I've struggled for a little over a week now. Battling things inside of my head, my heart. Knowing that real life underneath the life we are intentionally choosing to live as good for today is really not that good. Ashley's unsure future looms heavily as a cloud above me, and I can make it for days on end with little thought of transplant, suffering, and survival. But...at the end of my days its there. I know it didn't disappear as clouds do. It did not dissipate above me. When I open my eyes the next day I am forced to cover my head, my heart, my home with an umbrella of sorts to keep on living the good parts of our life. Because, my friends, make no mistake that the good parts, the good days, the absolute blessing showered on us with every breath she takes has not gone unnoticed.
This morning I listened to a testimony of a mother and father who lost a child a while back. I listened to their story for 45 minutes straight and I came away with this one statement he made. It put into words what I attempt to live on this journey of Ashely Kate's. I'm going to have it put on something to take with us when we journey back to transplant in hopes that it will remind me of what I know to be true, because I will share with you that in those long days of battle in the PICU its easy to lose sight of what you know you is truth.
"On the hardest day of your life go to the deepest thing you KNOW about God and hang on."
Instantly what came to my mind is this, God IS good. That is my deep thing. Its the only thing that keeps me going in those moments when I so desperately cry out for understanding. He is good. He is good. He is still good. I hang on with all that I am to that truth. Even in the midst of great pain and confusion I have always know that He is good.
I've lived some hard days. Watching Ashley teeter between this life and Heaven and not knowing which one she will open her eyes in are hard days. Still, I know that harder days are coming. I hurt with that knowledge. I hurt a lot because of it.
Night before last as my sweet girl hugged my neck so tight and giggled with delight as I "got"her, I said to myself or perhaps to God "If only we still had six." I want to still have six. Six is an important number. 6 is the number of central venous sites that each of us are born with. We don't have six anymore. We only have one and its been the home to this current catheter for several months now. It won't last forever and that makes me cry. I laid down next to Dave last night and said, "If we had still had 6 then I think we could have at least 6 more years. Can you picture our Ashley turning 12 years old?"
Oh, how I want 6 more years! I know that more hard days are in our future. I know that one of the hardest days will be the day they carry her down the hall to open her up once again. Much harder than any we have yet to experience. The first time I had no idea. This time I do. On that day I'll be hanging on to what I KNOW about my God. I know this...He is good.
I'm hanging on to that.