Ashley's Story

She will leave fingerprints all over your heart


One Week

Its hard for me to realize that it has been a whole week since we first discovered the lump of infection on the back of Ashley Kate's head. What a week it has been!

The range of emotion I have been through since the discovery is exhausting all in itself. My first thoughts were those of cancer. I know it may not seem logical for most to immediately have thoughts of cancer, but when you reside in a world like ours with Ash and when you know how at risk transplant children are of developing cancer then it makes perfect sense. I spent most of last Sunday in a panicked state of prayer for my girl and the newly discovered lump.

As her physician examined Ashley last Monday morning I knew immediately that something was wrong. His demeanor and urgency was different than in our past visits with him. Still I was unsure what we had discovered, but the immediate CT scan would show us soon enough.

As we viewed the images of her head with the radiologist Dave and I were once again thrown into the part of Ashley's world that causes us some of our greatest pain. I never view a CT of her brain without the feelings of anger and confusion and frustration entering my mind and my heart. It immediately puts me on the defensive and as complete strangers to me ask us questions about her development and her cognitive levels I become ready to defend and fight. Its crazy. Crazy because I know its coming and crazy because those feelings are so ridiculous. I don't have to defend Ash to anyone and I surely don't need to fight anyone. They are doing their job and making their observations. They aren't passing judgement on Ash.

Its almost humorous as we discuss the times in her life that I have felt ready to fight the whole world. If you knew me, you would know I don't like confrontation. You would also know that the last thing I'm going to actually do is fight anyone, but when it comes to your kid I think a false bravado comes over a momma. You think you are the biggest, baddest thing to ever walk the earth and fight you will if it comes to that. Its ridiculous, but its what us mommas do. There have been three times I can distinctively remember feeling as though someone was going to get slugged by me. The first came the day we entered the NICU and the neonatologist described our sweet Ashely as failure to thrive. Ready to fight. The second was the day I sat in the PICU in Omaha and one of the nurses informed me that Ashley was a chronic patient. I didn't know what that meant at the time, but moments later as it was described to me I was angry. What did she mean we would be a constant patient for the rest of her life? Ready to fight. The third happened last Monday as the man who read Ashely's CT scan with us, who had never met my daughter and had never seen her immediately looked at us and said, how severe are her delays and what are her other diagnosis'. I was angry. Ugh!!! not really at him, but at our world. How could he immediately know she wasn't "right"? What on that stupid screen of images let him make those judgements about my beautiful Ashley in a matter of seconds? What? I was so angry, so hurt, so injured by his words.

Honestly there was no time to dwell on that though, Dave and I viewed those scans and in those moments we knew there was trouble and it was the kind of trouble that would have to be dealt with soon. I drove home, unloaded Ash, walked into the house, and the phone rang with the instructions to get her to the hospital as soon as possible for a direct admit. She would be in surgery in a matter of two short hours. And she was. It was that fast.

As Ash was in surgery our pediatrician came to her room to check on Dave and I, and I had the images of her CT pulled up on the screen. We were joking a little as I shared with him my "anger" over the fact that a stranger could immediately tell somethings were wrong with Ash just by looking at the images. I announced that I did not really care for that man who read Ashely's CT results. He laughed a little at my description and then I said, "What? What is it that told him that in a matter of seconds? I want to know? Where is the flashing sign that says assume that?" He, still smiling at my reaction, patiently walked us through the images of her brain and showed me just exactly what it was that told the story.

When I say I have run through a wide range of emotion over the last week, this is just the beginning of it. I could write for days about the places God has taken me inside myself this last week. Ugly places and lovely places all mixed into one big mess. I'm exhausted. I'm grateful. Beyond thankful for the discovery and the quick actions that ultimately spared us more brain injury. I'm learning to accept the places we are in with Ash even though my heart desperately wants to stand up to them and the whole world and declare that she indeed will have a normal childhood and normal life span. I'm processing a lot at this time and God is working to bring me to the places that I have to get to as her mommy. Its not fun. Believe me its draining me, breaking me, and building me all at the same time. One of the most difficult parts for me came yesterday when I had to actually cut pieces of Ashley Kate's precious hair that we have been desperate to grow back since losing most of it this past year out of and away from her incision. My heart was devastated yesterday afternoon, but in order for her to heal I had to make that heart wrenching decision. It made me physically ill. I have NEVER cut Ash's hair. We have lost it many times over the course of her struggles and infections, but I have never intentionally put a pair of scissors to it.

How's Ash been through all of this? AMAZING. I can't describe her in any other way. She has amazed us all. Her incision and her ear are very, very sore. She is protective of it. Very protective when I try and go near it to dress or clean or examine, but other than that she is so great. She has played and laughed and continued on as if none of this happened. She amazes us all. Her parents and her physicians. This child is made of steel! Truly she must be.

So today brings me to one full week since discovery of the infection that could have stolen so much from us. It was silently residing in the spaces next to her precious brain that we have fought so hard to protect. It entered through a common ear infection that went unnoticed because our sweet girl is just that tough. She never made a peep, never a sound, never a symptom of a common childhood illness. The bug that invaded her is a monster of a bug and if not cleared from her system will in fact keep her from being a candidate for another transplant. We are working to complete treatment and with one week down and two weeks to go I am hopeful with each and every infusion I connect to her precious, fragile central line.

The beauty in this whole situation is my Ashley and the joy she continues to radiate throughout our home. She is precious and her laughter floods the rooms and the halls daily. More than that it floods our hearts as well. I don't have many pictures that I can really share since coming home with her. She looks really, really yucky. Her hair has not been shampooed since last Sunday, moments before I found the lump on the back of her head. Its sooooo gross! I have to wait until Wednesday before I can wash it again. The incision is still draining into it from where they removed the drain(it has yet to seal closed). She's not looking very pretty these days, but she is happy. I may load a video clip on here today and allow you to hear the sounds of her laughter. It was filmed late one night this week when she should have been asleep, but instead had turned on her ipad and was playing angry birds by herself in the dark. The quality of the image is awful, but its the sounds of her voice that I was attempting to capture. A sound I hope to never go silent. She was so, so funny and I stood outside her door praising God for my daughter and her spirit.

One week. Its been along one!


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