6/5/17 I make myself very clear. I do not want to be pitied, I do not want to be deified. I do not want other parents to feel they have no right to complain about their children. I refuse to be the comparative, negative or positive, in anyone’s mind. What I do want everyone to do is look around and try to see your life based in reality. View your children with clear eyes. They are neither geniuses and delinquents, they don’t need to be babied or forced into early adulthood. They just need to be seen and to be allowed to live multiple realities at the same time. They can be saint and sinner in the same breath. You can acknowledge the difficulties of raising them without that meaning you're a terrible parent. It's hard work in any scenario. Talia is living the absolute extreme of this juxtaposition. She hangs between life and death, somehow never fully embodying either. I see her reality. I force myself to look closely and made a decision long ago to always be guided by that reality. I believe it has helped me to understand the reality of her condition early on so I’ve had time to come to an understanding about it. This understanding of reality has helped guide our minimal medical intervention path and helps me not get caught up in the cycle of hope and disappointment. I hope to be so clear eyed about those around me once she is gone. My other children are my joy and light, but they can’t be my salvation. I can’t place all of my hopes and fears on their shoulders. They are children trying to make sense of a world I’ve only recently found out to be senseless. I’m trying to let my other two know that it’s ok to experience happiness in the midst of tragedy and that sadness often has a place in joy as well. I hope I teach them that the world, while not fair, will reward those who remain open to possibilities and change. The outcome I refuse to accept is the one where we are all consumed by this sadness and forget to keep living. As my doctor husband says “The patient is the one who is sick.” Meaning, Talia has this disease, she is the one who is dying. Keep focus on her, and in my interpretation- don’t allow this disease to claim another victim. The only way to honor Talia is to continue on. Strengthen my marriage, don’t allow it to fall apart. Focus on my healthy kids, and don’t spend a minute of guilt about the time spent with them and away from my sick baby. I spend my days furiously lavishing attention on them. I make them feel safe and I work as hard as possible to normalize a completely abnormal situation. When they look back at this time I want them to marvel at how joyous their childhood was in the midst of such hardship. Sometimes it sounds like an impossibly ambitious task, and one in which I create a false Pollyanna version of myself. It’s true, sometime I am faking my happiness but mostly I’m just the same me I was before diagnosis. I’m trying to do the same thing all parents want. To raise happy independent kids who understand the world around them yet aren't crushed by its burdens. There’s too much time spent as an adult realizing the world is hard I have no desire for my children to discover that reality prematurely.
Live in the Juxtaposition