Each time this night comes, I take the long walk back to Family House and ponder in my mind, “is it real?” It hardly seems possible that the day I have waited for will come tomorrow. Preparations have been made, prescriptions and supplies ordered. We have learned to have things shipped to our house rather than the hospital so we can leave. There are the words. We are leaving.
Can it be? I am afraid to hope. I prepare myself that something may happen over night to prevent our leaving. It is always a planned discharge, never a for sure discharge.
But there is it. It will gradually soak in. Maybe more slowly this time because he must stay hydrated tonight and not vomit, or at least, not vomit too much. He is still a baby. Plans have been made to protect him: increase the TPN, give more breast milk with the formula.
Then there is the ethanol lock. A little alcohol at the end of his central catheter to help protect him from those things that find their way into his blood. Could this mean we do not come back for some time?
In the beginning, the likelihood of infection was not great…possible, but more likely to be a normal fever that all kids get. Yet my children have not been sick, not once all summer…only Peter.
Soon infections seemed very likely for him. This is his third. They mean two-week hospital stays. Coupled with other events, we have been here five weeks. Five weeks, that is the length of the “big hospitalization,” the one in the beginning. But that one was five weeks without interruption. Here we had six days at home…six perfect, too short days.
What will fall bring us? How many holidays will we spend here? Or will we turn a corner and have more time home than hospital? I counted the weeks. We have spent four months in the hospital. He is eight-months old. But one day it is going to change.
I reach out and consider grasping at the hope that lies before us. Yet it is a fearful hope. I must accept this as part of life. I can hope to be home. I can dream of being home an entire month. I can dream of being a family again. God, how I would love to be together again.
We were meant for each other. My husband and I need each other. We are the romantic-style marriage. It was written in the stars. I do not believe marriage must be destiny to be successful. Yet, I would be lying if I said I did not think God planned for us to be together since the beginning.
So we must be together…and detached. That is the lesson. Those were the welcoming words Fr. R and I spoke in the hallway of the PICU. “If any one comes to me and does not hate his own father and mother and wife and children and brothers and sisters, yes, and even his own life, he cannot be my disciple” (Luke 14:26). But not hate, I told Fr. R, you can love it…just be detached. He laughed heartily and granted me my point. He experiences his own desert away from home.
Detachment. The first spiritual book I ever read was Abandonment to Divine Providence. My early days were spent reading the Carmelites, Therese and her night of nothingness, John of the Cross and the Dark Night of the Soul. I understood little of it then. How could I? I had never suffered.
God protected St. Therese. She felt he protected some souls in a special way, bringing them up close to him, because they would not be strong enough to endure the path otherwise. I knew I was one of those souls. But we all must come to it eventually. We all must face the Cross. Then he makes us strong.
I have to explore what the Cross is and what hope is. I cannot fall into superstition: that if i pray in this way, he will not go back to the hospital. But it must be trust. It must be personal. It has to contain some notion of Heaven as our home. With a home and family so wonderful, I could love this world so much so I would not want to lose it. I remember thinking that when I held my oldest daughter.
We are on a journey. We must remember that. I am holding the thought. The excitement for tomorrow grows.