What's so special about Casey's needs..?

What's so special about Casey's needs..?

On the face of if, it appears a very easy question to answer.
She has cerebral palsy, she can't walk.
She's doubly incontinent. She will never gain full independence and will have to rely on carers for the rest of her life..
See, easy to answer...

Until you factor in that the question was asked of me by Casey's twin sister - Carmel..

Once you know that, then the question demands a whole different answer.
An answer that will never fully satisfy Carmels curiosity around this subject.

Everyone looks at Casey and smiles. They feel she's brave and kind and selfless.
What people don't realise that every time anyone comments on what an amazing little girl Casey is, Carmel looks on, confused about how Casey can be so amazing when she can't even walk - let alone run.., and will NEVER be able to be the fastest runner - like Carmel is.
So, Carmel lives in a world of confusion.

She occupies a space where what she hears conflicts with her instinct to be the best.

She then hears that Casey is 'special needs'
Which she clearly doesn't understand.

How do I explain to a five year old that Casey will never have any independence when the thought of being without mummy & daddy for five minutes terrifies Carmel.
Carmel knows that Casey will never have to face the world alone. She may never have to be lonely.
Carmel will have to face the challenges of survival and independence.

So, if anyone has any advice on how I can explain why Casey's needs are so special to her five year old able bodied twin sister please let me know....

How Casey's fund raising began..

It all started with this letter...

My name is Casey I am 4 years old and I am a twin. I have cerebral palsy which means I can't walk.

There is an operation that can help cerebral palsy sufferers be able to walk - I am not eligible for the operation due to complications.

I have a friend at school - Matilda (5) She is also a twin (her brother is my sisters boyfriend..!)

Matilda can have the operation at Great Ormond Street Hospital but the NHS are unable to cover the whole cost of the operation - the only way she can have it is if she pays £25,648 towards it - she is only 5 and so doesn't have enough money in her piggy bank.

So, me and my mummy are helping Matilda and her mummy to raise the money..

Can you help us please..? We need to ask £25,648 people for £1 each but I don't know that many people - so I need someone to help me that does..

So far, we have raised about £1200 so I only need to as 24,448 people now ..

Please help me raise this money for my friend ..

Please don't park in the disabled space..

Please don't park in the disabled space..

It's very difficult for me as I have spent years stopping and waiting in disabled parking spaces without giving a second thought to anyone that might need them..

So I feel it necessary, now I have been enlightened, to explain why disabled people need them to be available.

Before I had a child in a wheelchair, I thought disabled parking spaces were just about needing to be the closest to the building - the 'rock star' parking.
I was ignorant and uninformed.

There are many reasons why children and adults are issued with blue badges - they range from not being able to walk far, due to mobility/heart/breathing to children who are autistic/wheelchair users.
I'm sure there are many other conditions that can be included.

For me, it's Casey who has the blue badge. We don't need a space close to the shops as I am more than capable of pushing that wheelchair all day..!

The reason I need a disabled space is due to the width of the bay - please take note next time you see one. Notice how the bays are very wide. This is because I have to get the wheelchair out of the boot and bring it round to Casey. I then have to lift her from the car, into the wheelchair all without banging her head..! This is why I need a disabled space - I need the width next to the car to get Casey in and out of the wheelchair.

Many times I drive up to disabled bays and someone is sitting in them, just like I used to, without giving it a second thought.

Please share this far and wide - Casey has me to assist her in getting in and out of the car as she is 5 years old.

I have seen many adults with special & medical needs on their own who have been prevented from accessing the space and convenience that their condition may require by disabled spaces being occupied by vehicles 'waiting' for someone..

Please don't be like I used to be and not consider who may need the space that I was occupying.....

Meet Casey ...

Casey and her twin sister were born at 33 weeks.

I literally had one contraction and they were there - they ended up arriving by C-section but only because Casey was breach.
Casey was a fit and healthy twin one.

Her sister who was very small was in an incubator for a few weeks and contracted meningitis at 3 days old - she recovered fully with no repercussions.

We managed, somehow to get through the 4 weeks of special care and arrived home to join our 17 month old son..!
I would tell you how challenging having three children in 17 months was but I can't remember much about it.
Those early days passed in a blur..

Everything with the twins progressed well apart from Casey's consultant noticed that she had clicky hips - officially called hip dysplacia .. He reassured us by telling us that it was an uncomplicated condition and could be easily rectified.
Casey was referred to a consultant who further reassured us stating all we had to do was place her in a 'pavlic harness' (Google it!!) daily and the problem would soon rectify ..
So we weren't worried - at all. Because in everything, she was progressing normally and gave us, or either of the two consultants she was under any concerns..

One day we were told that her hips were not progressing as expected so her consultant would like to have a better look under anaesthetic by putting dye in her hips ..
He explained how he would put her in a 'frog leg' position and put a plaster cast on her so that she would be fixed in this 'frog' position.

We agreed - it all sounded simple enough.
Casey had the surgery, recovered well and came out with a 'frog leg' plaster cast on - officially known as a 'spica'

By now, Casey was 8-9 months old and other than her hips was showing no signs of any problems whatsoever ..

Overnight, that was to change - although even at the time, we had no idea how the events over the next couple of years would turn our world upside down .....

Life before I had a disabled child...

This all began when I was asked to write something that showed my experiences as a mum of a disabled child..

I don't think this is what they expected ..

Many years ago, I went to a country fair. It was a hot sunny day perfect for our family day out. There was rides, stalls and fun games to play. The best part was the food..!

The choice was endless – burgers, hot dogs, candy floss – everything you can imagine..

We decided on the hog roast stand. Freshly cooked roast pork stuffed into a sandwich and then smothered with any sauce you desired. 

I joined the queue behind a lady in an electric wheelchair. At the time, I had no idea what her disability was, or why me noticing her and my experience of her would stick in my mind so strongly.

She ordered her sandwich and managed to somehow balance it on her knee while she manoeuvred her wheelchair to the table. I was frozen to the spot, fascinated my her every move.

In her attempts to add ketchup to her pork sandwich, she managed to drop the whole thing on the floor.  She stopped, waited, attempted to pick it up but couldn’t reach it. I could see her mind ticking while she thought about what to do next. She turned round, clearly deflated and moved off back into the fair.

She had no sandwich, maybe no money to buy another one and no one with her. At the time I had no reason to have any interest in this. I didn’t know personally anyone disabled or any wheelchair users. Yet the picture of this situation was etched in my mind so vividly and evoked strong emotions in me 

every time I replayed it in my head.

I now know why this had such a profound effect on me.

I have a 5 year old daughter, Casey with cerebral palsy. She can’t walk and is incontinent – she can speak very well and her cognitive function is almost ‘normal’ if there is such a thing – very similar to the presentation of the lady at the fair.

And now – because of that day at the country fair – I understand.

I understand the challenges that Casey will face in life.., for her whole life. And this is because of this fleeting moment where this poor lady gave me an insight into my daughters future. She was able to show me a picture of the challenges that my child with always face.

I am still sorry, to this day that I didn’t help the lady. I don't even know if she would have wanted me to.

I will always be greatful to this stranger for giving me the most amazing gift..., and she will never know.