We heard this week of a couple of books and of a film that have been produced by Anne-Dauphine Julliand. The first book is called "Two little footsteps in the wet sand" and is the story of her daughter. During a pregnancy, the author noticed that her two-year-old daughter was walking oddly. Tests revealed a degenerative disease and the little one was given just months to live. Further tests showed that both she and her husband were carriers of the disease and when the baby she was carrying was born she was also affected.
The author was impressed by a remark a doctor made, "When you cannot add days to your life, you can add life to your days". She wrote a biography of her daughter, a biography because until the moment she died she was living, and living her restricted life to the full.
I brought the book home on Tuesday and Pat read it yesterday.
Another book followed, and then a film, entitled "Et les mistrals gagnants". The title is taken from a popular song by Renaud in which he sings of the way his daughter's childhood days are passing, never to be repeated. The film is a documentary showing the daily life of five children from various parts of France, all of whom are seriously ill. One lad has a condition where his body produces no collagen, and so his skin is prone to peel away. Another had a brain tumour. Another had renal failure. A girl has problems with her heart and lungs. I forget the fifth child's problem.
The children accept their situation and live each day to the full. They have no taboos. The lad with the skin complaint insisted that his daily bath and dressings be filmed. The little lad with the tumour said, "When I'm dead I won't be ill any more." The child with renal failure said, "I haven't peed in two years." He's had a kidney transplant from his father since the film, and says, "To begin with it was great to pee, but after a while it's kind of inconvenient." The lad with the brain tumour has since died.
I don't know when I last saw a happier film. The kids enjoy their life, charging round the hospitals, terrorising the staff, planting gardens, riding bikes, acting in plays, fighting with siblings and generally doing what kids do. It reminded me of a Peanuts cartoon I saw recently.
Charlie Brown: You know, Snoopy, one day we will all die.
Snoopy: Yes, but all the other days we will live.