Poems & Lyrics that made you think…

I’m going to add to this from time to time, I posted my favourite poem a few days ago “Not Waving But Drowning” but I’ll use this page for little snippets that “get” how I feel:

This one is from “Call of the Wild” by Midge Ure:

“…and the magic that surrounds you, I will build a world around you..”

Love that,  I’d like that tattoo-ed around a circular picture of D but haven’t yet decided on the picture or position.

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This poem was introduced to me by another twitter user (4tinkerbelle) a couple of weeks ago, it’s too poignant to break it down, so it’s reproduced below in full:

Welcome to Holland

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 guidebooks 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 some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy a new guidebook. 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, 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.”

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

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.

Written by Emily Perl Kingsley

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A “funny face” – my experience of Bells Palsy…

I had Bells Palsy four years ago, those who didn’t know at the time, wouldn’t know now. At the time, it was frightening, frustrating and according to my children, a “funny face”.

We had gone out for a family meal the day before when I noticed that I had a slight ear ache and my bottom lip was tingling. I assumed that the ear ache was just an ear ache and the bottom lip was perhaps a reaction to something that I’d eaten – to me the lip felt swollen as well as tingling,

The next day, the ear ache (just in one ear) was far worse and every sound seemed to be amplified. Closing the oven door – for example – sounded like a great crescendo at the end of a classical music piece. Lip still tingling, speech now slurring. I had been meant to look after (a then) 14 month old baby – he was ill – and I remember talking on the phone to his parents thinking “I hope they don’t think I’m drunk”!

By the next day, drooping mouth and eye on the side with the ear ache and speech very affected. At first I panicked, thinking “stroke” but once I had checked that arms were not affected and done some research on the internet (good old Google), I had realised it was Bells Palsy. This was a Saturday and I was able to reassure Hubbie that a) it was not a stroke and b) it could wait until normal Doctor’s surgery on the Monday. I did not fancy spending the day in A&E with two young children!

Monday duly came and the doctor was very impressed that I could go in and say (albeit with a slur) that I thought I had Bells Palsy. He looked inside my affected ear and there were loads of little blisters apparently, caused by a virus. This had caused the nerves in the left hand side of my face to shut down.

Steriods prescribed and told to rest. Not easy with two young children and minded children. Drinking liquids had to be done through a straw. Eating was messy!! The only thing I found I could manage was mashed potato and peas.Sunglasses were worn on school runs and shopping trips.

There were no reassurances that it would go completely nor that it would not reoccur. Thankfully, after three weeks, the symptoms did go and I no longer had my “funny face”. My internal test that I was getting better was whether I could say “peppa pig” properly. I was so relieved when I could!

No further episodes have happened since then – I’m lucky – but when I’m tired I do notice that the affected eye is definitely more tired and that side of my face feels more tired. When that happens I say “peppa pig” out loud just to check all is ok.

Fun on the school run….

As any special needs parent will know, the school run can be full of challenges – to put it mildly. That if you can get your child to agree to go to school!

My school run has added complications in that I don’t drive and T and D go to separate schools. I won’t use school transport for D, I prefer to take her, you get valuable interaction with the staff and, to be honest, if she bolted whilst entering or leaving the school bus, I don’t have faith in the transport staff being able to catch her!

So, we have a 15 minute walk to T’s school – usual stares at D in her SN buggy – and once he’s dropped off, another 15 minutes to D’s school. If she’s unwilling, it can be a potential half hour of screaming, stomping on her buggy plate etc and that is BEFORE we’ve even got through the school doors!

I needed a solution and – for the sake of my sanity – I needed it fast….

Taa daa! Hello Mr iPad….

Now this isn’t solving it everyday but it is helping. I tell her every morning before we leave that if all goes well on the way to T’s school, she can use “the paddie” on the way to her school. I’ve now got a Griffin shatterproof case and I also attach a wrist link from the iPad to my wrist just in case anyone tried to take it.

“Cut the rope”, “Angry Birds” and “Sneezies” are favourites.

Obviously an iPad is mega expensive but it does seem to be helping her, I guess if we didn’t have that, we’d be using her DS or draining the battery on my phone.

We have traditionally had problems with D entering school on Thursdays & Fridays due to a different teacher – no problems either yesterday or today, I’m so proud of her (and relieved)!

Thanks Mr Jobs, may you RIP.