Ashley's Story

She will leave fingerprints all over your heart


Moving On

For the first time in an entire year Ashley Kate ate. And ate. And ate. It was the funniest thing she's done in a while and that is saying something cause she's always funny. I'm not sure why I decided she should get to eat again, but while I was at the store this week I picked up a few jars of her one time favorite foods. Then we went for it.

She was so happy. So happy! If I put the jar down she would grab my hands and make me pick it back up. She sat on her little perch and smiled and giggled and swallowed and was absolutely giddy about the whole process. She would lick her lips and say, "mmmm" and sign "more, more". If the jar would empty out she would sign "please more". I was cracking up. We were trying to be cautious since we had no idea how her little body would react to eating with no where for it to actually go, but she wouldn't allow us to be cautious. After about a jar and a half of food she was topped out and up it all came into a towel. Afterward she asked for a drink and then "more, more please". So...what was I supposed to do? I gave her more.

The entire time we had her tummy open to drainage and so technically she "ate" none of it. She got no nutrition or caloric intake from any of it but the process made her giddy. Absolutely giddy the entire time. It was precious!

I couldn't get over the "licking of her lips". It just tasted soooo good she couldn't miss a bit of it. I didn't even realize how much she missed the opportunity to eat. Its been over a year now since she became sick again and she lost so much more than her bowel. I forget sometimes just how much of the "normal" she had worked so hard to gain was actually taken from her.

Ashely has been totally fixed on wearing her shoes this week. She wants them on in the morning when she wakes and won't let me take them off even after putting her into bed. I tried to sneak them off of her about 11 last night and she woke up crying for her sandals. So... I put them back on and tucked them under her blankets. With her interest in shoe lately I have been putting her at her standing bar, forcing her stand up here and there and just encouraging her to get the feel of her weight on her feet again.

Today I asked her if she wanted to walk. She didn't protest and so I pulled out her walker. I stood her in it and still she didn't fuss. Together we took a few steps and still she was being a trooper. We just kept at it for a few minutes and then I noticed she wasn't even leaning on the back of the bar. She was actually standing on her little feet. This is the first time in a year that I have witnessed her stand on her own two feet. I had to get up and grab the camera and the whole time she stood there and waited for me to snap photos of her. It was so amazing!

So I decided to title this post "Moving on" because that is what I see Ashley Kate doing. She's moving on from the illness, the predictions, the struggle, and the whole insanity that has plagued her life over the last year. She's happy. She's growing. She's getting stronger. She's getting her life back and I'm witnessing her move further and further away from those dark days of last summer.

There are still struggles and there are still some very raw emotions. There are still unbelievable odds stacked against her survival. There are still days of waiting on an organ list ahead of us, and days of transplant and recovery and all its evils in her future. None of this has changed, but its an attitude of "I'm going to be 6 years old despite it all " that she has adapted and I'm moving on with her.

I spent a few moments peeking back at journal entries from this time last year and it brought such a remembrance of the pain and the despair. I couldn't linger there long. The heaviness of my own words pierced my heart and the tears came quickly. I had to walk away from it all. I had to. Going back is still just too hard and realizing that it is in our future paralyzes me with fear. I can't live that way.

Instead I look at these pictures and I smile and I see the determination to be happy in her face and I can't help but be just as happy. We set her next appointment while at her doctor in Shreveport this afternoon. The next one is in three weeks. At which time my girl will have already turned 6 years old. If that isn't evidence of moving on then I don't know what is. I'm smiling at that thought. 6. I asked God to let her be 5 on those hard days last summer and here she is turning 6. He's good to us. He really, really is.


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