Sunday, July 31, 2011

A Glimpse

Elli doesn't do many things like a typical child. In fact, in a given day, she may not ever act like a typical child. Elli doesn't walk like a typical child. Instead, she walks (or bounces) backwards until she bumps into something. She may ignore whatever she bumps into, she may feel it for a moment to determine what it is, or she may grab it angrily and yell at it. When it happens to be Sophi, can imagine:( Elli doesn't play like a typical child. She sits in a corner of the couch. Her right thumb is generally pressed brutally hard into her right eye. Her left hand is playing with a noise-making toy. She will often press the buttons in rapid succession, so the sounds are cut short and repeat incessantly. Elli doesn't eat like a typical child. Usually, she clamps her mouth shut and refuses whatever I am trying to feed her. I put it up to her mouth and she whips her head back and forth, refusing to let me get any of it in her mouth. When we are brave enough to encourage her to feed herself, she makes a terrible mess, wiping her hands on her shirt, the table, the wall next to her. Elli doesn't use the bathroom like a typical child. Elli doesn't talk like a typical child. Elli almost never looks or acts like a typical child.

Today, for a brief moment, Elli looked like a typical child. She was having a difficult time in her Sunday School class. The teacher had pulled her out into the hall, and Christi and I heard her from our classroom. Even though Elli's aid was doing her best to take care of Elli without disturbing us, it got to the point where we knew one of us should go help out. So I went and tried to calm her down. I sat with her for a moment in the foyer. She settled down somewhat and then asked for a drink. I helped her walk down the hallway to the drinking fountain. I wasn't sure if she could operate it by herself, but I put her up to the fountain and said, "Take a drink, Elli." She pushed the bar, leaned her head forward, and took a drink. It was that simple. For a brief moment, Elli could have been any child. She looked and acted just like her peers. I felt a jolt go through me. I looked at her and ached for that child. I wanted to freeze her there, at least for awhile. As always, Christi had dressed and fixed her up beautifully for church. She was wearing an ankle-length dress that made her look more grown up. Her gorgeous hair had just been cut to a darling length. She was my little girl. And she was normal. Then the moment passed. She shoved her face down into the fountain and and started gurgling in the water as it pooled in the basin. She continued to drink, but the stream of water was no longer lined up with her mouth. It hit her high on her cheek on dribbled down through her hair to her mouth. She continued to slurp for quite awhile and then, when I told her to be done and pulled her away, Elli was back. She backed away, bounced around, let out a yell of frustration. I was devastated. Even now, as I am recording the experience, I am wracked with sobs of...what. I don't even know. Disappointment? Empathy? Fear for the future? It was a poignant experience.

I don't know how to be the parent of a child with disabilities. The physical ones I feel pretty ok with. It takes a lot of time and effort, but the physical disabilities I can deal with. If someone can't walk, I can carry them. If someone can't see, I can lead them. If someone needs surgery, I can accompany them and stay by their bedside. But the cognitive disabilities are so hard. I am terrified of Elli's future. Right now when she jumps and hollers at church, it's understandable. Right now it's almost cute when she lies down on the pew and puts her feet up in the air. But what about 5 years from now. What about 15 years from now? What then? So today, when this brief vision of Elli as a typical child dissolved into Elli as she is right now, it was a bleak moment for me. Christi is a saint. 99% of the anxiety, sadness and angst she feels over Elli's condition is felt in empathy for Elli. Christi cares so little for herself and the challenges it creates in her own life. Instead, she is focused on how difficult it must be for Elli's pure, innocent spirit to be trapped in a physical body that doesn't function as most people's do. Me on the other hand? I'm pretty selfish. I certainly have empathy for Elli and ache for the challenges she has in her little life. But much of my anxiety, sadness and angst is for me. How am I going to deal with these challenges for the rest of my life? I think I have gotten better at focusing more on her and her needs, but I have a long way to go. I am sure that one of the reasons Christi and I were blessed with Elli was to help me learn these lessons. So at first, when this moment happened, I was aching for me. I felt sorry for the dad who had to deal with screaming, crying fits. I felt sorry for the dad who had to face 20? 30? 40? more years of diaper changes. I felt sorry for the dad who has seen pictures torn off their hangers and broken, the piano bench torn apart and holes punched in the drywall.

But suddenly the perspective changed. God spoke to me. He reached out in His unspeakable way. This was not a moment sent to torment me. It was a glimpse. A glimpse of Elli...someday. Probably not in this life, but without a doubt it was a glimpse of how she will be someday. As Elli was drinking, her back was to me. A beautiful, perfect little angel, getting a drink. I could not see her face. In our living room, we have a huge picture of Taylor, Parker, and Jesi. It is from a professional photo shoot. They are walking away from the camera, hand in hand in the beautiful Tennessee autumn leaves. There is something so precious about that view of them from behind. Jesi is between the two boys and is looking up at one of her brothers with a pure love in her face. The vision that God gave to me was of Elli, walking away from me in the same beautiful dress as she wore today. Walking through a field of yellow flowers. Running, even frolicking through this field. Her chains were gone. The fog that has encircled her throughout her life was lifted. Elli was free. Finally, her body fully reflected the beautiful spirit inside. Sadly, she didn't turn and look at me in the vision. Someday, I will meet that Elli. I pray with all of my heart that when that day comes she will look at me and be able to say "Thank you, Daddy, for your patience and love." I am not always as patient and loving as I should be or want to be. I will try to be better. I will someday see that little girl. I don't know what age her physical body will be at that encounter, but I hope I may have the chance to meet her as a little girl. A whole, sighted little girl who can run through a field of yellow flowers and into my arms. A little girl who can run into my arms, hug me ever so tightly and say, "I love you, Daddy." I thank God with all my heart for the atonement. For the sacrifice of his son that in some unfathomable way makes possible a perfect resurrection for each of us.

I love you, Elli.