Ashley's Story

She will leave fingerprints all over your heart

1/08/2009

Could she be one of them?

Last night I found myself still exhausted. I'm not sure why. Perhaps the stay in Omaha, then the drive home two days before vacation, then the trip to Florida, interrupted by the next 9 days in Omaha and then the marathon drive home? Yeah, now that I think about it thats probably why I'm sleeping so deeply once I lay down. Anyway, I had a dream last night. Not a new one, but it was so real and so vivid that I hesitated to wake up this morning. I've dreamt this before as has Allison and Dave and I believe Ash's grandma has too. We all find ourselves dreaming at some time or another, but last night it was more real to me than any dream I can ever remember having.

Ashley Kate was walking. All over the house. I stood her up one afternoon and she took off. Like it was no big deal to her. I sat back in shock. Not sure what exactly she was doing in the beginning and then the excitement that spread throughout me was so, so real. I could actually feel the smile on my face. My heart was racing as I watched our very tiny, but very tall 3 year old walk around our home. She acted like it was something she had always known how to do. Then the alarm went off and I laid very, very still trying to get back to the place I was before I heard it. It didn't happen. I went into the nursery to find our beautiful 3 year old baby with her legs curled tightly up underneath her blankets while she slept. Nope. She's not walking. Not today anyway. I'll be honest and tell you my heart was let down and I felt an actual disappointment come over me. Ash doesn't walk and no one knows why.

There is no known medical reason to explain why our little one does not stand or walk She just doesn't. I guess I could try and explain it away by reasoning that a little more than half of her life has been spent in a hospital bed with a very sick little body. Honestly, that doesn't work. Most of our friends have done the same and all of them walk. We know not one other child in our "hospital" world who does not have the ability to stand and walk. Only Ashley Kate. Why? I wonder that often. We work just as hard as all the other families in therapy. We pray like everyone else. We try with her over and over and over again. Daily we work on getting well and learning to crawl, stand up, take steps, and walk. Its just not happened.

Yesterday I was reminded of a passage of scripture as we drove to the school to pick up the kids. John chapter 9. You know the story? The story of the blind man that Jesus and the disciples came across at the gate? The disciples asked Jesus, "Master, who did sin, this man or his parents, that he was born blind?"

Jesus answered, "Neither hath this man sinned nor his parents, but that the works of God should be made manifest in him."

Hmmm. I read that this morning and thought to myself, "could she be one of them?" You know who I 'm talking about? Could Ash be one of those people whom God has allowed to struggle for no other reason but to bring glory to Himself? and if she is then why is it so hard for us to accept that not only can she not walk, but she can't talk either? You would think that if this is the case it might be a little easier for us to accept the disabilities she faces. Shouldn't it? Shouldn't it be ok with me if I know God has a plan and that His plan just might include all of this to bring glory to Him? Shouldn't it be ok with me that my daughter isn't "normal"? I mean she's not even transplant normal. I know no other transplant children who can't walk and talk. Many of them struggle with the whole eating issue. I mean that's just part of the game we are playing, but walking and talking? They all can do it.

To admit that Ash has handicaps has been one of the hardest struggles for all of us. We see her as normal. She's just Ashley Kate and we love her. We love her so deeply that all the rest doesn't really matter. I mean we all know that she has disabilities, but its not something we focus on in our home. The only time we really have to focus on it is out in public. Like swallowing the fact that loading Ash with the wheel chair lift was going to be much easier on her tiny body then transferring her each and every time we got on and off the buses at Disney World. Talk about a hard pill to swallow for our children. For them to see that people were staring at us wondering why she just didn't get out of that chair when she looked to be normal. Asking us and them "whats wrong with her?" and struggling to come up with an appropriate answer. As far as we concerned Ash is fine. She is a miracle and amazing. We are all so grateful for her life. But try and get Allie's 5th grade class of girls to understand that Ash is just fine and to stop questioning her each and every time they see Ashley, "Does she talk yet? Why can't she walk? How come she still eats with that tube? Is she ever going to get well?" They mean no harm by asking. I know these girls. They all love Ashley Kate and have grown up praying for her daily, but the questions still hurt. Allie desperately wants her friends and the whole world to see Ashley like we see her. She's fine. Even if she never walks, and talks, and eats. There is nothing wrong with her. She's her sister and she is loved no matter what she does or doesn't do.

So that's why I ask if God is going to use Ashley's life to bring glory to Himself, shouldn't if feel like an honor to those of us who love her so deeply and not hurt so bad when we see her struggle? I'm just wondering. Why it is that we continue to dream so vividly only to wake and have to fight off that twinge of disappointment that creeps in realizing it was only a dream?

I believe deep down that the day is coming where our sweet Ashley Kate takes her first steps and says her first words. I really and truly do believe it will happen. And I know that when those days arrive that there will be much rejoicing and praising of God whom we will know has done a great work in her life yet again. I do have hope. There is no reason why these things can't happen for her. It has yet to be proven to us that it can't happen in her life. So again today, I will strap the stabilizers on her little legs and stand her in front of her kitchen and encourage her to forget about the pain, forget about the fear, and play. Play so hard that eventually she can no longer feel the stretch and the burn in her legs and just get lost in our world of pretend. Lets pretend just for those moments that last night was not a dream and that our 3 year old is standing and playing just like the other kids do. Eventually it is my hope that we won't have to keep pretending and that she will indeed stand there on her own accord and bang those pots and pans.

Until then I'll keep dreaming and waiting for God to reveal His glory once again in the life of our child.

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