Originally written Saturday evening posted on Sunday evening
...your just so tired and hurt so much that it seems that waking up and facing yet another day is impossible. Tonight I am finding myself in this place.
We almost made it. We were so close. 5 months of protecting it, babying it, keeping it infection free. Just a week ago she was less than 10ccs away from her goal of full feedings. Just days away from not needing it any longer and then... it all fell apart. We stopped her feeds. Put her on TPN full time and tonight she pulled out her own pic line. Ripped it out of her arm. I had just turned off the lights and climbed into bed when I heard her fuss for a second(literally) and then begin to applaud. Loudly, over and over again. I thought she was playing. For a second. I had to switch on the light to see what had made her so happy. Thats when I saw it. A little white catheter that had been inserted into her arm, into a vein, that lead toward the heart. NO longer inserted, but pulled out from its place. Dressing still in tact. TPN still dripping from its end. Unbelievable. We were so close, but instead of being finished we are starting over.
My heart sank. The kid's hearts did too. We all knew she had to have this line.
I just can't find the words to explain how it feels to be pulled between our two lives. The life that keeps us home and the life that keeps drawing us away from our home and into the world of hospitals, procedures, illness, etc. There are no books, no instruction manuals, no tried and true volumes of advice that tell you how to parent a chronically ill child and how to remain a parent to your healthy children at the same time. I am constantly, every moment of every single day, the moments I am awake and the moments when I close my eyes, trying to figure it out. The weight of the stress, the burden, the pain is so great on some days that I find myself struggling to breathe. If only she could wake one day and be allowed to grow up as a little girl with no greater hurts than what a kiss from her mommy and pink band aid would fix. I dream of that life for her all the while knowing that it is not what will be.
I don't pretend to understand the will of God or the plan He has for this journey our sweet Ashley is on. I've never been one to say that I "know this or that was God's will" because I believe that is a very serious statement. One that should not be used lightly or thrown around as often as it is. I make one exception to that belief in my life. In this one and only thing do I know without a doubt that His will has been revealed to me. I KNOW that I was called to be her mom. I KNOW that I am doing what I was created to do. I KNOW that this was and is His will for us. If only I could share with you the evidence of this then you too would understand why Dave and I can confidently say this is God's will for us. In all of the confusion of this life we are living we are not confused about this.
So tonight we wait on a room in the PICU to open up for our Ashley and then we will take our tiny baby to have a new line placed into her veins so that we may begin this leg of her journey over again.
We are tired. She is too. We are weary. She is too. We are hurting and confused. She is too. I didn't get to read the end of this story and even if I had I would have still picked up the book and began the journey. In between the pages of it I have found great joy. Such that I had never experienced. I have learned lessons that have changed me as a parent, as a partner, and as a person. I have loved so deeply that there is no turning back. Obviously He still has more work to do in our family.