Pippa Rea

Pippa's Journey with a Brain Tumour

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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Forgive Me If….

Three months after Pippa has passed and I am still numb.  Please forgive me if I:

don’t speak

don’t get out of the car to watch the footy

don’t sympathise if your child has a cold or a cough over winter

don’t look like I’m following the conversation (I’m not)

don’t socialise

don’t look you in the eye

don’t say I’m sorry that your mother, father, grandparent, uncle, aunt, friend…has passed away at the age of 50, 60,70, 80, 90…  I’m sorry for you but I simply cannot say the words because I am just so raw for Pippa, James, Patrick and myself.  She was only eleven years old!  It’s so unfair!

I still go to tell Pippa things.  I still go to show her a funny photo or a photo of a baby.  I still want to tell her something I have seen or heard or done.  I can’t though and I never remember that; I always have to remind myself that I just can’t anymore.  My little shadow is no longer there.  I go into Pippa’s room every night and every morning opening and closing the blinds and turning lamps on and off.  She would like that I am doing that.

A friend has given me two quotes recently.  They very aptly put into words these past three months:

She’s in the sun, the wind, the rain,

she’s in the air you breathe with every breath you take.

she sings a song of hope and cheer, there’s no more pain, no more fear.

You’ll see her in the clouds above, hear her whisper words of love,

you’ll be together before too long, until then listen for her song.

Pippa’s songs are everywhere.  I especially love it when people tell me about moments when songs that they hear remind them of Pippa.

In her own words it is seconds, minutes, hours, days, weeks, months…

Pippa, there is not a month, week, day, hour, minute or second that I don’t think of you.

Sometimes it’s okay if the only thing you did today was breathe.

I am managing to breathe, but most days at some point I have to manage my breathing.  

Forgive me, but it is so heartbreakingly unfair and I am so terribly heartbroken.

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Public Notice of Thanks

On Saturday I placed a public notice in the local paper extending our personal thanks to the community.  It would be remiss of me not to extend that thanks further to friends and family across Victoria, Australia and around the world.  Thus, in continuing to use this blog as a form of communication:

Pippa Rea Thank You

I feel like I will be numb forever and I feel like I will always be looking around for her or wanting to tell her something, hold her hand, laugh, sing……..waiting for her to run into the room and give me a big cuddle.  Sometimes I even think (or perhaps wish) the beautiful photos that she ensured surrounded me before she went would come to life.  It’s a hole that will always be with me and will never be filled but I am eternally grateful to everyone for their support.

True to Pippa and her love of music, words to another song from her playlist come to mind…….

At the end of the day some you win, some you don’t,

So I’m glad that I’m here with some friends that I know,

Always there with a smile saying, “You’re not alone”.

My darling little girl…………

Love

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A Story of a Little Girl and some Very Big Boys

The Warrnambool Seaside Basketball Tournament was held on the weekend.  Some friends had organised a Milkshake and Pancake stand to help raise money to send their team to the Nationals in Canberra…….. A little girl decided she would help sell milkshakes and pancakes and sat tirelessly for hours on Saturday doing a very good job of taking orders and money.

Pippa and Andy

Pippa and Andy

Eventually her mum suggested she have a break and sit down for a bit and watch a basketball game.  She was torn, but she agreed only on the condition that she could return to her post.  Off she went to watch another team of friends – the under 16 boys teams. On returning to her post the selling area seemed full of the big u18s boys taking their turn at duty.  No, where there is a will there is a way and there was still room for the little girl to get in there and help!  Which of course leaded to lots of cheeky fun with the big boys.

Anyone for a Milkshake?

Anyone for a Milkshake?

When it was time for their next game, one of the big boys suggested that the little girl should come with them and sit on the bench.  That was the start of an incredible bond………

Walk with me Pippa

Walk with me Pippa

The little girl sat on the big boys bench for every game.  On the second day of the tournament, the little girl  didn’t sell any milkshakes, she spent every minute being part of the team on and off the court.  She sat on the bench and received her quota of pats on the back and rubs on the head as the big boys were subbed on and off the bench alongside her.  She handed out the lollies in the breaks.  In the huddles if she found herself on the outside a big arm would come from somewhere and pull the little girl into the centre.  She put her little hand in with their big ones for the motivational chant before they would run onto court.  In between matches she just ‘hung’ with the big boys and had fun.

The big boys won their under 18s grand final and the little girl was thanked for the part she played in their team and received her trophy.  The little girl is very proud of her trophy and it goes everywhere with her.

The mums and dads were proud of their big boys and the way they included the little girl with such kindness and warmth.  The little girl’s mum’s heart was touched and she is very grateful to the big boys knowing that they made a beautiful and selfless impact on the little girl.  It goes to show that you don’t have to be a famous sports person to be looked up to.  On the weekend, The Warrnambool Seahawks had an under 18s team of heroes and the little girl spent the weekend admiring the big boys and being part of their basketball team.  She was thrilled.

Slam Dunk....with a bit of help

Slam Dunk….with a bit of help

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Paris Dreaming

This week Pippa’s treatment has come to a conclusion.  The chemotherapy medication is not working against the the tumour and it is growing.

We are now going to live her dream and take Pippa to Paris.  We are organising that at the moment and plan to leave as soon as possible.

The next phase is going to be about having fun and enjoying our time together as a family.  Together with Pippa and her brothers, I am taking little steps, minute by minute, day by day making one decision at a time.

The support and care we have received on this journey so far has been incredible.  I will continue to update this blog throughout the rest of our journey as it serves not only as a wonderful purpose of communication but also provides us with a fantastic way of recording and sharing our memories.

I have held suspicions close to my heart right through this but I have always said I will never post anything on this blog my children don’t know.  They are each processing the information they received this week in their own individual way.  We don’t have a lot of answers to a lot of questions, but they will come in time and I am sure Pippa will lead the way once again.  In the meantime we are going to have FUN.

The concern and understanding of everyone who reads this helps us and we look forward to posting pictures of Pippa and her French dreams soon.

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Hospital Waiting Games

It just can’t be avoided and sometimes the waiting is just so painfully long.  This week the waiting around kept us so late I had to drive the majority of the way home in the dark.

After two and a half hours in the eye clinic waiting room we were told in a 2 minute consult the redness will go in a couple of weeks and there is now single vision straight ahead………Pippa and I had already figured out both those pieces of information on our own now that the soreness has eased and the weeping has subsided.  Really, the only person who can truly know how beneficial the surgery has been is Pippa. I can’t imagine what it was like for her to see double all the time and only she can decide whether the resulting single vision is enough for her to feel a bit more normal. Healing, time and the messages her very clever brain receives and interprets will let her know that.  At least once the redness has gone he eye will sit more central and look normal which in itself is rather important for a 10 year old girl.

Luckily I have an unwritten rule that we always combine hospital trips with something fun.  I try my hardest not to just make our trips about waiting rooms and appointments.  Last week it was dinner in Lygon St with cousins; this week it was a games night with Julie and yoga in the morning followed by breakfast with Pippa’s favourite puppies, Chip and Frenchie before heading to the hospital.  Thank goodness we came away from the games night with a new game to entertain us in the busy waiting room (aptly named “Too Many Monkeys”). I’m absolutely positive I won the most rounds………although after two and a half hours it all became a bit of a blur!

There was no chance of staying down again Thursday night – there was a very pressing reason to come back.  Today is Book Week dress up day at school.  Pippa had been planning for weeks and had an outfit that she had made with Nan ready for her to go dressed up as Agatha Christie’s “Miss Marple”.  I don’t think I’ve ever seen brown and tweed look so stylish!

 

 

 

 

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