No Boundaries

Finally, by the middle-to-end of July, I feel like we’ve got the summer rhythm going. Boy, it took a while! For me, summer is one of those things that I know will hit, but like the first snowstorm, I am always surprised when it does. I wish Sherin and I had the time to take off to make it a true summer vacation, but in the absence of that, we turn to great camps to make sure our kids have fun and feel like they are doing something cool and different.

But summer has always proved challenging for Ben. Most activities and camps are either not suited for him or he doesn’t want to do them. This year, with the support of Wellesley Public Schools, we asked him to try something new–two weeks of Robotech camp at the Museum of Science. I’m not sure who was more nervous–Ben or me. The first week Ben’s class was “Designing Mario-like Video Games”–are you kidding me? Was this designed for Ben or what? And this week Ben is starting “Designing Websites with Special Effects”. Maybe he’ll take over this blog for me!

A week ago Monday, it was the first day of camp, and Ben heads to the Museum of Science with his nurse. I’ve spoken to the director so I know that 1) they are prepared for the wheelchair, walker and nurse; 2) they have assured me that the very cool MIT students who are teaching the course will make sure they include him in everything; and 3) I’ve coached Ben on how to approach other kids and introduce himself–because it’s been a long time since he’s been in a place where he knows no one at all.

After the first day, when Sherin asked him how it went, Ben said “I don’t like people staring at me”. Ah, dagger in heart. We’ve always been there to broker those introductions, explain medical symptoms, but also explain how normal it all is. We’ve now reached a place where this is Ben’s territory. He has to do it, and like any parent watching her kid do this for the first time, it’s really, really tough. I said to Ben, “You have 2 choices. You can either just go up to kids and introduce yourself and not say anything about your muscles or your trach, and let them just get used to you, OR you can introduce yourself and right away explain your muscles and your trach and ask them if they have questions”.

THIS IS SO HARD. I would hate to have to explain my eye color, the extra pounds I wear around my middle, the big scar on my ankle–and no one has ever asked me about this. But for Ben, he has to address this elephant in the room and then move on with life. It’s his future, so I know he needs to get used to it now, but I just can’t even imagine how hard that is to do.

But by the end of the week, he talked about new friends, how much he loved programming, and we even had conversations about what his life would be like if computer programming was his job. Holy Moly! What a great kid. I’m so proud of him. I spent Saturday morning watching him do some last minute programming changes to his game, Sugar Rush–where King Carrot has stolen the hero’s strawberry shortcake and the point of the game is to get it back, while dodging those flying carrot bombs–and was so impressed with his new skills.

Today, for work, I’m going to be in a new situation, with new people, explaining new ideas, and I’m going to take a lesson from Ben’s life and just go for it. I couldn’t have a better teacher in the world.