I haven’t written a blog for a while and this one has been sitting here for at least five days. Words are not easily at my fingertips and I couldn’t even think of a silly title to suit this post. Each day blends into the next and I don’t know anymore which are good days and which are bad days. I guess the good days are simply those that are not bad all day long. Sometimes the bad days are helped with special things – loved visitors, games played, tasty treats (made, grown or bought especially), funny movies watched. Sometimes it requires extra effort though to get through the bad days. We have played games and watched movies with Nan and friends – adults, teenagers, children. Games of strategy are still mostly won by Pippa. Whipping butts is the term that comes to mind. Yesterday it was her new favourite Tiki Topple and the old favourite Yahtzee (no less than four Yahtzees by Pippa – I’m not sure why the rest of us even bothered rolling the dice). Friends recently made and delivered a behind the scenes making of the CD DVD along with a funny Shake-it-Off music video. Such an incredibly thoughtful gift. All this is fabulous and so much appreciated giving Pippa (all of us) a lift. Today she is tired and just watching TV is an effort. We have a sign for when we don’t want visitors, it’s been outside our front door all day.
There is nothing wrong with Pippa’s brain. Everything is there. Every thought, every feeling, every movement, every strategy, every memory, every wit, every piece of humour, every bit of logic…………
It’s the nerves in her brainstem that carry some of this information that are not. Thus, her brain is also filled with frustration and sadness, confusion and reality……….and her body is no longer working the way it should.
When Pippa tries to walk the messages from her brain don’t reach her feet to tell them to move. She still knows exactly what she wants to say, but her nerves that control her speech are too damaged for the words to come out. In the past days she has still laughed at a funny movie or giggled at James and Patrick’s silly antics but the TV volume has to be up high and our voices have to be directly in front for her to hear. I even think she has started to lip read. I now have in home nursing help at minimum twice a day and often more.
Each day I am emotionally, physically and mentally heartbreakingly gut wrenchingly tired. (I’m sure there’s lots more ‘ly’ words I could use)
Never have I reflected more about the phrase “careful what you wish for”. Nothing I have wished or thought could have prevented this, but just like any mother I would look at my daughter, my youngest, and not want her to grow up. “Stop Growing,” we all say. When Pippa was little I used to tell her I wished that she could fit curled up on my lap forever. She is the best cuddler. Koala Cuddles we call them. When Pippa went into grade three I thought, no more junior school and with it also thought, too soon she will be finished primary school altogether. Now I wish I could fast forward years; have this period in our lives be nothing more than a forgotten bad dream and instead be packing my carefree teenage Pippa off to university ready to embark on whatever exciting adventure the world has in store for her knowing how easily she will fit in to her social, sporting and academic dreams………
Instead, I now have to wish for Pippa that I can understand what she says, that she doesn’t fall when I help her get up, that she can hear the words from the story I read and that she wakes up from her sleeps. The smile on her face, the way she looks at me; her eyes filled with love just before she goes to sleep and then again when she wakes are the most precious things in the world.
Pippa Rea 
Well written Virginia, well done. Love to you. Meredith
Your amazing strength & love is to be admired Virginia. Take care of yourself too. Love to Pippa xo
Our hearts are with you.
xxxxoooo
xxxxoooo
Love and hugs are coming your way xox
Darling Virg,
It’s so sad to read how Pip’s body is now letting her down more. It’s so evident that her spirit will never let her, or anyone, down. She is amazing. You, Patrick and James are also quite simply amazing. We admire you all and as always, send much love. Carolyn, Jobe, Coen and Yarra xxoo xxoo xxoo xxoo
So so heartbreaking, I can’t imagine how much your heart must hurt Virginia.
Pippa is insanly divine 😘
Xxxxx
How privileged my family and myself have been to share some of these fun times with not only Pippa but also her beautiful mum and brothers.
Thank you for the lasting memories with Pippa and the continued friendship that will remain with you and your boys. xxxxxxxxxxxxxxx
You are all truly amazing!
I struggled to find some words when I first read your latest entry today and I still don’t know what to say other than you and your whole extended family are amazing. How you keep writing I will never know but I imagine it brings some comfort. So what I really want to say now after thinking about it tonight, is that I am listening. We all hear you Virginia, we are listening and I hope that helps in some tiny way. Good night and God bless xox
I”m with you E. I’ve been struggling with words all day as well. You have put what I was thinking beautifully. Prayers and strength to you all.
I’m with E and Joel too! I have no words but send all my love, prayers and thoughts to the most amazing little girl, mum and brothers I have ever had the privilege to meet! I hope in some way it helps xx
So eloquently written Virginia. So gut wrenchingly unfair. Xxx
Thats so sad, take care xx
Dearest Virginia you are the bravest lady I know right at this moment, you make me stop and appreciate everyone and everything I have and to live in the moment. All my love to you and your family. Txx
Gin how devastating to see your darling daughter go through this. My chest felt so heavy just reading this latest post. I can’t imagine how you are getting through each day. I admire your courage. I wish things were different. You are all in our prayers xxxx
With every sunset we pray for you all with every sunrise we pray for a’ great day for Pippa’
You, your beautiful boys and the ever amazing Pippa share such enormous strength love and courage, a credit to yourself! you deserve to feel very proud.
I struggle to comprehend what your going through. I salute you for being such an amazingly wonderful attentive Mum, always finding a way to make the bad days brighter, and on top of all what’s going on, your updating us all on your families journey. Our thoughts and prayers always the Maglaras Family. Xxx
Sending you all my heartfelt love and prayers especially to gorgeous pippa love Lara, Martin, Isaac and Ryan xxx