Ashley's Story

She will leave fingerprints all over your heart



Wow...its so weird not coming to this place, spilling my heart, writing, sharing.

I'm sitting still. Being quiet. Going inside my own heart. Listening to my own thoughts. Absorbing.

I've spent a lot of time this last week watching. Taking mental notes. Documenting in my heart sweet moments in our home.

Little things.

Watching Ash follow Blake around from the moment he comes in the door. Seeing her little hands pat the seat next to her urging him to sit down. Smiling inside as she wraps her arms around Allies neck as tightly as she can each night. Listening to Blake say, "If I don't see you in the morning then I promise I'll see you when I get home from school." Staring at Dave lying next to her in her little bed. She on her Ipad and he working on his Iphone. Content to be close to each other.

I love how they love her. I love that she's six years old and they have six years of memories spent together. I love how she loves them. How she loves us.

Yesterday in the doctors office I listened to these words, " Her outsides don't match her insides. She's sick." "I'm all about quality and this is quality."

I hear those things and I smile and cry all at the same time. So proud to see her enjoy quality. So grateful she doesn't look as sick as her body is broken.

I'm beginning to think I won't ever take her back to transplant. I'm beginning to think that allowing her to live and live and live is the plan. Still I KNOW when faced with her demise I will take her. I will give her that chance. I will cling to the hope that she can in fact endure and recover and keep going. It is sooooo tempting to try and imagine her childhood continuing on and on although we all know it will not. She can't live with one central line for a lifetime. Its impossible to keep her going for years with this line. It really won't happen, but its so hard to imagine anything else. So hard to see her back in Omaha. So hard to separate her from Blake and Allie and Dave.

For now we are doing our very best to take it all one day at a time. Trying desperately not to get ahead of the situation. She bounced back again. Its been slow in coming, but she smiles again and plays and laughs and moves. She requires a lot more rest. More sleep. Her liver is stable again. Her bone marrow kicking in and doing its job. Finally! But...along with those things it seems that she has more joy. The joy in her heart and the twinkle in her eyes seems to grow and grow and grow as time goes by.

I think Dave and I are doing a good job of not panicking. We look at what it is and we seek treatment for it. We are usually the calmest people involved in the situation. Any unfamiliar persons involved in her care seem to get a little frenzied, but we remain confident and calm. It is scary I suppose. Especially if your not used to seeing a 6 year old with only 11, ooo platelets on board, a WBC count below 1, and a drop in Hemoglobin to 7. Yeah, I get that its scary...but she's living and playing and growing and happy. So when you look at her presentation...and see the joy on her face...and hear the giggles escape her soul...its easy to just agree that "her outsides don't match her insides" and keep going.

I think a lot. Especially at night when the house goes quiet. I wonder what is to come and how it will all unfold. I wish I didn't. I wish I could lay my head down on the pillow and sleep would come quickly, easily. It doesn't though. So instead I plan and dream and maybe even imagine what we could pull off in her lifetime. I insist on giving her life experiences. I sacrifice a lot of other things to make it happen. I refuse to just sit paralyzed by the fears that I have while our days at home waste away. I can't do that. Although it is a battle not to if I get completely honest.

For now its ok. Her line is clear once again. Well, its colonized with bacteria, but this week we have no fevers and no signs of infection. So...we are going to ride this patch for as long as we can and when the symptoms come again as we are promised they surely will then we will treat and hope and pray. We are free of IV meds for the first time in a while and enjoying the freedom that brings to us both.

Tonight we will load her up and allow her to travel. Her FAVORITE thing to do. I wish you could see the smile that comes across her face when she figures out we are going somewhere. That she's going somewhere. She will spend the weekend in the RV while Dave and I have the privilege of spending ours watching Allie do what she does on the soccer fields. Its a big weekend for her. Her first season performance with her new club team. I'm excited for her. She's going to be awesome! Blake will stay behind. Its a big weekend in his world too. His Allison performs tonight for her very first time on their high school drill team and that is HUGE. Something she's spent her life working towards. Its important to her for him to be there in the stands and so that makes it important to him as well. I LOVE that kid! He's so awesome. Life continues. Its busy in our world. Complex perhaps, but we are juggling it all to the best of our ability. Looking forward to each week as the calendar fills up and we spend time raising our teenagers and following their dreams.

I love this life. Really, really do. Its blessed. Priceless.


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