Ashley's Story

She will leave fingerprints all over your heart


A good day

I don't know if you can tell by the look on this sweet face or not, but we have had a good, good day. Ash is feeling better today than I have seen in months. She is full of smiles, full of silliness, full of sweetness. In this photo she is trying to sign the word "book" to me but not willing to let go of what Blake calls "the magic carrot". No matter what is going on, tears, tantrums, surgeries, stitches, dressing changes, honestly it doesn't matter what is breaking her heart if you hand her the "magic carrot" she immediately gains control and life is in that instant a little better for her. There's nothing really magic about the carrot except that it holds bubbles inside of it and she knows that. You may recall seeing this "magic carrot" in her hand in the pictures I shared from last weekend. She's never far from it. I pack it with us no matter where we go. Its a piece of security for her. A little bit of happiness when things in her world begin to become not so happy anymore. I love this silly girl and that silly carrot(it was the only thing in her Easter basket this year that she showed any interest in).

Last night Dave and I had to change the dressing on her new line for the first time. She never likes dressing changes, but I have never seen her actually feel pain from one of them before. Mild irritation at being held down, but never physical pain. Last night was rough. Really, really rough. This line in on coming out of her left rib cage. The catheter that extends to the outside of her body through the opening is actually larger than one I ever remember her having. She is bruised and bleeding and has more stitches holding it in place than I ever remember her having. She screamed and screamed. Growled and kicked me so hard I almost dropped everything in my hands and almost had to start over. Dave was holding her hands and arms down, but she is so long now that its impossible for me to control her legs and her feet while I am working on her. I never want to put it her through this again, but we will. Once a week. Every week. Until she no longer needs this line. Its in a very miserable place for her. Really miserable. Our hearts were breaking and the kids ran to hide in their rooms until the screaming ended. Then Allie begged me not to ever put her through that again and demanded to know the reasoning behind it. "Why can't you just leave the one on that's already there!" I tried to explain the whys behind it all, but at eleven she doesn't understand it all. All she knows is that Ashley is hurting and that we are the ones causing it.

But today...she's happy. So incredibly happy! Such joy radiating from her countenance. How I wish my countenance could shine like Ashley Kate's does on her good days. This child is so amazing. So precious. So wonderful.

I'm grateful for this day. For the sweetness of my youngest daughter. For her "magic carrot" that can even make the tears from last nights dressing change quickly disappear. For the rain I hear falling on our roof top. For my son who sits by my side as I type visiting with me "just because"(we are actually going over pictures of him batting this season and critiquing them for this weekends tournament. Fun stuff! Seriously, I love doing this with him). For the shopping trip I took with Allison Brooke this afternoon and all the things she said that cracked me up. For the opportunity we have been given in the selling and buying of our homes. I still can't believe we are leaving this house in a matter of weeks. I keep snapping just one more picture of this or that not wanting to forget the memories and the homecomings Ash and I have had in this home. Blake told me the only reason he is sad about leaving this house behind is because he knows this where Ash feels safe. I shared with him that I believe she feels safe here because she knows its where we all are and I'm hoping it won't take her long to feel the same way about our new home. I'm not sure if I was trying harder to convince him or myself of that. Anyway, still I find myself grateful that things have gone so smoothly for us during this whole process. Its been a good day in our house. Our little yellow house. I'm hesitant to pack too much because I still want it to feel like our home each night when we walk through the doors. Last night Dave and decided we could wait until the last week to pack the rest of it all. That way it still looks like home. We are really attached to this place. It cracks me up!

I'm so thankful for good days. Although I don't like the bad ones, I truly believe its the experiencing of the bad that makes the good so very good. We are blessed!


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