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 