When she's

...sleeping I forget about everything else and I'm overwhelmed by the tiny beauty that lays before me. She's gorgeous. She truly is. Her eyes with those long lashes closed so softly. Rosy cheeks that glow in the shadow of her nightlight. Tiny hands that hold whatever treasure she has chosen for the night. Long legs that remind me she is no longer a baby, but has become a little girl. All the struggles of her past and the disappointments of today just disappear as I breathe her in and thank the Father for handing us this child. When she's sleeping all is right in my world and in hers and for a moment or two as I stand over her crib I forget that tomorrow we will wake to tackle the many obstacles that stand before her.

I've kept myself from dreaming for my Ashley too far from today or perhaps past tomorrow. Its a part of me that I have to shut off and force myself to focus on the now. The present. The gift that this moment in time is. How I long to dream of the soccer games that she should be playing this fall as she turns four, the beginning of kindergarten next fall, slumber parties with friends, graduation, a big wedding, and all the rest. Still I want those things for my sweet girl, but learning to live within the boundaries her life is setting for us reminds me that those things may be unlikely to happen.

There is a joy and also a sadness that overwhelms my heart when closing my eyes and thinking of her tomorrows. Joy in knowing that God has done an amazing work in her life and that she is here with us. Joy that is indescribable as I hold that tiny girl on my lap. Joy that spills out of me when I see her smile or listen to her giggle. I can't hold it in. Her happiness blesses me so. Then the sadness that slips out of the corners of my eyes and rolls down my cheeks tonight when I allow myself to hurt for just a moment over all that will never be. Its not often that it comes, but every now and then the tears flow for the losses that she has experienced.

I watched Blake hold her today and help her get into trouble as they unpacked boxes of his trophies and as she dropped one on the floor I thought to myself how very wonderful it would be to watch her toddling behind us pulling one after the other out of the boxes. Even in things such as this I rejoice that she is on his lap and that he loves her so much that he is helping her be ornery, but yet I feel sad over the fact that she can't be in the middle of all of this on her own. I want so badly for her to just be almost four and underfoot as we work to unpack. On the other hand I look over at that smile and those little hands holding on to something so heavy for them and I praise God that she is still with us. Every day my heart is in the middle of this conflict.

The guilt I battle over longing for normal for her life and the gratitude I feel over her life rages on inside of my heart. My tears fall onto her blanket tonight as I wish with all that I have that she could understand that her birthday is coming. I struggle with the knowledge that she may never know that August 4th is any different than August 5th or 6th or 7th. Everyday is just as wonderful to her as the next and then I remind myself that if only we all could live life the way Ashley Kate does.

She may never understand. She may never talk. She may never walk. She may never eat. She may never do any of these things. That's reality.

The most beautiful thing about my daughter is that she doesn't care. She honestly doesn't know that she should. She just doesn't. When I stand over her crib each night and watch her sleep I wish that I didn't either.

She's here. She's happy. She's loved. She's safe. She's alive. Does anything else matter?

When she's sleeping so quietly and peacefully I allow myself to forget. She looks so "normal". So healthy. So sweet. So beautiful. My prayer for my sweet Ashley Kate is that when she closes those eyes and dreams that the boundaries that have been set around her while she's awake disappear. I pray she runs in her dreams as she does in mine.