I vacillate between marveling at the beauty and knowledge the world offers, and dismaying at the world's cruelties. Sometimes I whisper to Eloise all the wonderful things she has to look forward to - dancing, running barefoot in the grass, first kisses, paintings, going to Paris with me, learning French. Then there are times when I wonder why she is fighting so hard to stay here. There is so much pain and ugliness here - why are you working so hard to stay?!
Living life with passion and meaning has been the primary focus of my life. Its easy to live with passion while sailing across the globe, reading medieval texts in a turret library in Paris, or spending my day amongst the world's best books. It is much, much more difficult to live on a higher plane when struggling with four children under the age of five, and the youngest spending the majority of her first year in the hospital, very ill.
But it is most important to live with passion now. There is so much to learn about the human body, about medicine and hospitals. I try to absorb as much knowledge as is available, to approach my situation with compassion and imagination. There may not be glorious paintings revealing human truths, but I'm living human truth. It is beautiful how the human body repairs itself. It is something to marvel at to see how humanity has discovered so many cures, medicines and organization. Hospitals are a representation of the height of human achievement.
If I were to give one piece of advice to parents who may have to walk to same long, agonizing road I have had to walk, it would be not to leave imagination at the door. There is so much a parent can do to improve a child's experience in the hospital if utilizing imagination. Just because it is a sterile environment, with frightening illnesses, obnoxious noises and smells (and sometimes people), it doesn't mean you can't improve it. Make it yours. Medicine is a foreign language like any other, and even if you don't know even the root words at the beginning, you can pick it up quickly if you try. I understand all the numbers, terms and medicines the docs and nurses hurl at me, but its because I've done my own research, asked questions and worked hard at learning about them. A big dose of imagination is called for, too.