Nani at four years of age Nani at four years of age

My MIL showed me this picture the other night, she said when she looks at it she feels like she can see Nani’s soul. I’d agree. Don’t go theologic on me, I know only God can really see her soul, but comments about her ethereal beauty will be approved.

I don’t remember seeing this picture before now, and initially it undid me. I miss those beautiful blue eyes which now carry opaque scars. I miss her being small enough to hold on my lap. I don’t miss how fresh our grief was at that time.

It really captures Nani at that age. She often looked statue-like, her features frozen, her eyes staring off, as though she was carved from stone. But we began to see the angel in the marble and she began to see us.

We’ve made peace with all those diagnoses for the most part. We have embraced her Nani-ness, although it still drives us crazy at times.

I know that most people don’t see the angel in the marble when they look at Nani. They can’t see past the quirky sometimes irrational behaviors, the awkward gait, the strange posturing, the lack of eye contact, the strangely shaped forehead after years of head banging.

That’s OK.

I see her, and she is so beautiful. I hear her, though she has never spoken a word and she hears me. And it’s all pretty wonderful. In some ways it’s all I ever wanted.

Reeve Lindberg captures it all so well in an article she wrote about her mother’s loss of language near the end of her life-

(My paraphrase)

I have come to understand… that human relationships can exist beyond interpersonal interaction, beyond eloquence, beyond the written & spoken word. She has taught me that there is something more important, something I can only call presence, & even then I’m not sure I have named it correctly. It is possible to love someone just by being with them, whatever their condition or mood; that it is possible to love someone without expecting an expression of love in return; that it is possible to love someone without the confirmation of her familiar identity, & even without the confirmation of mine. Some things cannot be expressed through speech or in writing, & some things are so close to the very bones of individual human experience that they cannot be expressed at all. They simply are. In some inexpressible way, I know, without her words or mine, that we are intimately connected. 

 

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