Pippa Rea

Pippa's Journey with a Brain Tumour

It’s Hard

on February 10, 2015

We are trying not to be hermits and still like little visits from friends to brighten up our days – even if it’s just to sit and watch an episode of Glee or Modern Family. Sometimes it may take me a while to listen to a voicemails and I may not be able to reply to a text or an email bit I thank everyone for thinking of us and trying to help in a situation that is helpless.  We have a sign to pop outside the front door if it doesn’t suit and alternatively, I’m not too afraid to turn anyone away either!

Pippa can’t eat anything much other than jelly and ice cream nor can she drink.  She cant walk, talk or move her legs or the left side of her body.  Her hearing is minimal at best and her iPad communication is dependent on whether or not her right hand and arm are having a good day.  We adjust accordingly with patience and understanding; finding different ways of doing things to help her manage.  She is still determined to go to school which we keep short and do on a nice afternoon so we can make our way along the bike path in the sunshine.  She tires easily but playing a few games now and then is possible and we have even managed a spot of cooking on her lap in her recliner chair.  Pats and kisses from Nibbles and visits from tiny little cute puppies have been special too.IMG_5973

This week she is looking forward to going to Tony’s Sungold Field Days on Wednesday just like she has each year and of course the most exciting event of the year, her 11th birthday party of Friday 13th.

The hardest thing for us all is the frustration over communication.  It is just heartbreaking.  Her mind knows exactly what she wants to say and in typical Pippa determination it is important to her that she types it with correct grammar, complete sentences and spelling – no short cuts.  It’s hard.  Sometimes I wipe Pippa’s tears and sometimes she wipes mine.

 


17 responses to “It’s Hard

  1. Margaret Britton says:

    Thank you Virginia, your strength is admirable.Pippa is one very special little sweetheart, beautiful in every way, she would melt anyones heart. We love you all. Marg & Allan. xxxx

  2. E says:

    Love is patient, love is kind.

    It does not envy, it does not boast,
    it is not proud.
    It is not rude, it is not self-seeking,
    it is not easily angered,
    it keeps no record of wrongs.
    Love does not delight in evil
    but rejoices with the truth.
    It always protects, always trusts,
    always hopes, always perseveres.

    Love never fails.

    Corinthians 13:4

    Thinking of you all and thanking you for your strength in sharing. Your love for each other is far, far greater than any words could describe it.

    Sending love and hope Friday’s plans are coming together for Pippa’s party.

    xox

  3. Miss W says:

    Enjoy Tony’s Field Days with your family & your special 11th Birthday Pippa! Thinking of you xo

  4. Jacquie says:

    Hopefully we will see you at Tony’s field days. He’s thrilled you are keen to be there. Feel free to pop into our site if you need a break, cold drink, shade or what ever you like!!! Legs 11 here you go pip. Happy birthday if I miss seeing you! Mmmmmmmwa!!!!

  5. Caitlin says:

    Sending so much love your way xxxx

  6. Rach says:

    Ginny. Stay strong and together xxxx

  7. Sandy Killen says:

    Thankyou so much for sharing your journey. I am absolutely thrilled Pippa’s birthday is here. yay Pippa. So amazing and beautiful in every way, Pippa we all wish you a fantastic 11th birthday. Enjoy your party and look forward to some more sweet pictures. Love, hugs and prayers coming your way. 😉

  8. Carolyn Fleming and Gordon Szegi says:

    Wishing you a very Happy 11th Birthday Pippa. You are such an incredibly brave young lady,just like your beautiful mum and brothers. Xx

  9. Love and hugs in abundance. Will send an extra big cyber hug on Friday for the amazing birthday girl. xxx

  10. Sue-Ellen says:

    Love and kisses to you all and sending an especially giant sloppy kiss for your birthday Pippa.

  11. kathy lochead says:

    Have fun with Tony’s field days,I know he will enjoy it as much as you. You are a truly remarkable family with such love and devotion. We will be thinking of you Pippa on your very special day on Friday, and hope you have another one of your ‘fun’ days, and get spoilt by everyone. Love to your mum, and we have not forgotten James and Patrick, although I do not think they would like hugs and kisses sent, so will give your their share!! Lots of love and hugs, oooooooodles of kisses, from Tony and Kathy in the uk. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

  12. sharra says:

    Enjoy your special day Pippa. Glad you like you like your headband. It was designed for a brave girl just like you.
    love to all your family, from ours.
    Leigh and Sharra McNaughton

  13. Diane says:

    Ray and I send special love to you all.

  14. Margaret & Michael says:

    Thinking of you all every day Virginia.
    Happy birthday to Pippa for Friday.
    Love from all our family.

  15. Joy says:

    Thank you for the update Virginia. You are all always in my thoughts and prayers. You are doing an amazing job. Hope the field days were good fun. A big happy birthday For Friday Pippa. Hope you enjoy your party 🎈🎉🎈🎉 xx

  16. trudy schmidt says:

    Happy, happy birthday to such an amazing, brave gorgeous Pippa. Hope you have a wonderful day with your beautiful family. We are thinking of you all constantly. Lots of love & hugs Trude, Brendan, Brad & Court xxx

  17. Michelle says:

    Happy birthday Pippa! Sending lots of love to a beautiful young girl who is living a big life. You have touched the lives of so many, Pippa, and we have been listening to your story all the way. Your gift to us, on your birthday, is just you being you. Lots of love,
    Michelle, Celeste, Matt, Laura and Xavier

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: