And So It Begins…

Dearest Evie,

It has been nearly three weeks.  Three weeks you’ve been in hospital.  Where has that time gone?  For your Mummy and Daddy, who are with you in hospital everyday, it is a totally different experience compared to the rest of your family, who are at home.  As your Auntie, even I can’t begin to imagine what your Mummy and Daddy have been through and are continuing to slowly wade through.  For them, as they sit and watch you, help you, feed you, support you and as doctors come and go, some days seem never ending, while others whirl by in a blur.  Here, we put our heads down and drive forward in our attempts to keep everything as ‘normal’ as possible for Ella, Jack and Ava.  Except it isn’t normal because you aren’t here with them.  Every night when Ava goes to bed, you aren’t there in your shared room; your bed is empty and it’s quiet.  I know Ava misses you at bedtime but Nanny is doing her best to settle Ava to sleep.   We all do our best to carry on.  The school run still needs to be done, the washing pile needs sorting, dinner must be cooked and homework has to be completed.  When it comes to the ironing though, just pass that over to Auntie Joanne (thank goodness, as it’s a job I’m not keen on!) We’ve switched on our autopilot reflex and we’re trying our best to keep everything ticking over while Mummy and Daddy concentrate on your recovery.  However, while we busy ourselves, there isn’t a moment that goes by when we don’t think of you.  I know that I speak for all our family, when I write that our minds constantly wander and there you are.

Wherever I look, I find you.  Last Friday, Uncle Damian and I took Greta and Rafe swimming.  Have I told you how much Rafe loves to be in the water?  I already felt guilty because we were doing something enjoyable as a family while you were having to attend your next physio session.  As we stored our belongings away in the locker, I thought of what you might be doing and then tried to focus on Rafe and Greta.  Literally, seconds later, it hit me again.  We walked past the viewing area where many school children were spectating along with adults, whom I assume were teaching staff.  In the main pool, children were competing in races and there were swimming instructors organising the events.  As my eyes drank it all in, my mind catapulted itself straight into a conversation that I’d had not long ago with your Mummy.  She had told me how you had represented your school in the local gala and how you had been so excited that you’d been chosen to compete in the backstroke event.  The year before, you hadn’t quite made it on the team much to your disappointment, as you hadn’t regained your stamina and fitness from having meningitis. The fact that this year, you had been chosen was a big achievement in your eyes and Mummy was so proud of you, as she was there to watch and support you in your race.  This dialogue flooded my mind and I can’t tell you how I just about managed to hold back the tears as we went to the studio pool.  All I can say is thank goodness for waterproof mascara!

Each day without fail, I walk down School Lane and I remember how only a few weeks prior to your stroke, Uncle Damian and I were on our way home with Rafe from the school drop off, when you appeared out of the gate with a boy from your class and your teacher, Mrs. Charnley.  It’s strange how this was such a fleeting moment and one that perhaps wouldn’t usually be that significant in my memory store, but yet I can recall every detail.  I can see you now, almost skipping down the path, full of enthusiasm as you were going to attend a poetry workshop at another school.  I can see us following you down the lane, as you told me how you were looking forward to going and then chatted to your friend, who you then invited very politely, to get in the car first.  I can see you climbing in the car and laughing with your friend as you strapped yourself in and waved us goodbye.  It pains me to think that you’re not at school, learning and interacting with your friends.  It pains me that at that time, you were living in the moment, enjoying life and without warning it was taken away from you.  I’m glad you were living your life in the present and I’m grateful that you weren’t worrying about the future.  But I’m afraid all I can do right now, is remember the past, take the future one day at a time and get through the present as best I can.  I think this is how all your family feels.

I take Ava and Greta to ballet each Saturday and I wait in the dressing room as they go into class.  Having been a pupil at the same ballet school for many years, I have a whole catalogue of memories involving lessons, show rehearsals and dancing exams.  However, as I sit there and gaze around the room, it is not those instances that come to the forefront of my mind.  Instead, it’s you. While Greta is doing her class, you should be dancing upstairs.  You should be bounding up the stairs with your usual energy, ready to start your show rehearsal.  But you aren’t and I can feel your absence.  In October, the school is staging a ballet show and you were all going to be performing in it.  Ella, you, Ava and Greta.  All the girls together.  Greta’s first show.  The fact that the stroke has stolen your ability to dance at the moment is hard to accept.  We try not to think that far ahead.  But it is something that we will have to face.

So you see Evie, we are all missing you and thinking about you.  You’re such a huge part of our lives.  It is especially difficult because you are a girl with such a bubbly, fun and enthusiastic personality; you were always active and full of energy.  For the moment, the stroke is cruelly denying you of your mobility, which is so unfair and unjust for such a  lively, young girl.  In all honesty, we feel helpless here.  We all wish that we could be more proactive in your recovery.  If love was a tangible medicine, you would have bounced back to your usual self on that Monday evening, as your family alone love you immensely and the love that we could have engulfed you in would have been immeasurable.  Unfortunately, sweetheart, although the potency of love and the power of positive thinking is very much an essential and valuable component of any type of recovery, your journey will also involve hard work, time and patience.  And so it begins…

As soon as the MRI confirmed that you’d had a stroke, a major stroke in fact, a programme for recovery started to be unveiled.  A team of physiotherapists, speech therapists and occupational therapists became involved and at first started to work on your core strength in order for you to support yourself when sitting.  Even on your birthday, you were doing exercises focused on your core muscles and you never once showed signs of complaint.  The physiotherapists have commented on how strong your muscles are, which is definitely a result of all the ballet and jazz you have done.  Mummy and Daddy did play-doh with you to strengthen your fine motor skills in your left hand.

Here you are doing physio on your birthday.

Just under two weeks ago, you were transferred to the Children’s Hospital where you were examined further and the physiotherapy continued.  Your recovery is slow but we are thankful for the tiny steps, such as being able to now hold up your own head and eat proper food rather than purees, which weren’t really to your taste!  It is very important that your brain doesn’t ‘forget’ you have a right arm and leg, so you have to wear a leg and wrist support to keep the limbs straighter to prevent your hand from curling and your ankle muscles from weakening.  At first you only had to wear the wrist support at night, but now you wear it all the time.  In typical Evie style, you chose to have a zebra print leg support, which put a smile on our faces.

Being measured for your leg support.

You have also been using something very similar to a TENS machine (like the one pregnant women use in labour) on your shoulder, forearm and lower leg to try to encourage movement and stimulate the brain into making new connections with your right side.  The physio team refer to this as functional electrical stimulation (FES). Mummy says it’s really strange because you are unable to move your hand or foot, yet when the TENS machine is positioned on your forearm, it causes your right fingers to imitate the Mexican wave.  Whether this is having an impact is difficult to tell, as progress is much slower than we would prefer.  The physiotherapist did say that during a session, they felt muscle movement in your thigh and shoulder and this is a positive sign, no matter how small.

At the moment, we can’t be given any guarantees.  We just don’t know if you’ll make a full recovery.  But I’m just going to put this out there…. we are going to give it our best shot! We won’t ever give up, it isn’t our nature.  I say ‘our’ because, sweetheart, you’ll never be on your own.  We will all do anything in our power to aid your recovery. Despite your daily physio sessions, Mummy and Daddy have been told that if you do regain movement in your right limbs, the motor skills in your hand probably won’t be strong enough for you to write with it.  This was a blow!  I know it’s not the end of the world having to learn to write with your left hand, but it was evidence of the stroke changing you in a slight way and we were determined that we would try to get you back to your usual self.  Your usual self is right-handed.  Interestingly, adults deal with things differently to children.  Indeed, children are a lot more resilient than we give them credit for.  When I asked your Mummy how you had reacted to being told that you would have to learn to write with your left hand, she said that you had simply accepted it and taken it in your stride.  And so writing with your left hand begins!  You now join Mummy, Daddy and Ava in the ‘leftie camp’.  You may not know this, but your Mummy has often teased that left-handed individuals are more intelligent, so the fact that you have had to train yourself to use your left hand after all that you’ve been through shows how brilliant you are.  Teamed with your glasses (which you liked wearing because you thought they made you look smart!!), your left-handedness will definitely be sign of your intelligence.  You have a teacher that comes to do one to one work with you and you’ve been painting and drawing with your left hand.  I’m so proud of you.  We are all proud of you.  There aren’t many children who would adapt so quickly and be able to draw to this standard after only a day or two.

Your speech is very gradually improving; the speech therapists have used the term, ‘expressive dysphagia’ to describe your speech, where what you say isn’t always what you are thinking, instead you’ll say something random.  The speech and language team still need to do more analysis of your assessments and then we may have a more refined picture of what is going on with your speech and how it can be supported further.  You can sometimes say the right thing and that is improving but very slowly; you can also say the right word(s) if you’re prompted with the first letter or part of a word.  Overall your vocabulary has definitely broadened.  Yesterday you were able to recognise and name ‘Rafe’ correctly by yourself, which you couldn’t before.  There are moments when you simply can’t get the words out and you’re not sure what you could say to get your message through to us.  On these occasions, it is undoubtedly frustrating for you. Nevertheless, you have proven you are adaptable and have sometimes written words down – with your left hand – to indicate your need or want.  You’ve always been a girl who loves her food and now your appetite is back, the hospital food doesn’t seem to satisfy your tummy.  So there have been times when you have written ‘shop’ on your board.  This is a clear and concise message to Mummy and Daddy to go to the shop to buy more food for you.  Some things don’t change! (Virtual high-five here!)

Your doctors have been wonderful but sometimes the terminology used to describe what has happened to you, is hard to bear, think about, accept.  It is difficult to come to terms with.  When the doctors discuss the consequences of your stroke with Mummy and Daddy, they refer to your ‘brain injury’.  Words no parent wants to hear about their child. As you grow up, I truly hope and pray that this never hinders or prevents you from leading a fulfilling life.  I don’t want this medical definition to scare you.  If anything, it should be worn as a badge of honour because you’ll be able to see how much you’ve achieved after this tragic episode in your life. This description is heartbreaking and something that we haven’t quite digested yet. But regardless of this, your Mummy and Daddy have been very active in stimulating you mentally.  Wherever you go, wherever you may be, there is no escaping…the times tables!!  As someone who works in the educational profession, I can tell you that times tables are highly important as they can help you with all sorts of maths.  So your Mummy chose to test you on your 12 times table.  To begin with, she asked you the questions and you attempted to give the answers verbally,  but random responses came out.  Your Mummy decided to write a mixture of multiplications down and using your left hand, you wrote the answers.  All correct!  This was such positive news. You may not be able to say the answers yet, but you do know them.  Well done Evie! You clever, clever girl!

Your resilience and ability to adapt is both remarkable and highly commendable.  You have developed your own way of moving your right leg about by compensating with your left leg.  Sometimes it looks like you can actually move your right leg when in fact you are cheating and depending on your left.  But we don’t want you to get used to this.  Some of your physio has focused on weight bearing and trying to get you to put weight on your right foot.  This is all part of your recovery and although this is irritatingly slow, it is something that you never complain about.  You’re such a brave girl.

Sensory activities are also part of the programme.  You have feeling in your right limbs but not movement.  This week, the teacher at the hospital planned for you to partake in an activity where you played with water.  You didn’t particularly like the feel of the cold water on your right hand and Mummy had to explain that it’s because you haven’t had this type of input to your hand in a while, but it’s okay for it to feel strange and it will help your hand to wake up.

Playing with water and always smiling!  Although your one dimple is still hiding, I’m sure it will reappear soon.

Yesterday when I saw you, your sparky personality was definitely there.  We all find it painful to see you in a wheelchair but it didn’t seem to upset you.  You smiled and waved at me like the Queen, as Granddad pushed you past me.  For the moment, the wheel chair enables you to move about easily.  But we can be patient.  We will wait.  Although the phrase ‘speedy recovery’ is used a lot, we have accepted that this will not be a quick process.  It is going to be long but we are in this together.  You are doing so well and trying really hard.  You are bound to feel frustrated, irritated and angry at times.  That is only natural.  However small the step, we’ll be behind you and beside you.

Whether, you’re right-handed or left-handed, it really doesn’t matter in the end!  You’re here and we’ve got you.  This isn’t the summer we expected, but this different chapter in your life has begun and rainbow girl, everyone is proud of how you are dealing with it.

Lots and lots of love,

Auntie Diane

xxx