Our Poem for H

Life in a family with a disabled sister is normal to me, normal to us all. It is natural for us and we now couldn't imagine it, and wouldn't have it, any other way. It wasn't as we expected though.

I was eight when H was born, a surprise at 5 weeks early. I remember the hushed phone calls and the silence from adults when asking for news. We knew something had happened, that this thing that had happened was to do with the new baby, that the new baby was a girl and that she wasn't coming home - "not yet".

Days became weeks, and during these weeks we came to understand that H was very ill, that she was 'disabled' and that it was probable that she would not live. We all felt a little helpless miles from the hospital - not that we could do anything even if we were there. She was in an incubator with scores of tubes attached to her, surrounded by machines and specialists. I cannot hear the Athlete song 'Wires' without thinking of baby H. She was so tiny, yet so very, very strong.

She astounded her doctors, by fighting back from each new challenge. They said if she had been born a year earlier, that they would not have had the technology to save her. The thought does not bare thinking.

I had always thought that our mother had taken this all in her stride, that the moment she laid eyes on H she didn't see all the things 'wrong' with her and that she just saw her little girl. But I was wrong. Mum described her feelings of that initial week as that she hadn't got 'what she had ordered'. That you have this perfect picture of your child in your head and that when her child was not perfect in the ordinary way, that she felt cheated and guiltily recalled that, in the shock of the moment, she had not wanted her.

Time passed and the shock gave way to the inevitable love that anyone who knows H cannot help but have for her. I remember a poem Mum shared with us to try to explain to us why this had 'happened' to us. It is a commonly shared poem in families who have disabled children. It brings understanding of the important role our special families play. Its author is Edna Massionilla and I want to share it with you:

Heaven's Very Special Child

A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.

His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.

He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.

So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.

So, you see, those who have not experienced loved ones with special needs may misunderstand H as a burden rather than the gift she really is. I am not saying it was easy. In truth she turned our world upside-down and inside-out, but, our world, albeit upside-down and inside-out, is more complete with her in it.

Bunny, Bunny, Bunny, Bunny.... Whoops.... Bunny, Bunny.... Whoops.... Bunny, Bunny, Bunny, Bunny

OK, so I know "Bunny, Bunny, Bunny, Bunny.... Whoops.... Bunny, Bunny.... Whoops.... Bunny, Bunny, Bunny, Bunny" is a bit of a long and odd title for a post. But, hey, nevermind. It means something to me, at least. It was a little trick I used to play on my elder niece when she was diddy, and apart from the word 'Bunny', it has nothing to do with the rest of what I want to tell you... Oh, well, I am feeling a little bit naughty and self indulgent tonight, so let's just roll (or hop) with it for now!

Today I went into Oxford to get a bunny. Not a real life bouncy fluffy bunny. A stuffed bunny. And, no, I don't mean taxidermy. I went to buy a soft toy bunny for my little niece who I will be seeing next week. I know she will love it as she makes a bee-line for both of the ones I have every time I see her. I am not the type of person to collect teddy bears, or even teddy bunnies, in fact teddy bears have always freaked me out a little, along with dolls of all kinds. In spite of this I have two little white teddy bunnies, one of which has a bell inside it. In all honesty, despite the fact that I bought them and that they have spent every night since they were bought in my arms, they are not my bunnies. They were bought for two much more important people than I, and I am just looking after them for now.

I bought her, my niece, her own bunny last year - a mainly white, with a teeny bit of pink, 'Miffy' bunny, which she (apparently) cuddles each night before she eventually allows herself to succumb to sleep. I guess you could say it is her comforter.

My comforter as a child was a blanket. I loved my blanket so much and to this day remember my upset and confusion as I watched it shrink in size and then totally disappear. My mother, at the time, explained the phenomenon away as the washing machine's doing. It had, on several occasions, unexplainedly, repeatedly, shrunk my innocent blanket, until one night when it had finally 'eaten' it, and Blanket was gone. I was distraught and hated the washing machine for a very long time! I only discovered the truth about 'Blanket' later in life, and I wasn't impressed! The truth, the whole truth, and nothing but the truth, was that my mother (yes, my wholesome, honest, god-fearing mother) had systematically cut my blanket down in size again and again until the time came when the washing machine (aka 'the bin') could be blamed for its eventual demise.

As far as comforters go, I thought Blanket was pretty harmless really. I wasn't the only sibling who had a comforter... My brother had 'Fred'. Fred was a hand made starfish-shaped ginger stripy clown. Yes, he sounds attractive, I know! A little odd, perhaps? Truth is, he was. But, he was also very loved (and exists to this day, I believe). My sister had a cutting of silk that she used to wrap around her fingers before she went to sleep - I think the 'washing machine' may have played a similar sinister part in bringing that love affair to an end. My sister, however, also had her thumb! Not much Mum could do about that! Not even the washing machine could fix that! So, Mum did what most parents would have done. She resorted to bribery. She promised to buy my sister a watch if she could bring herself to stop sucking her thumb. I really didn't find this fair. I didn't have any bad habits to give up in order to get a watch. So I seriously considered starting to suck my thumb, just so I could get my watch when I stopped.

My aunt, it seems, did not have the same aversion to comforters that our Mum did. She allowed our cousin to keep, maul even, his 'Bee', which, alternative to the suggestion in his name, is not a bee, but a bunny. Well, at least Bee was a bunny, if I was being accurate I would say that he is now just an ear - the result of 30 years of 'love' - although I doubt Bee felt the same ultimately.

So, we have come full circle, back to bunnies. Next week, I will give my niece her new bunny, and I can only hope it gets half the love bestowed to Fred, Blanket, Bee or my sister's silk ribbon!

On Hopes and Fears

Fear is a funny creature that preys upon us, elevates our heart rates, spikes our senses, raises goose-bumps and arm hair, makes us shiver and, for the unfortunate few, can paralyse us in our tracks. Some fears are more common - spiders, snakes, celebrities getting 'papped' without their make-up. Some, however, are, lets face it, just out and out strange!

If you ask me what I am scared of, moths will feature highly. It is not that I find a moth itself a terrifying sight to behold, it's the flying moth I fear. The moth that randomly approaches, no pattern in its flight - you can never be sure where it is heading. Although inevitably, it will always try to attack me, burrow into my hair and try to get into my ear - at least that is what I fear. Irrational, I know, but woe betide a moth be waiting for me when I go to bed. The moth will be victorious as I will not, no, actually, can not, sleep in the same room. It is at times like then that I miss my youngest brother, my official appointed moth killer/remover/trapper.

So, what is it about them that scares me so much? I do not know for sure. I have tried to tell myself that they are 'just furry butterflies', but my fear is too smart to be fooled. It, instead, deeply ingrains into my subconscious that they are 'evil butterflies' out to get me. In fact, I can not think of two such similar things as the moth and the butterfly which entice such polar opposite reactions in my body.

I remember a summer afternoon, living on the farm, when I decided to sit out in our garden and draw our family home (built circa 1600s). I was deep in concentration in capturing the aging bench below the sitting room window, when the most beautiful butterfly swept in and graciously perched itself delicately on my left knee. I daren't move or breath for danger of scaring it away. It flexed its wings and seemed to be curious about me. Seconds passed so slowly as I admired the outstanding colours and detail woven into its wings. After about a minute it swiftly took to flight and soared up over the roof of our house only to arch skywards and perform a perfect loop-de-loop and returned boomerang-style to my knee. I felt so privileged this outstanding beauty had thought me special enough to revisit! In a bizarre way, I felt it knew I was no danger to it - it didn't fear me, despite my colossal size in comparison. It had learnt to trust me.

My other, ridiculously embarrassing, fear is floaty bits in washing up water. I instantly turn cold and snatch my hand away as fast as lightning as whatever-it-is brushes against my hand. A shiver ran down my spine just now simply imagining it in detail enough to explain it to you. I think, again, it is related to the unpredictability of the situation. It could be anything! Well, realistically, it could only be a limited amount of foodstuffs from the dinner just cooked. But my mind will not accept that logic and still tells my senses that it could be seaweed, or worse, jellyfish!!! Euuggh!

These, of course, are the fears I am comfortable sharing when asked what I am scared of. My deeper seated fears are of failure, of rejection and of loss. But these, are more socially acceptable fears. Quite unlike my strange ones, and those oddities told to me by friends - elastic bands, cotton wool and (!!) the little white bits that grow out of potatoes when they have been left in the cupboard for a while. Now, that is so specific and outlandish even I don't understand. But, that's not the point. Fears are very personal, and for her, it is very real.

I am aware, dear reader, that I inferred from the title of this post I would also talk a little about hopes. I have not forgotten. I am getting to that now.

Hopes are generally characterised by those we wish for a new born baby - health, happiness, love and success. Upon these basic hopes, we overlay our values. I truly believe we should treat others as we'd wish to be treated ourselves, and, without actually directly believing in 'karma', it does ring true that, generally, what goes around, comes around.

I don't believe this is a cosmic balancing out of human rights and wrongs. I believe it is in our nature. We have scientifically recognised aspects of ourselves which would lean towards the result of karma. For example, our capacity to remember. Who can honestly say we forgive and forget? We don't actually forget. We learn from experiences and only grant future faith, favours and good will to those deserving of it. To do otherwise would just be crazy. In addition to this we possess greater awareness than scientists give us documented credit for. We somehow know when we meet someone who is 'not very nice'. People definitely give off what can only be described as 'vibes'. I am lucky to own acute instincts, and in the main, they serve me well. But, sometimes 'lucky' is not how I feel as sometimes these instincts can land me in awkward situations - such as when I know someone is telling me a lie but they reassure me they are telling truth. In situations such as these, without 'evidence' it is a very difficult thing to explain how I know what I know. It isn't because I have a 6th sense. I genuinely believe that I have the ability to pick up tiny cues from people, even if they are not aware they are sending them out, and I have honed a skill to read them correctly.

My one true hope for myself is that when I die it has mattered that I have lived. I do not mean that I will leave grieving loved ones behind - I hope that is a given (and I don't mean I am wishing them future unhappiness, but, if they are not upset when I do go I might just come back to haunt them just for the sake of it). What I mean is that I hope there is physically part of me that is left behind. The most obvious way of achieving this is in having children, and my children having children, and so on and so forth - even though, admittedly so, it will be an increasingly small part of me which will live on through them. The incomprehensible fact about this is that if I do not have children all of those future children and grandchildren will not exist. Well, theoretically, they will half exist as whomever was going to be their father will still meet a different mother and the 50% that would have been me will simply be 50% someone else. It is just too weird to discuss further.

Another way to live on would be to do something outstanding for the world, like finding a cure for cancer. I am guessing I have no real chance of that, not having pursued the sciences for my career choice. But, consider this: What if my £15 monthly donation gives Cancer Research just enough money to hire the scientist whose research in five years strikes upon the answer? What if, without my measly £15 they didn't hire him? Or her? Actually, yes, in my random scenario it is a lady, let's call her 'Rosie'. What if, without my tiny donation Rosie is not hired and hence she does not make her incredible discovery? Instead to pay back her student loan she has to take a job in sales, although I have no doubt she will be brilliant at what ever she does, as let's face it - she is the girl that would have found the cure for cancer!

Or, we can write books. We can live on through future generations reading our carefully crafted thoughts captured as printed words on the page that we publish to share with the world at large, forever. This is why I think it is criminal (am I being too harsh? Is jail really an appropriate sentence?) when people do not read books. They have been made specifically for us to read. The author spent valuable time, care and attention to creating it for you to read, and if you don't... did they waste their time? Their life?

Perhaps, dear reader, these words I write for you will be the only part of me to live on, albeit somewhere in cyberspace rather then the physical page. Although, given the reliability of 'Blogger' this past week, I do not hold much Hope! ;)

Rule Britannia! Britannia, Rule the (Air)Waves

Every now and then along comes an event which divides the world. You know the events - the ones you cant even miss if you blink, not even if you blink constantly for days, weeks on end. On Friday 29th April 2011 the World's eyes were on England for the Royal Wedding of our Prince William to his Kate. From here on the world would forever be divided into those who watched and those who did not.

I am not one to get excited by Hello! magazine wedding spreads. I am not a Royalist. I don't even 'do' marriage. And I was determined to be 'on the other side of the divide' of the Royal Wedding hysteria which bombarded the lives of English citizens in the weeks and months (felt like years) running up to the main event.

However, despite my blind protestations that I would not be watching the Royal Wedding, I watched the Royal Wedding. And, if I tell you a dirty secret would you keep it for me?.... I loved it! To my shock (and horror) I sat in front of my TV unabashedly owning a soppy grin throughout the whole ceremony. And it left me thinking... why?

It was certainly not the pomp and circumstance of the ceremony, all things grandiose do not impress me. It was not the dresses (is it a McQueen? will it be a Vivienne Westwood? I honestly did not, and still do not, care). It was definitely not the presence of our Queenie, 'Her Maj'. The reason for my Cheshire Cat grin, was that here, despite all odds, was a couple who looked truly in love. I know the nervous smirk which appeared on Prince William's face when he saw Kate, I have seen it before. It was unmistakeably the same incredibly proud look I saw on my own brother's face when he married his wife. It is the look of the (pedigree) cat that got the (Tesco's Finest) cream.

I believe 'my generation' can identify with the young generation of royals (despite their ridiculous titles, fancy clothes and the Queen being their Grannie). They are just like us: they party, they dance to Nelly Furtado's 'Man Eater' at concerts and they, very occasionally, make poor fancy dress choices which offend the nation (who hasn't).

I was, however, disappointed with HRH ER II constantly trying to upstage the bride (even I, with my limited wedding etiquette know that upstaging the bride is a wedding no-no). Her carriage was grander and had more horses, trumpets heralded her leaving Buckingham Palace (or were they celebrating her leaving?) and her arrival at Westminster Abbey, and all the guests, including the Bride and Groom, had to sing the National Anthem to her! Couldn't she just say: "You know what? I'll let you have this one Kate".

Anyhow, attention-grabbing Queenies aside, I am reformed. 2012 sees Her Maj's Diamond Jubilee (and another Bank Holiday) and I am already working on convincing Prince Harry that he wants to marry Chelsea in 2013. I am really liking the possibility of a rolling programme of additional (royal related) Bank Holidays, and, if truth be told, I loved the Royal Wedding and will watch the next one!

Although, if asked, I will deny I ever said that!....