The door lock Saga.

Following being instructed by my Oncologist to ‘sort something out for Kerri’ and following some intense consultations with her social worker, it was decided by all concerned that the best plan was to look at Kerri living in a supported living house with three other tenants who have varying special needs. The only venue with a vacancy was fairly close to where she goes for day care services, and as an added bonus she knows one of the tenants already living there.

We visited to look around. The room that was chosen as her bedroom needed lot’s of work doing to it such as decorating to her taste, new carpet, new furniture etc, and she and I began saving like mad, not an easy task over the Christmas period! Slowly Kerri was introduced to the other tenants and support staff via various ‘tea visits’ and a sleepover which ended up being a complete shambles, where because she couldn’t lock her bedroom door from the inside in order for some privacy and to feel safe, she ended up spending the night sleeping in her friends bed!

So we obviously insisted on a ‘privacy lock’ being fitted to the door before she was prepared to sleep over again. Time went by and eventually a lock (actually an old toilet lock judging by the fact that it stated on the outside of the door ‘Vacant’ when unlocked and ‘Engaged’ when locked!).  Whilst up there delivering some bedding for her new bed, we tried the lock out just to make sure that Kerri could move the bolt on from her side at night.  All seemed well and although it was a trifle stiff to move, needing a lean against the door to fully lock, she managed to move the bolt fully home.  A sleepover was arranged for Tuesday of this week.  I envisaged no problems now that her bedroom was looking attractive and she could lock the door.

How wrong did that prove to be!  Apparently following tea and a bath, she decided to go and lay down on her bed for a nap. Of course this  entailed locking her door, when horrors of horrors, the knob on the bolt came off in her hand!  She was locked in!  Shouting out “Help!” to the staff soon brought assistance and they sent for the fire brigade to come and break down the door so that she could get out!   I could see it all in my minds eye, the fire truck lights ablazing screeching up outside, several burly firemen rushing in to rescue Kerri from her predicament!  And this is only her second sleep over!

Needless to say that a new lock has now been put on her bedroom door that seems much more suitable and really should have been installed in the first place. Where the joiner had got the previous one from I dread to think!  A job lot from demolished toilets?  To be honest with you all, I’ve actually been having nightmares about this blasted bedroom lock, and doing some internet homework (entailing scouring Amazon and also visiting our local Wicks) I found some really good one’s for just £10 and was actually tempted at one point to buy one and employ my own joiner to fit it to the door!

I laughed so much about this incident and my thoughts on how the support staff up there are going to have to adjust to my daughter and her needs (and frequent ‘incidents'!). The other residents have never asked for a ‘privacy lock’ to be fitted to their doors, she has insisted, she knows what she wants, she has demands and voices them in no uncertain terms (though she still uses me far too much as her spokesperson) but little do they know this is probably just the tip of the iceberg.  There will never be a dull moment, that I can promise!

Wonder what's next?

TG

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Another year over.

And for me, its been a very eventful one, where I have encountered many new experiences for the very first time. From journeying down a tube for an MRI scan, to having a major operation in a hospital I have never been in before, enduring chemotherapy and all that entails including making some new friends, ending with stabbing myself in the stomach daily with a needle following a blood clot and its been a very interesting year to say the least, and one that, although it had its moments, you will all understand I am sure when I say that I do not wish to repeat any of it again. During that time, my daughter has proved how resilient she really is, and also how she continues to demonstrate her ability to adapt to any situation no matter what.

I simply wouldn’t have coped with any of it without her by my side. She’s been my full time nurse, my companion, she’s been there to cheer me up during the darkest hours, and been strong enough to take the brunt of my moods when I’ve been down. Now I know why she was sent to me those thirty odd years ago when I asked him up there why, why me? when she was born, probably in exactly the same way as any parent does when the child they were expecting to receive hasn’t materialised, and they have received an entirely different child in its place.

And she is in her element when the tide is turned, when its her looking after me, calling the shots, being in charge and she is brilliant at it. I have always stated that had she not had learning difficulties or been saddled with the label ‘Down’s Syndrome’ that she would have gone into some kind of ‘caring’ role, as a nurse or some caring profession. Its in her nature to be caring, and she went above and beyond what many people  would have done whilst I was ill. She was ‘on duty’ twenty four seven at my side, and during that awful week that followed my return home after my operation, when (as it turned out) I had a septic infection, she became who she really is, a nurse nightingale, oblivious to her own needs and focusing only on mine.

TG

P.S  I’m sorry that I haven’t been blogging of late, but intend to return to my usual favourite pastime in the new year, when hopefully K and I can resume our gallivanting around the Yorkshire countryside on numerous adventures and quests, so back to normal! (I hope!)

Technorati Tags: year,chemo,daughter,nurse,downs syndrome

On the Mend.

For those of you who have been wondering why I have not been blogging of late, I had to go into Hospital for a major operation on the 31st January.  I expected to be on the mend after being discharged home on the 7th February, but unfortunately on my return home, I took a turn for the worse, and was quite ill for well over a week or so.  Quite how I would have coped without my lovely daughter I dread to think. She has been nursing me 24/7 throughout the whole time, sleeping next to me to be instantly on call with cleaning me up and I cannot praise her enough.

Her dedication and patience has been extraordinary, and has gone far beyond what anyone could expect a daughter to do when her mother is ill. When she was born, I can remember asking ( in my head) “ Why?” I now know the answer.  To give me 150% and more of her caring, her love and infinite patience. 

Of course, K being K she wants a new ‘Jaws’ t-shirt to add to her vast collection and also a CD and she will get them and more.

I am now at last on the mend and gaining strength day by day. The operation was a complete success but I will need to have quite a few Chemotherapy sessions just to ‘zap’ those strays and make sure its all eradicated.

The panoramic photo enclosed in this post were taken from our dining area on the ward at night when as usual, TG couldn’t sleep.

TG

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View from my kitchen window.

Two separate mornings, two different skies, an ever changing landscape of different colours and effects to watch from my kitchen window as I do the washing up.

Frosty cold and misty with clear blue skies.

Still frosty and cold but with a sky peppered with tiny fluffs of clouds.

And one from K who went dashing out of the door in her pajamas the other night in order to capture a full (and frosty) moon.

TG

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One Track Mind.

Looking out the kitchen window as dusk fell tonight, K noticed the reddish clouds in the sky.

“Red sky at night, Turkish Delight!”

TG 

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Snowed In!

For the last two days we have not moved from this abode. K has been housebound.  No transport to take her to Day Care though as usual I was reminded that if I could get her there staff were in situ.  Hmm. Pity the helicopter’s being serviced isn’t it? So Tuesday I had the pleasure of hearing constant hassle to plod out regardless, call a taxi or sledge down on one of our tea trays  into the thick snow for some shopping. When I flatly refused, we had mutterings, grumbles, looks that could kill, and all born by me with a blatant resolve not to give in to the evil looks and curses made under the breath.

Pictures of York.

K returned from her venture to York dungeon yesterday with some pics for you all. She took more, but I am not allowed to show those containing the other Day Care people for privacy reasons. So just a few I’m afraid.

I like this one simply because she has captured the fog so well,

As always there has to be a self portrait. (or should I say, self photo?)

Where’s that fridge magnet for my Mum? ( that I had given her a fiver for)

Hmm. Wonder who this is?

We’d all love another pair of hands!

Another nice shot by the river. Her photos get better and better!

In fact this one is crying out for a ‘black and white’ makeover.

Again, nice shot of this bridge. She did attempt a panoramic shot of this, but it didn’t quite work. She puts my photo attempts to shame!  

TG 

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Share and share alike.

My daughter believes in share and share alike. Her motto on a frosty and slippy morning?  If I go down, your going down with me!

TG (clinging on to a support worker)

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All by myself…..

Riding her horse Sally all by herself, and also having a trot along the lane.

TG  (this lot cost me two packets of crisps I’ll have you all know!)

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One track mind.

Walking down to town on Sunday for our shopping. The pavement is covered with autumn leaves.

Observant remark from my daughter. “Hey, it sounds like crisps!” Sigh.

TG

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Spooky Halloween!

Many of my readers will be aware of my daughters acting abilities. She is a born actress, spends the majority of her time watching films or television programs and has always been   very interested in effects and make up. We only had three ‘Trick or Treaters’ call last night, so in order to add to the whole affair and in the spirit (sorry, pun intended) of Halloween, she began trying out various attempts to spook her Mum who was trying vainly to catch up on watching some of my recent TV recordings. It was all so funny that I grabbed my camera and took a photo of her escapades for you all, and here they are.

Jabbing Time.

On Friday, we went down to the doctors for our annual combined flu and swine flu jab.  In hindsight, maybe I should have mentioned to the nurse who administered my jab that I was feeling ‘under the weather’ with a sore throat.  As usual I kept Mum.  K had hers done first.  She always gets in a bit of a state over it and then afterwards always says “Oh that was nothing!”  Every year.  The nurses always find her hilarious.  Later that day, I began to feel ‘off’.  One minute I felt cold, the next minute hot.

I’m under the Weather and under the thumb!

 

 

Whiling away the time all day yesterday waiting for a parcel to be delivered, by the time that K arrived home from Day Care the courier had still not arrived.  I announced to K that we would have to forgo our usual trip to Sainsbury’s for our Tuesday food supply stock up.  She wasn’t going to be deterred  so easily however.

Stitch that shot!

Well well well! She’s seen me take loads of shots with my camera destined to be stitched together into a panoramic shot in Windows Live Photo Gallery and guess what? My lovely Down’s Syndrome daughter, who has been to St Anne’s today for a day out, has actually managed to do the same! I am so proud of her!  I think she should now be featured on a Microsoft advert for Live Photo Gallery,  don’t you?

 TG

Technorati Tags: K,camera,beach,shot,stitch,panoramic,live photo gallery,St Annes