Loving Phil

Every day Phil battles his disease. And every day Mum sits by his bed. I watch as she tenderly rubs his back with pawpaw ointment to ease his pain. I watch as she delicately rubs frankincense oil onto his thin legs – it seems to soothe him.

And she watches too. She watches as he sleeps, moves in his sleep, stirs and wakes. She watches and tends to her son. I know what I’m feeling as his sister. I can’t imagine what she’s feeling as his mother.

Matt also watches. During the day he tends to leave Nanna, his dad and me together and then he takes over at night. At the hospital Mum and I were happy to leave him knowing that he would not  be alone. Matt had his own bed in Phil’s room and could come and go as he pleased. And he was always there when Phil needed him.

We’re home now. Phil was released from St Vincents this morning and the gentle paramedics from Queensland Ambulance brought him here. Our routine from here on is different. He's in our care now and it's a bit more hands on. We will be assisted and supported by Blue Care, and St Vincents Home Care will call in regularly as well.

This afternoon his mate Jim, who is a barber, came over to spruce him up :-) Phil greeted him warmly and astounded us by sitting in a chair for about half an hour while Jim patiently and lovingly cut his hair and gave him a shave. He looks great and I could tell that he felt good while his friend worked his magic. He smiled, he talked, he admired himself in the mirror and he shook Jim's hand when the job was done.

But tonight, when I said goodnight to him as I left to come home, I felt so sad. I kissed his hands and his face and I told him that I loved him. I have never said that before. He told me that he loved me too and then he told me to go.

Today was a long day for all of us - a mixed day - happy to be home, nervous about tending to him, joy at seeing his transformation, and sadness at the reality of what's happening.

Today I don't know what tomorrow may bring.