Its 4:15 in the morning and I'm wide awake. My mind is cluttered with thoughts of conversation had between Dave and I as we sat across from each other in a restaurant last night. It seems that each time we slip away together to talk our conversations always fall on the subject of our youngest daughter. This evening was no different. It included smiles and laughter over her silliness, praise and worship over her zest for living and the miracle that she is in fact living, and tears mixed with silence over her delays and disabilities. We discussed more ideas and searched ourselves for more options in how we should proceed with teaching her to be...what? The right words escape me. All that she can be? That sounds ridiculous to me. The best she can be? I think she's pretty great right now. What should I say to finish that sentence? I don't know. I just know that we have to keep figuring out ways to teach her more and more and more. It doesn't feel right to settle in and just accept that she doesn't talk or walk or really eat. Why doesn't she do these things? There are no answers that have been found.
We discussed more therapies. There was a point when we had her days and ours filled with therapy sessions and this person and that coming in to work with her. It yielded little to no result. Basically all we accomplished was making everyone miserable. Ashley Kate and the therapists alike. Is this where we need to go again? Is this what we are supposed to be doing? Neither of us think it really is. At this time she has physical therapy each week and we continue to work on her ability to move. This has been her most successful therapy to date and I wonder if its because of our relationship with her therapist that makes it more successful than the others? Her therapist has a relationship with us and had before the birth of Ashley and I truly believe that she loves Ash and nothing Ashley "says" or "does" could run her off. Our other attempts at different therapies have not been successful. We tried occupational. There evaluation of Ashley is that she has fine motor skills down. She doesn't really need help figuring out the little things. Its the big ones like rolling, crawling, standing, walking that she can't seem to do. They thought that Ashley's biggest problem was trust and understandably so. Occupational didn't seem the way to go. Speech? We all know she doesn't talk, but therapy was yielding no results. We have tried it at several different points in Ash's life and it has never done anything for her. The biggest thing we have learned is that when she speaks she will more than likely begin to eat as well or vise versa. The same muscles are used for both skills and they kind of go hand in hand. Feeding therapy? Well, lets just say that our therapist agreed that I make more progress with her than we ever did each week with her therapy. There were no "tricks" that were taught to teaching Ash to open up and eat. I was hoping for some, but we basically did what I had been doing her whole life and what I have continued to do. So is more therapy the answer? We went back and forth and back and forth and decided that we've been there and done that.
Neurology? Do we go back to getting ourselves on the waiting list to have her seen and diagnosed? and what good would a diagnosis do for her? Can it "fix" what is wrong? or would it only place her in a box and slap a label on her? We sat on the waiting list for months and months when they were concerned with the possibility that the cancer had moved into her brain and spinal fluids. Eventually she got sick and had to be hospitalized during that wait and we kind of fell of the list. Honestly, we aren't interested in any labels for her and even though the idea comes up every now and it doesn't seem like neurology holds the key.
So as tears fell from my eyes last night these words came from my broken heart, "I never imagined she wouldn't be able to talk or walk. Did you?"
His reply was this, "Nope. Eat a steak with me one day? I never felt like that would be a possibility, but talking and walking never really came to mind. I just figured she would." Then he shared this.
Earlier that day he ran into a parent who faces some similar struggles as we do and as they visited the other dad said something about glimmers. Glimmers of hope that come slowly but can be held on to and thats what keeps them going. Slow progress but still progress. As he shared his conversation with me I sat and silently cried as I nodded my head. Dave shared with me all the progress he sees with our Ashley Kate and we sat at the table and went through the list.
She can sit up. For hours and hours she sits and plays. This is a glimmer of hope in our world. There was a time when sitting seemed impossible for her.
She can drink. From a cup. She holds the cup and swallows the water with no trouble. I'll never forget how excited we were the day she picked up that silly cup and drank from it. We worked for what seemed like forever to get her to do that. This is another glimmer of hope in our world. If she can pick up her cup then someday she may pick up her spoon.
She can giggle. She has a voice. It has not been silenced. With this voice she may speak words again. Someday. This is my biggest glimmer of hope when it comes to her ability to talk. I know she wants to be heard.
She can sign. Everyday she learns more and more words. Until the day that she learns to speak with her voice she can communicate with her hands. When I wonder about her level of thinking ability this puts my mind at ease. Glimmers. She is so intelligent and capable of learning new things.
She can play. Give Ashley Kate a new toy with buttons to work or pieces to use and show her how and then watch over the next few minutes as she figures it all out. Day after day I see glimmers of her mental ability.
She can bite. A cracker, not us. That is huge. Until a few weeks ago she had never used her teeth or her hands in conjunction with each other. The day she held the cheez it to her mouth and used her teeth to take a bit was HUGE. It glimmered with possibility. I believe she will learn to eat someday. She really will.
She can remember. Ashley Kate remembers where each and every lift a flap or touch and feel spot is in every single book she has. Show her a new book and watch her little hands turn each page and feel it from top to bottom looking for new textures or hidden flaps to open. Unprompted she automatically looks. She shines in this area and always has. The fact that this one thing has never changed throughout all she has been through glimmers with possibility. Her brain has held on to this one piece of knowledge even though she endured cardiac arrest, chemotherapy, and multiple periods of time on the ventilator.
She loves. Her family so very much. My heart smiles at this fact. She gives and receives love. Ask her for a hug and she leans herself into you and pats you with her little hands. I say the word "I" and lean my head toward her and she automatically leans her forehead to mine and shakes it back and forth as I say, "I love you, love you, love you." She snuggles her head into my neck and rests there for a moment every single time I pick her up. She is comforted by our presence and our touches. Blake and Al can settle her in an instant when they walk into the room and speak to her or pick her up. She loves to be with them and this glimmers brighter than any of the other abilities she has.
Making decisions for her present and her future are things that we have to do. I would love to ignore the facts and pretend that all is right, but that would be irresponsible. I have to figure out how to be not only her mommy but her teacher as well. This week we will begin a new set of activities. Flash cards. Big huge flash cards that I used to teach Blake and Allie their colors and their shapes with. Ashley Kate is almost three and she is smart. She can learn things too. It may take us longer than it did with the other two, but I am willing to work on card at a time for as long as it takes. Its all just fun to her anyway. Playtime with mommy. She loves for one of us to be on the floor "playing" with her at all times. She may not speak yet, but she can point, she can choose, and she can sign.
Glimmers. Hopes and dreams glimmer inside of my heart. They aren't really dead they are just changed. Altered a little. Different than what I had initially thought they would be. I'm clinging to them and not letting go.