The other weekend, Max rode in a fire truck in a parade. This would be pretty remarkable, except for the fact that he had done it the year before. Dave's dad lives in Tarrytown, NY, hometown of Ichabod Crane in The Legend of Sleepy Hallow and one of the most incredible Halloween parades around. Last year, Grandpa Michael ambled into the fire department and asked if Max could ride in a fire truck in the parade. They said yes—it was that simple. This year, Grandpa Michael asked again and once more, they said "Sure!"
Dave took Max, and kept texting photos. Max looked out-of-his-head happy; the firefighter he rode with, Melissa, couldn't have been nicer. Win! And yet, I wondered if this was a total Good Thing. Were we setting him up to think that he could get whatever he wants in life? I did my best to explain to Max that it is a really special thing to ride in a fire truck in a parade, but I am not sure he totally understood.
At times, we go all out to make our other kids happy, too. Ben likes slides of all kinds, and we drive to destinations near and far to find cool ones. Sabrina is into sneakers, and we enable her growing collection. Max's passions tend to be a little more involved. We have repeatedly gone through car washes a couple times in a row, bought him a whole lot of purple clothes, wandered throughout Home Depot to pick out appliances for his fantasy house in Orlando and, once, got his favorite firefighter and fire truck to show up at our house.
This desire to do anything to make Max happy dates back to his early years. Dave and I were so despondent about what happened to him that we tried to compensate for what we considered the bad hand Max was dealt. We no longer feel that way—Max is Max, and his disability is one aspect of who he is. But there is still a part of us making up for his stroke and now that Max is older, I'm more aware of this and how it affects him.
I think one answer is to find more ways for Max to give back so he's not just a recipient of goodness but a giver, too. Recently, Max gave a fire safety Powerpoint presentation to his class and he came home so proud of himself. Next weekend, we're making pumpkin pie for his favorite fire department.
I took Max to a program at his school this week; students from a local high school hang out for an evening of activities. When I returned to pick him up, a girl was pushing Max around on a PlasmaCar.
"Max, aren't you kind of old for that?" I said.
But, no. His friend was laughing and Max was laughing and who knows, maybe next time Max will be pushing someone around on that car.
No, he's not too old for the PlasmaCar-- he is acting perfectly appropriately as a teenage goofball. Acting like goofballs is what groups of teens do when grown-ups aren't monitoring them. Savor his ability to fit in!
ReplyDeleteHey Ellen! Jonathan would be sitting in that plasma car too if he could fit and have a girl push him around! ;) I can't believe these boys are 16 (well almost for Max!). I don't believe we ever do too much for our kids...if you didn't do the fire trucks it would be something else. I believe that we do for our kids what we are able to do and what is in our hearts. ~Sarah
ReplyDeleteUnusual indulgences for disabled kids tend to get out of hand mainly when the parents are either oblivious to the issue, or have made a firm decision that they literally don't care and will do what makes them and their kid happy. But you are aware and asking yourselves the right questions, which is way more than half the battle.
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