There is this beating heart that rests against mine and sings out a lullaby of need. Her needs are met by me and I caress her every care. She is lovely at it's truest tone. She is altogether perfect. I love everything about her. Her hair is thinning and I pray that God would let it stay.
Please just let it stay.
She splashes her arms in the bath water and I watch her smile, knowing that she finds enjoyment in one thing that is so mundane to the rest of the world; cleansing.
Her right ear has a slightly different curve than the left and it's uniqueness draws me in. I whisper promises of hope and of Heaven to her, as if she doesn't already know.
But I know she knows.
There is a fierceness that erupts from the hearts of mothers.
And when you are a mother to a child whose life you know is limited- not only in time but in every deed, you are part of a pack that is separate. You are capable of things that others couldn't dream of carrying. You are forced to focus on realities that are dark and diluted to the very thinnest of thins. You approach the days much different than you once did. People who think they know you learn that they do not. You change and adapt in ways that you have been made to and you become ok with it because it means surviving. And because your child will not, you just settle into the notion that despite it all; whatever comes...
You have to survive.
You also realize that your days can be very balanced. You figure out how to care for a sick child just like a healthy one. You dance and sing and live and pray. You cry and moan and stand naked before a God that has stripped you bare and vulnerable.
And you live.
With joy. With sorrow. With pain. With laughter.
Sometimes somber, often serious but also intimate and extremely playful.
You still listen to friends and cuddle with other children. You wake up and you see strength in yourself that wasn't there once before. And now that it's here you embrace it fully.
I remember looking at myself distinctly one day and knowing for certain that I was one of them; the "dragon moms."
Emily Rapp writes about us HERE.
I'm reading her new book, "The still point of the turning world," which is written about her son, Ronan, who lived with and died because of Tay-Sachs Disease (very similar to Mabel's diagnosis-in fact she was tested.)
I saw an unruly person inside of me that was willing to literally breathe fire into this world in order to find answers for our girl. I would grow wings and soar with a vicious spirit if it meant saving her. Or not saving her. But either way I was willing to become something that was so mythical and wild in order to do the very best for her that I could. I saw aging beauty and distinct wisdom but I also saw a place in myself that was not shielded, unguarded and ready for war. I possessed a strength that most will not have to possess and although grateful for it, I can't say I was thrilled to know I would endure all that it entailed to get here.
It cost alot.
I wagered the cost and decided that it mattered nothing compared to the days that I would give her and the life that she deserves. Nothing in this world was going to stop me from being the mom that I envisioned being not only for Mabel but for the other lives that were entrusted to me.
I would lay down my life for them.
I would give it all.
And one day, I know that they'll know.
One day I know that they will read these words here, taken from the sacred places of my heart and they will understand. I pray that they will understand grace and they will settle into growth. I pray that they will embrace every change that comes at them with a knowing that it leads to discovery and competence. Inside of the journey of our lives is a beautiful story always unraveling in ways that are completely out of our control and yet in it, we can surrender to the One who marks it all.
I believe that they'll see me for who I am and know me.
I know they'll remember these days of chaos and sadness intertwined with bursts of distinct laughter coming from the depth of their mother. I know that they'll know the vulgar truth of my heart and the aching of these days to be different yet in it I believe they'll understand a more complete, more dynamic woman than I could have ever dreamed to be...
There is nothing more fulfilling than their breath in the morning and their footsteps overtaking this home. I'm exhausted and yet the energy springs forth from me for them. I look into green eyes and double sets of blue and I know that nothing more sacred could have have been placed in my care. Nothing more powerful could have been entrusted to me. I watch Mabel's body flick and twitch from across the room and in the motion and madness I silently thank God for allowing me to know her.
And not only to know her but to be wrapped so intricately within her.
To have grown her inside of me and given her life before breath was set forth in her; it overtakes me.
So it was set into motion.
Whatever will be will be.
Whatever will be will be.
As long as I am here and they are with me--we will live fully.
... you just settle in to the notion that whatever comes, despite it all, you will survive.
You will, Ramee. And I'm so sorry she won't. But you *will*. Not that I can promise that, and not that I know you well, but coming from a place of experience, and gauging by what I can tell, I would guess with confidence that you will. xoxo
I don't know you at all, just a reader. This song came on and it made me think of you.
It is "Wonder" by Natalie Merchant.
Thinking of you and praying.
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