Dancing Queen

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Dearest Evie,

Dancing is in our blood.  Dancing is in your blood.  At the age of two you began ballet lessons, just as Ella did before you, Ava did after you and Greta followed in all your footsteps last year.  Mummy, Auntie Joanne and I, all attended the same ballet school with the same teachers, hence it seems to have become a family tradition.  I don’t suppose you remember when you joined the ballet school but I can assure you, that you have enjoyed every moment and up until recently, were busy practising for the show, which is to be staged later in the year.  You have danced in many shows at the local Arts Centre already and having been in the audience for all of them, I can recall your beaming smile and genuine excitement in partaking in these on-stage experiences.  The Saturday before your stroke, we were given the order forms for the show costumes.  Your form still remains in the envelope, uncompleted.  This small slip of paper sparks such emotion.  Will you get to wear your costume?  We simply can’t answer that question at the moment.  It is a question you haven’t asked and wouldn’t even think about right now, as life in hospital is consumed with physio sessions and all things related to your recovery.  Mummy is trying not to let her mind wander and think that far ahead; she is desperately hoping that there is time before the show, for you to recover.  The truth is, like many other answers to similar questions of the future…we just don’t know.  The uncertainty is nerve wracking and unsettling.  The only way we can deal with it, is to stay positive and support each other.

You love to dance, no matter what the music or wherever you are.  Casting my mind back to nearly 8 years ago, you were my bridesmaid.  What a little beauty you were in your dress.  At just over 12 months old, you were toddling along chasing bubbles and mesmerising everyone with your gorgeous, dimpled smile.

When the music came on, you had a little dance with Mummy…it had been a busy day for you and despite the late hour, you had a little bop before drifting off to sleep in your pushchair with the beat of Chesney Hawkes’, ‘I am the One and Only’ in the background.  You’re probably wondering what on earth this song is.  Just trust me when I say it is a ‘classic’ from the early 1990s, which combined with the emotion of a wedding and a few glasses of wine, suddenly becomes the anthem of everyone’s youth as they belt out the chorus.  Anyway, my point is, that as soon as you could walk you were on your feet dancing.  There was no stopping you!

How many times have you and Ella choreographed your own dances and performed these to us at family gatherings?  I’ve lost count.  You and Ella would take the recital very seriously and on occasions we have been presented with homemade tickets in the lead up to the day.  You’ve even sold sweets after your show to earn pocket money!  You’re both such professionals.  Ava has started to join in and Jack has made the odd appearance, but it’s your duets with Ella that we tend to remember the most.  Ella has such grace and poise when she dances, while you provide the energy and expression.  I really wish that we could press the ‘rewind’ button so that we could once again see you prancing, leaping, jumping, twirling and giving it your all in the living room.  I hope and pray that you’ll be doing it again.  Setting the music to the correct place, positioning yourself to start the dance, checking where you are in relation to Ella to ensure you have enough room.  I wonder if you remember Greta’s birthday celebrations at my house last December, where I found the Just Dance Kids pop songs on Youtube and we had immense fun copying their moves and bopping along to the likes of One Direction.  I was quite heavily pregnant with Rafe, but I tried to join in and Uncle Damian made us literally laugh out loud with his two left feet!  We had such a wonderful time and it is when I sit here reflecting in my living room, where laughter filled this space and we strutted our best moves in front of the television, it suddenly feels empty; I almost kick myself that we took these truly happy moments for granted.  We simply assumed, like most people, that there would be many more occasions such as these.  We will have an abundance of more happy times together in the future.  I promise we will.  I can’t promise that they will be the same, but we will try our best.  I really hope, sweetheart, that you’ll be able to spin about happily to the music, entertaining us again, just as you have so many times before.

It has been nearly four weeks since you suffered a stroke and in that time, you would not believe the support we have had from people who know you, family friends, your school and the wider community.  We never imagined that people would be so kind as to start fundraising in your name.  There have been articles in the local papers all about you with the lovely photograph of you taken in Majorca, wearing Nanny’s hat.  I’ve seen that picture of you so many times; I never once anticipated that it would be used in the papers as they printed your story about having a childhood stroke.  I don’t think any of us will look at that photograph in quite the same way again.  In any other circumstance, you would think that you were famous having your name and face in the paper, but unfortunately, the reason for this unexpected fame has left us devastated.  Your school and teachers all know you so well and were upset when they heard the news of your stroke.  As I have written so many times already, your bubbly personality and happy disposition leave a mark on everyone who meets you and I think this is true of your teachers and peers.  The school wanted to organise an event and contribute to the fundraising appeal.  Of course, they know how much you love to dance and thus decided to co-ordinate a danceathon in which classes of children would take it in turns to dance throughout the day from 9.15am to 3.15pm.  When I looked in Jacob’s book bag and found the ‘Danceathon’ letter it brought tears to my eyes.  It was such a thoughtful idea and it felt heartwarming that the ‘school family’ were rallying around you.  As we arrived at school in the morning, music was blasting across the playground and the children were adorned in sparkly clothes; some had even gone as far to decorate their t-shirts in glitter to spell out #teamevie.   In your hospital bed, Mummy had dressed you in your sparkly pineapple top so you were in a way, part of the day’s proceedings.  Mummy and Daddy played some music and you attempted to wave your left arm and leg in time to the beat.  You seemed quite happy to join in like this but to your family it hurt.

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You should have been dancing like you used to, with all your friends around you.   At the end of the day, as I arrived to pick Jacob up from school, I can honestly say that the atmosphere was charged with such energy and vivacity.  Children were greeting their mums and dads, chanting your name.  Even down the lane, echoes of ‘E-V-I-E’ could be heard.  How convenient that your Mummy and Daddy should choose a four-letter name for you, as it slotted effortlessly into the lyrics of ‘YMCA’!  Your whole school had been taught the movements to the newly reworded, ‘E-V-I-E’ and performed this all together in the hall.  Jacob came bounding out to show me the dance and was full of such enthusiasm; he was desperate for me to record him.  He just didn’t realise the sadness behind the day.  Later in the afternoon, a video of the Danceathon was posted on Facebook and the local radio station, touch fm also displayed it on their social media page.  All of this was overwhelming to think that it was done for you.  If I’m totally honest, it felt bittersweet.  I can’t tell you how very much appreciated it is, that your school has organised such an event.   The amount of money that they raised was phenomenal.  Our family is completely overwhelmed by the support, kindness and love we have been shown by people, who have been moved by you and what has happened to you.  Grateful just doesn’t cover it.

But for us, our hearts still ache.  If you could have been there, I think you would have been slightly embarrassed by all the attention, almost non-believing that it was all about you, but ultimately you would have loved it!  That’s the thing…. it was all about you, but you weren’t there doing what you love…dancing.  That’s the bitter part.  The reason behind this fantastic Danceathon.  The reason why every pupil and member of staff were getting into the groove and singing your name.  The stroke.  The major stroke.  The unexpected, uninvited, unwanted, cruel and damaging stroke.  The reason why all this is happening.  The stroke that, for the time being, has stolen your ability to walk and dance. That’s why it is painful and bittersweet because deep down in our hearts, we don’t want any of this to be happening.

I love dancing and I believe in the power of dance, as it can be healing in so many ways.  This week, the physiotherapists have commented on how your core muscles are very strong as a result of your ballet and jazz.  During a session, they decided to tap into some of your ballet moves in hope that it might stimulate the muscle memory in your leg.  It was great to hear that the physiotherapist, who hadn’t personally seen you for a week, was really impressed with the progress you had made, as she could feel muscle activity in your thigh and knee.  You were asked to stand between two bars and started with your feet in first position; you then stretched your left foot to the side into second position and then back to first position.  The physiotherapist noted that while you were standing supported on your right leg,  you were able to straighten your right knee.  All progress is good and this made our day.  However, I know that it was difficult for Mummy to watch, as you kept wanting to do your ballet, just as you would do exercises at the barre.  The way you swept your left arm into second position made you look like a little ballerina and highlighted your love of dance, displayed glimmers of your ability and served as a painful reminder of what has been snatched from you.

 

On Tuesday 11th July we received a video recording from Mummy and Daddy.  There was cheering and tears of happiness in your family’s households.  It was the best news we had heard in weeks.  You could move your quadriceps in your right thigh!  Whoop!  Whoop! Your tummy muscles were also working incredibly hard to aid the movement in your thigh but nevertheless, there was MOVEMENT.  Although your lower leg and foot is still yet to wake up, this was a massive milestone!

If we thought Tuesday was a cause for celebration, you only went and outdid yourself on Thursday 13th July during your physio session.  This really did warrant loud whoops and fresh tears… YOU WALKED! To the outside world and the untrained eye, it looks like you are walking with the steady hands of the physiotherapists guiding you.  The truth is, you can’t just stand up.  You can’t just get up and walk.  But the fact that you were up on your feet was so uplifting and for now, that’s a tremendous start.  I know that you heavily rely on your left leg to take the weight and do most of the work, as you drag your right leg forward.  I know that your tummy muscles are continuing to provide necessary support to your left leg, so that it can pull your right leg along.  I know that it took two physiotherapists to support you, as you walked across the room.  I know that your right leg was extremely wobbly as you took slow steps.   I know that Mummy and Daddy have been told that you must not try to stand on your own – which you have attempted, you little monkey – because your right leg could give way at any point resulting in further damage that we do not want to have to contend with, on top of everything else.  I know that these first steps do not mean that you’ll suddenly be able to spring from your chair and walk, run and dance.  I know that there is still a very long way to go before you can walk again on your own.  But it is a start.  In three and a half weeks, you have made it this far and we are so proud of you.  I think that everyone who is a member of #teamevie will be having their own mini celebration as they read about this achievement.

 

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Your leg support arrived on Tuesday and was fitted, as it has been custom made.  You have to wear it for several hours a day to ensure your foot is straight and to support your ankle so that the muscles do not weaken.

 

You look very cool as the boot has been constructed in your choice of colour and design!  The functional electrical stimulation (FES) continues and the Occupational Therapist is doing activities with you in the attempt to recover movement in your right arm and hand.  We just have to be patient and have faith that this will be effective and lead you to a full recovery

Progress is slow, but we have to be thankful for any progress, no matter how small.  It will be long and possibly very slow, but you’ll get there.  Then one day, we hope and pray, you will once again be our dancing queen, performing with your beautiful dimpled smile.  Who knows, you may even find yourself cutting moves to Chesney Hawkes’, ‘I am the One and Only’ in the future (because it is a ‘classic’, no matter what anyone else says, despite it being his only hit!)  Indeed, my little darling, you are the one and only, our Evie!

In the words of Ren McCormack in the dancing themed film, ‘Footloose’, which remains one of my favourites and you are yet to see (I’m showing my age!), there is ‘a time to laugh… and a time to weep.  A time to mourn… and there is a time to dance’.  This is your time to heal and you will have a time to dance.

#teamevie #rainbowgirl #dancingqueen

Lots and lots of love,

Auntie Diane xxx

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4 Replies to “Dancing Queen”

  1. I am overjoyed that Evie has got back movements and is walking albeit aided. This is fantastic news and I am sure in time Evie, you will be strutting your stuff once again. Perhaps a walk-a-thon this time round the village to show off your huge determined spirit. ❤️

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  2. Thanks Fiona, I’ve referred to it as ‘walking’ because for us it seemed such an achievement from where she was lying in bed unable to hold up her head, but she can’t even stand unaided. Getting back to properly walking with weight on both feet is going to be a long process. She can’t put weight on her right leg as it will more than likely give way. But these are baby steps which we can only pray will lead her in the right direction. Thank you for support, it is very much appreciated.

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  3. Beautiful words as always Diane, it is so good to hear that Evie is making progress. Thinking of all of you, lots of love xx

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