Pippa Rea

Pippa's Journey with a Brain Tumour

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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Blooms of Yellow

It is so beautiful to see Pippa’s Pots bursting into yellow blooms!  The boys and I love receiving all the photos that everyone is sending us.  All the same but all so different with   many reminding us of Pippa’s long legs.  Some are indoors, some outside.  Some bloomed early and some are still waiting.  Some pots even bloomed on special significant days.  It truly is beautiful.  And for us it is comforting that these pots are bringing smiles to everyone – smiles for Pippa.

The bulbs in front of our house that Pippa planted in 2012 have been blooming continuously – each single bulb is now a large clump of many bulbs.  They have been able to provide us with vases of yellow jonquils inside the house and beside Pippa’s bed every week since they started to bloom.  The bulbs in the Pippa Pots will multiply meaning that each autumn they can be dug up and moved to a garden bed whilst still leaving one in the pot.

 

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The bulbs Pippa planted in 2012 – each clump starting from one bulb

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So many beautiful blooms

The most incredible story that is happening for us though is Nibbles.  Nibbles likes to bolt lightening fast into the house the minute the door is open and he then casually hops up to Pippa’s bedroom where he sniffs around and just hangs out until he’s ready to hop back out to the garden.  I even had to unzip a bag of her clothes that was under her bed because he would just sit there and paw at them.  Anyone who witnesses him doing this is pretty much left speechless.

However, as far as the jonquils are concerned Nibbles’ actions are just as spine chilling. When we first got Nibbles it was very apparent we could not grow anything – herbs, veggies, flower pots, even our chilli plant were all (“Nibbled”) eaten.  Flowers we have been sent all go to the back yard for Nibbles to enjoy between the house and the green bin. He’s not fussy, he eats them all leaving just the stalks.  In fact, Nibbles has even received his own delivery of flowers to happily nibble on!

When we were doing the pots up James wanted to plant some bulbs in a patch of dirt that Nibbles liked to roll around in…..none of us were too hopeful that they would get past the sprouting stage.  One day I saw Nibbles in the dirt with the green shoots certain he was eating them.  On closer investigation James reported that no, Nibbles was only scratching his neck on them.  Pippa used to pat him on his face and under his neck and he would go to sleep while she did it.

Incredibly Nibbles has left these flowers to bloom tall doing nothing more than sitting next to them.  Patrick once asked that perhaps if we became buddhist would Pippa be able to be reincarnated as Nibbles when she died?  We didn’t need to convert, but we all feel that Pippa is very much in Nibbles.

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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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A Birthday with no Birthday Girl

That’s precisely what it was.  Saturday 13th February.  The day when Pippa should have been jumping on my bed waking me up excited to open her 12th birthday presents.

Instead we woke silently and with no excitement.   We had what Pippa would have ordered for her birthday breakfast – pancakes complete with nutella and strawberries of course.  Thanks to a thoughtful friend of Pippa’s we even had a present to open.

The boys and I had a list to work through to get ourselves ready for the day.  I most importantly had to make Pippa’s favourite chocolate mousse for her birthday dinner dessert.  We needed to pack the car with things to take to the beach.  A picnic had to be made and a cool bag organised to keep the drinks and food cold seeing as we were going to be there all afternoon.  A birthday sign to make it a party of course was required.  Flowers for the birthday girl.  Chocolate Brownie.  The motions were rolling.

My phone was busy with texts and calls like on any other birthday. The rule in our house on your birthday is that the birthday person has to answer every phone call.  There was no birthday girl to do that.

The day was beautiful, the sun warm and the sky and the water at Port Fairy’s East beach were both crystal clear and breathtakingly spectacular.  The only thing missing was the birthday girl turning cartwheels on the sand and calling out to me from the water, “Come on mum, why don’t you come in for a swim the water’s beautiful!” when I know too well it’s a touch on the refreshingly icy side of chilly.   But that’s what she would have said with a cheeky grin on her face.

So many people came and went across the afternoon and I am incredibly grateful to everyone.  It really was a strategy to help James, Patrick and me cope with what was always going to be a difficult day.  Pippa described her 11th birthday as her best ever despite not being able to talk, eat or walk.   I think Saturday was the best we could manage for her 12th birthday.  It was in fact perfect, but…there was no birthday girl.  I felt numb and empty.

People were sprawled all over the sand, on the grass bank, in and out of the water.  Flowers were placed at the base of her memorial seat.  Pippa’s friends swam, surfed, played cricket, built sand castles, used her kayak.  At first everyone tentatively looked and marvelled at the seat but eventually the ice somehow broke and photos started to be taken of her friends sitting, standing and playing on it.

At one point I overheard some of the young boys standing around Pippa’s seat having a chat.  They were talking about death and what it feels like to die.  The result of this gorgeous conversation was that it doesn’t hurt to die and that it doesn’t matter how long it takes for you to die because when someone starts to die you go to the place where your dreams and memories are and that’s where you stay.  You feel only good things and you don’t know time.  And then they ran off back to the beach.  It was utterly beautiful and I don’t know if these boys came up with this on their own or whether one of them had previously discussed it with some wonderful parents.    Regardless, what I do know is that they certainly wouldn’t have been standing around a headstone in a cemetery or a plaque at crematorium having this conversation.  This simple, casual chat makes the memorial seat even more special invoking such raw and innocent discussions in children that will help them all deal with such a difficult topic.

Toward the end of the day darling little 4 year old Lottie came up to me and said, “Ginya, I’ve been looking all day but I can’t see Pippa!  I’m cross with her that she’s not here!”  I said, “Oh Lottie, when I went in for a swim before I’m sure I saw her.”  Together we looked up to the sky.  It was no longer clear as some whispy clouds were floating around.  We strained to see and eventually there she was – the faint crescent of the moon appeared in between the clouds.  Lottie was absolutely thrilled to see that Pippa hadn’t missed her birthday.  To Lottie, Pippa lives in the moon and she loves seeing her during the day time.  They are always special days for Lottie.

We came home after a long day in the sun a little tired and with presents and cards to open and read.  The day was not unlike any beach birthday party.  It was simply missing three very integral parts:

  • there was no happy birthday song
  • there was no birthday cake
  • there was no birthday girl

Saturday 13th February was Pippa’s 12th birthday but she will never be twelve.  Instead, she will always and forever be “Legs Eleven”.

Our thanks to everyone who made our day bearable.  I love this very special photo

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In memory of our beautiful Pippa Rea

13/02/2004 – 28/03/2015

A Nipper at Port fairy SLSC, Pippa loved this beach

Please enjoy the beautiful views 

sitting or playing on her surfboard seat.  

“Happy Memories”

Designed and kindly donated by Bamstone

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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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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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