift the wheelchair into the car. So he stays home. 40 is too young to be confined to the house!
The hardest thing is there are options out there, he just can’t afford them.
We’ve tried approaching charities for help with vehicle modifications. It’s been tough. I can understand why there are such high frustrations in the community of people living with disability. I got sick of being asked – ‘is it for your son?’
No. It’s my boyfriend.
‘Oh, we only help children.’
‘yes, we can help, but we have a 2 year waiting list.’
So, we are trying to raise the money ourselves. I’ve never attempted to raise money for anything before. While I have always worked for charities which rely on donations to keep going, I’ve never been the one calling charities asking for help.
We first looked at the Abiloader, which was going to cost at least $15,000. Now we have found a plan B, which is $8,500.
Please, watch the video and if you are moved by it, please help by making a donation and/or sharing it among your friends.
Donations of support can be made via: