Pippa Rea

Pippa's Journey with a Brain Tumour

Ten Fingers, Ten Toes and a Cute little Button Nose

28 September, 6 months.  James decided to dig deep into his wardrobe and have a clean out.  A feat generally unheard of from a teenage boy!  I didn’t realise he was even doing it until he emerged carrying a box.  Apologising to me he handed me the box telling me he thought that in it were some birthday cards.  James’ bedroom used to be Pippa’s before I moved her into a room close to mine.  Close so I could hear her every breath every night.  And then, later,  I moved her even closer – right into my room.  James was correct.  In the box was a collection of birthday cards of Pippa’s.  I knew this without lifting the lid.  But lift the lid I did anyway.  To my amazement sitting on the very top of some of her birthday cards from when she was a toddler were two ultrasound pictures.  They were from twelve years ago to the day.  The hairs stood up on the back of my neck, my heart stopped and I burst into tears.

Ten fingers and ten toes.  As parents we all check and count with the same intensity of looking at a four leaf clover – making sure we’re counting correctly.  We listen for the first cry – a sign of good, healthy lungs.  We marvel at our newborn’s instinct to attach to the breast and suckle.  They scrunch up their little bodies so used to being curled up in the womb and then time stands still when they first lock eyes with their mother.  Perfect moments of bliss.  Pippa was all that.  Perfect in every way a tiny little newborn should be.  Perfect in the way that all mothers want and hope that their newborns are.  She was born at 39 weeks measuring 48cms and weighing 8 pounds 1 ounce.  ‘Short and fat’ I remembered my brother calling her!  She had an Apgar score of 9 at 1minute and 10 at 5minutes.  She breastfed immediately.  She slept perfectly.  She rarely (in fact I could almost say never) cried.  Pippa was utterly perfect.  A blessing to James, Patrick and me.  Utterly adored.  A treasure we only had for eleven years.

Ten fingers, ten toes, a cute little button nose and a time bomb ticking inside her brain.  I found myself wondering what if I had have known then? What if, at her 20 week ultrasound I knew what twelve years time was going to bring me?  Of course I would have not done a thing.  How could I not have a life full of Pippa for eleven years?  How could Pippa not have a life of eleven years?  Would have our lives been different if I had known what was going to happen?  They most certainly would have.  I know how I was for the 2 years I did know what was going to happen.  A living hell every time I shut my eyes.  I shudder at the thought of having to do that for 11 years.  I’m grateful that twelve years ago I didn’t know what lay ahead.  I would not have wanted that crystal ball.

I then found myself wondering about the next 12 years.  What would the crystal ball show if Pippa hadn’t had a time bomb in her head?  Would she grow up OK?  Unscathed?  The 6 o’clock news doesn’t give us much comfort for what lies ahead – fears for teenagers and young adults; and the fears for our daughters are possibly worse than those for our sons.  I found myself asking what if I just accepted the time bomb and alleviated those fears?  No was the very quick answer.   I would take any fear that I could possibly ever have for the future if it meant that Pippa was still here.  We can hold our children tightly and fear for their safety, their wellbeing and their future.  But I can’t hold Pippa anymore.  To be able to hold her, feel her, hear her, see her smile…far outweighs any fears that the newspapers and televisions can put in front of me.

Instead I have new fears.  Fears for me, James and Patrick in a life and a future without Pippa.  Fears for our wellbeing.  Fears for the scars that Pippa’s brothers will forever carry.  A tragic burden they should never have to endure.  Heartache.

Count as we might, superstitions or not, it turns out that ten fingers and ten toes cannot guarantee us anything.  Not life.  Not happiness.  Not health.

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Innocently Beautifully Sad

It’s now been more than five months since we lost our beautiful Pippa.

As the day approached (the 28th of every month seems to loom as a dark shadow slowly creeping up to engulf me) I thought I was prepared and in control, expecting how my feelings would unfold and what events would mark the day. I was wrong.

I thought that the “five months since losing Pippa” was going to be marked by the beautiful, selfless and humbling gesture shown by Hayley. It wasn’t.

On the morning of Friday 28th August (5 months) I could not ignore the fact that it was “book week” and everywhere I looked were primary aged students (Pippa’s school friends) dressed up as characters from books. I found myself wondering what Pippa would have gone dressed up as?  I have photos of her dressed up as Miss Marple from Agatha Christie, Gabriella from High School Musical (yes, I had made her produce a book!) and my favourite, up a tree as Koala Lou.

Would Pippa have gone as a character from the Faraway Tree?  No, because if she weren’t dying she wouldn’t have been searching for comfort and solace in the magical stories of the Faraway Tree and its warming characters with its mystical lands listening to chapter after chapter every night for the last four months of her life. Would she have gone dressed up as Ruby Red Shoes visiting Paris? No, because she probably wouldn’t have received the book as a gift on her 11th birthday as we wouldn’t have taken a trip to Paris if she weren’t dying.   What character would Pippa have dressed up as for book week in grade 5?  I don’t know.  One of many “I don’t knows” I’m going to face as I gingerly bypass small and not so small milestones after losing a daughter at the precious age of 11 years to an incurable brainstem tumour.

I thought that the “five months since losing Pippa” was going to be marked by costumes and smiling happy faces of other children dressed up for book week. It wasn’t.

Instead, Pippa’s four-year-old friend, Amyius, innocently marked the “five months since losing Pippa”.

I had bumped into Amyuis in one of Pippa’s favourite shops only the Friday before.  Pippa had bought me many little gifts from this homewares’ shop and had decided it, along with her favourite clothing shop, would be good places for her to have her first part time jobs when she turned 14 years and 9 months old (to be precise).

It had been a while since I had seen Amyius and he had not been to our house since Pippa was lying in her bed the days after she passed.  When he came then he was quiet, tip-toeing around careful not to wake her.  Amyius looked at me that day in the shop with a sad little face and told me he always asks his mum, “When is Pippa going to come home so she can eat chips and play trains with me?”   He told me his mum says she’s not coming home.  It was almost like he was hoping that I would prove his mum wrong and correct the answer he had been given.  He gave me a cuddle and let me carry him and his sad little face to the car.

(Pippa took great joy in showing anyone this “isn’t he just so cute?” video of Amyius sending Pippa a message very early on in her diagnosis hoping she gets better soon so she can eat chips and play trains with him again.)

Coinidently, last Friday night (five months) Amyius came around to our house.  This tiny little boy who I have only ever seen cuddle his family and Pippa, gave me another cuddle, pointed to a photo of Pippa and said, “I miss her”.

Later, as football was being watched and chatter was around the table and in the lounge room Amyius and I went quietly to look at all the photos of Pippa.  We ended up in Pippa’s bedroom. Every night I draw the curtains and turn a lamp on.  There’s a few different lamps in Pippa’s room and I turn on whichever of them I feel like at the time.  This night though, for some reason, I had taken a lamp down from on her bookcase, placed it beside her bed and turned that one on.  I had not done this before.  It was a light a friend from school had given Pippa in probably only her last weeks. It has stars of blue and red that glow on the walls and the roof.  Pippa couldn’t use it to go to sleep with as her friend had wanted her to because her eyes didn’t close properly and therefore the projecting lights were too bright.  We did, however, often to turn it on and look at all the beautiful stars it would make around the room. She liked getting me to move it to different positions and heights as each change would alter the “constellation”.

Amyius walked into Pippa’s room and was immediately captivated by the stars.  He was dazzled! He marvelled at the stars, how they changed and at how much he loved Pippa and her room.  He wandered around asking me questions, looking under her bed, touching things and always coming back to the beautiful stars.  He found some jewel stickers that had fallen under her day bed (covered in teddies) and asked if he could stick the love heart ones on Pippa’s bed for her?  He did.  He picked up her little cow pillow pet that sits on her bed beside her pillow.  He cuddled it.  It smells just like Pippa.   When he realised this he went along every other teddy that sits against her pillow on her bed.  He picked them all up, cuddled them and smelt them.  Each of them smelt like Pippa – Sprinkles, Geoffrey, Henry, Monty and Nibbles Puppet.

Pippa's teddies on her bed

He hopped over to the other side of the bed and using Nibbles Puppet ducked down and performed a puppet show for me in which he was Nibbles, Pippa and Amyius.  He told me that the stars were his and Pippa’s stars – hers were the red ones and his were the blue ones.  They were together in the stars.  He said, “When I go home and go to bed and pray to Pippa tonight I will tell her how beautiful the stars in her room are and how they are sparkling for me and her”.  I told him she could see him in her room and she already knew he liked them.

Eventually Amyius asked me if Pippa was ever going to come back to her room and her bed. With my eyes filled with tears, grateful for a dark room and stars sparkling on the walls I told him, “No, our darling Pippa wasn’t going to come back.”  He knelt down beside her bed and lay his head on her doona.  “Well then,” he said, “maybe I could come and have a sleepover in Pippa’s bed so I can smell her teddies.”

He cuddled me again and then we had to go and get his mum to show her Pippa’s room and have her smell Pippa’s teddies.

 

That’s how five months after losing Pippa was marked………eloquently and innocently and oh so sadly beautiful by little her four-year-old friend.

 

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