The (Sometimes) Bizarre Order of Things...

OK... yet another mysterious blog post title for me to explain...

I've just had a phone call from the company that services the wheelchairs supplied by the NHS in my area... informing me that they have a cushion they want to deliver... is Monday between 8 and 3 ok? 

Now I am assuming several things having received this call...
  
1. That they mean 8am not 8pm (I am NOT waiting up until 3am! Well... not unless insomnia strikes... again...I am no stranger to insomnia...)   
  
2. That this means that the service has approved the quote by the wheelchair supplier that I chose to go with... and the wheelchair and ahem a few "extras" (like anti-tip, and tip help, and manually angle adjustable back) that myself and the assessor chose as being suitable, and indeed desirable (if not... hey lets push the boat out here... NECESSARY)  for me.

However... I am not doing a sitting down "happy dance" quite yet... as I know the chair has still to be ordered... made according to my specifications... and delivered... and so will be a month or so to come yet... Assuming that my assumptions are correct... 

Which means that I will have plenty of time to "road test" the cushion to go in it ;) 

Kinda similar to when the rucksack for my new laptop appeared to be going to be delivered about a month before the laptop... As it was... that was a slight misunderstanding... Fingers crossed I am not misunderstanding anything this time!

 

"That's not meat... that's fish!"

...OK... bizarre title right?... I can explain...

I've got a slow cooker on my kitchen work surface... and it's on... and there's meat in it... pork to be exact. With a sauce mix, and because it's pork... a couple of sliced up cooking apples... (ommm nommm nommm!) 

But it's been cooking away nicely since 9:30 this morning... so it was time to see if things were cooked enough... or if it needed to stay on a little while longer... So Adriana took a fork and speared a bit... My reaction to what came up on the fork... "That's not meat...that's fish!" 

So now you're feeling rather puzzled, maybe scratching your head... or maybe you know me off the internet... and are thinking "yup... she's flipped!"... Or maybe if you're in the third category you know me well enough to know that I have a weird speech difficulty that means that sometimes what my brain wants me to say... (in this case "apple") isn't what comes out of my mouth... (in this case I said "fish"... cue really bad joke: what do you call a fish with no eyes?  Fsh. BOOOOM BOOOM! a la Basil Brush) And yes... most people say that they have that issue too... and they don't have a cognitive/neurological disorder... But... when you HAVE a cognitive/neurological disorder things like this happen more often (sometimes a LOT more often) than if you simply are having a "run of the mill" bad day. 

I am even putting together my own "dictionary of ellie-ese" (although anyone else's unusual terms are welcome in it too :D) partly because I figure it will be a help to carers to understand what I am on about when I ask for "purple people eater" for breakfast (that's ellie-ese for porridge... and I'm as lost as you as to WHY)... partly because it's actually quite fun looking over some of the unique phrases we have for things :D 

At the end of the day... even if I have to resort to mime/a lot of pointing/describing a word that isn't coming out right/just going to where something is and bringing it to a carer... I can usually get across what I need to communicate... and that is the important thing :D

Conspiracy.... it's a conspiracy I tell you!

Not content with depriving me of my lovely warm snuggly bedlinen...Adriana has then gone on to bury my glasses under a pile of soggy towels! (She claimed she didn't know they were there... but we know better... don't we... ;) )

Was she trying to make sure that I can't SEE where all things snuggly and warm are??? So that she can ahem appropriate them???

Only time will tell.... 



 

There's nothing like...

...the feel of freshly washed and dried bedlinen... right against your cheeks... Oh... what??? (reverie is ahem.. interrupted)... What do you mean you want them back??? Oh... they're my bedsheets and you need to make my bed... plus they'd get a bit wet if I continued to hold them lovingly... as I'm having my hair washed in a few minutes...??? Oh... ok... then... you can have the bedlinen... (feeling of sadness at parting)... 

Thus, Adriana learnt a valuable lesson... Don't give me something that is lovely and snuggly and tactile... if you actually need to do something with it!  :D 

Can one ever have too many...

...Peeloffs??? 

 Yes... I know I said back on the 19th of May that I had organised my craft stash... Well... I had... to a very large degree... 

It's just that.. well... a bit like a chest of drawers... or a wardrobe... a craft-robe... or other craft storage unit can get a little muddled from time to time with things getting put in, taken out, new things getting put in approximately the right place... you get the picture...

And so... once in a while it is really quite good (...maybe absolutely necessary...!) to take the time to re-organise things in the proper boxes/shelves/compartments... 

So that is what I have been doing today with my peeloffs boxes in the one of my Craft-Robes... 

Oh and then with my embellishment drawer in my original (smaller) craft storage unit... which has now become 3 drawers... so I will have to have a slight re-organise of drawer order... so that they remain together...and I am not forever hunting for the correct drawer when I want an embellishment...

Maybe it is a fact of life that one is forever organising and re-organising... I suppose that as long as you don't get too caught up in organisation that you don't do anything else (I don't think that will ever happen to me lol - I organise to craft... I can't think of a day when I will ever craft so that I can organise LOL!)  then... c'est la vie!
 

Welcome to Holland by Emily Kingsley Perle

WELCOME TO HOLLAND

byEmily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.<p> </p>But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


"Welcome to Holland (Part 2)" by Emily Perl Kingsley

I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned.

I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger—the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time.

I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends.

Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad.

I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today? Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its' tulips, windmills and Rembrandts.

I have come to love Holland and call it Home.

I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.

Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!


OK... (this is me now... Ellie ... not Emily!) ... you may be thinking... why post something written about someone who has a child with a disability?  Surely it's not written from the right viewpoint?

But... in a way... it doesn't matter about the viewpoint that it was written from... either in part one or part two... if you are born with a disability or accquire a disability through illness or injury or have/develop a serious medical condition that is disabling... all these things  can mean that how you thought, or  HOPED your life would turn out... doesn't quite happen... But... you may just find that something just as wonderful happens instead! So, I think that Emily's writing can be viewed from that view point by ANYONE. 

 I landed in "Holland" in 2001... (or thereabouts)... and like Emily... it's taken me time to adjust... but like Emily... I've found unique riches in "Holland"... and people to be profoundly grateful for ; who help, support and sustain me... while I continue to explore my new life here... 

Cracked Pots

Following on from a conversation in church yesterday... a couple of thoughts (neither originally mine... one from the Bible, the other an email) 2 Corinthians 4:7 (New American Standard Bible) But we have this treasure in earthen vessels, so that the surpassing greatness of the power will be of God and not from ourselves;  An elderly woman had two large pots, each hung on the ends of a pole which she carried across her neck. One of the pots had a crack in it while the other pot was perfect and always delivered a full portion of water. At the end of the long walks from the stream to the house, the cracked pot arrived only half full. For a full two years this went on daily, with the woman bringing home only one and a half pots of water. Of course , the perfect pot was proud of its accomplishments. But the poor cracked pot was ashamed of its own imperfection, and miserable that it could only do half of what it had been made to do. After two years of what it perceived to be bitter failure, it spoke to the woman one day by the stream  'I am ashamed of myself, because this crack in my side causes water to leak out all the way back to your house.' The old woman smiled, 'Did you notice that there are flowers on your side of the path, but not on the other pot's side?  '   'That's because I have always known about your flaw, so I planted flower seeds on your side of the path, and every day while we walk back, you water them.' 'For two years I have been able to pick these beautiful flowers to decorate the table. Without you being just the way you are, there would not be this beauty to grace the house.' Each of us has our own unique flaw. But it's the cracks and flaws we each have that make our lives together so very interesting and rewarding.   You've just got to take each person for what they are and look for the good in them. So, to all of my crackpot friends, have a great day and remember to smell the flowers on your side of the path!