Friday, May 1, 2009

Ch-ch-ch-changes!

Yesterday was a big day. Physically and mentally.

Josh and I went shopping. Needed to buy Kayla and Kane new sneakers, and Melie's birthday is on Sunday. And, as usual, there's always groceries to buy...

I don't have the disability parking tag yet, but even if I did, I still need to consider where exactly I should park. (I should also mention here that I found my license! Or rather, John handed it back to me; he borrowed it for when he was going to the RTA regarding the disability parking tags, which I'd forgotten!). When I am financially able to purchase a new car, I'd probably choose one with wheelchair access from the rear of the car; at the moment, we put Josh in, and get him out, through the normal passenger side door. No easy feat, with all that balancing, and the height of the car, and the general positioning of Josh. So, yesterday, for my first expedition, I parked in a space that was "open" on the passenger side. I had to watch for cars that occasionally went that way, and there was a pillar to contend with, but otherwise it was a reasonable spot. So, ten minutes to get Josh out, and the pram loaded up (Josh, suction unit, care bag, my handbag), wasn't too bad...

Browsing the shops also wasn't too bad, I guess. I had to stop every now and then to wipe Joshy's mouth after a cough, and tried not to look at other people looking at my son, wondering what they were thinking. We have to do "something" for Josh every two hours, so at 12pm, I whisked us away to the newly refurbished parents room, tucked us away in a private cubicle, and gave Josh his antibiotics, and did his eye care. And dreamed of a cappuccino.

Afterwards, while making our way to Woolworth's for groceries, I realised that I had no where to put any groceries, let alone a free place to hang a shopping basket from, so we made a detour down to the car to unload the shoes I'd bought (for Kayla and Kane), Melie's pressy, and some other bits.

As soon as I walked in to Woolies, I saw a friend (school mum/work), she got teary and that started me. Man! I wanted to just crumble in a heap and let free the river of tears, and have the wash carry me away.

Clearly, I will need to be even more organised when it comes to food, and meal planning. I had to get help to carry items to the car. I'll need to either shop on-line, or shop (planning well in advance) when John can care for Josh. Icky as it sounds, you don't realise until you're in this position, all the "stuff" that comes with looking after someone with a disability (severe or otherwise). I had to suction Josh in the lolly aisle. I tried to be as discreet as I could, but hey, you gotta do what you gotta do. I also had to be aware of the time that Josh was in the stroller; no more than two hours in the one place or position. (The air mattress for his bed, (when it comes) is different).

Even just the order of things when it comes to putting Josh back in the car is challenging. My car doesn't have central locking, and the key doesn't work in the passenger door. I wheeled Josh to the drivers side while I unlocked the door, while leaving the groceries at the rear of the car. I wheeled him back to the passenger side, and then decided to put my bag in the front first, so at least I wasn't tempting anyone (who was in that frame of mind) to pinch it from me. Next, do I put the suction unit in or Josh? I decided on the unit, because if I needed to suction Josh while putting him in his seat and it was still in the bag on the rear of the stroller, it would take too long to unhook the bag, and get the hose etc out. The bags of groceries had to be put in on the floor on either side of Josh, because even though the stroller does collapse (somewhat), we leave it put together for convenience, and it takes up almost all the room in the back of my 4WD. Bla bla bla.

Anyway, the main thing is, we did it, and we can do it again. And even though I dont have to like, and will never like this situation, I know that the next time, and each time after that, will be easier as we get into a routine and become more organised.

6 comments:

Anonymous said...

Good on you Wendy, glad you both got to go out. It certainly is a juggling act and works up a sweat. I think you are amazing to have tackled that on your own. I love the new pics.

Liz and Ashleigh

Jac said...

Wendy, Well done - no matter what the disability you need to get out and so does Joshua - I only have 1/4 of the problems to deal with that you do but... it's all relative in your own little world I think.

I joined to follow your blog - keep strong, cry when you need to and just keep on loving your kids.

Jac

Samuel Morris Foundation said...

Hey Wendy and Josh,

That first trip is a bit of a mind blower, and good on you for getting out there and getting on with it. You guys are constantly in our thoughts!

Michael - Samuel Morris Foundation

Anonymous said...

Wendy...I'm so proud of you...it must of been hard...I was feeling exhausted just reading about your shopping expidition and I'm sure once you do it a couple of times...you won't even notice other people looking at you and Josh...they were probably admiring your strength anyway and those gorgeous big brown eyes of Joshy's....you will have it all down pat soon and certainly be really proud of yourself for even thinking of going anywhere on your own!!! Love you!!!! Ness

Permanently twenty three said...

Wendy you are amazing. And your boy is just so beautiful. I always think about you and am so happy to know you're getting out and about with Josh.

sam said...

hi wendy - sending you huge hugs - i can totally relate to the whole shopping with a suction pump & equipment thing - my niece had a tracheotomy for many years(10)& when we went out we would have to suction her repeatedly, it does make quite a noise & most people do stop & stare but let them - you have a beautiful boy & if they dont understand then thats their problem
i am sure like others have said shopping will become easier in time

take care chicky
Sam
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