During this process we've tried to find things that distract, entertain and show Amaya that she's not alone. We found pictures of other children with PFFD online, we bought a photo book (created by a mother who also struggled in finding photos of children with PFFD to show her child), and as we saw people in the media using braces or wheelchairs we made sure to point them out to Amaya. This was obviously not an easy task. We did see that Troy from High School Musical wore a knee brace as did his teammate Jason. When Amaya wore her knee braces she thought it was very cool that they also sported one.
When we began to prepare Amaya for her super hip, super knee procedure we were able to find pictures online of other children in a spica cast, and in wheelchairs. Although she ended up not having the spica cast, only a leg cast and a wheelchair.
This is where Glee comes in. One of the nice things about Glee, among many, is that they have main characters who are "different," for lack of a better word, from what society considers normal and beautiful. Artie was someone who Amaya could relate to, and in some ways look up to. Not only was he in a wheelchair like she would be for six weeks, but he also sang, had friends, danced and enjoyed life. He made being in a wheel chair not just normal, but cool as well. Each week we would sit and watch the show (this usually means me fast forwarding the "adult parts" and enjoying the music with her). We looked forward to the music and to see what Arite would be doing. When she was in her wheelchair she got gloves like he has, would wear her clip-on black tie and would maneuver around the house in her wheelchair like him.
A few weeks ago when the "Born this Way" episode aired we sat to watch it, just like all other weeks. I had never really payed much attention to the lyrics of that song, but during that moment as I sat there and rubbed her leg I couldn't help tear up and become emotional. Rubbing her leg with PFFD, enjoying an uninterrupted cuddle and listening to the cast of Glee sing "there's nothing wrong with loving who you are...I'm beautiful in my way 'cause God makes no mistakes...don't hide yourself in regret... Just love yourself." It was quite emotional, on many levels. I couldn't help but feel proud of Amaya. She has a level of understanding beyond her five and a half years. She has an acceptance and love for herself, just as she is. Which she transfers to those around her. This is something that adults still struggle with, but here she is, with a sense of reality, optimism and love. I have much to learn from her. She's amazing!