I walked past her playroom on my way out the door yesterday and this image caught my eye. Look at it for a moment. Do you see what I see?
My sweet Ashley Kate. She is such an amazing girl. Trapped inside her world, without a voice, but so very smart. The thing about my Ashley is that its hard to know just how incredible and how intelligent she is unless you have been given the opportunity to really spend time with her. To observe her play, her means of communication, her energy. She is so misunderstood by so many. Passed by because she is thought to be delayed, behind, mentally deficient. I beg to differ with those opinions. She is SO smart. She just isn't able to communicate it to others who only have a few seconds or minutes to spend paying her attention.
Ashley understands so much of her environment and yet there are things she will never understand. I can't explain how her mind works, but I know that it does. For instance, she understands morning, noon, and night. She knows when its time to get up, when her daddy will come through the door for lunch, and when its time to go to bed. However, she does not understand the hours of the day. She doesn't comprehend that 8am is the time she gets up, or that 12pm is when Dave comes home to eat, or that 9 pm is the hour she is readied for bed. She understands when I say remember when this or that happened, but yet does not know what yesterday is. Although she does know that tomorrow means not today. She understands the difference between now or when I say not now but later. Around 11:30 each day she begins to sign for her daddy and his phone knowing that in just a few minutes he will be arriving at home and she will be allowed to play on his phone while he eats.
Ashley grasps much of the world around her, but mainly only the things that surround her in her own part of the world. She has no understanding of the word sin or what it means and yet I see her do it every single day just as we all do. She knows Nemo, and Blue, and Bambi by sight and yet she has no idea who Jesus is. How can this be? I don't understand it. She watches DVD's of all of the above, including stories about Jesus, but when I ask her about any of them she can sign the fictional but not the real. There is recognition of the fish, the dog, the deer and none of the Saviour. Its so very confusing.
Ashley knows pain. She remembers well the injury to her little heal and to this day, a full two years later, the memory of that injury is so real in her mind that she is unable to place the fully healed foot flat to the floor to take a step. The memory of it disables her. Still she does not remember or comprehend the transplant. That word has no meaning to her. The scars mean nothing to her, but her tiny little stoma is of great interest to her and I see recognition in her eyes when we talk about it. We talk about her special gift and she knows that is part of it. She will lightly touch it and point to it on occasion and want me to tell her about the special gift she was given. She knows the hospital by sight and knows its not a place she wants to go. We can drive in the direction of any of them and she instinctively knows where we are headed... Blocks before arriving... and she will tell me she does not want to go.
Ash is an amazing little girl. So happy. So full of life. So unique. She is unlike any other transplant patient I know. I have never met or heard of another child of bowel transplant who is unable to walk or talk or eat. Most of our friends have their own struggles, all fragile, all complex, but yet they are able to walk, talk, jump, and run. Ash doesn't have those abilities. Oh, I believe she was born with the potential to achieve all of those things. Just circumstance and error and situation stole them out from under her. Still there is little room in our lives for bitterness or question. When you live a life of sincere gratitude for every single breath she takes its hard to concentrate on those things. We try not to dwell on them. I'm not saying they don't ever creep into our thoughts as we watch her struggle to step across the room in her walker or see her become frustrated when we don't understand what she wants because they do.
I want so much for her. I see so much more for her.
Let me explain the picture above. I gave Ash a few toys to play with yesterday afternoon while I got ready to leave for Allie's game. I placed a piano, a dinosaur, and a few books on the floor across from her and asked her to go play. I did not set out this particular book. The image I stumbled on brought a smile to my face. She made her way across the floor to her book shelves. She searched through the hundreds of books and came across the one she wanted. She took it back to the dinosaur I had placed on the floor and stood it up on end in front of it. She must of remembered that book when she saw her dinosaur and set out to locate it. I can't fully explain to any of you why it struck me as it did. I just smiled knowing how very smart my girl is and smiled as I realized what she had set out to do. She matched her toy with a book that has pictures that look like that toy. I called Blake into the playroom to see if his reaction matched my own. Without saying a word to each other he looked at the display, then looked at me and we both smiled ear to ear. He got it. He knew the significance. He understood.
As I walked out the door I head him say, "I love you Ash...you are SO smart."