Good Vibes Only is what I would like and what I need but they seem to be evading me. Last week Pippa noticeably declined. Not in a big way, but there were slight, subtle changes that I knew were signs. First she woke up one night when her hearing changed again. She was terrified and scared; the empty, hollow sound of vacant space within her ear nerves. Nightmares began. They were always the same and she clung to me with force. Next her breathing became worse which we managed (and when I say we, I refer to the constant medical support I have) with symptomatic medication. The medication is also helping with her anxiousness and her nightmares. I am open and honest with her but there are things she can’t mention or talk about and even though I am with her every minute of every day she is scared. She has every reason to be scared – she’s a ten year old little girl facing a demon that even adults shouldn’t have to face.
Her breathing now is ok and, for the time being, under control but her balance, walking and speech have all deteriorated to some degree and now these symptoms seem to change hourly. At the same time though her facial palsy, smile and eyes are better; having improved somewhat. For a while I have been treating both eyes for not closing or blinking properly, now it is back to only being her left eye that is affected and only slightly. Currently I no longer have to thicken her fluids but for how long I’m not sure.
It is a confusing and hour by hour day that we live. For a while Pippa was best in the mornings; refreshed and rejuvenated from sleep. Now that her symptoms are changing so do our days – all the time. At times she is now better in the afternoons because she is managing and adapting to her weaknesses across the day. Other days she is worse in the afternoon because she is tired. She can also be worse in the mornings if the pressure on her brain is greater after lying down. Three days ago she could barely walk the first part of the day yet in the afternoon she decided that she would walk not “roll” (our reference to having to use the wheelchair) through the supermarket. She held mine and Patrick’s hands and the next thing I knew she’s doing lunges up and down the aisles. Very clearly she said, “What? This has got to be good for my muscles mum!”
Pippa’s determination and “I can do it myself” attitude still shines through. For ten days nowI have been doing twice daily physiotherapy with her. The steroids are now at a low enough level that perhaps we can start to rebuild her muscles. I am doing all that I can. I can help her muscles become stronger, but I can’t help her nerves that control her balance. Physio also helps her mentally to know that although it is a routine, it is beneficial and purposeful. On warm days we go to a friend’s pool where, in private with her brothers at her side, the weightlessness means she can run, walk, swim in the water……….essentially it means she can be free. It’s really hard for an outdoors girl who in summers gone by has lived at the beach and loves the ocean a to not be able to walk on the sand or even consider standing upright in waves on hot days. Pippa, not unlike other children, lived most of her life until now in bathers. With nostalgia in her voice she reminded me on the hot day recently of days she has spent at the beach boogie boarding all day long being able to take relief from the heat in the waves. Now she is unlike other children and she feels it.
I don’t tell Pippa I know what she’s feeling. I don’t. I can’t. Only she knows. Instead, I tell her I understand.
We still try and do something fun every day. But fun is becoming more and more limited due to her speech and walking. The past two days it was a trip to the movies. The three flights of stairs we had to climb to Cinema One on both days (of course!) was ridiculous, tricky and tiring. In this day and age I found myself wondering why and how there is no elevator? Today it will be a visit from beautiful friends driving a long distance to see us for lunch. They will bring with them hugs and love for all of us. Afterwards a swim in the hot afternoon. Then maybe more movies later in the week – perhaps downstairs may be helpful. At some point Pippa has a shopping list for school she needs to fill. We will roll, I know, but it’s good to look forward to and plan for normal life when the life surrounding us is so abnormal.
Last year on the first day of radiation, the first day of chemotherapy and the first day Pippa had to knowingly have a blood test I wore a t-shirt I had been given. It had a picture of the Eiffel Tower on it and it said Follow your Heart. Pippa is my heart. This year in Paris I bought another t-shirt. This one has a photo of the Eiffel Tower taken from the exact spot we picnicked. It says Good Vibes Only. You don’t always need a plan. Sometimes you just need to breathe, trust, let go and see what happens.
I have no more plans. I have trusted everyone that has helped us on this journey. Sometimes I can’t breathe. I’m not ready to let go. I don’t want to see what happens. My wish for 2015 is simple but elusive. I would like to have Good Vibes Only.
Pippa Rea 