Honest Discussions

Last week, as Alex was winding down before bed, I overheard him telling himself all about his brain injury. I came in on the middle of the conversation he was having with himself.

"...and that is called a brain injury. I got it when I was born. It means that my brain sometimes doesn't work the way I want it to. That's why I have to work lefty..."

I didn't interrupt. I left him to himself to talk it out.

A year ago, when Alex was 2 1/2, on our way into Boston for his annual MRI, we explained to him the details of his injury, how it happened and how it was affecting his balance and left side. Since that time, he has had many questions and has overheard us discussing his brain with doctors, teachers, relatives and parents. Because we try to keep a positive spin at all times on our situation, to help keep us all encouraged and moving forward in a positive direction, and because we know that Alex internalizes every word we say about him, our conversations about his injury are all about working hard to overcome an obstacle that can be surmounted. Alex believes that with hard work, lefty will become as strong as righty, and his balance will eventually normalize. Occasionally, when he gets upset with himself for tripping or not being as coordinated as Izzy, we honestly tell him that he has to work harder than his sister because of his injury, but that he should not be afraid of hard work.

I have at times observed surprise in people who overhear how honestly we talk to Alex about his injury. Not every child is the same, and so perhaps this approach would not work with all children, but for one who can understand, talking about the injury seems to ease Alex's anxiety, and provide him with a greater sense of determination, especially when he observes the ease with which other children accomplish daily tasks. Putting on his crocs, for example, was a major, major hurtle. He was so frustrated when he realized that his younger sister could quickly put hers on without assistance, while he couldn't even get his toes inside without help. We kept telling Alex that when he was ready to start trying to put them on himself, he should tell us. For a while, he refused. We encouraged him to act independently, but did not push the issue. And of course, at some point, he decided he was ready to try. He can now put one shoe on no problem and he can get the other one started without assistance. Getting out the door used to be an incredible battle, mostly because Alex didn't want to sit for his shoes to be put on because his inability to put them on himself was a daily downer. Now that he can do part of the job himself, he loves to sit and get put them on. He leaves every day with a sense of accomplishment.

We spent a lot of the summer in NH this year, surrounded by cousins, aunts and uncles, great aunts and uncles, and grand parents. The kids play together, no matter their age differences. They run and swim together, go blueberry picking, hiking, share their toys and books, tell each other stories, go fishing. It is amazing how just being kids together, without schedules or planned activities, encourages them to grow. Alex keeps up, and all the cousins encourage him at every turn. When he falls running, they pick him up. When he is nervous about jumping into the water, they cheer and clap. When he has trouble holding a tennis racquet or fish rod, they guide his grip. No one is afraid to talk about his "lefty", or to encourage him to use his left side.

And so for Alex, his weakness in his left side has become a simple fact of life that must be dominated and overcome. This attitude should help him in the coming years, when playing sports in school will likely bring on another round of realizations and possible frustrations. We hope that building his self-esteem and outlook on life early will prepare him for the many stages of the emotional evolution that develops in children with health challenges. This early emotional strength is quite possibly the single greatest gift parents can give to their children, whether they face injuries or not, but especially for children who may find themselves in last place in physical activities. Yesterday, Alex told me that he wins every race he enters (in our track club summer series), even though he usually comes in last place. "Really?" I asked. "Yes, I won because I participated." Participation has become our summer concept, and our mantra.