Baby, You’re a Firework!

Dearest Evie,

Do you remember all the times we’ve danced around your living room?  Leaping and jumping about to tunes like, ‘Gangnam Style’ and various Katy Perry numbers.  I recall when ‘Part of Me’ and ‘Firework’ were on repeat.  Simple family times that we’ve taken for granted, but weren’t they so much fun?!  Since Nanny has been diagnosed with cancer, our family has made a conscious decision to grab life by the hands and make the most of it.  Life is precious. Tomorrow is not promised.  Growing old is a privilege.  Prior to last week, your Mummy and I have had many conversations about the future and your Mummy had even written a list of all the places in the world she still wanted to visit.  This is one of the main reasons that you all went to Switzerland in May half-term.  It was all part of the ‘live life to the full’ plan.  Just as we were trying to do that, life goes and stops us in our tracks.  It teaches us how fragile life is and how it can change in a split second…as if the last 12 months hadn’t taught us anything!

As the days have passed by since your stroke, I feel like I have almost sleepwalked through them, but my sadness, despair, anxiety and helplessness is nothing compared to that of your parents.  My mind constantly wanders and finds you.  Whilst watching Jacob and Greta playing and Rafe is sleeping, I find myself trawling through memories of you and wondering; hopelessly searching for answers as to how we are, where we are.

To be honest, our family has been shell-shocked by what has happened.  A stroke in childhood is rare.  So, why on earth did it have to happen to you?  Questions I can’t answer.  Nobody can.  Each day we hope and pray that there will be improvements because what else can we do?  Mummy and Daddy are still beside themselves as they can only watch and wait.  They feel helpless.  Daddy is protective of you.  They lovingly tend to your every need and are doing all they can to stimulate your brain so that it will create new networks in order for you to regain your speech and mobility.    Mummy doesn’t leave your bedside and Daddy spends long hours at the hospital each day.  They are utterly devoted to you.  I know they don’t feel it, but they are being so brave.

I think you can see from these letters that this stroke has rocked our world to the core. But it’s not about us.  You, dear Evie, are at the centre of it.  It’s you who is affected by this.  It’s you, sweetheart, who has to face the repercussions of this cruel stroke.  But we are here for you.  You’ll never be alone.  Despite their inner turmoil, your Mummy and Daddy are being incredibly strong for you.  They are determined to make your time in hospital as comfortable as possible and try to keep everything positive for you, while inside they are nursing heavy hearts.

Each day you have become more alert but because you have limited words, it is difficult to ascertain how much you understand.  Last Wednesday, it was decided that because you can’t swallow properly it would be better to insert a feeding tube  You, dear Evie, had different ideas.  You were not happy with the tube at all.  Whether it was uncomfortable or you were confused by what it was, is unclear.  Nanny prefers to believe that it was your fighting spirit showing the doctors that you would not lie there helpless being fed via a tube…so you pulled it out!  Instead, you now have to eat pureed or softer food, which Daddy and Mummy feed you.  I know the pureed food isn’t that nice but you enjoy the ice-cream and yoghurt.  You’ve always been known as our ‘Yoghurt Monster’!

I’m not going to lie, we have been beyond terrified that this stroke may have robbed you of your personality.  Anyone who knows you, would agree that you are full of such character; you are bubbly, fun. feisty and vivacious. I’m sure Ella, Jack and Ava may add ‘annoying’ to that list, like any siblings would at times, but I know that they are missing you and your cheeky ways.  I know that people always say wonderful things about someone when they’re ill, but this is the truth.  You and your sibling (I don’t want Ella telling me off) are all individual with great personalities.  But you have a definite uniqueness, a zest for life that I’m finding difficult to put into words.  We have feared that your beautiful inner sparkle may have been extinguished by this stroke.  We could only wait and see, but just the thought of it was heartbreaking.

Nanny and Granddad came to visit you on Thursday morning.  You melted Granddad’s heart when you managed to call him, ‘Granddy’.  Auntie Joanne and Uncle Paul visited you on Friday although you were very sleepy after a busy day.  You’d had another MRI, a heart scan, blood tests and physio.  Auntie Lai and Uncle Tim haven’t visited yet as they live so far away, but you are constantly in their thoughts, as they love you so much.

Uncle Damian and I visited you on Thursday afternoon and I was desperate to see you.  It was so hard to watch you lying in bed, having to be propped up by pillows as you can’t yet support yourself.  You tried to communicate but you get locked on words.  Your response to most people is “Daddy” until you try to copy the names that you are told.  You called me ‘Di Di’ at first without anyone prompting you and then with Mummy’s help, you were able to say, ‘Diane’.  You found it difficult to say ‘Damian’ and so also called him ‘Diane’.  A visual communication board has been made for you to help you indicate when you are hungry or thirsty.  It also enables you to express your feelings.  While we were there, you used it to show you were hungry…typical Evie!

One of the things you ate was an ice lolly.  Mummy was slightly worried about it breaking off in your mouth.  But, you little horror, had ideas of your own!  You kept biting it off, much to your parents’ dismay, as they were scared you might choke.  As legitimate as their concern was, for Uncle Damian and I, this was quite uplifting.  Just before you took a bite, you gave us that mischievous, Evie smile, where your eyes light up.  You knew exactly what you were doing and you thought it was funny!

You’ve been given different toys and activities to use by the physiotherapists.  It has been so important to try to get you to do physical tasks, to strengthen your motor skills. Mummy has been doing playdough with you:

During our visit, you started to play catch with Uncle Damian, throwing a sensory ball back and forth.  Considering you were throwing and catching with your left hand, your strength was amazing.  Uncle Damian is renowned for being a wind-up merchant and being the instigator of many silly games (pile-ons and ice cube chases) so you often get competitive with him.  It was brilliant to see you throwing the ball harder and harder with a smile on your face.  Uncle Damian then suggested that you target your Mummy on the other side of your room and hit her on the head with the ball (this is a standard idea from him!)  I’ll never forget how you poised your arm ready to aim the ball at your Mummy, then you turned your face to Uncle Damian, gave him your wicked smile and hurtled it at him.  You had clearly tried to take him by surprise!  That’s our girl!  That’s Evie!  There’s your inner sparkle!

It’s only natural that there have been times since Thursday when you have pointed to the ‘sad’ card.  As you have gained more awareness of what is going on, you have found it frustrating that your arm is floppy and you can’t say what you want.  More and more, it is obvious that you know what you want to say, but what comes out is not what you intend.  However, you are coping with this so well and we are incredibly proud of you. Mummy and Daddy have endeavoured to try to cheer you as best they can.  It often seems impossible to find happiness when faced with such horrendous circumstances, but your Mummy and Daddy are trying:

The brain is a marvellous organ and it has been a wonder that although your vocabulary is sparse at the moment, your ability to speak in a Scottish accent has come into its own!   This kind of thing brings light entertainment at a dark time, even if for a fleeting moment.

Your recovery may be long but we are so grateful that your special sparkle is still in there.  I can’t tell you how much support we have had from extended family, friends and even people we don’t know.  You have touched their hearts.

So in the words of Katy Perry,

‘Cause baby you’re a firework
Come on show ’em what your worth
Make ’em go “Oh, oh, oh!”
As you shoot across the sky-y-y

You’re a little firecracker Evie.  Keep on fighting!

#teamevie

Lots and lots of love,

Auntie Diane xx