Ashley's Story

She will leave fingerprints all over your heart



I struggled figuring out what title to write for this post. I couldn't write "baby steps" because she's not a baby anymore. That realization came to me as I kissed her as she slept last night. Her long legs stretching from end to end across the crib. Nope, our sweet Ashley is no longer a baby so the title "baby steps" wouldn't be right. I guess we'll never have any of those to record. That makes me a little sad. I typed the words "first steps" and then quickly deleted them because I thought that might be a little misleading. On top of that they weren't exactly what we want to remember as her first steps. So I settled on the word "steps" because technically they were steps of some sort and they are the steps that we pray will one day lead her to taking those first steps on her own.

During therapy on Friday Ashley took steps. She really did. It was the first time we had actually seen her bend her knees, pick up her legs and pull her feet forward. It was such an amazing thing to watch and yet one of the most painful things I've ever seen. Nothing with Ash is easy. Each and every achievement evokes such a wide range of emotions. Tears rolled down her cheeks as we pushed her to her max and tears stung my eyes as I felt such a pride and a pain well up in my heart.

Ashley was placed inside of her gait trainer. We had removed the seat from it weeks ago forcing her to stand up full weight bearing on her own feet. The standing hasn't been easy, but she's doing it. We have the side supports pushed up around her torso under her arms and the handles out in front of her. She stands on her legs and holds on with her hands. In the previous couple of sessions I would sit in front of Ashley and tap or pull the back of her knees encouraging her to move her legs or "take a step" toward me while Sue(our PT) would push the gait trainer forward. Ash would drag her foot forward with much "encouragement" from my hands, but was never able to pull her right leg forward at all. It was starting to concern Dave and I because she seemed to have no ability to bend that knee and lift that foot on her own. Well, on Friday we saw that she indeed does have the ability to move that right leg. It's not easy. It took all of her strength. She cried many, many tears, but in the end she "stepped" those tiny feet of hers all the way out of the house and to end of our driveway.

I can't explain to you what it feels like to watch your daughter struggle as hard as Ashley did that day to do something that should come so easy to her. There is pain, there is hurt, there is pride, there is admiration, there is joy, there is anger, there is a lot involved. I encouraged her as Sue pushed the trainer forward. I cheered her on. I would tap on her knees when she thought she couldn't go one step further. I cried with her. I hurt for her. I held her close at the end of the driveway and loved her more than ever. This child has been through so much and yet she wakes up each day and tries again.

It exhausted her to take those steps. I wish I would have counted how many of them it took for her to make it there. Along the path there were great moment where I watched her move her legs on her own in a left right left pattern. I saw her do that twice. Along the path there were awful moments where I watched her little body try to collapse through the trainer. I saw that happen to her twice. She wanted to give up, but did not. Along the path there were in between moments where the steps did not come quickly, but they still came. One, two, three. Right, left. I'm sure for my Ashley it was the longest path she'd ever been on. She wanted it to end. She wanted to finish. She wanted to be done and be picked up and carried off of that stupid path. As her mommy I hurt and I celebrated. As ugly as it was she was doing it. Through her cries, her screams, her tears she stepped her way all the way to the end of the path, and then I picked her up and I held her. I walked her back up the path and I told her how much I loved her. I told her how proud I was of her. I kissed her and comforted her and then I stood there in awe of who she was and how she walked along the path set before her.

In so many ways I feel like I've been on that exact path with Ash before. I feel like the picking up of my feet to keep going one step further had taken all of my strength and as the tears fell from my eyes I wished for it to end. To get to the bottom of the path so I could sit and rest and wait for someone, anyone to pick me up and hold me. I learn so much from my daughter. So very much. She is an incredible person with such a story. A story that continues to be written each and every day. I watch her smile and I wonder how she can keep smiling. I watch her reach up to me and I wonder if I could reach out for the one who made me work that hard day after day.

Oh, how I love this little girl. Oh, how I want so many things for her. Oh, how I watch little girls her age run and play and giggle and imagine what it would feel like to see my Ashley do those things. Someday. If Ash can find the strength to keep stepping one foot at a time then someday she will be one of those little girls. Never just like them because she will know too much. She will remember the pain of getting there, but I somehow think those memories will help her to appreciate it more. She won't take for granted each of those steps, but perhaps she will celebrate them. I know we do. Even if they aren't her baby steps or her first steps they are still steps in the right direction. For that I am more grateful than you will ever know.


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