Ashley's Story

She will leave fingerprints all over your heart

7/25/2010

So Hard

Everything about this time in our lives is hard. Nothing is easy. I don't know that we have ever felt like we were under attack such as now. My heart is breaking on so many levels. Happiness is hard to find. I feel as though I'm surrounded by the bad, and all the good, the happiness, the contentment, the peace has eluded me. Slipped right through my fingers. I hate these feelings. Hate the place my sweet Ashley is in. Hate what this is doing to her, to us, to our kids, to our family.

We are trying everything to keep Ashley comfortable today. A fentanyl patch was added to the mix of narcotics being used in an attempt to better control the pain. I have never seen Ash hurt so much. Not in all of her short life. She is in a constant state of pain. Constant. She finds brief moments of relief and I'm not convinced that she is only resting in those moments from anything other than complete exhaustion.

Watching Ash struggle is so hard. So very hard. I need this pain to end. I need to see healing inside of her broken body. For her. I need this for her. It has nothing to do with me. We have been told this could last for weeks until her bowel recovers, for months if it does not until her tiny body can take no more and they agree to remove the dead organ, or for the remainder of her life. Which we are being told will be short. Whether or not this bowel recovers her lifetime has been shortened by her lack of venous access. Swallow that and find happiness. All it does is hurt. So deeply I'm beginning to run out of words. I can't even describe what it feels like to be assured that your child will in fact die while she is just a child. No growing up, no wedding, no grandchildren. Its all been stolen from her by scarred down, over used, veins. This is so hard.

I find it so hard to see our Ashley's life change this drastically this quickly. I find it hard not being there to pick up my son from his mission trip and not being able to be blessed by the recounting of the adventure. I find it hard knowing that I face missing out on the beginning of the last 4 years of his life in our home. I find it hard realizing that my Allison is leaving me this week. What a sweet, refreshing blessing she has been during this time. She has no interest in returning to our home without Ashley or me. She will be finding her place at one of my sisters homes for the next couple of weeks until she too must begin her school year without a mom. Junior High, in a new school no less. I find it hard to watch the clock and realize the hour of Dave's flight is approaching. One more evening to sit close to him, to talk to him, to hold his hand. Its not enough time. It is so hard to watch him leave. I find it hard to know that Ash and I will be alone again. In a state so far away from our home.

Our goal is to take Ashley home. We know that our time with her is ticking by whether it be weeks, months or years. We are aware that every moment with Ash is a moment to be treasured. To make memories. To love on her. The team has been very supportive of this idea. They too know that home is where we desire for her to be. Even in her current state. The plan is to get her infection under control or cleared. Secure line placement for her TPN and IV replacement. Figure out a pain management system that works the best for her. Then go home to live as a family. I'm sure we will bring in some type of nursing care to assist with daily blood draws and assessments. Outside of that we will treasure our moments together. Just the 5 of us. The sitting and waiting to see if healing will occur can be done here or there. Today's surgeon brought up the idea of taking her home to us this morning. We did not dream this up on our own. We simply let them all know that we were losing precious time as a family. Time that can never be gotten back. Once it is decided if she is healing or not then the tougher decisions will come our way. We all assume that we are about 6-7 weeks away from this. We will then have to return to be evaluated for transplant. The team will discuss and "vote" and then we will either list her for transplant and return home hoping to get the call or we will take her home and love her until her body gives up. Again, this is so very hard. I can't imagine the worst people in the world enduring such times, but my family is. There is no understanding. None.

Dave and I know that God still loves us and that He is working on something. Will we ever come to understand this side of heaven? I think probably not. Will our faith be the same once we come out on the other side of all of this? I think probably not. My hope is that it will be strengthened. That we will be able to say, "that God is good. He is still good". As I brush my Ashley's beautiful hair I am reminded that He knows the very number of those that are falling and those that remain. My questions of "is He here, does He see" are answered in that moment. I know He's here, and that He is watching. I just wonder how He's going to work all of this for our good. I'm being honest with you all when I say that Dave and I are struggling to understand.

This is hard. So very hard.

....watching this is not hard. I hope you enjoy it as much as we do.
video

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