I've always been an emotional person. Throughout my life I've made most of my choices based on what my heart felt. I've always walked a path of difficulty. My heart doesn't always lead me through what my dad would call "the smart path through life". Apparently I like the hard way. I have loved others, and been loved in return.
I find myself walking another difficult road filled with emotion. My baby lays helpless in my arms, while a disease eats away at the myelin on her brain cells. My little love is a little closer to getting her wings every day. Being with her, comforting her, snuggling her, kissing her delicate skin, I come close to my own mortality. I am watching a part of myself die.
I close my eyes and imagine myself as her. What can I do right now, in this moment, to bring love and wonder to her life? I unfasten her sleeper, lifting her chubby baby legs out one at a time. Gently and firmly I massage her feet, her ankles, her knees. Her little feet, having never known weight bearing, have turned inward. Each ankle is rotated and flexed forward and back as I help her with range of motion exercises. I feel her joy at having her body moved and I coo at her and babble out the thoughts in my mind.
Is love the reason for human existance? I don't know. But it's the reason for mine. I didn't know how much love could hurt - and yet it is a pain I want prolonged. I do not want my daughter's life to end, I do not want this love cast out into the unknown. I am frightened for her. I try not to be. I attempt to live in the moment and embrace the cycle of mortality. I believe death is a doorway.
I simply can only give her my love. I can give her comfort, small joys. This is what I myself would want.
"Mother is the word for God on the lips and in the hearts of children". I will hold my angel's broken body gently to not cause her pain - seeking to bring her moments of wonder and joy. When the time comes, and Anaya gets her wings, she will be free of it's cumbersome limpness to explore the fundamental nature of existance as pure energy.
I can see that in her now, in my minds eye, laying here in the hospital bed. I imagine all sorts of wonders out there for her to explore. I can envision her smile, I can hear her voice calling out "I love you Mommy!"
And I know it's true.
So while I'm sheparding her body through this life, I am blessed to see the beauty of my soul reflected in hers. I am able to give her the love that I myself have always needed, and it heals hurts buried deep inside me. I may follow my heart around more than my head, but for the moment I'm okay with that.
Anaya brings me insight. Her day has been mixed. Moments of clear breathing followed by moments of intense wetness. We have her on antibiotics now. I hope she gets better soon, so that we can snuggle up with the rest of the family at home.
We really need some fresh milk donations. So if you know any loving lactating women in Nelson please tell them - there is an angel nearby that needs their help - even a little bit adds up.