Our phone finally rang at 8 pm and I picked up to Ronan exclaiming "I flew in an aeroplane above the clouds!" His enthusiasm had only increased since his arrival at the cousins' home in New Hampshire. My mother has given him a wonderful gift in being able to connect with his cousins and share in the family event. I am so grateful that he can have this interaction even though we cannot provide it ourselves.
After the call, I continued to hold Riley in my arms. But Riley was different. He kept looking up at me expectantly. Looking up into my face and maintaining a gaze is not so easy for him. Riley's eyes have been damaged along with the rest of his body. He has optic nerve atrophy and neurological vision impairment which both make it difficult for him to see my face very well. But he kept watching me and when he knew I watched back, he smiled slightly and held it.
This communication is miraculous! Connecting with Riley is an amazing event. Yes, I do it every day. It's not the connection I can make with his brother: simple, immediate, easy. Connecting with Riley is challenging and amazing when it happens. It is almost as if Riley himself is somewhere "above the clouds." He is close. He is elusive. I know he is in there and I am rewarded by the brief moments I can really "see" him. At this moment I could really "see" him. This gaze had a purpose and I called John's attention to it. Riley's condition makes it very difficult to connect in this way... it was a huge effort. What was he trying to say? I saw in his face: I know you, I love you, I need some understanding. He was questioning too.
John knew what it was. "Where is my brother?"
You know your brother is missing this evening? We could not explain to him where Ronan was and how long he would be gone. Nonetheless, Riley was asking: "Where is my brother?"
The moment completely overwhelmed us. John wondered at how much Riley is truly taking in even though he cannot speak. How should a parent feel with this discovery. Once again I felt the tears in my eyes. Yes, we make the discovery now and then and each time it is hard to take. This must sound strange! The more he takes in the more heartbroken are his parents that he is trapped inside his body. How do we ever find peace with this knowledge?
Are there any other parents with answers to this? Please do share!
We are all special.... by Stacie Wiesenbaugh