I don't know why I'm here. Just lonely I guess. So many thoughts running through my head. Ashley Kate is sleeping and I sit waiting to begin her replacement fluids. I will be running them until around 3a.m. The alarm will go off every hour and ten minutes telling me to replace the syringe so sleeping is kind of useless until I have finished the last one and have flushed her line. So I sit and wait and think and pray. The lights are all off and only the screen illuminates the room. The Christmas music is playing lightly in order to fill our room with the peace that it brings. It makes me cry. Not only because of the beautiful sounds that I hear, but also because of where we are this holiday season.
My morning devotional has been rehearsed in my mind all throughout the day. It was called, "But God". It began by telling the story of a young preacher named Vincent. A young man with a vision to build a church. He ministered, tended to the injured, fed the hungry and his congregation grew. Only there was a problem. His superiors didn't like the way he looked, the way he dressed, the place that he lived, or the fact that he gave his salary away to the needy of his congregation. Eventually they dismissed him. Hurt, angry and confused by what had taken place he questioned. His only desire was to serve God and build a church to serve Him so why hadn't God allowed it to happen? One day as he struggled with these questions he watched an old man as he struggled under a load of coal and he began to draw a sketch of him. At the time he didn't realize his true calling. This young man eventually became an artist known throughout the world. His name was Vincent Van Gogh. God had not called him to lead a church. He had called him to be an artist. I keep asking myself, "Was there anything wrong with Vincent's desire to lead a church?" No. I don't believe there was, but just think about what the world would have missed had he not followed the true calling of God in his life.
As I think about this story I ask myself, "Is there anything wrong with my desire for Ashely Kate to live a "normal" life. Free from hospital stays, medications, surgeries and the like? Is there anything wrong with the dreams I hide in my heart for her? The dream of someday having a chubby toddler running around our Christmas tree who answers to the name of Ashley Kate? No. I don't believe there is, but oh, what would I have missed out on if she had just been that "normal" child of my dreams. Hurt, angry and confused I still seek His true calling for our sweet baby knowing that it has to be so much larger than what I could have ever dreamed. The tears come and they don't stop as I realize more and more each day that she may never understand the world around her like we all do. Yesterday I shared with my sister that I don't think Ash will ever comprehend what Christmas is. I fear that her mind will not understand that it is a special day and not just another day. As I cried over the death of my dreams for this beautiful child my sister shared her thoughts about it. "Trish, but wouldn't it be wonderful for her if every day was just as magical as Christmas day? If her mind only ever found joy and happiness in each day and if she never had to understand the ugliness that is in the world around her?" I realized that she was right. It wouldn't be a bad thing if my Ashley never understood disappointment, hurt feelings, broken dreams. If she only ever smiled and played and hugged her daddy and patted her mommy. That would be just as beautiful. Just as magical. If that is what He has in store for our tiny miracle then why would I ever say, "But God, I wanted this for her or I dreamed that for her." Surely His calling for her life will be so much more than I could ever comprehend.
Dave was so right today as he said to me, "This one has been hard on her." Yes, it has. She has lost so much of what she had gained, but I know in my heart underneath the sadness, the pain, and the loss that her Father is here and He is working.
She lays behind me on the bed sleeping. Making sweet sounds as she breathes in and out. Her lashes are long, her cheeks still rosy although they are swollen and puffy, her little arms tucked behind her head, and she dreams. She doesn't dream of sugar plums, but maybe she dreams of her home. Maybe when she closes her eyes she can see her daddy, or her nursery, or Blake and Allie. Those are things she does recognize, and tonight I think I would say that is even better than Christmas trees, or twinkling lights, or stockings hung on our mantle. I would rather her comprehend family and what it feels like to be loved with out conditions.
I can't say, "But God, I wanted this or that for her. I will say, "Yet God, You gave us a miracle in this child and for that I will forever be grateful."