Her World

Its the sweetest place to be. I watch as she hides inside of it. As she builds the walls around to keep the rest of the world out. I don't know when she learned to run there, but I understand why she had to find a place. A place safe from all the sticks and pokes. Safe from all the hurts and heartaches. Safe from those who she feels are a threat. There are times when Ashley's world is a necessary place to hide.

Just the other day my sister told me, "I'm glad she lets you in. If she feels like she needs to hide inside of her world I'm just so glad she allows you inside there with her." My heart was blessed. She was truly thankful that my sweet Ashley lets me go inside of those walls. I've thought a lot about that statement. I've even spent a couple of nights crying over it. It was a beautiful observation, but one that in all honesty breaks my heart. She's so right. Ashley Kate has a built a world around herself to keep others out. The minute we open the clinic doors, walk into a hospital, or answer a knock at our door she runs there. Inside her world she trusts very few people. Her daddy is allowed there. Her brother and sister get to come inside. My mom and sometimes Dave's get an invitation. Our dads are off limits. I think they remind her of a couple of her doctor's. My dad got to hold at Christmas this last year and she eventually settled into his lap and allowed him to sing a couple of songs to her and read a story to her and my nieces. Dave's dad keeps trying to win her trust and I think he finally go to hold her for longer than 2 minutes last week(which was a record). My sisters have been here for three and half days and she's not crying when they speak to her. They haven't gotten to hold her, but she will play with them and allow them to touch her hands and feet. To see them with her brings me to tears every time. They love her so much and want so badly to cuddle her just as they do all of our children. She's just not there yet.

Ashley's world isn't full of trust. She's learned the exact opposite. Most children are so trusting and thats part of the innocence they are born with. Not my Ashley. Her innocence is gone and she knows that the world is full of pain and that most of the time a stranger is the one who hurts her. You must earn her trust and it isn't easy. Ms. Sue has been coming around to work with her for almost 3 years and every time the door is opened she looks to see if it is her. If it is she stops what she is doing and covers her eyes, shakes her head and cries the whole visit. She knows that when Ms. Sue comes we are going to push her to her limits and make her work to go even farther. She doesn't trust her. Even on the days when Sue comes for reasons other than therapy Ashley still cries. Any middle aged man that walks into our home sends her into a frenzy. There is no controlling it. She doesn't trust them. If you wear scrubs, you are the enemy. Untrustworthy in Ashley's world.

The trust that Ashley places in mine and David's hands is bitter and sweet. I've used those words many times in this journal. Knowing she trusts us over any other persons on this planet is so, so sweet. She hangs onto me tightly. She reaches out and grabs my hand to hold. She rubs my arm with her soft, tiny hands when I sit next to her. She snuggles into her daddy's chest and tries to hide from her doctors. She cuddles under a blankets with Blake and Allie. She knows we won't hurt her. She knows she is safe and loved and it is a beautiful thing. The bitterness comes in to play when she feels betrayed. When we open the door and allow the nurse to come in to draw labs. When I sit on the floor next to Sue and strap braces on her legs. When I push her stroller through the doors of the clinic. When I sit across from her in the jet and allow them to strap her down to the gurney and work on her the entire flight. When I stand and do nothing as they push her farther and farther down the hall from me and do nothing to stop them. Her eyes show the betrayal. She trusts me more than anyone and yet I'm the one who lets these things take place. Bitter and sweet.

As I type my tiny pickle rolls around next to me watching Blue and kicking the keys on the keyboard out of nothing but meanness. She grins an ornery grin as I push her feet of the keys and giggles. How GRATEFUL I am to be a part of her world. A part of the small circle she trusts. To have been given this role in her life. My heart is so full of gratitude for this little life she has been given.

Trust. Its a hard one. Many times along this path I have felt the bitterness and sweetness of that word. Inside my world I have felt the pain of mistrust. Each time she takes a turn for the worse I have to decide. Do I or don't I trust Him? I mean, I know I trust Him, but trusting on those really, really bad days isn't easy. After all He allows these things to happen to her and to us. He allows her little body to struggle for life. He allows the hurt and the pain and the fear to come. When I ask myself who I'm going to allow into my world do I open the door and let Him reside there with me? Do I allow Him to hold me, my hand, my heart? Will I snuggle close to His chest to hide like Ashley Kate does with her Father?


Ashley's world includes me and my world includes Jesus. Its the way it is. Even when I don't understand the things that are going on around me. Her eyes search for understanding and she fights with all that she is to get back to my arms. Some days I feel the exact same way.