Round the Clock

Its a not stop, round the clock, every two hours infusion of pain medication and yet its not touching the struggle in our little ones body. Its so very sad. For the second night in a row Ash has yet to find sleep. She is awake, crying, moaning, clawing. My heart aches for my baby. I want this to stop. Its so very unfair.

I guess if we were looking for signs of healing we would see a decrease in the amount of her stool output(we haven't its getting higher) and we would see her begin to get more and more comfortable as opposed to hurting 24 hours a day. If I look at these two things then my heart sinks. I'm trying not to concentrate on whats happening today, but think about weeks from now. Its just that I know without improvement in these two areas we are looking at a very long, very rough, very unsure path ahead of our baby.

I hurt so much these days. I hurt over what Ashley is living through. Without a huge amount of narcotic in her system Ash can't function. The pain of rejection is so severe. She has never experienced it to this degree in the past. That lets us know what degree this bout of rejection is. I've never seen anything like this happening to Ashley. It is so constant with no relief.

She is an amazing girl. Her threshold for pain is very, very high. Which tells how very much she is hurting this round. I am helpless. I can't take this from her, but would in an instant if I had the power too. Its in these hours that I wonder where God is and if He is watching my daughter hurt. I know all the right things to say, I know He is supposed to be here. I do. I just wonder why this is necessary and since He is in control why He won't intervene on her behalf. Ash didn't do anything to cause this pain in her own life. She is innocent. My heart breaks over that fact. If I ever feel angry over her birth history its in times like these.

We are trying everything we can to make Ashley comfortable during this time. Knowing what lies ahead of her if things don't turn around pierces my heart. The journey back is going to be the longest of her life.

The other day someone walked into this room here in the PICU and said, "Oh, I see someone is a little spoiled. " It took me back for a second or two and then she was gone before I could ever respond. Our sweet Ashley is not spoiled my dear friend, she is LOVED. She is taken care of. She is provided for. She is made comfortable. Our daughter has never asked us for anything. She's never asked the world for anything. She was born, she came into our lives, she changed us, she continues to challenge us in our walk with our Heavenly Father, and she survives. Nothing about Ash is spoiled. Nothing. I wouldn't wish her path in this life on another soul.

Your prayers for Ashley are all that keeps us going in the hours like these. I know that even when words fail to come to my lips that someone, somewhere has my baby covered and is crying out to God on her behalf. The value in that knowledge is greater than anything I possess. Each of you are so very precious to this family. Sincerely, I thank you. Our baby needs your prayers. From the youngest to the oldest, from the closest to the farthest, from the most spiritual to the ones who are just beginning to walk by faith. Ashley Kate is alive today because of the prayers of His people. I believe this with all of my heart.