Last night was the worst night of sleep I had in the hospital. Instead of my normal 3 hours in the recliner, I got 1.5. Exhaustion has taken over my body and I feel arrested from my acutely achy joints. I feel angry at the hand we’ve been given and toil in the fact that the world is moving on and the sun continues to rise and set while I struggle to put one foot in front of the other. However, one passing glance at my daughter and all my pain goes away. Somehow I'm overcome with love taking in the little parts of my daughters body. I give thanks looking at her small hands that are pricked with IVs. I feel gratitude looking at her sweet little button nose thats been intrusively invaded with a feeding tube to keep her nourished. I feel so irrationally angry seeing that tube because I've always linked that to a sick kid and I still can't grasp that my baby is indeed sick. I feel hope looking at her tiny chest moving up and down, although at times arrhythmically, breathing in the same air as I am. Because without hope, what are we? Our hope to keep her here with us runs deeper than any other feelings we are experiencing. More than the grief that weighs us down the second we open our eyes and realize we are reaching for help from deep in the dross. We give thanks for our time with her at the hospital, because we would rather have this than no time at all.
Most of our time is spent waiting. Waiting for test results. Waiting to hear the footsteps of a group of specialists to enter our small room and educate us about whats happening with our daughter. At this point in time, what is happening to her is an absolute mystery to everyone. The neurologist has called on his colleagues around the nation to see if any answers are returned and they are stumped. My daughter has baffled some of the worlds best doctors. I’d like to say that I'm surprised, but this falls in line so perfectly with the personality that was starting to poke through prior to her injury. Although I know my daughter best, she always stumped me on a day to day basis with her spontaneous personality and lovable charisma that kept the entire family on their toes. It’s one of the most endearing qualities I love about her.
My fears constantly circle around my mind. My biggest fear is that my little girl will wake up and not recognize me or her father. I dread to think that she may have to relearn to love me. Before she fell ill, I knew she loved me unconditionally. I felt it in the way she used to cling to me when I held her while we went for a stroll around the neighborhood. I felt it in the last smile that I remember her gifting me with outside the hotel in Dallas about an hour before she was admitted into the ER. I knew she was in pain, but she looked up at me and smiled with the last bit of energy she had left. We were standing outside the lobby getting some fresh air to see if she would perk up and she did for a few minutes. That last smile she gave me is burned into my brain... her eyes half shut, her lips trying their hardest to upturn and give mama the smile that I love to see. It was hard for her, but she did it for me.
My little Grace, I can't help but look forward to when you do wake up. If we are lucky enough to have you with us again, I cant wait to give you the biggest smile on earth and thank you through tearful eyes for coming back to mommy and daddy. I’ll wait forevermore to see your toothy grin and if at first you need time to recognize us, my heart will be breaking but also repair itself knowing that you're still here. I can't wait to see you again, my angel.