Today, Lace and I will travel to Seattle with our Son. It feels less like a trip and more of a journey, journey to live, and toward prayer. We will have to learn a new language about our son's condition.
How can we ask the right questions, if we can not even use the right words. The language of NF1 is so different from the speech I am use to. It is unlike the language of poetry or the the language of Jesus. NF1 words, pathognomonic, neurofibromatosis, plexiform, are exotic words like animals from the depth of a mysterious ocean. Yet I have to enter the deep to understand their meaning and their relationship to baby Tito.
I have been busy reading all I can on NF1 . We face the unknown of what the doctors will say. Surgery? Treatable? His future? The questions rattle around like vases on a shelf during an earthquake. They tremble on the shaking surface as we try to hold onto them. And do they contain answers? Suddenly prayer blooms.
The questions are becoming more in focus as I learn more about NF1.
I remember one of my favorite quotes. I was given the book it comes from when I was a young poet. I am no longer young, but it gives me comfort.
Be patient toward all that is unsolved in your heart and try to love the questions themselves. Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answers.
–RAINER MARIA RILKE
We have to learn to live the questions about our son Tito.