As long as…

So, let’s just recap to the bit where Hannah’s daddy said what he said.

(Just in case you’re new here “Hello!” *waves vigorously*, this ties in to my last post…so you might want to just pop back there and have a look at that)

Anyway, all the prospective daddies were having a good old time bonding and sharing their expectations of impending fatherhood, then, he (Hannah’s daddy) puts the mockers on it all in response to their collective “as long as the baby is healthy” comment and questioned what if the baby WASN’T healthy?…and would they love the baby any less?

Oh deary me!  It isn’t very British to speak your mind in such a forthright manner, really, is it?   He was subsequently ‘sent to Coventry’ after that.

Whoopsy!

But like I said in my last post, at some point, I probably said this too.  I can’t remember when and in what context, but it just seems to be the thing we’re expected to say and, after all, don’t most of us parents want the best for our children?  We don’t want our children to struggle or suffer, do we?

“As long as…”

We all say it at some point…

As long as the sun shines during my holiday/wedding day then I’ll be happy (but what if the sun doesn’t shine?)

As long as you don’t break it, you can borrow it (but what if they do break it?)

You can go out, as long as you come back on time (but what if they don’t come back on time?)

It’s often a conditional sentence, really.  And sometimes, we say it without even thinking.

But for me, in retrospect, I think it’d be a pretty smart move if we got rid of the “as long as the baby is healthy” statement, because it’s ambiguous and not that clear cut.  It’s almost habitual to say it too.  Even though inexplicit, it means all kinds of stuff.  Negative stuff.  And, for me, it completely invalidates the lives and glorious potential of babies, children, young people and adults with disabilities and health needs.

Without picking the comment completely to bits, does this (seemingly throw away) comment really mean…as long as the baby doesn’t have a medical condition and/or is not disabled?

Maybe.

Now isn’t that sad?  Because isn’t ALL life precious?

I hope I’m not coming across all preachy and judgemental about this (and putting the dampeners on your good mood!), however, aren’t we forgetting (or, naturally, don’t want to consider it – unless it happened to us, that is) that our healthy babies and children could acquire a disability or a life limiting illness later on in life?  In fact, it’s estimated that 1 in 400 of our healthy babies ‘in-utero’ may be diagnosed with cerebral palsy – some babies affected due to medical negligence during birth or even up to the age of around two.  (Source: cerebralpalsy.org.uk).  One child in every 500 in the UK will develop cancer before the age of 14 years (Source: childrenwithcancer.org.uk).  One in 3,500 boys will be diagnosed with Duchenne Muscular Dystrophy – a life limiting illness where the average life expectancy is mid 20’s (Duchenne.org.uk).  The Child Accident Prevention Trust (capt.org.uk) state that “accidents are a leading cause of death and serious injury for children and young people” – it is second only to cancer.

Whilst we can’t live day by day pondering on all this stuff and we’d all like to think “it’ll never happen to us or our children”…it may well do.  None of us are that special that we’re immune.  None of our children are exempt at any time from being unhealthy.  But let me ask you this….would our love for our children diminish if we knew they’d become ‘unhealthy’ or would we consider them any ‘less’ then?  I doubt it very, very much.  In fact, I’d go so far as to say that we’d never take a day, an hour, a millisecond with our children for granted from then on…when Mother Nature gives us a wakeup call – and really does make us realise just how precious life is.

We’ve recently celebrated our Paralympians’ achievements in Rio – through the parades in Manchester and London.   Many of those athletes weren’t born ‘healthy’…many of them also acquired their disabilities later on in life.

And just off the top of my head I can think of some people whom most of us are aware of who were born with, were suspected of having or who acquired additional needs in childhood or adulthood:

Professor Steven Hawking (ALS),

Dudley Moore (Club foot),

Stevie Wonder (sight impairment),

Hellen Keller (deafblind),

Beethoven (hearing impairment),

Ian Dury and Frida Kahlo (polio)…in fact, it was also suspected that Ms Kahlo had spina bifida too.

Albert Einstein, Franz Kafka & Carl Jung (suspected Autism or Aspergers syndrome) – all hailed as geniuses in their fields.

John Mellencamp (Spina Bifida)

…and all these people were someone’s baby at some point.

In fact, the world has seen musicians, professors, artists, authors, politicians and political activists, academics and all manner of amazing people with additional needs – famous or not –  doing their stuff incredibly successfully (FAR more successfully than probably you or I will ever do) and many of them not born “healthy”.

But for me, you don’t have to be ‘successful’ in anything at all to be worthy of being a global citizen.  We all share something in common, something incredibly significant:  we’re all born in a day and we all die in a day.  Apologies for pointing this out…I usually endeavour to be jolly and reasonably positive in my posts, but really, it’s a fact, ain’t it?  I suppose the timescales and what we do in-between the born bit and the dying bit differs for us all.

I bet too we all know of at least one person with a ‘hidden disability’ – whether acquired or congenital, diagnosed or undiagnosed – anxiety, PTSD, epilepsy, hearing loss, diabetes, chronic pain, depression…

Are all these people any ‘less’ than a non-disabled person? Nope.  Absolutely NOT!

My baby (Hannah) wasn’t born ‘healthy’, but was I delighted that she came into my life?  Definitely, yes!

Is my life more enriched, more meaningful, far more colourful for her being around? Without a doubt!

Do I love her any less for having significant disabilities?  NO! I couldn’t love her more. 

Am I blessed to have her in my life?  Oh, absolutely!

Is she the greatest teacher I’ll ever have? Yep!

My girl is my hero.  She’s perfect.  She’s unique.  She drives me completely potty and scares me stiff and is the scruffiest kid I know *sigh*.  I never, EVER take a day with her for granted and maybe, just maybe, I WOULD have done if she didn’t have her syndrome and all its associated issues.  She has more zest for life than most adults I’ve ever come across.  She may have significant additional needs, however, she’s no ‘less’ worthy of being on this planet than you reading this, or anyone else for that matter.  Make no mistake about that!

Despite all the trauma and adversity Hannah’s already faced in her seven years on this planet, if she could speak or communicate effectively, I KNOW she’d tell me she was happy to be alive.

…and she’s precious.  SO overwhelmingly precious.

IMAG0679.jpg

So, I guess that’s all for now, my lovelies.

But let me leave you with this before I go….one of my favourite quotes…

“The gentle spring rain permeates the soil of my soul. A seed that has lain deeply in the earth for many years just smiles”

Thich Nhat Hanh

(Blimey, I got all serious in this post, didn’t I?  Sorry.  I’ll try and lighten up a little next time)

Thanks for stopping by.

Until next time

Annie xoxo

This post is dedicated to my very own Gentle Spring Rain – Hannah…and all of our unhealthy babies ❤  

 

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This entry was posted in Miscellaneous, Parenting, Syndromes/Special Needs and tagged , , , , , , , , , , . Bookmark the permalink.

4 Responses to As long as…

  1. Sheila says:

    Your Hannah looks so very happy in that photo. I love it!

  2. Adrienne says:

    Seven already!!! Where have the years gone. Xxxx

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