I wanted to come out fighting when we were told our girls had Bardet-Biedl Syndrome. I wanted to be the mom who makes the best of a bad situation.
I took notes like a madwoman at the BBS conference. I didn't miss a session, or a word. I came home on a mission. I e-mailed doctors and more doctors. I checked into insurance coverage for specialists. I marched myself into the special education headquarters and talked with their director to find out how to get the girls the best educational opportunities. I wanted to fight. I wanted to be thankful for what we have and hopeful for the future. I didn't want to ache.
But somehow the ache has found me.
And I've realized that it's better to meet the ache, to give it a long look and a deep sigh, to unchain it and acknowledge that it lives here now--not just an occasional visitor, or even a frequent guest; this ache is a part of my story now, a part of me.
The ache finds me as I watch my kids play in the backyard: Hannah and the rest of the neighborhood running circles around Emma, who waits patiently to join in the game.
It finds me when the nurse asks Emma how she's doing today and Emma stares back blankly, not sure what the nurse is asking; and when that nurse interprets her blank stare as mental disability, gives up talking to Emma, and talks to me instead.
The ache wells up when Emma runs into a pole on her left side at church, her sister on her right side that evening, and falls flat on her face tripping over a curb five minutes later. She cries that she didn't see the curb as I wipe her knees. And now I know. I know that she didn't see it. And it breaks my heart.
I am heartbroken.
The ache finds me when she gets up, dusts herself off, and smiles again. It wells up when she giggles.
I ache when she comes grinning with her hands hidden, "Mommy, geh wuh I ha behine my back! (Mommy, guess what I have behind my back!)" and reveals three droopy dandelions with all the pride her heart could muster. I kiss her forehead, find the perfect vase, send her back outside, and I ache.
I don't ache from despair or because there's no hope; I don't ache because there's no beauty left in life. I ache because there is so much beauty and so much sadness all woven together in our life now. And as far as I can tell language fails for that emotion.
Watching Emma makes me ache like a sunset, full of mournfulness and grandeur all intertwined; like a wolf's howl on a still night, so haunting and yet breathtaking that you don't cry or smile, you just stand, and stare… and ache.
If you see me fall silent at one of Emma's soccer games this summer, staring quietly at her while she swipes for the ball. Please don't tell me that everything will be OK, because you and I both know that in a way it will and in a way it won't. Just stand beside me, and if you want you could whisper, "It's like watching the sunset, isn't it?"