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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Big Brothers

I was originally going to put this post on the end of the last entry, but it needs it’s own post simply because in the future I want to make sure I don’t forget about it at the bottom of a page.

James and Patrick continue to step up to the plate and each day fulfil their role of the world’s most loved and loving brothers who help in every way.  Just like me their exhaustion and patience is tested.  Just like Pippa they get sad and frustrated.  Their love for their sister, however, never falters.  Day after day they display their incredible skill of  bringing Pippa up if she is down; making the time they have with her the best it can be.  Their creativity flows and they lift Pippa’s emotions turning the simplest of situations into shrieks of laughter.  Every little girl needs to know she’s adored by her big brothers.

Pippa knows.

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Happy Birthday Pippa

I keep forgetting what Pippa did for her 10th birthday so I looked back on photos……..then I remembered.  It was a sleep over party with 6 friends.  It started off like any normal 10 year old’s birthday but then in the middle of the night things went pear shaped and Pippa ended up with a visit by the doctor and then a hospital admission the next morning.  Not much fun in the end.

The start of last year’s party

Twelve months on, Pippa is now Eleven and despite everything else she is still just like any other ten year old excited in anticipation.  She went to bed with “1 more sleep till my birthday”

One More Sleep

Adding to the  build up, Pippa started receiving a few cards and gifts early including a special delivery of her favourite flowers…….

Frangipanis

I have to be truthful and say we are in a place where we never thought we would be.  Never dared dream of being.  Even though things are different and things are hard we wouldn’t swap it for the alternative.  So many people have helped me pull a very challenging birthday together in a short space of time, I am eternally grateful and I hope Pippa has lots of fun.

Mostly though, tonight, I have been taken by Pippa’s wonderful brothers  and the thought and effort they have gone to not only buy her gifts that she can enjoy (and have sooooooo much fun) with each of them, but create a lounge room of colour and fun that she will wake up to………My heart has melted with their energy and exuberance.  I am just so proud of them.

The simple fact that James and Patrick came straight home from school this evening, cancelled their cricket training, organised themselves (including those to ferry them around their shopping lists) and did everything they have done without any input from me (but a little assistance from their hand picked balloon blowing expert) is an incredible indication of their love for their sister.

My divine Pippa is 11 and not even the worst brain tumour in the world was going to prove itself more powerful than her.  Yet again she is bouncing back and having some good days.  I cannot believe her strength and her amazing courage and determination to live the best life she can.

Happy 11th Birthday darling Pippa.

“Girl, You’re Amazing Just the Way You Are”………..Pippa, You Always Have Been and You Always Will Be.

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Challenge Fair

The Challenge Fair was very different this year in comparison to what it was last year.  The fair itself was still amazing – an array of rides, food, drinks, activities and Christmas presents for all the children.  A very generous event from the team at Challenge.  The sun was shining again and we took Claudia and Will along with us as our “family”.  The difference this year was that Pippa could not run around like all the other children from one ride to the next; her smile only appeared a couple of times rather than being permanently planted on her face.  James and Patrick were her pillars – by her side all the time.

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