On the wall of his bedroom, hangs a large collage of pictures. There’s Deane as an infant in his father’s arms, as a six-year-old on a carousel in Paris, meeting the Raptor – the mascot of his favourite basketball team, skiing with the family, tubing with his cousins and him with many friends.
I made the collage – one for each of my children – the Christmas before last. It was a pictorial summary of their lives up to that point. Both children enjoy looking at them and talking about the stories behind the pictures.
One of the highlights for Deane during our “weekend pass” was being back in his room with his stuff. Each morning he got up and looked at the collage, pointing to various pictures and talking about them.
What struck me looking at those pictures – a number of them taken barely more than a year ago – is that Deane looks like a little kid in them. Looking at the pictures, I realized that he is no longer that child.
My husband and I would certainly say that the experience of Deane’s surgery and subsequent rehabilitation has aged us. We’re certainly feeling old … er. Our daughter has shown incredible maturity in handling the continual flux of the last few months.
But most dramatically, Deane has grown up. There are physical changes. When you spend as much time focused on his legs as we have, it’s hard not to notice that calves are sporting dark hair that wasn’t there in the summer. I’ve also noticed that his voice – when he is upset – is no longer the high-pitched cry of a child. It is lower, fuller – and stronger.
Deane and I have butted heads on a number of issues during this process. When he disagrees with me or doesn’t like what is happening, he has let me know with that full-throated shout. What this weekend brought home to me is that that overpowering sound is my son becoming his own person.
Deane has created a sign – putting his finger to his upper lip – to indicate he has a question. We then have to fill in what the question is. Many of Deane’s questions relate to the scheduling or the sequence of future events. Every night before he goes to sleep he asks what is going to happen the next day.
As we lay out his day, he lets us know his opinion on those plans. This forces us to discuss the things he doesn’t like and suggest ways to make them more palatable. By engaging us this discussion, he is gaining control over what he does. Pretty impressive for someone who is non-verbal and dependent on others for all of his care.
Another thing in Deane’s room is a mixed CD – very old school, I know. He likes to play it in the morning as he is getting dressed. It includes the song Black and White by Michael Jackson, which begins with a father shouting at his kid to turn down the music. At the end of the exchange, the kid says, “Eat this” and cranks up the music. I listened to that introduction with new ears this weekend. I think I’m going to be on the receiving end of similar expressions of independence a lot more in the future.
Blogger’s note: Here’s the song, in case you’re curious.