Love, happiness and beauty – a new adventure

Hello.  Thanks for taking the time to stop by…and Happy New Year!

Well, here I am with my very own blog…a new and exciting adventure….and a bit scary too.

For my very first blog post on ‘my kid loves broccoli’ I wanted to share something with you that I think is really special.   Some people may think i’m cheating because what I’m about to share has already been posted elsewhere.  However, I felt it was very fitting to post on my own blog….plus, I had such an overwhelming response to it and (warning – brag alert!) I’m really rather proud of it.

For those of you who read it the first time, thank you!  Thank you also to those who took the time to leave such truly lovely messages and ‘liked’ it or shared it on facebook.  I really didn’t intend to make anyone cry, but if it’s any consolation, after reading your comments, I also shed a few tears.  You’ve all made a difference but I’d like to elaborate on this another time.  Thank you also to the Cerebra Centre for Neurodevelopmental disorders (University of Birmingham) and The Guild of Photographers for liking and sharing.

The post that you’re about to read was initially shared on on 7th August 2013.  Janet (a professional photographer) and I initially met when I won a Mother’s Day competition for a photo shoot.  She then invited me to guest blog as I’d mentioned that I fancied ‘having a go’ myself but wasn’t brave enough to take the leap into the blogosphere on my own.  

And now I’m here (gulp!) all due again to Janet.  So here goes…I really hope you like it.  If you’d like to see the photos that went with the blog then please pop over to Janet’s website;  they really are rather lovely.  Make yourself comfy as this is a long one.  I promise that my future blogs won’t be as lengthy, honest!

Oh, I almost forgot to mention something really important.  This first post is dedicated to Hannah and Mark (who are my world) and to Janet, as none of this blogging stuff would ever have happened without her.

“Love, happiness and beauty. | An inspiring family photoshoot |
Guest blogged by Anne”

For quite some time I’d had this urge to write a blog; partly for cathartic reasons, partly to gently change people’s attitudes towards people with a disability but mostly because I’m an overwhelmingly proud mummy of Hannah ; an incredibly inspiring, scrumptious, wonderful little girl.

And then, I lost my mojo. I’m not quite sure where it went, but it totally deserted me.

My usually invaluable Ipad decided to eat all my ideas and notes i’d acquired over the past few months and for a split second I was pretty miffed.  For my first blog, at least, I had a desire to write something beautiful and inspiring – and maybe a little bit funny too – and most definitely long winded and grammatically incorrect (but hey, you can’t have everything, right?) but nothing I seemed to write after that came out as I’d wanted it to.

And then, recently, something very tragic happened to someone I know and it threw me back to a time over 3 years ago when I was sat in a hospital waiting room with my husband, unable to speak, move, breathe; willing for someone to enter the room and tell us that our child had been resuscitated and not died.  So I felt compelled to write something.  Part of my chosen theme sort of (ish) ties in with how I got to meet Janet (J Broughton Photography) in the first place…so here goes, apologies in advance for the long windedness but I have a lot to share…my first blog attempt…and maybe (but hopefully not) my last!…

On the morning of Mothers Day this year I received an email from Janet informing me that I’d won a photo shoot.  I was delighted.  Never one to normally enter competitions I wrote a heartfelt and quite personal email to Janet explaining why I thought I should win.  But this meant far more to me than a bunch of photos.  This, for me, would be a captured and forever cherished moment in time; just me and my girl…the little girl who I never thought I’d have.

I’ll spare you all the details of our journey over the last four years but here’s a pen picture…Hopefully, it’ll give you a flavour of why I’m writing.  Apologies in advance too if you find me adding humour in places where you think I shouldn’t have.  But to be honest, given what we’ve been through, sometimes it’s far better to try and find humour somewhere in a situation than to dwell on the painful bits.

After undergoing tests I was informed that  I’d more than likely never be able to conceive.  Then several years later in 2009 after a wonderful pregnancy and a relatively easy birth (although, amidst the gas and air, I do recall my husband moaning about his back hurting when he was holding my leg up!….hmmmm! Oh, and I did have my sister and husband in a head lock at one point too – sorry guys!) Hannah came into our lives.

And then our world almost (but I emphasise the word ‘almost’) fell apart.

Still lay on the delivery bed whilst the midwife practised her newly acquired embroidery techniques on me we were informed that Hannah had been taken immediately to the special care baby unit where she and I then stayed for just over 3 weeks.  Needless to say, it was all quite a shock  (that’s a bit of an understatement!).  We’d been given no indication whatsoever during our scans that there was any cause for concern.

During that time on the ward we were bombarded with information and words such as dysmorphic, holes in heart, brain scans, heart defects, cleft palate, deaf, blind, may not walk, talk, brain damage, small hands and feet, no chin, naso gastric tube, mustn’t lay flat- choke!, syndrome, physical disability, learning disability, tests, tests and more tests, oh the list was utterly ridiculously and overwhelmingly endless.   To be honest, they weren’t the type of conversations I would have preferred after just giving birth; supposedly one of the happiest moments in our lives.

I felt utterly helpless, angry and disempowered. On a couple of occasions I had a meltdown, shed quite a few tears and questioned why Hannah? why us?…well, actually, why not Hannah or us? After all, stuff like this has to happen to someone, right?

So the next year was pretty much spent attending a plethora of appointments and tests.  Some weeks these were on a daily basis and I really felt deprived of any quality time with my baby.  I missed out on those lovely newborn baby photos.  We had little time to ourselves and Hannah looked like such a poorly girl for such a long time that, to be brutally honest, I’d rather not be reminded of that time anyway.  And then there was her cleft surgery when she was 10 months old…another time I’d much rather not be reminded of right now, but one I briefly touched upon when I mentioned sitting in a waiting room earlier.

So lets fast forward to 2013….

Despite everything we were initially told when Hannah was born she’s really blossomed.  More so over these past few months for some reason.  There are many, many things that Hannah will have difficulty with throughout her life,  but we just take one day at a time. There are still no signs of her ever speaking which makes me incredibly sad.  I ache to hear her call me ‘mummy’ but perhaps that’s too much of a big ask.  Her eye contact has improved, she’s learning to take more direction and she’s starting to copy actions.  On Christmas Day 2012 she even took her first steps!  Pretty much the best Christmas present ever in my opinion.  Over the last few weeks she’s started to give hugs, albeit on her terms, but hey, why ever not!  I can’t ever begin to fully articulate how wonderful this feels.  I’ve had to wait 4 years for a hug – it’s a good job I’m patient!  Heavenly is perhaps the best word to describe it.

Hannah was a dream on the day of Janets photo shoot.  Unfortunately the weather was against us – it was particularly windy that day (her least favourite weather!) – but as you can see, the results were simply perfect.  So much so that during the viewing of said photos I pretty much blubbered all the way through!  They still make me misty eyed despite looking at them regularly.  Janet, you are unbelievably talented!…I still would have preferred it if you’d photoshopped my nose…just a little bit…well, quite a lot actually!  Thankfully, I don’t think I’ve passed the big nose gene onto Hannah!

We’ve been lucky enough to celebrate Hannah’s fourth birthday recently with a trip to the zoo where she appeared fascinated with the elephants and independently chose to wave at them – a very simple gesture, but one that brought a tear to my eye and a lump in my throat.  As I reflect on our journey since her birth I’ve realised that she’s unwittingly taught me so much…these are just a few things that spring to mind right now….

That a mothers love is truly unconditional…I only really realised this until I became a parent.

Patience, resilience, tenacity, confidence, advocacy skills, physical and emotional strength, selflessness (and as much sanity and energy as you can possibly muster!) is absolutely vital when you become a parent of a disabled child.  Oh, and a big, shouty and/or assertive voice comes in handy too…not for my child, but occasionally, when dealing with professionals.

My once heart of stone has now melted and I turn into a blubbering wreck when any new developmental achievements are made (I choose not to use the term ‘milestone’) regardless of how small they may be.  Before Hannah came along anyone would have assumed that I was born without tear ducts!

That Hannah’s welfare, safety and happiness is by far the most important task I have been bestowed. Ever.

My compassion for other people has increased tenfold.  I thought that I was blessed with a naturally empathetic nature but I think since Hannah came into our life my awareness has become much more heightened.   I lack patience with those who choose to belittle and mock others or just blatantly stare (yes, we have had people almost getting into Hannah’s pram whilst she’s in there just to have a good look) and I pity their ignorance and social skills.  The term ‘there but for the grace of God go I’ springs to mind and one day their attitudes could come back to bite them or their children on the derriere! No one but no one is exempt from acquiring a disability or a life limiting illness. There’s much to be said about Karma, but as much as I’d love to change societies opinions about people with disabilities, sadly, I doubt very much this will happen in my lifetime.  Phew, sorry about that, rant over!

We’re ALL different…hoorah!…and difference makes the world a much more interesting and colourful place to be in, so lets embrace and celebrate it.

For whatever time I’ve been granted in life to spend with Hannah, I want that time to be a memorable and happy one for her.

So, as a parting shot, I’ll leave you (eventually, I promise!) with this….

If I was ever asked to give one piece of advice it’s that disabled children aren’t always happy.  I say this because its been said to us SO many times….”but they’re happy aren’t they?”.  Actually, ‘they’ are children first, their disability is just a part of them, it doesn’t define them.  Disabled children are like any other ‘average’ child; they can be naughty, sad, happy, silly and so on.  Actually, our children have to endure endless medical tests and attend countless appointments, meet lots of professionals, spend lots of time in hospital,  perhaps experience much more pain, are more susceptible to experience abuse, more likely to have their parents divorce, more likely to live in a household where there are huge financial pressures (I read recently that the cost of raising a child with a disability is 3 times higher than raising a child without a disability) and so on and so on.  So, I would have to say no, our children can’t possibly always be happy…but as a parent I try very hard to make sure that Hannah is as happy and carefree as she could possibly be.

As I said earlier, this is my first blog, sorry it was so long winded – believe it or not I still have lots more to share! – but if it completely bombs and I never write again I want to take the opportunity to mention and thank a few people. I know, I know, it’s not the Oscars, but please just humour me…here goes, in no particular order…

Janet, thank you for your time, patience and beautiful photos and thank you for inviting me to guest blog….you were very brave!

To all the amazing staff at The Legacy Rainbow House (especially Nora, Becky, Joe, Kat, Steph and Sonia) we are lucky to have you in our lives.  There’s far too much to thank you all for here so I’ll just say ‘thank you for everything! ‘ and hope this covers it all.

A huge debt of gratitude goes to Miranda and the team at The Bolton News for running such lovely articles on Hannah, making me sound reasonably articulate despite the many garbled conversations we’ve had (sorry!) and for taking an interest.

To everyone who’s reached out to help with Hannah’s Appeal, be it total strangers who have never met Hannah, family or friends.  Your support has been absolutely overwhelming and you have made a difference to Hannah’s life…through your donations towards her conductive education sessions you’ve given her a priceless gift..the gift of mobility..thank you, thank you, and a million times thank you!  We have a long way to go and many hours and miles will still be spent driving up and down the motorway each week for Hannah to attend her sessions, but I’m determined to help her reach her potential.

To those parents who have lost their babies, to those that will and to those that  care for a child with a disability, you are in my thoughts, regardless of whether we’ve met or not.  For those who have just received a ‘diagnosis’ for your child, try to look for the positives.  You may be bombarded with labels and terminology and speculative remarks and assumptions, but remember, not everyone is right all of the time, right?  Look after yourself and each other and listen to your gut instinct.

If you’re lucky enough to be a parent of a healthy, non disabled child, please try not to moan…no matter how much they drive you potty, please remember that you have been blessed with a child…there are many people out there who would probably give anything to be in your situation.

Mum, Harry, Brenda and Eric…thank you for all your love and support.  To see you all so very proud of your granddaughter and her achievements is heartwarming.

To our beautiful friends who have been with us in good times and bad.  Thank you for understanding when we haven’t been in touch, for your interest in how Hannah is doing (it means SO much!), your support and for just being there, no matter how far away you are.  I love you.

To Rhys, Hannah’s best friend…you have taught Hannah that she has the potential to make relationships with her peers (something we were told she may never do!) and for that, my darling, you will always have a piece of my heart.  Thank you.  Here’s to a long and fun filled friendship.  Your mummy and I will start to save up for the wedding…no pressure then!

My Daddy, gone before you ever got the opportunity to know me as an adult and to know your granddaughter.  I will love you forever.  I cherish the time I had with you and I hope that wherever you are, you are proud of the person I’ve become.

My husband, my grump, my rock.  For holding my hand when I most needed it…and for taking over the cooking!…and so much more…I love you.

For those of you who have actually got to the bottom of this blog without losing the will to live…I salute you!…I hope you enjoyed this.

And last, but most definitely not least, my enchanting little mouse Hannah, my gentle spring rain.  I hope, one day, you’ll realise just how much I love you.  I am so very proud of you.  Thank you for being you!

Anne (aka Mummy)

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

6 Responses to Love, happiness and beauty – a new adventure

  1. Thank you Anne, I’m incredibly touched to have your first blog post dedicated to me ! Can’t wait to read your future posts, you are an inspiration x

  2. Anna says:

    Hi Anne,

    Thankyou so much for this blog and for sharing so much. It’s a real inspiration and puts a great deal into perspective. I hope you’ll continue. Warm thoughts to you, Hannah and Mark.

  3. Gemma Johnson says:

    You did it very proud. Xx

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