Most days, Caleb’s cerebral palsy doesn’t really have an affect on me. Sure, we’ve had to modify the way we do a lot of things, but they’ve become second nature to us and I don’t really think much about it. When playing with our kids we try to choose activities that Caleb and Wyatt can both enjoy and we assist Caleb with some of the more physical activities so he can play along. Recently, we were playing t-ball in the cul-de-sac in front of our house. We had some bases laid out and the boys were taking turns hitting the ball off the tee and running to first base. Caleb needs someone to hold him upright so he can swing the bat. After making contact with the ball, Shane and I were both yelling to run to first and cheering him on. He grabbed the handles of his walker and turned it towards first base and took off. His arms basically supported his body weight and his legs propelled him forward so he wasn’t taking actual steps, but rather using his walker as a scooter of sorts. In therapy this is considered cheating, since he’s not really bearing weight and his form on his steps isn’t ideal. But something happened in that short distance from the tee to first base. Caleb’s legs kind of gave out, like they do when he’s tired and he slumped down to his knees. He started whining and crying, which we’re used to, but the next five words broke my heart.
“I don’t run that well!”
Seeing the words written on this screen, they don’t look so bad, but to hear them come out of his mouth. I was devastated. This wasn’t like a whining “I’m tired” statement that we sometimes hear when Caleb would rather do something less physical; it was like a realization of the difference between he and his twin. I know this awareness would come one day and we certainly have some difficult conversations in our future but to hear him sound so defeated about his abilities was a lot for me to handle. We dusted him off and he actually continued to play (and run) for about 30 more minutes so I’m probably reading into his statement way too much but it just stung. He was just so matter-of-fact when he said it, and using the word don’t instead of can’t also led me to believe that he might feel like he will always struggle to run. We always stay positive and encourage him as much as we can but sometimes I want to pout and cry and proclaim that it’s not fair that he has these obstacles that most kids don’t. He’s going to do amazing things but not without lots of effort and hard work. I wish I could spare him these challenges but all we can do is move forward and brainstorm what we’re going to say when the questions about his disability eventually arise.