On Noticing

Reese is 13 years old today. Our baby girl is no longer a baby, but pretty much a young lady. She weighs 70 pounds. She’s an adolescent. She prefers High School Musical to My Little Pony. She has a crush on her Physical Therapist’s son, Cody. When she was a baby, it was easy to hold her. It was easy to take her out in a stroller. People didn’t stare at her when she was a baby. When she was a baby, my back didn’t hurt. Her hip wasn’t out of the socket. She was still eating by mouth. Before Reese was born, I had never known anyone who had a child like her. I had no frame of reference for parenting a child who required total care. So we have learned about each other over the years. She is so unique in so many ways, even within the diagnosis of Aicardi Syndrome, that her pediatrician often comments, “When it comes to Reese, we just toss out the manual because she’s telling us, ‘you’re just going to have to learn about me.’” And I often think, isn’t that the way we all want to be treated anyway? The past 13 years have been a long process of learning to how to notice. Reese doesn’t communicate with words. But I can tell you what she is thinking based upon the position of her eyebrows. She doesn’t call me Mom, but I know the M sound she makes to tell me, Mom, my feeding tube is disconnected and my clothes are now soaking wet. She doesn’t greet people with a hello, but I know the sparkle in her eyes and the wide grin on her face that tells me, I really like this person in particular. She doesn’t tell me what TV shows she likes best, but every morning she looks at her TV and then looks back at me, then back at the TV to ask me, Mom, can I watch a show? Her belly laughs tell me, my angels are entertaining me (well, I can’t guarantee this one, but I think so). We have become students of Reese. And we have developed a deep relationship with her spirit by noticing the nuances. By paying attention to the way she communicates. And what a joy it is to know her spirit. In the process, she has taught me more about God than anyone else. She has taught me how to pay attention to God. What it looks like to live in constant communion. How to notice and how to listen. How to look for what God is doing in the joy and in the pain. She has shown me that God is always at work and is holding an invitation open for me to ask him what he wants me to see. Matthew 5 says, “Blessed are the pure in spirit, for they shall see God.” I’ve come to recognize that Reese is the essence of pure in spirit. She has not pretense, no ulterior motives. No jealousy, no entitlement. She’s never expressed anger or had a tantrum. She is only pure love. So somehow, I have had the fortune of being grafted into this blessing with her and have been able to see God with her. At the beginning, I felt so sad for Reese. I mourned her for the first year of her life. Now, when I see her, I just think, if only I could be more like her. If only everyone could be more like her. That’s the goal. I used to think that I needed to know everything and that Reese’s well being was all up to me. If I didn’t do it all right, then she would die. The weight I carried almost buried me. Today I see her life as a holy experience in which Mario and I take care of Reese with God, and God reveals to us some secrets that we were too blind to see before. The nature of our loving Father. The One who has carried us every single day for 13 years. The one who has whispered in my ear, it is time to call the ambulance. The one who also has whispered, she is OK, just wait. The one who tells me, savor this moment. The one who guides me and tells me, spend your time here and not here. It’s not what I expected, these 13 years. Not at all. I thought we’d overcome the odds and teach her to walk and talk. I thought God would miraculously heal her and I’d come to her crib and find her standing. I thought for sure her MRI would show a healed brain. I thought I’d be the poster mother for how to prove the doctors wrong. Instead, God invited me into something else. He invited me into the quiet space of noticing and listening and seeing and trusting and dwelling with him. One foot in front of the other. One moment at a time. With Him. And I can honestly say today, on Reese’s 13th birthday, that I would not change a thing. I would choose her over and over. And thank you, God, for every single day.