19th June 2017

Dearest Evie,

This is probably one of the hardest things I’ve ever had to write.  Where to start?  I’m not sure how much you remember of what happened last Monday.  I know one thing for certain, it is a day your Mummy and Daddy would much rather erase from their memories.  I would like to think that you remember very little.

Let’s face it, this isn’t the first time that you’ve given us a fright.  In October 2012, you fell off the slide and badly broke your arm.  You had to have several operations to pin the bone and spent a while in plaster.  If that wasn’t bad enough, you then had to be admitted to hospital in December 2015 with meningitis.  You were so poorly and your Mummy and Daddy stayed by your bedside, just as they are doing now.  So this is the third thing!  Please let it be the last!

I’ve always been someone who keeps dates in their heads and I just happen to know exactly what we were doing on 19th June 2016.  It was Father’s Day and we were celebrating in your garden with a family BBQ.  Do you remember the running races? Uncle Damian and your Daddy raced up the garden thinking they were in some Olympic sprint and your Daddy crashed into the hedge!  So hilarious!!  It was an afternoon full of fun and laughter. We were all playing football and everything seemed simple.  Shall I let you into a secret?  It was also the day that Uncle Damian and I told all the grown-ups in our family that we were having another baby.  Sorry, we didn’t tell you and the other children – we know how great you are at keeping secrets…for five minutes!  So you see Evie, that day was the very definition of happiness. If someone had tapped me on the shoulder and given me a glimpse to precisely one year into the future, I would never have believed it!

Fast forward one year and you were enjoying a long weekend thanks to a Teacher Education Day at school.  Your Mummy and Daddy had planned a fun-packed day out at West Midlands Safari Park with you, Jack and Ava.  Ella had to go to school but she didn’t seem to mind.  Last Monday, Jacob also had a day off school and Greta was home from nursery.  It was really hot, so after a quick trip to the supermarket we spent the morning playing in the paddling pool and had just sat down to a picnic when the phone began to ring.  Uncle Damian answered it and I could tell from his voice that whoever was on the other end of the phone was upset.  I tried to whisper, ‘who is it?’, ‘what’s wrong?’ but Uncle Damian stood there fully focused on the conversation.  I was trying desperately to piece together the snippets of information I had heard…’its so hot’, ‘dehydration’, ‘rides’, ‘what do you want me to do?’  What was going on?  Then I heard, ‘what does Kin-Chung think?’ Right, so it’s Suzy, your Mummy, on the phone.  I began to pester Uncle Damian, asking what it was about until he passed the phone to me.  It was your Mummy’s voice on the end, but she was upset, panicked in fact.  You had collapsed and they didn’t know why.  You were just about to go on a ride when you had run to your Mummy with your hand to your forehead, complaining your head hurt and you were crying.  Your Mummy knew something was wrong and took you to find Daddy.  That’s when you collapsed.  An ambulance had been called but hadn’t yet arrived.  The staff at the park were looking after Ava and Jack.  Being at home, we didn’t really understand the extent of what was going on.  We had texts and calls from your Mummy, but to be honest Monday afternoon and evening were a complete blur as the doctors tried to determine exactly what had happened.  All anyone could do was wait.

I felt completely helpless and checked my phone every minute desperately hoping that there would be news that you were ok.  Uncle Damian went to the hospital to collect Jack and Ava, as your Daddy went to join Mummy at your side.  Once Uncle Damian had arrived home, Nanny, Granddad, Ella and Auntie Joanne came round my house.  We did what our family does best, we stuck together and tried to make the rest of the day normal and fun for your siblings and cousins.  All the grown-ups felt distraught…some pacing, some quiet, others talkative and some sobbing (I wonder if you can guess who did what?) The not knowing, the uncertainty and the thought that you were extremely poorly sent us gradually in to despair.  But to Ella, Jack, Ava, Jacob and Greta, everything was going to be fine.

Yet, this was nothing compared to what your poor Mummy and Daddy were going through.  I wasn’t there and as close as I am to your Mummy, I can’t possibly put myself in her shoes as she watched you collapse in your Daddy’s arms, unresponsive and floppy. I wasn’t there in the ambulance as you were hooked up to the machines and Mummy was told that they were going to by-pass A&E and that a bed was waiting for you.  I wasn’t there when you were rushed into Resus and Mummy was instructed to wait outside in the corridor, praying as her rainbow baby was being taken care of by the doctors and nurses.  I wasn’t there by your bedside, watching your every breath just as Mummy and Daddy were.  I wasn’t with Daddy when he had to make sure that Jack and Ava were ok; trying to hold it together in front of them and then drive to the hospital, full of fear as he didn’t know what he might find when he arrived.  I know this is probably hard to read, but I said this is a heartfelt and honest account, so here we go, I’m going to be brutally honest .  Evie, I wasn’t there when Mummy and Daddy held each other in devastation and desperation, as they honestly believed that you were leaving them; that their rainbow baby was also going to say goodbye. Mummy told me about the intensity of this nightmare a few days later and I don’t think my imagination can recreate this hell they were living, not that we’d ever want to relive it. You really scared us!

You may have a long recovery as you try to regain the movement on your right side and recover your speech, but we are just grateful that you are here.  That you are alive.  The thought of losing you is just too much to bear.

Our family is strong and we pulled together.  You’d be so proud of Nanny.  Do you remember how poorly she has been?  Well, Nanny has found some super power inner strength (but then we always knew she was Wonder Woman without the costume!) and she is looking after Ella, Ava and Jack with Granddad.

When we woke up last Tuesday, we awakened into the nightmare all over again, that’s if any of us actually managed to get any sleep.  I know your Mummy and Daddy didn’t.  Any news? Any updates?  We kept in constant communication.  This is what we knew… you had lost mobility down your right side, you had lost your speech and all you wanted to do was sleep. A brain bleed had been the first possible diagnosis but it came as a huge relief when this was ruled out. The CT scan didn’t reveal anything and doctors believed that you had experienced a seizure which had resulted in a condition called Todd’s Palsy.  Most of us did, what most desperate people do in these situations and consulted Google!!  We tried to piece together as much medical information as we could in the hope that this would give us some reassurance.  The doctors echoed what our research had suggested, the symptoms of Todd’s Palsy are temporary and tend to subside within 48 hours meaning that the patient can make a full recovery in several days,  This was promising.  This was positive.  This was hopeful.  This we hung on to and told ourselves that you’d be back to your bubbly self by Friday.

Your Daddy is a highly intelligent man with a very caring nature and he loves all his children so, so much.  But I don’t tend to have the same conversations with him as I do with your Mummy, so I can only say what I spoke about with her.  You’re a lucky girl, as you have a wonderful Mummy, who utterly adores you and will do anything for you (even if it meant being covered in tarantuals to make you better!!!)  Your Mummy knows the very bones of you and she kept saying to me, that she thought you’d had a stroke.  You could call it a mother’s intuition but she could not rest and be completely convinced that it was Todd’s Palsy.

Tick, tock…Tick, tock… Tick, tock… Every minute passed incredibly slowly yet the 48 hour window of recovery from Todd’s Palsy was hurtling towards us.  I remember speaking to Mummy, trying to convince her that it might just take a bit longer for the Todd’s Palsy to relinquish its hold.  Your Mummy would not be consoled.  More and more tears were shed.  Doctors now wanted to do a MRI scan but were concerned that you wouldn’t be able to lie still within the scanner.  Having had many MRI scans myself on my head, I know how noisy it is and how potentially frightening it might be for you, not being able to communicate your fears.  The doctors decided to give you a general anaesthetic to ensure you stayed still, as you were going to have to be in there for an hour.

The results came through quickly and it wasn’t what any of us wanted to hear…..you’d had a stroke.  I didn’t even know that children have strokes.  But why? Why? Specialists from Birmingham Children’s Hospital became involved as they tried to establish what had caused a healthy 8-year old to have a stroke.  Now, a week on, we still don’t have the answer and we’re not sure we ever will.

This last week has been truly heartbreaking.  I love the power of words, but I really can’t find any that are effective enough in describing the pain that your Mummy and Daddy felt and still do, as you recover.  Your whole family has been knocked by this and have felt helpless as you lie in your hospital bed, unable to sit it or stand by yourself.  Oh Evie, our beautiful Evie, how you have scared everyone and yet its not your fault.  What has happened to you is rare, apparently 5 in 100,000 children aged 0 to 19 may suffer one.  So, why you?  I can’t answer that either.  I know its unfair, but as you have become more awake and alert you aren’t complaining.  You’re so brave.

One thing I do know, is this…you have a Mummy and Daddy who will fight this with you. They will not rest until you are back to bouncing and dancing around.  Your family are here for you and will be there for you every step of the way, no matter how long it takes.

I also know from all the texts, messages and comments on Facebook that there are hundreds of people out there who are willing you to get better.  They are rooting for you to make small steps of progress everyday.  Together, we are all Team Evie and we will never leave your side.  Next year on the 19th June, I want to be able to say, ‘what a difference a year makes!  Look how far you’ve come!’

There is a saying that things happen in threes.  So please, please Evie.  You’ve had your three.  Don’t scare us like that ever again!

Lots and lots of love,

Auntie Diane

xxx