The waiting. When Gerry and I first began dating it was five months before I would meet Willi.
It was summer. I was driving down Chicago Avenue with my mother, I was teaching then and househunting. My cell phone rang and it was Gerry asking if I wanted to have dinner not just with him but with Willi.
I remember how nervous I was. Gerry had asked me to get him some milk, place it on the little tray where he was sitting. He was 3 1/2. I took the glass and placed with a smile and he made a tiny lunge with a growling sneer like he was a small pocket-sized tiger.
It wouldn’t stay that way long but I do remember that. I remember that I had to build his trust and play with him and show him that I was someone who cared about him. I had, for some inexplicable reason, these giant rubber ducks wearing sailor hats… A girl and one boy… and babies. My brother had seen them in a window in Boston and purchased them for me that Christmas. I don’t know why but one day I took one over to the apartment where they were living and when I drove away I stuck the duck out the window and waved it madly. He laughed and waved at it. Ever after that it would be something that we would do. I would drive away, one arm out of the window of my jeep, flailing a giant rubber duck in a sailor hat.
These times scroll across the surface of my mind: my 33rd birthday we got caught in a thunderstorm and I rolled down the windows of the car and drove through giant puddles pretending it was a roller coaster and it was fun,having him stick his hands out of the window; traveling to my mom’s place in the upper Peninsula of Michigan where he crawled up on my lap in the rocking chair one morning and I sat there barely able to breathe with fear that he would move, so rare was that moment; the few times when he has broken down completely vulnerable in my arms and sobbed, once at about seven and another at 12. He is cut from the same stoic Austrian cloth as his father.
He lay in the hospital bed awake but tired and in one of the down times after stimulation when he just needs to rest. He will still cry out in pain in his legs hurt, if the lukewarm soup feels too hot to his tongue. And it’s not the tiny roar the tiger cub anymore but of a young adolescent male.
I hovered uncertainly at his bedside and asked him if I could touch him. That I didn’t want to bother him. He sort of half smirked. I put my hand on his arm and told him how much I loved him.
It occurred to me that we are starting all over as if someone had turned back the clock 11 years.
The nurses downloaded and printed out something for us called the Rancho los Amigos cognitive recovery scale. It gives us an idea of strategies to use at every stage of his cognitive recovery. There are 10 levels number one being no response and number 10 being purposeful, appropriate: modified independent.
Right now our son is somewhere between levels four and five it seems– moving from the “confused and agitated” to the “confused, inappropriate and non-agitated”
Imagine your spirited 14-year-old on their worst day when they can’t wake up and they don’t want to talk to you and are agitated. Now amplify it. Even before his injury he might, in the moment of frustration, bark out a cry of anger. He goes to that place quite a lot now. If there’s pain in his legs at night, if his legs are uncomfortable in the wheelchair. He talks too of course but there’s a lot of ordering around that can be difficult for the person on the receiving end. You remind yourself that this is the result of the brain injury and that it is temporary.
The most frustrating part about a traumatic brain injury is that no one can tell you what the end of the road looks like. No one can tell you how long you’re going to be on the road or what the signposts might look like. I did some Internet research for the first time last night but it was too difficult. I understand why now, standing in the trauma center that very first night, shaking like a leaf, the young trauma nurse with the door swung out behind her turned to me and said “but there are always the miracles ”
My mind raced around and around, what does she mean? This is just a stupid skateboarding accident on the suburban street, what does she mean?
I’ve seen half a dozen monarchs in the last week after seeing none at all. A goldfinch in my front garden. It all seems so beautiful and incongruous. I think of the impossible migration of the Monarch. The trees in Michoacan heavy, draped with the fluttering wings of millions of butterflies. Those fragile wings that can be marred by a fingertip can travel thousands of miles..