Hearts full of thank you…

On the last really hot day of this month, whilst Alex and his respite family went off to the beach, Emma decided she’d like to go to the cinema.  To watch Frozen.  Again.

Luckily for her, I didn’t mind.  We’ve slowly – like every other family I know – become a bit overrun by all things Frozen, and Emma has been carefully writing out the various song lyrics for friends for weeks.  For those of you who haven’t been to see it yet… go see it.  It’s the only film Emma and I have discussed in detail all the way home.  At it’s core – I think – is the love and friendship two very different sisters have for each other and how this ultimately saves the day (Elsa – unlike her sister Ana –  just happens to be able to flare out snow and ice from her hands in a fashion very similar to Spiderman and his webs) but there is so much more to it than that.  For one, there’s Disney’s first gay family, but my favourite has to be the beautiful subversion of the traditional fairytale ‘love at first sight’ idea (‘You’ve agreed to marry him, and you’ve only just met him…?’ echoes throughout the film).

Where this film really resonated with me the second time round in a way which had somehow passed me by the first time round, is in the isolation of Elsa and the affect this has both on her, and the household.  For what you can see are the best intended reasons she – and her somewhat unusual ability to create wintery conditions – are hidden away in her bedroom, out of sight, away from everyone.  She never sees her sister. Elsa’s not seen or heard from again by the outside world till her parents die and she comes of age for her own coronation.  She is scared all the time of making the wrong move, doing the wrong thing and hurting someone with these powers she has.

There’s no doubt we both do and did this with ourselves and Alex.  Sometimes it’s easier, so much less aggravation, so many less questions to answer if we maintain what we in the land of disability like to call our ‘bubble'; where our life seems normal even though we accept that to most people it looks anything but.  So the shutters come down, the doors are closed, invitations are declined and life goes on being lived, but very much within our own 4 walls and on our terms.  It’s easy… but it’s not much fun.  You resent life if it’s lived this way because you can see just how much of life you are not living, you are just exist-ing… you see how much is passing you by that you just – foolishly, oh so light-heartedly – assumed would be yours for the taking.

So we went out.  We took baby steps.  Days away from home just by ourselves.  Look, we’ve done it, we’ve had a walk, had a picnic, had an icecream.  Isn’t this what normal people do?  (Again, whatever normal is…).  Days out with close friends.  Weekends away with friends and their children which have been glorious times for us and Emma, just to be out there.  And we found… it was ok.  And just as Elsa was so much happier when her town accepted her for who she was and she could use those unusual powers for fun (How great that Olaf never has to find out what summer means for a snowman?)… How much happier are we, with our unusually put together family when we – and Alex – are out in the full glare of everyone.

Living.

Our friends, they are accepting, they ask sensible questions, they help.  Strangers… well, it would be great if those few stared a little less, but in the main they check Alex, they look at us and they grin.  It’s hard not to as all those of you who have met him can attest to – he’s a happy little boy and that’s infectious, disability or no.  And that flapping of arms, those stamping feet, you know he’s happy.  No grey areas for our little boy.

Last Saturday, we put him firmly front and centre at a local fundraiser.  Here he is, here’s our boy, thank you for helping him.  People’s generosity to The Wakey Cup was astounding.  So many people came and said hello, and so many people supported the day and the cause – in so many ways.  There is enough to buy him a trike, which we are so excited by.  We think he’ll love it.  The different movements it will allow him, the different sensations he will feel being more exposed to the air.  There is also, hopefully, amazingly, enough to get a 3 wheeler all-terrain buggy so that when Emma goes hunting for shells on the beach near her grandparents, we can all go and help.  This will all add to Alex’s exploration and enjoyment of life, thus enabling us all.

We cannot thank all of you who supported this day enough.  And to the Wakey Cup organisers a special thank you, for the time and effort you put in to making it such a success.  You’re truly amazing.

Thank you.  From all of us.

Alex & Sammy

This is me and my cousin Sammy on the bouncy castle.  We loved it.  Thank you all so so much, my Mummy says that this trike will make me quicker than Emma!

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