One of the hardest things in my journey with Nani is feeling misunderstood and unknown. I realize it’s hard from the outside to understand, to relate to this experience. Some people put me on a pedestal, some pity me, some see my life as wasted, some think my life will really start once I am rid of Nani’s care. Then there are the “jewels in my crown in heaven” comments. What all these compassionate people are missing is this life is a gift. I would not like the person I would be without Nani.
Henri Nouwen and Christopher de Vinck are two authors who get it. I highly recommend them to you.
The last decade of his life Nouwen lived at Daybreak, an inclusive community for people with and without disabilities. During his time there he cared for Adam, a young man with profound disabilities. The book, Nouwen Then, is a book of personal reflections on Henri. It’s edited by Christopher de Vinck. Here is an excerpt of what Philip Yancy wrote in his reflection.
“It had been difficult for him at first, Nouwen admitted. Physical touch, affection, and the messiness of caring for an uncoordinated person did not come easily. But he had learned to love Adam, truly to love him. In the process he had learned what it must be like for God to love us—spiritually uncoordinated, disabled, capable of responding only with what must seem to God like inarticulate grunts and groans. Indeed, working with Adam had taught him the humility and emptiness achieved by desert monks after years of discipline. The time he spent caring for Adam had become an indispensable time of meditation.”
I want my care for Amanda to be an indispensable time of meditation. Sometimes it is, maybe I should say rarely. But those times I come away feeling refreshed, peaceful, quieted.
I believe in my heart her care is very important, not an interruption to my life. I believe she is my event of true love. And yet? I am often just fitting her care into my day, just getting it done and over.
Why is it so hard to be present, really present when I am taking care of her? How does that fall off my radar screen?
I suspect I am too busy, putting my hands to things I am not called to do. Perhaps qualified to do, but perhaps not called to do. Am I scared to give up the things that are “all mine”? Things that take me away from here and her.
Do I need to give up those things? Is that what God is calling me to do? I don’t know. Truth is I rarely ask Him before I make my decisions. And if I do, it’s more of a rhetorical question because I often don’t listen for an answer.
I do know I want more of those moments when I choose to serve her well. The moments when I let go of my agenda, my list, my rights, my needs, my, my, my….
In reality it is not a loss, it is a gain. Not in the future, in the present. Right then and there. The moments I experience a sense of privilege to be part of her life, to be her mother, and I don’t feel worthy.