Pippa Rea

Pippa's Journey with a Brain Tumour

Lighting the way

The following article was first published in the Australian Yoga Journal:

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Standing waist deep in water with rain falling on my face I reminded myself that I don’t believe in the phrase “everything happens for a reason”.  I do, however, believe in coincidences, circumstances, opportunities and fate.   That’s how I came to be in Honolulu, Hawaii, on Memorial Day 2016.   It was dark and I was wearing a now completely wet denim skirt and a black t-shirt, my hair was tied up in a pony tail and my bag slung diagonally across my shoulder tucked under my arm to try and avoid it from getting wet too.  Beside me my sons’ t-shirts were also damp from the soft sprinkling of rain and they certainly would have been more suited wearing board shorts in the beach instead of chinos.

A series of events over a twelve-month period resulted in me taking my two teenage sons to participate in the Annual Lantern Floating Ceremony at Ala Moana Beach Park, Honolulu.  The ceremony is an ancient Shinnyo-en Buddhist tradition representing the interconnection of past, present and future and carrying hope toward a peaceful and harmonious world.  Now, approaching its 20th year, Lantern Floating Hawaii themed “Many Rivers, One Ocean,” brings together all religions and sectors remembering loved ones passed.

Arriving at Ala Moana Beach Park in the morning to collect one of the 6,000 lanterns available we were expecting a long wait.  The line snaked through the lush park under the shade of the trees for hundreds and hundreds of metres.  The air was hot and humid and the grass wet from tropical overnight rain.  By the time it started to move at 10.00am the queue behind us was just as long as the one in front – thousands and thousands of people waiting patiently for their lanterns.  The first had arrived to secure their spot at the front of the line at 4am.  Families who make the ceremony an annual ritual had erected tents and marquees all throughout the park and along the beachfront from 3.30am.  One family I spoke to had been coming for 8 years.  They arrived at 2am but weren’t allowed into the park until after 3 to set up their tent.  Initially, they floated in memory of a family member who had passed prior to their first year.  “Now,” they said, “it is a tradition we will never miss.”  They are one of the first to arrive during the night every year and have their tent positioned so that their place naturally joins the queue about 50 metres back.

Music played, the waft of barbecues could be smelt from every part of the line, children ran around coming to and from the beach, people rode bikes or played games.  There were mattresses, beds, picnic rugs, umbrellas, fully equipped camp kitchens, bikes, toys, coolers, beach gear, tables and chairs; all stretching as far as you could see.  Food stalls are not prominent; the tent community bring their own.  All for just one day.  The scene reflected more of a party atmosphere or festival than a memorial ceremony yet everyone was still revered and I felt a sense of peace and calamity amongst both those waiting in line and those in their makeshift camps.

The queue moved quickly and collecting and writing on our lantern at 10.45am meant our wait in total was only an hour and a half.  The lanterns are environmentally friendly and refurbished by hundreds of volunteers each year to be reused the following one.  Marquee space is provided to write tributes and memories on the lanterns and many were then personalised further in other ways; mostly adorned with flowers and photographs or wrapped in leis.  We decorated ours with fresh frangipanis and photos.

Arriving back at the beach park later in the afternoon our anticipation was confirmed by the sheer mass of people who migrate to this ceremony.  No less than 50,000 adorned the beach and the park, yet, at the same time, there was no jostling for position or views.  It was apparent that some people liked to position themselves in view of the stage, some in front of the large screens, others in the water and others still stretching as far as the eye could see along the sand and around the curve of the bay.  Behind the stage there were even more people covering the rocky point that framed the southern rim of the cove.  Many people were simply wearing swimsuits, there were fully robed Buddhist Monks and everyone else dressed anywhere in between.  Most were barefoot.  We easily managed to position ourselves on the sand, directly behind the VIP area, in front of both the stage and a screen and with easy access to the shoreline.

The open aired stage, although elaborate in statuesque against the palm trees, was simple; pure white with soft subtle lighting continuously changing to compliment the setting sun.  Dramatic Japanese Taiko Drums were the feature on either side and a large cauldron sat high at the front ready for the ceremonious lighting of the “Harmony Flame”.

The ceremony itself lasted an hour and was a colourful and tranquil display of love, peace and harmony commencing with the haunting sound of the blowing of the conch shell out across the colourful beach where sand was no longer visible and the proverbial pin could have been heard to drop.  The sun dipped below the horizon across the water, it’s golden reflection rippling all the way to the shore.

Conversations with strangers confirmed that everyone was there to celebrate love, memories and remembrance:  the security guard who had lost his baby 14 years earlier; families who had travelled from around the world; the volunteer who had lost every female member of her family to cancer; the woman who was floating for a stranger she had met only very briefly but who couldn’t be there in person.  Lanterns were attributed to aunties, uncles, parents, grand parents and most sadly, children and babies.

As the incredible and moving spectacle of the floating began the rain started to fall.  Not heavy, but enough to make sure we were wet waist up as well as waist down.  Thousands of people waded out into the water without care for their clothing releasing their lanterns. The atmosphere was still revered and peaceful.  Even though we were amongst 50,000 people we could very easily have been on our own.  Gradually the bay filled with golden flickering lights; a breathtaking and heart-rending vision that spread and multiplied across the water as each lantern was released.

I thought to myself before we released ours it’s a shame it’s raining, but even so, it didn’t matter.  We released our lantern and pushed it out to join the others.  I watched it float away holding my boys tight and close.  I turned to see my friend busily taking photos of it drifting off.  Looking back out to the sea of candles I saw our lantern had come back.  I had a little chuckle to myself and pushed it away again.  Off it went and again it returned.  I gave it a harder shove.  Again it came back.  I thought they must all be floating back in, perhaps with the tide?  I looked at the other lanterns.  No, they were all slowly making their way out into the bay.  Ours was the only one that seemed to be going in the other direction.  I laughed and cried at the same time.  That was my daughter, always wanting to be with me; my daughter, my best friend, never leaving my side.  A woman had been watching me continually pushing my lantern out to no avail.  She came over to me and gave me a hug and quietly said to me, “It is tradition to say hello and goodbye to your lantern before you release it.  You must do this to allow it to float away.”  This time our lantern went out to join the others.  I must admit, I was a little sad that it did – I liked the feeling that it wanted to stay with me.

By this time the rain started to ease.  “You know,” the woman said, “in Hawaii rain is seen as a blessing.  It is cleansing and it brings healing, peace, growth and life.  Plus it provides us with the loveliest rainbows!  The fact that it started to rain as the floating of the lanterns began is very spiritual and beautiful.”

I looked at her, this woman I didn’t know who instinctively knew she needed to convey this meaning of rain to me.  Tears welled up more in my eyes and rolled freely down my face.  Before a cruel, inoperable and incurable brainstem tumour took the life of my 11-year-old daughter she had drawn a picture of her heaven.  Sitting on top of clouds her heaven was full of life with stars, music, birds, flowers, water, puppy dogs, bunny rabbits and a big yellow castle where she would live.  A long ladder stretched up to her clouds and underneath them was what I thought was rain.  She had corrected me though.  It wasn’t rain, they were the drops of water that I would feel on my face when she needed me to climb the ladder and visit her.

It was circumstances and opportunity that lead us to participate in the Lantern Floating Ceremony surrounded by so many people united together in emotions and gratitude of those gone before.  It was coincidence and destiny that made the woman approach me and explain about tradition and rain which invoked the memory of my daughter’s heaven and her wanting me to know we could still connect after she was gone.

On the 30th May 2016, 14 months and two days after my daughter passed I was standing fully clothed, waist deep in the tropical Hawaiian beach with drops of water on my face and floating lanterns as far as I could see.

That rain was meant to be.  It was fate.

The Lantern Floating Ceremony is held annually on Memorial Day at Ala Moana Beach Park, Honolulu.  

Anyone is welcome to participate in the lantern floating.  Lanterns are given out from 10am-4pm on the day or until they run out.

There is no cost or charge for floating a lantern.

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Nibbles

Nibbles came to us Christmas 4 years ago…..

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He fixed tummy aches, he joined birthday parties and they shared countless punnets of blueberries.  Pippa used to tell him he had a very fat bottom!

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Since the 28th March 2015 he has provided comfort and love and sometimes has even mistakenly been called Pippa.  He would knock on the door to get let in and without fail he would hop up to Pippa’s bedroom.  Every Single Time!  The first thing he did after she left us was to paw and snif at her bagful of clothes.  We have often found him on her bed, with her teddies, playing with her yellow dancing costume and just sitting or sleeping in her room.  He ate every flower that ever entered the vicinity of our back yard except for Yellow Jonquils planted for Pippa – those he would just sit in amongst and sometimes rub his chin on.  He has been known to sit up at the back of the couch and stare at the photo of him and her on our wall – no kidding!

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This Christmas he hopped into Pippa’s room one last time and went to his favourite sleeping spot beside her bag of clothes and her school bag.  He knew exactly what was happening and precisely where he needed to be.  He went to sleep peacefully, I left a candle on all night and he didn’t wake up.

We buried him in our back yard that he had so much joy in.  He is sleeping forever with a carrot, a flower and 2 photos of Pippa, but he is now hopping, running crazily and laughing forever in Pippa’s beautiful heaven….

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Pippa’s Heaven

Darling Nibbles and Darling Pippa……every single day hurts

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Time Heals

Nope, it doesn’t!  

It may to some people.  It may in some circumstance.  Not me.  Not mine.  Time does not heal. Yes, things change, I have needed to reenter “life” but it will never be a carefree, life as I knew it before (everything now is time-lined to before, during or after) and there is always a shadow. My life now will always be fraught with obstacles and hurdles I need to get over; for want of a better word, milestones.  Some I see coming like a freight train.  They’re the obvious ones – the anniversary, the birthday, anyone’s birthday, Christmas, school years…  Others, hit you like a tonne of bricks when you least expect it.  A dog that follows you and then, when you bend down to look at it’s tag, you see it’s called Pippa.  A girl in the street wearing an exact same outfit as her.  A song on the radio.  A phrase.  A sound.  A smell.  Finding something you don’t expect in a cupboard…

It’s a farce to think you only have to make it through the first 12 months.  I think people tell you this to make themselves feel better.  “Once you get through the first year you’ll be right.”  Wrong.  They want to believe that once that first year is over you’ve gone through everything you need to.  It’s not true.  It all just keeps coming. And coming.  In fact, I made the mistake to assume that because I had made it through one birthday I could make it through another.  I couldn’t.  It was worse.  The second birthday without Pippa seemed to bring with it validation.  Reality that there was never ever going to be another birthday with her.  No birthday cuddles, smiles, kisses.  Nothing.  Ever.

Her second anniversary was today.  I felt physically sick and worse as the day went on.  The anxiety in the pit of my stomach just wouldn’t shift no matter how many deep calming breaths I took.  Then there’s everything else.  The primary school graduation.  That was hard – I didn’t function outside of it for the whole week.  The day where she should have started year 7 but didn’t.  Special occasions for James and Patrick where Pippa should be there, bossing them around and most importantly giving them proud little-sister hugs.  This is all just going to go on for ever.  The chasm is never going to close.  Today she’s missing from birthdays and school functions, in years to come she’ll be missing from weddings and births.  And everywhere in between are going to be all the unexpected heartaches that catch me when I’m least prepared.  It’s never going to end.

I don’t think it’s time that heals, it’s just a new kind of life.  A life without Pippa and it still hurts every single day.  I took flowers over to her memorial seat this morning and left them with a note.  I didn’t have to think for one second what to write on that note, I just used Pippa’s very own words:

“Every Second…Every Minute…Every Hour…Every Day…”

It doesn’t change.  Time can’t heal this pain.

 

I have not written here for a while.  Why? Because I tried to write for other reasons.  Reasons that weren’t intrinsic, reasons that were not based on what naturally flowed out of my fingers onto the keyboard.  Thus, I just stopped.  I thought as time had passed then I had to change why I was writing.  I was wrong.  So wrong.  Instead, words have piled up and up in my mind bursting at the seams to get out.  

I could write in a journal or just on a computer document, but I like doing it here.  Im not sure why here is different, but it is.  I can see that a lot of people still visit to read my posts or to see if I’ve posted anything new.  When I first started writing this blog I was just using it as a form of communication.  Now it seems to have become more than that.  I don’t mind that people from all over the world read my posts, that organisations refer other families to my blog.  I am glad to help and I am grateful for all the messages I have received from all over the globe both when I was continually writing and also those encouraging me to start writing again.  

Yes, I still wrote but not on here. One piece I wrote I will post here because it needs to be read by thousands of people.  Words and tears flowed in unison.  It was written for the right reason and that reason is simply to convey it to as many people as I can that may find themselves in a similar situation.  I hope that I can influence others to do what we did so when I post it, share it, please.  

Writing cleanses me and is far more beneficial to me than time. It is an important part of my calamity.  Sometimes, when I knew I really needed to cry but the tears felt like they were stuck, I would type a post and out they would flow.  It would make me feel so much better.  Exhausted, but better.  

I’m going back to writing for the right reasons.  My reasons.  

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How I Dealt with a 12 Month Anniversary

I was cautioned that sometimes the lead up to anniversaries and other significant times may actually end up being worse than the day itself.  Thus, in the best way I know how to deal with things, I launched myself into a project complete with a colour coded, formulated and cross referenced spreadsheet.  What I thought was going to be a distraction in the lead up has ended up being a therapeutic and sharing experience that has involved many and has been graciously received in exactly the way it was intended.  A month later I have nearly finished it.

Let me start with the full story that inspired the project……

Last year in May I went away for a few weeks and returned in June to the garden bed outside our front door full of beautiful yellow jonquil flowers.  These flowers I picked through most of the winter and put in a vase beside Pippa’s bed.  The fact that the jonquils were growing there was not a surprise at all yet last year their existence meant so much more than it had previous years.

In 2012 I had my first year as Co-ordinator of the St Josephs Primary school fair.  A role that I did for 4 years and enjoyed every minute of it.  That first year a friend of mine came to me at the end of the day and said, “Virginia we didn’t sell all the bulbs, why don’t you take some home to your garden?”

“Me plant something and keep it alive?  Hell no, don’t give them to me!”

Jane instead turned to Pippa and proceeded to tell her how to help mum,  “Just throw them onto the garden bed and then poke them into the ground”.  Needless to say we came home late at night with Pippa eagerly carrying bulbs along with everything else she had collected from the day.

Pippa of course insisted we plant the bulbs together.  I can vividly see her standing there trowing them and then us helping each other poke them in.  Of course she adjusted a few landings so that they were positioned how she wanted them but she laughed and giggled and had so much fun.  These bulbs flowered from the very first winter.  Unfortunately, Jane tragically lost her brother  since then and perhaps that is why the memory of Jane and Pippa and the bulbs is so vivid.  Jane literally planted this seed in our lives and now those little bulbs that started as a few mean so much more to me.

At some point when I was picking them last year I thought about how nice it would be to have bulbs everywhere in memory of Pippa.  Thus, Project “Pippa’s Pot” was born.  Pots were sourced and the knowledge on the ability to actually grow a bulb in a pot was sought.  James has drilled holes in every single pot, Patrick has planted the majority of the bulbs, friends have helped me and most importantly, help from Armelle and Ana was imperative in the writing and bow-tying areas.  Even Chloe turned up on a day we were elbows deep in ribbon which was just perfect timing.  The help from those three girls meant so much to me for Pippa.  The project transcended tears and sadness and instead (through Pippa) brought laughter, joy and togetherness at a time when it was always going to be difficult.

To date we have made and delivered 150 pots.  They have been left locally, in Melbourne, to the Royal Childrens Day Oncology Garden and in the special entrance “Pippa Garden” at Peter Mac.  I have to clock up a few more miles to deliver the last that are still waiting for me to take them to their homes – two are heading to Adelaide, a couple in Ballarat, a few more in Melbourne, one or two locally and one that needs to go for a ride on the ferry which means poor me has to have lunch in Sorrento one day soon.  Unfortunately I can’t get them to QLD or WA but I suspect bulbs may not go so well in FNQ.  No doubt I will  have missed someone and I am sorry, but please if you or, in particular,  your child, need one forgive me and just shoot me a message – I will happily make another.  I had to stop at some point.  Of course I keep thinking of more that I could have done (and perhaps will still do) – that is Pippa though, so many people who love her.  To my many cousins, for your children, you will find a Pippa Pot with your parents’ homes for your families to enjoy the blooms.  It’s been lovely to hear everyone talking about whether or not their “Pippa Pot” has started to sprout and just as lovely to receive pictures of them sprouting.

It truly has been a beautiful, therapeutic project.  One that brings a smile to everyone’s face when they see their green tip sprouting.  Once the flowers have bloomed this year they will naturally die off, multiply and bloom again with more next year and so on.  In essence it is a project about the cycle of life and death.  Pippa is no doubt blooming again herself at the top of the Faraway Tree, dancing forever amongst the moon and the stars.

Many people have asked me about caring for their “Pippa Pot” so with a huge thanks to my lovely and expert gardening legend friend, here are some very detailed instructions.  Remember though, if I can grow a garden bed full……..

 

LOOKING AFTER YOUR “PIPPA POT”

POSITION

Best outside in a sunny location (at least 6 hours of direct sun per day) if possible but a very sunny windowsill will likely be OK.  Flowering pots can be brought inside for short periods to enjoy but avoid heated environments.

WHEN TO WATER

It is really important not to overwater your pot! Many people water ‘just in case’ it needs water and end up damaging the root system and ultimately the plant.

You can tell if your plant needs water by these types of observation…

  1. Pushing a finger gently into the top of the soil and if your finger comes out pretty dry and clean, the plant needs a drink. If potting mix sticks to your skin, its damp – don’t water.
  2. The potting mix will look very light brown if dry and almost black if its damp
  3. Lifting your pot – dry pots are lighter than wet/damp ones. You can get a feel over time for this.

AMOUNT

2-4 cups of water should be ample to saturate the soil. Apply it slowly to allow it to soak in.  After you water, your pot will feel a bit heavier if the watering has soaked in well.  A deep soaking with a few days to dry out in between is much better for the plant than a half cup of water every day. At watering, you want to see water freely running out the holes at the base. DO NOT be tempted to put a dish or saucer under the pot to catch the water. Free drainage is important. If you wish to put a tray underneath for aesthetics or protection of a surface, make sure there is never any water left in the tray.

FREQUENCY

There is no hard and fast rule on whether to water every few days, weekly etc…. it is far better to ASSESS whether the plant needs water every couple of days by the above methods and just water accordingly, as I said, overwatering can cause damage so regular attention is the key, NOT necessarily regular watering.

FERTILISER

A fortnightly liquid feed that replaces one of your regular waterings is highly recommended but this is help the flowering for the following season, the energy required for flowering this winter/spring is already stored in the bulb. If you can’t be bothered, some slow release feed as per packet directions is very easy and only needed once or twice a year.

ONGOING CARE

As the flowers finish, resist the temptation to cut off the dying and untidy foliage. The plants must die down naturally as the bulb is drawing back the nutrients from the leaves to store up energy for next years flowering.

Keep the bulb in the pot or lift the bulb and store in a cool, dark place. If left in the pot, keep it on the DRY side over summer while it is dormant and increase watering in autumn again when the plant goes back into active growth.

As far as what we did on the actual day, the 28th March?  Well, I got up early and with a very dear friend visited Pippa’s Surfboard Seat at Port Fairy’s East Beach.  Our local extended family then joined us at our home surrounded by Pippas things, photos and of course, Nibbles who spent most of the morning sniffing his way around Pippa’s bedroom.  We lit candles, did a meditation and had a brunch before all getting on a charted bus and heading to the MCG where we met up with some other special family and friends to watch Geelong v Hawthorn.  A match that I think James, Patrick and I will now go to every Easter Monday.  Pippa absolutely loved going to the footy to watch Geelong play.  Yes, the day was long, but there is no other way Pippa would have wanted us to do it.  A little bit of reverence but a whole lot of fun.  I just wish she was right there with us.

For James and Patrick I made a large framed collage filled with individual memories of photos close to their own hearts.  The one photo they shared the same was that beautiful one from Paris when Pippa flung the doors open the doors of the hotel the minute we arrived, walked out on to the balcony, turned around and declared, “Mum, I love Paris and I want to live here forever!”  In their frame  they also share a poem that I adapted especially for them (original author unknown).  I can’t read it without crying but every word is true….

Pippa,

You’re in the sun, the sea, the wind, the rain,

You’re in the air I breathe with every breath I take.

You sing a song of hope and cheer, always and forever near.

I see you in the sky above, hear you whisper words of love.

With your eyes so blue, your hair so long, you’re always with me, never gone.

Your cheeky laugh helps me be alright, even though I miss you day and night.

I smile because you are my Pippa, now and for always my little sister.

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I need her to be remembered forever. She is the most beautiful girl inside and out.

I miss my little darling, my little girl, my daughter and my best friend so much.  That will never ever change no matter how many anniversaries go by.

 

 

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12 Months since that precious last breath

There are no words at the moment. 

We are having a family day and in true Pippa style and the way we lived the last 2 years of her life we have organised a fun activity in her memory. We love her every minute of every day and we will have her smile and laughter with us always. 

Today is no different. 

   
   

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A New School Year

I guess milestones, particularly those in the first 12 months, are going mean that I will inevitably get asked the same question over and over again.  That’s OK.  I know that it means people care.  I’ve come to understand that and instead of twisting and churning inside I simply answer the best I can at the time.  It’s still hard and I understand that it’s just as hard for other people to speak to me because I know they don’t know what to say and are scared of saying the wrong thing.  That’s OK too.  I don’t mind.  The best thing to say is to actually say something about Pippa.  Knowing that others do not forget her and also have fond memories is the best comfort I can receive.

How did I manage the Christmas and New Year period?  Well, yes, it was difficult.  We ran away to WA to my sister, brother-in-law and adult nieces.   That was the right place to be.  In fact, Christmas Day was manageable.  Of course there were tears and a lot of them.  In fact, at one point I looked around and the whole lot of us were crying.  I had prepared and strategised in the lead up and I think that helped get through what was a very difficult day.  Pippa loved Christmas.  She always methodically wrote Christmas cards.  She was chief present wrapper and decorator.  Just like any little girl.  She especially loved it when Christmas was at our house.  Boy did she have James and Patrick organised!

What I wasn’t prepared for though was halfway between Christmas and New Year.  That’s when it really hit me.  I’d managed Christmas Day but then what?  A new year was on it’s way and I would be starting it without Pippa.  With one less person in our family.  What did I have to look forward to?  What did I have to celebrate?  Neither an old year passed nor a new year coming.  You see, I didn’t want 2015 to end because it was the last year I was ever going to have a living memory of Pippa.  2016 or any year to come was never going to give me that.  I felt like that from now on each new year will just leave her further and further behind.  Over the holidays there were so many tragic deaths of children.  My heart went out to every one of those parents.  People often say to me they cannot imagine what I am going through.  I honestly don’t think there could ever be anything more painful than losing your child.

Now I find myself at a new school year.  A year that Pippa should be in year 6, excited about being a leader at school and looking forward to secondary school next year.  I try not to think about that but last week I had to go into school to collect Pippa’s tub.  Yes, you would think I had done that ages ago, but I couldn’t bring myself to do it last year.  I thought I would be OK because I had been to every day of school with her so there wouldn’t be any surprises.  I was wrong.  In the box along with her books and pencil case was her school report which had been put together with beautiful messages and pictures from her classmates.  A report that not only reflected Pippa’s ability academically, but showed me again how much she meant to everyone else and the incredible person she was.

Now everyone is back to school.  Parents shed tears as their children start prep, others swell with pride as theirs start secondary school, some are nervous that they will miss theirs terribly as they send them off to boarding school and Pippa’s classmates become the big grade six leaders of their school.  James and Patrick head into year 10 and year 8 but Pippa goes nowhere.  Patrick is not my youngest.  I will never get to send my youngest child off anywhere.  She’s already gone and she will never come home.  Not at the end of the day like most school children nor the end of the term like the boarders.

Pippa is never ever going to or coming home from school again.

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