One of Ashley's IV pumps alarmed about three thirty this morning. It was an easy fix, but still woke her up.
She began coughing and gagging and struggling making it pretty much impossible for her to find sleep again. I came back to my bed since my mom shares Ash's room and was with her, but listened to her struggle for an hour. I prayed for rest, sleep, ease to come for her. I got back up and decided to sit her up to see if I could make her comfortable. Thats when I noticed it.
Trickling from her nose.
The sight of it threw a punch that I'm not sure I'll ever recover from.
I fear the beginning of the end has begun. It could be weeks, months, years? No one can say.
I lay here for hours this morning scanning back through the decisions. Years and years of doing my very best to make decisions for my baby and yet I see now that I've chosen to do the wrong thing in hopes of saving her life. I hate myself for this.
Truly, I detest every part of me as I watch her begin to fail. HOW I WISH I COULD have known what was the right and what was the wrong choice to be made.
Yesterday I made one of the hardest decisions I've ever had to make. I placed a phone call. One that I'm not sure can offer us any help, but I pray that it does. Dave and I have a meeting Wednesday evening. We are searching for solutions. Direction. Help.
How do I begin to prepare my children for what will prove to be the hardest time we've ever had to face? I try to gently talk with them. I try to remind them just how sick her liver is. They won't talk. They can't. They don't want to hear anything negative about her. They can't hear it. They still have faith that she will one day walk. Talk. Go to college. Find love. Raise a family. I kid you not. This is what they believe. If ever there were two people to have on your side, two people that you would want in your corner, it would be our Blake and Allie. They will hear NOTHING other than want they want for her.
Today I will drive with Blake to Dallas for a double header. I'll drive home tonight. Tomorrow night, after our meeting I will drive back to pick him up because he has another double header Wednesday evening. I think it will be the first time in all 17 of his years that he will have no one there in the stands pulling for him. I hate the thought of that. I seriously do. He doesn't mind...I do.
Thursday I'm going to do something that many may not understand, but we feel it needs to be done.
I'm setting out on a road trip with Blake and Allie. Crossing from Texas to New York. We had planned on flying, but chose instead to invest the time in the drive. Invest the time in making memories. Precious days filled with laughter, and adventure, and time. I don't know where our journey is headed in the coming days, but I do know that my heart, my mind, my energy is going to consumed with my sweet Ashley. My big kids deserve to have all of me for a few days. As hard as it is for me to set out on this journey away from her, I know its imperative that I do so. So...I'll set my broken heart aside. I'll put a smile on my face. I'll love on my teenagers for a few days. Give them the very best of me that I have left inside to give. I'll grab the most out of the time I have with them because I think we are all going to need these memories made this summer to fall back on.
I've toyed with the idea of cancelling her birthday party. I can't bring myself to do it. I've never failed to celebrate every day of her life and I can't start doing that now. She's still here. Still living. Still smiling. We managed to celebrate her 5th year of life when all hope was lost as she lay in a hospital bed...3 years later here we are planning yet another celebration. My heart is breaking, but I fear I would regret not going forward. I don't want anymore regrets.
I continue on with my everyday life, going through the motions, sitting at ballparks, watching volleyball games, going to the grocery store. From the outside no one has a clue how broken I am these days. Not a clue. Funny how we are all walking around in this world bearing the heaviest of burdens, crushing burdens, and our neighbors are never the wiser. I'm glad we don't have to wear our shattered hearts on the outside of our chests, but mine does make me wonder which of those around me is hurting too.
I'm bleeding too, but mine won't bring about my death. My little girls will.