Ashley's Story

She will leave fingerprints all over your heart



I woke this morning and had to shake off the overwhelming disappointment that tends to creep upon me after a night like I had last night. I can't really explain the feelings other than telling you that when something so REAL is happening when you close your eyes and then you open them to realize it didn't happen and may never happen then you find yourself fighting to stay encouraged. It makes no sense to me. I stood in the shower and couldn't find the words to pray. I would start and then just stop and shake my head as the water sprayed in my face. I guess words aren't really necessary. God already knows my heart and I believe He sees and understands the feelings I can't find words to share with Him. Anyway, its a struggle.

Last night I had the privilege of listening to my sweet Ashely rattle on and on and on. As long as my eyes were closed and I stayed asleep then I could hear her tiny voice. She talked and I listened. Her first words caught me off guard and then I found myself captivated by all she had to say. Oh what I wouldn't give for it to be real! For her to find her voice again and fill my ears with toddler hood tales and nonsense. To hear her say my name or ask for her daddy. To not be able to tear myself away for fear of missing out on the next cute thing she had to say. Dave and I have decided that if we had to choose between the two then we could choose the ability to talk over the ability to walk. What an unreal conversation that was! I never dreamed the two of us would be sitting at dinner on our 16th anniversary and discussing such things about our baby. Sometimes life doesn't make any sense at all. In that moment it didn't. I fought back tears and tried to put on a happy face, but the truth is that we, neither he or I, ever thought we would have to battle either of these issues in her life. We thought about a lot of things, but walking and talking never crossed our minds. We just assumed.

So I've received a lot of question about Ash and her abilities lately and I haven't found the words to answer them. I'm gonna attempt a few of them today, but to be honest I don't really have any answers for you and we haven't found anyone else who can answer them for us either. We've asked the very same things you guys are asking us on multiple occasions and I still find myself asking almost daily in my prayers. Here goes.

Can Ashley hear or is she deaf?

This one is easy. She hears beautifully, and I am grateful for this. To date we have found no evidence of a lack of hearing. Praise God.

Does she understand language?

Yes and no. Its obvious to us that she understands many, many things. If I ask her if she would like to read a book? then she will either shake her head no or sign the word "book. So yes, she does understand when we speak to her. If I ask her are you excited about your birthday? She has no understanding of what her birthday is or that she should be filled with excitement over it. Will she ever understand this? I'm not sure. If I ask her if she would like a drink then she will sign "drink". If I ask are you thirsty? then she will just stare at me and doesn't have a clue what I just said to her. So yes, she does understand language and no, she doesn't. Its all relative and I'm not sure why she understand what she does and why she doesn't understand what she doesn't. I don't get it.

Why doesn't she speak?

I'm not entirely sure. She did speak. Before transplant and even for 4 months after it. The day I last heard her voice was the day she coded and endured cardiac arrest and CPR. Is this why she stopped? I don't know. We assume so, but can't prove it and it wouldn't do us any good even if we could. What would it change if we knew that this was the cause? Nothing. If she lost oxygen to her brain due to this experience we can't repair that or give it back so it doesn't really matter. Ash doesn't talk. Will she ever? I hope so. With everything inside of me I hope and pray that God grants her this ability, but if He chooses not to then we will sign and we are all working hard to get better and better at this. I still ask this same question to Dave or to myself at least once a week. I can't quite get over this or have yet to understand it. Even now tears burn my eyes as I type this and I'm struggling with it today.

Is there something wrong with her legs or is she paralyzed?

No, she's not paralyzed, and we haven't discovered anything wrong with her legs. We don't know why she doesn't stand or walk. This is something we always expected her to do, but she never has. Dave and I thought for sure that it would happen for her after transplant like all the other kids we've met, but it didn't and hasn't. We continue to work on it each and every week. We make her stand on her feet, in her immobilizers, stander, and gait trainer. I would like to say that she's making progress and I guess that on some level she is, but it is painfully slow. Before transplant she was tiny, but like most babies would stand on our laps with our hands holding her upper body underneath her arms. She like the feeling of standing and "jumping". We never dreamed she would be almost 4 years old and not stand up. It honestly never, ever crossed our minds. We are confused and baffled by this.

Why doesn't she eat?

We knew from the very beginning of Ashley Kate's life that she was a "gut kid". Premature babies are usually, "gut" "lung" or "brain" kids. Some of them are a combination of two or three. Ash was classified as a "gut kid". We are very blessed that she did not struggle with brain or lung issues then(since transplant we have obviously become a chronic lung kid and a little of a brain kid too). From day 13 of her life when she experienced NEC(necrotizing entero colitis) we knew that she would struggle with eating. Some kids don't survive, some recover nicely, and some struggle. Ash obviously struggled with not only a premature under developed bowel, but one that never recovered and had to be transplanted. Even now with her newly transplanted bowel she struggles with absorption from multiple bouts of rejection. She has never learned to eat. She is never allowed to experience hunger. Her tummy is currently fed 24 hours a day so the idea of feeling like she needs to eat doesn't exist. She's always full. At times she has earned windows off of her feeding pump and during those times she's has learned to eat pureed foods, but currently while on TPN she has no windows of time off of the continuous feeding pump. Currently she eats nothing by mouth. Why she can't learn or hasn't learned to bite or chew food is beyond my understanding other than never really having an extended period of time to practice it between bouts of illness.

These are the question I have time to tackle again today. I don't mind you asking questions about Ash. Like I shared we ask them too. Daily. If not out loud to each other then in our prayers.

The most important thing I want you to know about Ashley Kate is that she is happy. She is loved. She is appreciated and wanted more than any child I know. Her daddy and I love her desperately. It is out of our love for her that we continue to work each and every day as hard as we do to find answers for her and solutions to make her life the best it can possibly be. I love her so very much and even though I shed many tears over this child, I feel more joy then I never was possible. God is still doing great things in her life and in ours through her struggles.

Thank you for asking. Your question don't hurt me they bless me. I'm blessed to know that your still here, still following, still caring and still loving this tiny girl. She is amazing and I love her so very, very much.


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